tag:blogger.com,1999:blog-61229968552696961582024-02-19T01:57:05.625-08:00Keeping Up with Tiny TitanAnnystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.comBlogger71125tag:blogger.com,1999:blog-6122996855269696158.post-38960265363985531482023-01-01T09:26:00.006-08:002023-01-01T10:02:37.093-08:0025 YEARS of FASD and a Promise <span id="docs-internal-guid-973e0489-7fff-549a-2a3c-7d8864131085"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6djo4SNOQYOqqvLLO_ctBjf0C7MTRvcERUW2xAqwsHOCku1p5mIHa7uWaYCaGUwaveWA4R7hODyxOuQIg9y0dqVaQ47gJlUysP8YU8BBN5CpJOz1pDnrGtmQw5dJ59Ran809ossbQ0a99IaTHVWnNWuwfwjnsUTNkl-z0ogZabn9PKE2r6nLwrA/s716/a%20new%20begining.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="509" data-original-width="716" height="227" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6djo4SNOQYOqqvLLO_ctBjf0C7MTRvcERUW2xAqwsHOCku1p5mIHa7uWaYCaGUwaveWA4R7hODyxOuQIg9y0dqVaQ47gJlUysP8YU8BBN5CpJOz1pDnrGtmQw5dJ59Ran809ossbQ0a99IaTHVWnNWuwfwjnsUTNkl-z0ogZabn9PKE2r6nLwrA/s320/a%20new%20begining.jpg" width="320" /></a></div>
</span><span style="font-family: arial;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">As I woke shortly after the bringing in of the New Year I laid in bed thinking not just of the past year, but the past 25 years of our journey with our adopted sibling group. In 1997 six siblings who were separated in foster care for 5 years in three different homes joined our family. Our family is well versed with special needs because of our youngest biological daughter Becca who was born with severe Noonan Syndrome. We embarked on faith and our hope that we could help our newest children, just like we had with Becca. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">We took on our children with the promise of the legislation <a href="https://adoption.com/summary-adoption-and-safe-families-act-of-1997" target="_blank">The Adoption and Safe Families Act of 1997 </a>that helped remove barriers of waiting children from foster care into families with promised federal support for many. We finalized the adoption of 5 of the 6 siblings after one of the children was separated from the others due to his needs of having a home of his own.
TWENTY FIVE YEARS, a quarter of a century we have walked the walk of Parenting Complex Children and now Complex Adults. Adoption is not just for childhood, but for life. Childhood abuse, neglect, poverty, trauma. We adopted HURT Children. We now talk about the ACES, the Childhood Adversity Experiences. Those experiences my children knew well. But somehow we do not look deep enough. Where are the Prenatal ACES? What about the prenatal exposures they faced? Set up for adversity, trauma and before they took their first breath and the effects of those teratogens would affect each one of them. Our adopted children have Prenatal Alcohol Spectrum Disorders. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;"><span style="font-size: 11pt; white-space: pre-wrap;">The oldest we know the history as they tell us what they experienced. The oldest ones told us of the prenatal exposures to the younger ones along with the blood tests that labeled them at their birth for the illegal drugs that were in their system. But the drug that had the biggest effect on their lives is perfectly legal. I would fight to get them diagnosed. I found out from the children’s guardian ad litem and digging through our youngest birth to three files after fighting to get access, that the foster Mom had asked for an assessment for “Fetal alcohol syndrome”. The team and social workers said they did not want to diagnose her prenatal alcohol exposure due to it would make her UNADOPTABLE. She was two. Documents reveal that she was prenatal exposed to crack and cocaine positive. I would fight for her to be diagnosed with the confirmation of prenatal alcohol exposure by her oldest brother who told stories of his birth mother drinking with her swollen belly until she passed out. Years later we would find diagnosis for 4 of the 5 we had and the brother who was separated from the sibling set. The middle one of the sibling set said he was “too high functioning” to have FASD. They said he would have to worry about the survivors' guilt that he didn’t get affected. According to Ann Streissguth and her early findings about Prenatal exposures to alcohol he was the most at risk for adverse outcomes as he would struggle to live up to society’s expectations and would be misunderstood for his hidden challenges. FETAL ALCOHOL SPECTRUM DISORDERS is the umbrella term for the differing diagnosis for individuals affected by prenatal alcohol. (PAE). </span>
<div style="text-align: center;"><span style="font-size: 14.6667px; font-style: italic; white-space: pre-wrap;"><br /></span></div><i style="font-size: 11pt; white-space: pre-wrap;"><div style="text-align: center;"><i style="font-size: 11pt;">Studies have shown that a very high percentage of foster children have been exposed to alcohol prenatally and poly substance exposures like with my children are common. </i></div></i></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /><div style="text-align: left;"><span style="font-size: 11pt;">Back when we adopted the children, we knew that love and stability was not enough to heal our children. They were a special needs adoption. We found ourselves with a small adoption stipend and Medicaid to help pay the costs of their “special needs”. But what I didn’t realize was that we were in the no-man’s land of our society's failure to help children with severe mental health needs where we were supposed to find services. We had to fail first to get help. They had to fail school enough to get a label. They had to have behavior problems to get support. They would have to fail enough to fall into psychosis, be suicidal or violent to get emergency support only to be discharged after things settled down. We would have to fail enough as a family and parent to get outside help which often did not exist. Blamed for their behavior, blamed for our parenting, setting up the entire family for dysfunction and falling into secondary trauma for the entire family. I would find myself in the no-man’s land of how prenatal alcohol exposures do not fit in the mental health fields. When we adopted our children we promised to find them stability and help. But we were set up for failure. Because the system does not recognize FASD as a disability and a qualifier for much needed long term supports.</span></div><div style="text-align: left;"><i style="font-size: 11pt;"><br /></i></div><div style="text-align: left;"><i style="font-size: 11pt;">The promises of help for kids from the care systems who are Prenatally exposed to alcohol may never find them and most may never find diagnosis.</i></div></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I would find myself learning from other older foster and adoptive parents, reading books on fetal alcohol syndrome and becoming a fierce advocate for my children just like I had to with Becca. Back in 2002 I attended the first task force on FASD. I founded with another parent a facebook group on parenting kids with FASD. I have journied with thousands of parents like myself. Our children may have prenatal exposures to legal and illegal drugs, alcohol, other teratogens, prematurity, trauma, genetic and epigenetic disorders and they need support and understanding. The continued trauma of poor fit and reactive help and the lack of supports tailored to FASD means that they continue to build layers of trauma and its reactions. </span></span></span><div><span><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></div><div><span style="font-family: arial;"><span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I once asked someone where the evidence based therapeutics for FASD? He told me we were? I said we will have lost an entire generation of kids who didn’t get help. That was 2003. He said that it takes time to turn the ship, to research and make change. Here we are over 20 years later and we do not still have any UMBRELLA of support for those affected with an appropriate label. Did you know that even Fetal Alcohol Syndrome is not a recognized disability when you can see the exposure? FASD is not just about learning and brain damage? Over 428 diagnoses have been found to be co-morbid with prenatal alcohol exposures. But for those with Prenatal alcohol exposures will find their diagnosis under ADHD, Autism, Bipolar disorder, learning disorder, intermittent explosive disorder, intellectual disability, and a plethora of any of the co-morbid labels. And the medical pieces will be left out. </span></span></span></div><div><span style="font-family: arial;"><span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></span></div><div><div style="text-align: center;"><i><span style="font-family: arial; font-size: 11pt; white-space: pre-wrap;">It's time that </span><span style="font-family: arial; font-size: 11pt; white-space: pre-wrap;"><b>we see FASD! </b></span></i></div><span style="font-family: arial;"><span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6sHHf-XKAYEu-OGeMpS9ZJi_UtJXXknbuMoLe_9s_zzFPZvrUOdszkfOHAu9m02jSm6X2KeAexJ9dz9PC0JE5aHEYKVoK2lVqU_wpzxrgzzcssO9WkqjuMaFeJVPSJFZ0YEwT_Wk-WqCeJHlCvAHOl1Pzfvfr7uVLx6zo-iiAQNy6SfVTuPdd_Q/s2048/mackiepreemie1.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1387" data-original-width="2048" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6sHHf-XKAYEu-OGeMpS9ZJi_UtJXXknbuMoLe_9s_zzFPZvrUOdszkfOHAu9m02jSm6X2KeAexJ9dz9PC0JE5aHEYKVoK2lVqU_wpzxrgzzcssO9WkqjuMaFeJVPSJFZ0YEwT_Wk-WqCeJHlCvAHOl1Pzfvfr7uVLx6zo-iiAQNy6SfVTuPdd_Q/s320/mackiepreemie1.jpg" width="320" /></a></div><div><span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></div><div><span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></div>Some questioned our sanity when we started over again with the fostering of a frail little boy who was 17 months old adopting him at 3. He had the hallmarks of Fetal Alcohol Syndrome. I knew that he had many more challenges than they had found. Our second time around a little guy who again would change our lives. This time, I had the knowledge of Becca’s medical complexity and over two decades of advocating and navigating the medical world and the years of raising our kids with FASD and the support and experiences of other parents walking our FASD walk. This time I would find myself navigating both systems at once as McKellan would have many many medical challenges from his prenatal exposures but also genetic and epigenetic challenges we are beginning to understand affect these children from the care systems.</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /><div style="text-align: center;"><i style="font-size: 11pt;">I am looking back. Twenty five years of walking with FASD. </i></div></span></span></span></div><div><span style="font-family: arial;"><span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></span></div><div><span style="font-family: arial;"><span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The promise of diagnosis, support and HOPE for those affected by FASD in the foster care, kinship care and adoption world has not happened. Until we have an UMBRELLA under the US Care systems where they acknowledge Prenatal alcohol exposure diagnostics as a DISABILITY these children and families will continue to be failed.</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">A step in the right direction had been introduced in Washington DC.</span><span style="background-color: white; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;"><span face="Roboto, sans-serif" style="color: #3c4858;"><span style="font-size: 11.5pt; white-space: pre-wrap;"> T</span></span><a href="https://nofaspolicycenter.org/the-fasd-respect-act/" style="color: #3c4858; font-size: 11.5pt; white-space: pre-wrap;">he FASD Respect Act (HR4151/S2238) </a><span face="Roboto, sans-serif" style="color: #3c4858;"><span><span style="font-size: 11.5pt; white-space: pre-wrap;">was on target to be passed as a stand-alone bill on December 22, 2022 in the Senate with language agreed upon by bi-partisan Senate HELP committee leadership and the next day in the House but was blocked at the last minute by one Senator. </span><span style="font-size: 15.3333px; white-space: pre-wrap;">
</span></span></span><span face="Roboto, sans-serif" style="color: #3c4858;"><span style="font-size: 15.3333px; white-space: pre-wrap;">
In 2022 the State of California passed SB-1016 which made Fetal Alcohol Spectrum Disorders a qualifying diagnosis for special education under the category of Other Health Impaired. The first state to recognize FASD as a condition to qualify for much needed support and help.
<div style="text-align: center;"><i>Most children with prenatal alcohol exposure will never find diagnosis, support or understanding under the FASD labels. We can do better.</i></div></span></span></span></span><span face="Verdana, Arial, helvetica, sans-serif" style="background-color: white; color: #333333; font-size: 18px; letter-spacing: 0.02em; white-space: nowrap;"> </span></span></div><div><span style="font-family: arial;"><span face="Roboto, sans-serif" style="background-color: white; color: #3c4858; font-size: 11.5pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span face="Roboto, sans-serif" style="background-color: white; color: #3c4858; font-size: 11.5pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">It is 2023, a quarter of a century 25 years of rocking my Red Shoes fighting for my children. I am still parenting, supporting my now adult children as they walk their walks with their differing challenges from their prenatal exposures and trauma. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">But it doesn’t end at l8. It gets even more difficult for us and them. My daughter paid the price with her life of PRENATAL alcohol exposures. We do not even yet talk about the effects of prenatal alcohol on the body. She died from complications of end stage renal failure at 34 and still misunderstood. I write as I watch my best friend's daughter fighting for her life and a new kidney. FASD is REAL and it can be heart wrenching.
</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">
</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></div><div><span><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">It’s time to start writing again and fighting for those with FASD. Did you know that 1 in 7 pregnancies have a prenatal alcohol exposure. It's not just kids from the care system that are struggling, but it's widespread. But for my kids, they had the promise of the FEDERAL GOVERNMENT when they took them from their Parents to help them have a better life. And that means we need to create the support and understanding they need and that begins with passage of the FASD RESPECT ACT for the kids who are in our care systems and beyond.</span></span></div><div><span><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></div><div><span style="font-family: arial;"><span style="font-size: 14.6667px; white-space: pre-wrap;">And BIG ALCOHOL does not want us to raise our voices. It's a 6 billion dollar a month in sales piece of our economy. They put a label on the bottle that turned it into a personal responsibility issue and they really do not want any more research about the effects of prenatal alcohol. </span><br style="font-size: 14.6667px; white-space: pre-wrap;" /></span><span><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">
TWENTY FIVE YEARS, of experience and too much failure... It's time to write again.</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">
Anny<br /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span><br /><br /><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></div>Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-38768254709260279852021-01-22T14:56:00.002-08:002021-01-22T14:56:59.038-08:0031Years Ago, Looking Back to Quarantine and The Lessons That Prepared Me For The Pandemic.<div class="separator"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfs1n74ZjIQeNcGMd9gi9UcOdGtpT5IDx6B2luo8moQFnDdIypaelO-2LlQVYUExrLHucfTzle6nATUz-HNdKZEz_DoDVzUndaAIuDBKksnKsEy1LBlxU6_3fP4V2E3a-9ouiHdopiTg/s640/IMG_3245.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfs1n74ZjIQeNcGMd9gi9UcOdGtpT5IDx6B2luo8moQFnDdIypaelO-2LlQVYUExrLHucfTzle6nATUz-HNdKZEz_DoDVzUndaAIuDBKksnKsEy1LBlxU6_3fP4V2E3a-9ouiHdopiTg/s320/IMG_3245.jpg" /></a></div><br />
<br />30 years ago, my tiny Becca was in heart failure, no immune system and living in our home Pediatric Intensive Care unit with her 16 hour a day nursing. She had fought and survived despite her being ruled out for a heart transplant and due to her immune disfunction and high white blood counts (we now know that it was JMML a cancer sometimes seen in those with complex Noonan Syndrome).<br /><br />Any HOPE for her survival was if they could fix her severe pulmonary stenosis and ASD, but with her severely thickened heart muscle, she may not survive the surgery. <br /><br />She was scheduled for surgery and the day before her brother Ian broke out with chicken pox. Calling the nursing agency and hospital and soon everyone was busy trying to figure out what to do. Becca was at home at pediatric intensive care level of care. The fact her siblings all but Kristy, had not had chicken pox had kept Becca away from seeing her siblings for her entire hospitalization but for one short gowned, masked up visit in a conference room carefully arranged by the hospital staff. They planned this visit, not expecting tiny Becca to survive. They had a sister and they needed to at least meet her once.<br /><br />Now the dreaded pox had intervened again. Becca's heart was critical and a delay would worsen the already precarious trajectory she was on. The Red Cross had been called to get her "immunities" to the chicken pox. Checking in with the experts on her immunology team, recommended seeing as Chicken pox is highly contagious rash illness that is transmitted from person to person by direct contact or by airborne spread from respiratory secretions or aerosolized fluid from skin lesions. The kids would have to be removed from the house. Ian has chicken pox, according to the experts, we cannot avoid spreading it in the house. 65-85% of household contacts will become infected. The incubation period is 10 to 21 days. And the kids could be infectious 1 to 2 days before they have any sign of a rash.<br /><br />Learning that infants, and immunocompromised persons are at higher risk of complications which we knew Becca already had, she was in heart failure and medically fragile, she was at risk of secondary bacterial infections (which she already battled with several rounds of systemic staph and bacterial infections), dehydrations, pneumonia, encephalitis and all which may result in death which she was already on the edge of. The decision was made to move our kids out of the house (all but Kristy) as she had already had chicken pox. Packing the kids, moving them into my Mom's house and then bleaching our entire house and opening all the windows in March in Minnesota. We began our quarantine of Becca.<br /><br />Thank God for Becca's 16 hour a day nursing care. I juggled home and the sick house at my mothers. I couldn't just drop off my 3, 5, 7, and 9 year olds without helping. Mom was already babysitting my 1 year old niece in their two bedroom townhome. I would leave the nurse with Becca and run down to Mom and help out getting home before shift change at 3. Shedding my clothing in the garage, then to the shower and afterwards scrubbing and disinfecting the only bathroom in the house. Nothing I wore could come into the house. Lessons I learned would give me a crash course in infectious disease control and how to keep Becca safe and get her to surgery. Every 21 days another child would break out in the dreaded pox and of course no two at a time to get this over with. My niece would get them with Marissa. A toddler and my 5 year old would get a very itchy feverish case. My siblings would come home from college and walk into a pandemic. They both would get the pox and have to delay their returns to the college dorms.<div><br /></div><div>The kids were still at Mom's. Every 21 days like clockwork someone else broke out. I had to keep those who were in the middle or end of the chickenpox epidemic in continued isolation. Slowly one by one they could come home but 7 days after the last pox was crusted over. And with Becca's fragility we just kept them at Mom's until Becca's surgery. My laundry had to be taken to the laundry as it couldn't be done in my laundry room where the furnace could take it airborne to her nursery. I was still stripping and scrubbing the bathroom some days twice a day as I had to head to Mom's twice a day to help with morning routine, come home for shift change, feed the kids at home and then down to Mom's to help with dinner or saying goodnight to my children. <br /><br />Becca's surgery would happen finally after 30 days at the end April of 1990. 10 months old, she would get a chance to live. Knowing the odds that she would not survive the surgery were high. She would spend 14 days in the Pediatric Intensive Care unit and the little known complication of chylothorax and her damaged lymphatics would make her critically ill again. Fevers, infection and more. But the Tiny Titan, fought on. Testing on her immune system showed now she was severely immune compromised. Virtually NO immunities. Infusions of IVIG hopefully would protect her from the normal viruses that circulate and a simple cold could be a death sentence for Becca.<br /><br />Becca was barely home when the hospital would call to say Becca had been exposed to measles in the hospital and her IVIG was quickly started. I began the road of understanding what it meant to be a parent of a medically fragile immune compromised child and she had 5 siblings. Chicken pox quarantine, measles exposures. Flu Shots for everyone who would come into contact with Becca were mandatory.
<br />We have to protect her or she will pay a huge price. </div><br /><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXXcTNhdFrz8CfPQbsOe09WwJ_adc0gktLcuGC_IeeDB8acF9v5UQR0vsm0w078r5jafp4Sjt4Kf52hHFtFtpDLA8UWLxXWRfJqX9ozaSCFQ0lTZ12V1A97Vypuj-xIPodK83fMl9JQg/s960/1465264_10201802448316699_1011267164_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXXcTNhdFrz8CfPQbsOe09WwJ_adc0gktLcuGC_IeeDB8acF9v5UQR0vsm0w078r5jafp4Sjt4Kf52hHFtFtpDLA8UWLxXWRfJqX9ozaSCFQ0lTZ12V1A97Vypuj-xIPodK83fMl9JQg/s320/1465264_10201802448316699_1011267164_n.jpg" width="320" /></a></div></div><br /><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"></div><br /></div><br /><div>Becca is still medically complex. Living at nursing home level of care in the community under her long term care support waiver and medicaid care support. She is blessed to have her funding and the choice of where she lives. Just like when she was a baby a waiver brought our daughter home with care support after the fight of the trailblazer Katie Beckett. We went on to foster and adopted another medically fragile child and God found Becca a little brother who needed a family who could help him like we did Becca.<br /><br /></div><div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlsMF0VmKRW1Jyd3PkG_LwSaRPDlVmQWYfBnEJZGoDqxzpUtlfw8bDP1YtW3cqX4L2q3Yk_Jv6A3GrB9KekzsSKaQMexgh_GYIXepCyoTejgVfMmsYmphFFfBsDOwE8PBG6uXp1nAgSQ/s958/115896979_10220851840299593_7787183088856107408_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="958" data-original-width="958" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlsMF0VmKRW1Jyd3PkG_LwSaRPDlVmQWYfBnEJZGoDqxzpUtlfw8bDP1YtW3cqX4L2q3Yk_Jv6A3GrB9KekzsSKaQMexgh_GYIXepCyoTejgVfMmsYmphFFfBsDOwE8PBG6uXp1nAgSQ/s320/115896979_10220851840299593_7787183088856107408_n.jpg" /></a></div><br />When I saw the leaked video from China, New Years weekend last year, I began to watch and prepare for the pandemic on the horizon. Stocking up knowing that we may need to hunker down. Becca had two surgeries, one in January and one on March 6. Normally, I do all our follow up care and medical visits in the spring, summer and fall, avoiding the hospitals in the winter. Clinics and hospitals are not a safe place for people who are at risk. With these surgeries, she was in protective isolation from the middle of flu season. Masks for her and for staff. Reminding staff to wash their hands before examining Becca. The return to get the stitches out of her new feeding tube would not be able to be taken out. As the hospital shut down for elective care. Out of the box medical care, Doctor Dad's nurse and the PA from Madison with Dad assisting they got her care done and documented her follow up. We were now home for the duration. But Dad worked in the hospital and made the hard decision to retire early or he couldn't come home for months or years. <br /><br />We are at home, telemedicine has been a Godsend for people like Becca and her little brother who is also medically fragile. He like Becca only goes to school when everyone else is healthy. The note on our front door warning people that "Medically fragile children live here" Do not enter if you have a cold, wash your hands, take off your shoes.<br /><br />We are now home in "our bubble" of 4. Fortunately her brother and sister and their families were also in extreme bubbling for the summer and we had a chance to see them once or twice. Planning ahead for contact and keeping Becca safe. We are at home, the curbside pick-ups, the now society wide adaptations is making it easy for us to get what we need and stay safe. I just hope those do not go away as the pandemic wanes for those with disabilities who struggle to navigate the greater society.<br /><br />The lessons of the years with Becca helped me be well informed in how to shield her and our family.<br />The COVID19 media and the concrete language of "Stay home, Stay safe." cause confusion for Becca and Mac. They are fully aware of the repercussions of getting sick. They lost their grandfather, they nearly lost their aunt, their 'favorite' protective brother was hit hard and blessed to survive. But the anxiety of going out is now our battle. Daily rides, visiting the horses at the stables, avoiding people at all costs, virtual rides at Disney and Universal Studios. Virtual school does not work for the visually impaired boy. Technology is our lifeline to the world and connections. Going for a ride will trigger Mac to have a tic outburst will follow. "F....... "Que-own-a-virus". You wreck everything. I want to see my friends again as we drive by the school. Driving by the movie theater, another outburst or sad tears, I want to have a Mackie's movie night with everyone again. Driving by Culvers, a longing "I want to eat out again." "I want to go look at the toys at Target again." "The Que-own-a-virus needs to become extinct like the dinosaurs!" and Mac wants to invent a laser to "zap that pesky virus out of the atmosphere."<br /><br />As the Covid 19 vaccine is coming out, Doc and I were able to get our first miracle vaccine as medical care providers for Becca and Mac. But that does not mean we can let down our guard. No one seems to know where Becca fits in the tiers of vaccine roll-outs? Then there is Mac. I read the other day a newspaper article where the same Nurse Practitioner was talking about there begin testing of the vaccine on children. It will take months and more time. Patience and shielding will continue.<br /><br />I am hopeful that someday we can see our family, friends and others again. But as you get back to your lives of normalcy, Becca and Mac and others like them are still at home or vulnerable every day of their lives. If you are sick stay home, if you are out, do not sneeze on someone. The Coronavirus has taught us to have health awareness and I certainly hope the cart wipes, hand sanitizers and more do not disappear.<br /><br />In the meantime Becca and Mac are sometimes patiently waiting for the Coronavirus to become extinct and we can safely open up again. <br /><br /><div><br /></div></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6YdvNuKVNPgrXvJOToGcv38rb1ZKg-s020VoByRXZ9h0QCAPwe0LCecDSTKoXiC6FhViuZYNb3rS27qla5MkhTQY4kISTJha4AVtZ165KwH_2cXODgyxYJ6seqAdUFjV_MAvjG7BH8w/s589/11911007_10100405189564355_1576450068_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="589" data-original-width="392" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6YdvNuKVNPgrXvJOToGcv38rb1ZKg-s020VoByRXZ9h0QCAPwe0LCecDSTKoXiC6FhViuZYNb3rS27qla5MkhTQY4kISTJha4AVtZ165KwH_2cXODgyxYJ6seqAdUFjV_MAvjG7BH8w/s320/11911007_10100405189564355_1576450068_n.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJYc97LbjadeKqKdhTmSQEBWQzPkOQTZaYLV6qgtjcI9Pq48tcRhkT2gHEK7-vgpEBxbTxcNhSsMe65YsTKhbFg_8BoTs43Ly__IwIAw5nzI6qhyHTWppSsNWAo6u1dAanKfB0aPGprw/s591/11874061_10100405188855775_577871415_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="591" data-original-width="393" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJYc97LbjadeKqKdhTmSQEBWQzPkOQTZaYLV6qgtjcI9Pq48tcRhkT2gHEK7-vgpEBxbTxcNhSsMe65YsTKhbFg_8BoTs43Ly__IwIAw5nzI6qhyHTWppSsNWAo6u1dAanKfB0aPGprw/s320/11874061_10100405188855775_577871415_n.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div>Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-16618537454089586292019-12-31T21:56:00.003-08:002019-12-31T21:56:51.881-08:002020 Writing Again! Launching "Just Another Day with My Tiny Titans"<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioXfQWX6XWej79QjbUrYByk7D1_kE7O7GE6Y1xvmqvISH0oWIBA0bJv6qZH9GYwEC_ip3vPVol-lZOQ9KspoFIcBz8UvF69_xNiuX3Mgx1TGKegEFgR1o3GGJzuvY3lVFf5OQlzxzWig/s1600/tiny+titan.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="370" data-original-width="240" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioXfQWX6XWej79QjbUrYByk7D1_kE7O7GE6Y1xvmqvISH0oWIBA0bJv6qZH9GYwEC_ip3vPVol-lZOQ9KspoFIcBz8UvF69_xNiuX3Mgx1TGKegEFgR1o3GGJzuvY3lVFf5OQlzxzWig/s320/tiny+titan.jpg" width="207" /></a></div>
<br />
As 2019 comes to a close, we all reflect on the past year. This year has caused me to reflect on my journey, my family and my life. I think the decade milestones hasten the reflections. It has been 30 years since life changed in an instant when a baby was born and changed everything. Crisis and survival helped me realize just how strong I can be and the things I would find myself having to do, I never thought myself capable of. I cannot believe it has been 30 years, but even more I cannot believe that the teeny tiny fragile baby who doctors gave no HOPE and her medical difficulties stacked against her would still be here. But the Tiny Titan, not only survived but showed us the important things in life. She taught us to smile through all the pain and to never ever ever give up and that you "Just do it". To do whatever it takes.<br />
<br />
Our Tiny Titan taught us resiliency, patience, that everyday is a precious gift. When a parent has a child with a poor prognosis, a parent learns in time to cherish each precious moment. It has been 30 years of living each day on the roller coaster that life with a medically fragile baby, child and now adult. Life is never dull, but it is full of blessings and challenges. After 30 years I can see the pieces of the tapestry of our lives with Becca, my children, my friends and special needs families who I have come to know and love. Our children are tiny teachers who change us for the better.<br />
<br />
Becca changed everything. Our lives were turned upside down. Instead of tearing apart our family, that tough road made us stronger and we found out what we are truly capable of because we had no choice. We learned to fight and press on despite the odds stacked against us. Becca showed us the way. I made a promise early on that I would make something good happen out of all the pain. To help others not be alone and have someone who would walk beside them. Paying it forward the help we received along the way. Moment to moment, day by day, week by week, year by year time would march on. Living in the moment is a gift. I had a hard reminder this year of that fact. My daughter Shay passed way and I had to say goodbye to my daughter. I joined the club that no parent wants to be part of. Her holiday ornament hangs on our tree and I believe my daughter is free from the pain of this world and in a better place. <br />
<br />
In 2006 I wrote our story, Tiny Titan, Journey of Hope. Part I our story with Becca and part II the story of our adopting 5 siblings who needed a family, residency with eleven children and the crazy journey that God helped us through. People told me that that book helped them feel not alone and that someone else walked their walk. I have been mentoring and working with parents for many years in the special needs world and in the foster, adoptive worlds as well. Our families are unique. Our children unique in each and their own ways. Social media is our lifeline to meeting and knowing others who walk our walks. Supporting and encouraging each other while raising our extraordinary children.<br />
<br />
Others have asked me when am I writing a followup to the story. But life usually gets in the way, but even more, where would I start.? I am not certain I can go back and catch up the years. A few people have said my days are a reality TV story. But I would never want cameras in our lives. I can write, I can share the reality of life of living with this family of mine.<br />
<br />
I had written long ago when the internet was just starting to explode on a site that would become Oxygen Network. How do you handle adversity? That story would catch the attention of New York and Mom's on line. I worked with the producers to send in pictures, tape record me reading the story and it sat on the internet "Our Stories" for years. It caught the attention of Oprah and we were to appear on a story about Extraordinary Families when all of a sudden Becca would put a pencil through her palate and develop a systemic staph infection and she landed in the hospital instead of heading to Chicago. They followed up for a couple of years, reminding me that I needed to write "that" book.<br />
<br />
It took me several years to have the courage to write and the NaNuWriMo November Writers challenge helped me begin. Every Tuesday morning and every Thursday morning after sending the kids off to school and Becca was still sleeping in, I write. One day at a time until I hit a writers block. I second guessed myself. I was "Just" a Mom, I was not a writer. I had no idea how to publish a book.<br />
<br />
We had been working hard on our family project with Backpacks for Kids and the day I sent out over 1800 backpacks and the news channel had crashed the phone lines at social services, we got a phone call from People Magazine. They were doing a story about "Kids Who Care." The writer sat at my kitchen table and was asking questions about the underlying story she stumbled on to and told me I needed to "write" a book. The writer from People Magazine, the producer from Oprah and so many others. I knew at that moment I needed to finish my long procrastinated biography. I pulled out the first two chapters and let her read it. She encouraged me to finish my story and called to check up on my progress. I had prayed to God for the people to help me and he actually found "People Magazine"<br />
He would find me the people to help me get that book to press. Through that prayer found me a friend of the heart and our stories and more stories would be be woven together. But that Story is for another time.<br />
<br />
I have been called to write again. No more procrastinating. I just finished another book and I am going to find the time to write again. I need to be intentional and commit to doing it. I learned the power of sharing our stories. From helping others, to advocating for our kids and families. In our communities, in our state capitals, in Washington DC. Writing and speaking has the Power to make real Change. Though slow moving, when I look back the three decades I see so much progress, but we still have so far to go.<br />
<br />
Families have a voice and sharing our "Day to Day challenges and HOPE, we offer a glimpse into our lives with our children and families with extraordinary needs. If we do not share them, how can they understand how to help us to be the village we need them to be.<br />
<br />
2020 is upon us and I know it is time for me to write again. So here it goes. I will use this blog to host my daily blog posts of the Day to Day of Life with my Tiny Titans; Becca and Mackie and our family. I struggled to title the blog and found many of my ideas taken. But then it hit me.<br />
<br />
"Just Another Day with my Tiny Titans".<br />
<br />
As I close tonight and I share my resolution to begin my next writing journey. Writing and 2020 here we come! I will be back tomorrow with sharing Just another day.<br />
<br />
Welcome 2020 and I pray that you and your family will have a blessed New Year!<br />
<br />
Anny<br />
<br />Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-91627529110829128432019-12-19T07:12:00.000-08:002019-12-19T07:17:12.741-08:0030 Years Ago. The Christmas That I Can Never Forget. HOPEChristmas is a time of HOPE. God sent a tiny baby into our world to change our world. For our family, Christmas sent angels to give our family HOPE and HELP when we most desperately needed it. It has now been 30 years since that Christmas and that Christmas can never be forgotten. A promise to pay it forward is being fulfilled not just at the holiday but everyday as it has changed us for the better. <br />
<br />
This Christmas Story has been retold time and time again. Shared with parents who have children with Noonan Syndrome like Becca and others who just need to be inspired. The story has been shared in magazines, news casts and even recreated as one of The World's Most Astonishing Stories on Nippon TV in Japan. Miracles in those shares. Christmas is the time of Miracles and offering HOPE to those who are struggling. <a href="https://povertynewsblog.blogspot.com/2006/12/battling-back-from-poverty-christmas.html?fbclid=IwAR3yI7XO9yKnhjsdaPG7qw17jL2C87vh-mzwbaxSoU-xxl2CdoufDPS6BSo" target="_blank">The Story Continues...</a> New Christmases, our family grows, Jim finds a new career, I found my voice and best of all Becca has grown and we have learned much from our tiny teacher.<br />
<br />
May you find your Santa to this World with Kindness and if you can reach out to someone who needs a hand up this Holiday season. Listen to the Whispers of God he will show you HOPE and HEART.<br />
<br />
Merry Christmas from our family to yours.<br />
<br />
Anny<br />
<br />
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<span style="background-color: #eeeecc; color: #333333; font-family: "trebuchet ms" , "verdana" , "arial" , sans-serif; font-size: 12.61px;">Chapter 9</span><br />
<span style="background-color: #eeeecc; color: #333333; font-family: "trebuchet ms" , "verdana" , "arial" , sans-serif; font-size: 12.61px;">Christmas</span><br />
<br />
<div class="separator" style="background-color: #eeeecc; clear: both; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6PsA3m8Mim7igaD6hlHSWVXrN1nodxjRIjAcW0ZyT_ewfDYzmsjD7B94LosyVDFAdDUouBBeiQALxv1pHOgOrN1qXM69wdZXGlpXcCoSGdoTbQtMyopnZ-kQz2G2SBnVwJFozSrbi1Q/s1600/beccasanta.jpg.w240h251.jpg" imageanchor="1" style="color: #223344; margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6PsA3m8Mim7igaD6hlHSWVXrN1nodxjRIjAcW0ZyT_ewfDYzmsjD7B94LosyVDFAdDUouBBeiQALxv1pHOgOrN1qXM69wdZXGlpXcCoSGdoTbQtMyopnZ-kQz2G2SBnVwJFozSrbi1Q/s1600/beccasanta.jpg.w240h251.jpg" style="border: 1px solid rgb(187, 187, 187); margin: 0px 0px 5px; padding: 4px;" /></a></div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<span style="background-color: #eeeecc; color: #333333; font-family: "trebuchet ms" , "verdana" , "arial" , sans-serif; font-size: 12.61px;">I sunk into despair. The holiday was fast approaching and Christmas was the last thing on our minds with Becca critically ill in the PICU and everyone else sick too. There was no money for gifts, and there was no time to buy or make anything. I was sick, tired and depressed over the circumstances we found ourselves in. If the phone rang, I was afraid to answer it because it might carry the news that Becca was worsening or no longer here. The phone was a constant reminder of trouble. It rang with bill collectors waiting for money. It rang when medical personnel had more dreaded news or another crisis for Becca. My emotions rose and fell like tidal waves, up, up, up and down, down, down. I tried not to think; not thinking was how I coped. It was like the stairs I ran at the hospital, up and down, and then I’d stop and sit, empty and mindless. I could not think about my children going without gifts at Christmas, but our lives were impossibly out of control. We had fallen into a dark hole due to no fault of my innocent children. At any moment they were going to lose their new baby sister. They were caught in the tidal wave of catastrophic illness when they needed a Santa most to give them hope. How would I explain to my children that Santa forgot them?</span><br />
<br />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
I was used to planning ahead and beginning in July bought two presents each month to cover birthdays and Christmas. Over the years my frugal plan had worked flawlessly. I squirreled away the hottest toys for Christmas gifts with early season purchases. While other families were school shopping I<span style="font-family: "monaco";"> </span>was making wishes come true. It was a challenge to make my kids birthdays and Christmas memorable. I love the holidays and I began to bargain shop for Marissa’s September birthday gift. I budgeted a little each month until Christmas, finding sale and clearance treasures, completing my shopping race under budget. In November we celebrated Jim, Nathan and Ian’s birthdays followed in December by Matt’s birthday, and then Kristy’s birthday in early January. The gifts I bought with Jim’s carpet points guaranteed the boys November birthday gifts. Matt at age three was easy; all I needed was something big. Big for my little kids were exciting and ten dollars went a long way. Other than that I had nothing. We had already used the house payment money to pay for medicine, throat cultures and doctors visits for the kids and me while we were sick.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
I was a rookie in the being broke game. I called Toys for Tots and discovered I was too late. They quit accepting new registrations before Thanksgiving. Luckily I remembered buried in the rafters, hidden from my sneaky children I had one gift I<span style="font-family: "monaco";"> </span>had purchased before things fell apart. Before Becca was born I had purchased the new pirate ship Lego set that had caught Nathan’s eye. It was an expensive present, and I could put both boys’ names on it. I had already cut out doll clothes and a dance costume for Marissa, but the fabric pieces remained on my closet shelf while I was sick. Now that Marissa was home from kindergarten I would not be able to get the covert sewing done, besides I was still too dizzy to sew my visions for Marissa’s holiday present. My eyes were seeing double. We would share dinner with relatives and I hoped I would have a dish to pass, but my cupboards were as bare as Old Mother Hubbard’s. My head spun at the thoughts of a hopeless Christmas and the room took another whirl; exhausted I took some Benadryl and fell back to sleep.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
While I slept, Kristy took the picture of Becca from the fireplace and sat alone in a quiet place to cry. It was something I never knew she did until years later. People often think children don’t know what’s happening but they are much more a part of the reality than the adults realize. Kristy never complained and she protected us by caring for the little ones and not adding to our burdens. I<span style="font-family: "monaco";"> </span>worried sometimes about how this would affect her in the future. Today, she tells me it was the substance that made her strong.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
The little elves in my family executed a Christmas plan. Kristy found the Christmas tree in the garage, and she and Nathan, my mechanic, assembled it. Ian and Marissa got busy cutting out paper snowflakes and hung them with dental floss from the ceiling and windows. My little red and green sewing pins stuck six stockings to the mantle. When I awoke, they surprised me with their magical transformation. I had not lifted a finger. They had carefully hung each of their hand made wooden, beaded angel and needlework ornaments crafted by Jim’s parents. Hundreds of hours of love radiated from the tree centered in a carpet of paper snowflake snippets.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
I explained to them that Christmas was about family and being together and sharing memories. What was going to be special about this Christmas was that the Yurceks were a family. Christmas is about the baby in the manger who brings hope to a dying world. Our baby was in the hospital and all we had was hope. After spending seven days in bed, I was regaining my strength.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Why did I feel such shame that Santa might not come this year? I prayed, “Oh Lord, How can I find gifts for Kristy, Marissa and Matt? It is already December 23. How can I let my children down?<span style="font-family: "monaco";"> </span>How can I face Christmas morning empty handed? The kids’ baby sister is dying. They need something good to happen. Please don’t let their baby sister die at Christmas.”</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
My children were ready for Christmas. I was not. I<span style="font-family: "monaco";"> </span>couldn’t expect my parents to shower my children with toys; they were struggling with my dad’s recent unemployment. My parents blessed my children with attention, but had no financial resources to give.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Becca was transferred to the Pediatric Intensive Care Unit (PICU) just as I had fallen ill. It had been a very long nine days and finally the kids and I were well. I was healthy enough to see Becca and had been given clearance to drive. I was no longer dizzy.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
The PICU had a circular desk, and different beds surrounded it. Off to the side with glass doors were the isolation rooms. One of them housed my Becca, who looked so tiny in the crib in such a big room. She was on oxygen, and they explained to me that she kept forgetting to breathe due to the RSV and pneumonia. The respiratory therapist gave her a treatment to help clear her lungs. She had a blood staph infection, her feedings were on hold, and they were giving her nutrition and fluid by IV. Her heart was in failure. Merry Christmas was far from my thoughts. Bah Humbug! This was not merry, not merry at all. I was dreading Christmas and I was feeling like Ebenezer Scrooge.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Startled out of my doldrums, Mary was standing in front of me saying hello. The nurses had called her to let her know I had arrived. She had something she needed me to sign. That’s all I had been doing, signing, and waiting, and hoping, and praying. Bah Humbug!</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
She took me to her office. I had no idea where her office was as she always brought the paperwork to me. She opened the door and picked up a large shopping bag. Her smile radiated. “Merry Christmas!” she exclaimed. The nurses had shopped for families who would be without for the holidays. They picked out a present for each one of my six kids. They even purchased the batteries for the remote control car for Nathan. They thought of everything. The bag contained a roll of wrapping paper, bows and even the tape. It’s nooks and crannies were filled with little treats – a box of candy canes and five chocolate Santa Clauses to peek out of the top of the stockings. Miracles really do happen and my wish had been granted. My kids would have Christmas.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Mary told me that the hospital employees often play Santa for families to make sure they would not face the holidays empty handed. She knew that if I were skipping meals to feed the children, there would be nothing for Christmas.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
I returned to Becca’s isolation room. She was much too sick to be held. I savored a moment of calm and thankfulness. Slowly I was learning to savor tiny moments of peace and tranquility. I stayed by her side quietly reading before heading home with my miracle sack. I felt so thankful for the graciousness of these kind people. With my ritual kiss goodbye and whispering I love you, I prayed to her angels that she would be here when I returned.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
My kids are notoriously nosy and I wanted to surprise them on Christmas morning. I rushed off to pick up Matt and Marissa at Mom’s and stashed the Christmas gifts before the older ones had a clue. While I had been sick, Mom had been busy and blessed us with another surprise. She had sewn Kristy and Marissa new Christmas dresses and my aunt had bought sweaters for the three boys. All my five kids would have new matching outfits to wear for Christmas.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Jim closed the store early on Christmas Eve and helped me dress the little kids for the Christmas Eve service. I told Jim my secret miracle and we smiled eye messages across the heads of our stair step sized children sitting between us in the church pew. We sang for the birth of baby Jesus and our hearts cried out for a Christmas miracle for Becca. After the service the kids played in the manger, Marissa and Matt rode the lifelike donkey proclaiming they were on their way to Bethlehem while I stared down at the tiny doll in the manger and said a quiet prayer for my little baby lying so far away, all alone, in a bed in the PICU. We needed hope in the midst of such incredible sorrow.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Mom invited us for cake and ice cream after the service, but I had other plans. Families are supposed to be together and I was not going to allow Becca to be alone on Christmas. We all went to the hospital to visit Becca, but only Kristy and I<span style="font-family: "monaco";"> </span>were able to go to PICU. Jim stayed with the other kids in the lobby while Kristy and I went to say Merry Christmas to Becca. Each child had made Becca a card and the nurse taped the cards to the wall above her bed. I hung Becca’s handmade stocking on the foot of her crib, putting on the Christmas music Kristy had recorded. I made a special Christmas wish, asking for a miracle for Becca. I left her again with a kiss on her feverish cheek and wished her a Merry Christmas and a very blessed goodnight. The walk from PICU to the lobby seemed endless, my heart heavy laden with grief, babies should be home with mommies and daddies on Christmas Eve.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Fresh snow had fallen, and instead of hurrying home on the freeway we meandered past the lighted mansions on Summit Avenue of St. Paul. We passed the Cathedral and the Governor’s manor. The children marveled at the beautifully decorated homes. Matt clapped his hands in joy, while the others argued over which house was the favorite. Ian and Kristy engaged in a competitive battle. Marissa’s face was lit up from the wonder of the lights and its beauty. The kids were enjoying the ride so much that we wound our way home through parks, and lakes, and residential streets for over an hour. It was peaceful and calming. The kids quieted and Matt fell asleep.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Scattered snowflakes were falling and Jim and I listened to the Christmas music playing from the radio. The radio DJ announced that Santa was spotted circling the globe, and Marissa and Ian excitingly questioned how he managed to get all the work done in one evening?</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
This explanation I left to Jim, it was his turn to try to satisfy his children’s curiosity. His eyes sparkled as he told them Santa was magic and can make anything happen if you only believe. It was a heavenly ride. I reached across the seat setting my hand on Jim’s knee. Jim’s answer had satisfied the children’s curiosity, and Kristy had caught my glare, playing along with the magic of the moment.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
It was nearly midnight when we arrived home and the house was pitch black to save on electricity. As we pulled in the driveway, the mini van’s lights shone upon dark shadows lying near the door. Jim hopped out of the van to see what was going on. Then he summoned us as if it were nothing.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
As I reached in the back seat to get sleeping Matt, the children shrieked, “Santa came! He came! Santa was already here!”</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
What were they talking about? I grabbed a confused, groggy Matt. There were nearly a dozen or so thirty-gallon black trash bags left sitting by our front door. Jim and the big kids carried in the bags.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
The children tore open the plastic bags to discover dozens of wrapped presents with their names on them. It was blessed chaos. There were tons of groceries, toilet paper, and shampoo. Everything we were out of. Kristy, Nathan and Ian were stacking the packages by the tree while Marissa and Matt played mountain climbers scaling the huge mounds of packages. Kristy screamed as she caught the tree from falling. Marissa narrowly escaped a plunge from the top of Gift Mountain. Our children were bouncing off the walls, but we finally convinced them that it wasn’t Christmas yet, and Santa required they open presents on Christmas morning like in The Night Before Christmas. They didn’t argue because we had just read the story.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Marissa wondered why Santa left them outside, instead of bringing them down the chimney. Ian, who always had an answer for everything, announced, “he had so much dummy; if he brought the bags down the chimney, he would get the chimney stopped up.” Kristy added “that the house was locked and he could not bring them in the door.” Finally they all scampered off to their rooms and soon were snuggled in beds dreaming of Christmas miracles.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Shortly after midnight the phone rang. It was the resident from PICU calling us to let us know Becca had turned the corner and they upgraded her status to stable. She was improving and was breathing easier so they had removed the ventilator; Becca was now breathing on her own and on supplemental oxygen! Becca was getting better! My Christmas prayers had been answered. And someone, some Santa somewhere had fulfilled my wishes. He or she arrived with bags of toys, and goodies, and groceries. My cupboards would no longer be bare. Jim and I had no means to provide for our family, yet someone, somewhere, knew our needs. I thanked the baby in the manger for this Christmas miracle.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Jim and I put away the much-needed groceries. Two turkeys, packages of hamburger and chicken went into the freezer. We put the canned goods on the shelves . . .apples and oranges, carrots and potatoes, and onions . . . bathroom and hygiene products. There were even a couple loaves of expensive rice bread. Whoever brought this Christmas miracle, had not forgotten anything. They had even picked up a double pack of diapers for Matt who was regressing from his potty training in his upside down life.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
The real Christmas miracles were hidden in the tiny details. Buried deep in one of the bags I discovered a brand new pair of much needed white Reebok tennis shoes for me. They fit perfectly. We filled the stockings with candy and small gifts from the bags the kids had not seen. With the gifts from the hospital and the one from us for Nathan and Ian, we had more presents than we had ever imagined. Our room looked like a Hollywood movie Christmas morning scene. Where did all this come from?</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Jim and I crawled into bed, hoping to get a few hours of sleep before the kids scrambled upon us to open their presents. They were tired from the late night and for the first time ever on Christmas morning; they slept until 8:00 A.M..</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Kristy in her sweats and the little ones in their blanketed sleepers tore into the pile of packages. One, two, three, four, five, six, seven, I lost count of the gifts they each received. Nathan screamed pulling out a pair of roller blades, the current hottest trend retailing at $l50 a pair. Who had done this? Ian soon discovered he had a pair too! Kristy found a boom box, a jewelry box, curling iron and music to play. Packages marked to the Yurcek family contained a VCR to replace the one that had been stolen when our house had been robbed and ransacked right before Becca’s birth. There were movies, games, books, colored markers, and art kits for each child. Even Becca was not forgotten. She got new clothes, a diaper bag, several new pink animals and more music. Marissa found a big package with a dollhouse and furniture. She was surrounded in pink heaven. Matt tunneled and laughed through the wrapping paper and boxes. We corralled him to open his presents, a big floppy eared dog, trucks, cars and a train track. The boys tried to set up their new remote control car racing set in the middle of the wrapping mess.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Jim was not to be forgotten and he discovered new socks, sweats, jeans and a belt. He handed me a tiny box from under the tree that he discovered while we were cleaning up and making sure all the tiny toy pieces were not thrown away with the mountain of boxes and wrapping paper. Inside was a solid sterling silver heart necklace with six tiny stones. The necklace was a reminder of hope, a mother’s heart with my six precious children. The six little diamonds sparkled in rainbow colors from our Christmas tree. It was bittersweet to look at as Becca’s heart was slowly failing. But I reminded myself that for today Becca was doing better, and this Christmas we had witnessed a true miracle. Some unknown Santa with a caring heart had done all this for us. But who, how, when?</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
No longer were our cupboards bare. The kids and I made a fresh fruit salad with real whipped cream. Kristy peeled the apples and Nathan chopped them along with slicing frozen strawberries. Marissa cut banana coins with a bread knife and Ian added one handful of marshmallows to his mouth before adding the next handful to the magical miracle bowl of Christmas fruit.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
We dressed for Christmas dinner at my cousins. The family celebrated the day together with aunts and uncles, cousins and second cousins. All were there but one, our Becca.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
No longer would we be hungry again. We had food for the next month until our food stamp case opened. The kids had new toys to keep them occupied. We had warm clothing and mittens. I later discovered when our bills arrived, that some unknown Santa paid our phone bill, the utility bills, and our car insurance! We will be forever grateful for the gifts of that year, and we will never forget we witnessed a true Christmas miracle. I have from then on remembered to give back to others as you did for us. Thank you! What you did for us that year was unbelievable! You gave us the gift of hope and belief in miracles.</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Buried in one of the bags of the hundreds of dollars in gifts we found a card, wishing us a “Merry Christmas and to all, and to all a good night. You are loved! Santa.”</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Those were the same words whispered in tiny Becca’s ear ten days earlier. Was it connected?</div>
<br style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px;" />
<div class="BasicParagraph" style="background-color: #eeeecc; color: #333333; font-family: "Trebuchet MS", Verdana, Arial, sans-serif; font-size: 12.61px; line-height: 18.915px; margin: 0in 0in 0pt; text-indent: 0.5in;">
Over the next few years, the miracles continued helping us when we needed it most. I tried to find who our anonymous Santa was but we never discovered the giver of the gifts. Whoever it was did not want to be found out. Maybe someday that person or persons will read my writing, and I will finally be able to thank her or him for our Christmas miracle and generosity.<br />
<br />
Perhaps we will never know.<br />
<span style="font-size: 12.61px; text-indent: 0.5in;">Chapter 9 of "Tiny Titan, Journey of Hope" by Ann Yurcek</span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR_xsvJg1pTlF0Vu8tzMJhfLHrlUAEj_i1zlrx8UcQWhfpDboq4ySFiDGCm83pOniA6K1TfGCy12TwZWeYYi5xm2XVmMkC8vVCvexcbvP6isjfIM093zDPUKPSFrpyIomwphNMWxyZGA/s1600/79773152_10218772029225616_5141468413322854400_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR_xsvJg1pTlF0Vu8tzMJhfLHrlUAEj_i1zlrx8UcQWhfpDboq4ySFiDGCm83pOniA6K1TfGCy12TwZWeYYi5xm2XVmMkC8vVCvexcbvP6isjfIM093zDPUKPSFrpyIomwphNMWxyZGA/s320/79773152_10218772029225616_5141468413322854400_o.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Becca Christmas 2019</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Tiny Titan, One Small Gift is Available on<a href="https://www.amazon.com/Tiny-Titan-Small-Gift-Journey-ebook/dp/B006V5A8XC/ref=sr_1_1?keywords=Tiny+Titan+Journey+of+Hope&qid=1576768397&sr=8-1" target="_blank"> Kindle at Amazon.com</a><br /><br />Merry Christmas from Our Family to Yours.<br /><br />Ann, Becca and the whole Yurcek Tribe<br />
<br />Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-35345687815287643402019-09-09T10:07:00.002-07:002019-09-09T10:12:45.888-07:00Why Do I Rock My Red Shoes?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjug8xzDdlm3EtJgSha7Kc5OmgDIgaMQUNVSnYEEetJRvZ7ISMu4m6jTizcnA-0mTAlWd-7FMObaVCypa0d31alJKRG9bcqLBz7vg17O63QpBNZarMXmyugwAyaP7i674Tl3HwMsUlw/s1600/%2527.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1565" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjug8xzDdlm3EtJgSha7Kc5OmgDIgaMQUNVSnYEEetJRvZ7ISMu4m6jTizcnA-0mTAlWd-7FMObaVCypa0d31alJKRG9bcqLBz7vg17O63QpBNZarMXmyugwAyaP7i674Tl3HwMsUlw/s320/%2527.png" width="313" /></a></div>
<br />
Today is International Fetal Alcohol Awareness Day. I am rocking my Red Shoes.<br />
Our logo says "Start the Conversation... Ask me" FASD Red Shoes Rock.<br />
<br />
Why do I rock my Red Shoes?<br />
<br />
For my children who were born affected by prenatal alcohol exposures.<br />
For all children who have yet to be born with FASD.<br />
For all the families who are raising children with FASD<br />
For all the children who have yet to be diagnosed with FASD.<br />
For all the adults who are living with FASD.<br />
For all the adults who do not know that they have FASD.<br />For all the individuals who have a lifetime of medical and chronic illnesses because of FASD.<br />
For all those who are supporting those with FASD<br />
For all the teachers and schools who do not know how to help children who have FASD.<br />
For all the communities who do not know how to help children & families who are affected by FASD<br />
For all the medical and mental health professionals who need to know about FASD.<br />
For all the researchers who are trying to find answers to help those with FASD.<br />
For all the systems that have yet to find supports for those with FASD<br />
For all the governments that need to learn so that they can support those with FASD.<br />
For the world to wake up to the knowledge about FASD<br />
For my daughter who died because she had FASD.<br />
<br />
AnnyAnnystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-59663990347960833502019-09-03T18:02:00.000-07:002019-09-09T09:30:36.397-07:00You can Create your Red Shoes Rock Gear at Thirty One Gifts LLC<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyzwMx_SK4sXB1JyhJA1uhL2cliHpOBuUxQrqTjmh5aB_TxmTbgWB2PbIEtrgdMLBzLwf6RBC44OMF8_Rlim1h_4FO0aietXaTYSgOdRTfu27Xs_WwffvQDM95lXlHH0oYlpXsEeMjaw/s1600/IMG_4217.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="853" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyzwMx_SK4sXB1JyhJA1uhL2cliHpOBuUxQrqTjmh5aB_TxmTbgWB2PbIEtrgdMLBzLwf6RBC44OMF8_Rlim1h_4FO0aietXaTYSgOdRTfu27Xs_WwffvQDM95lXlHH0oYlpXsEeMjaw/s320/IMG_4217.jpg" width="240" /></a></div>
<br />
Last year I learned about how to make Red Shoes Rock Gear at Thirty One Gifts. I rock my Red Shoes while I carry my catch all bag with all Mac's gear and while grocery shopping and more.<br />
<br />
I posted a picture of my bag the other day as Mac and I headed to his medical appointment in the city. A couple of people asked me where I got it from. Finally I have time to sit down and blog the instructions!<br />
<br />
First go to <a href="https://www.mythirtyone.com/us/en/">https://www.mythirtyone.com/us/en/</a> and find a consultant near you. If you do not know of a consultant you can always support my friend Katy Pitzen, Lancaster WI. She has a medically fragile daughter and I want to support her in her business.<br />
<br />
<br />
The bag is the <a href="https://www.mythirtyone.com/us/en/product/9025/crossbody-organizing-tote-charcoal-crosshatch" target="_blank">Crossbody Organizing Tote</a><br />
Charcoal Crosshatch $38.00 Plus Personalization is $10.00<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPANIqrw7_v80C2oUCU7IwN0fgJZFuyYC192l4_I0os2oQRJqItGGoTBOcrWE1nOOFaSbEGYvuqMUN95alQSh8BJojS1xwe7kx9DcWETX6kMgDREyuUI-aDvI7DhYR2g25rnYgg3l5Dg/s1600/IMG_4219.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="240" data-original-width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPANIqrw7_v80C2oUCU7IwN0fgJZFuyYC192l4_I0os2oQRJqItGGoTBOcrWE1nOOFaSbEGYvuqMUN95alQSh8BJojS1xwe7kx9DcWETX6kMgDREyuUI-aDvI7DhYR2g25rnYgg3l5Dg/s1600/IMG_4219.jpg" /></a></div>
<br />
<div style="text-align: center;">
Find the Crossbody Organizing Tote Charcoal Crosshatch.<br />
Select Personalization</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8CqMGz7J37wyALzKEjWFn_bsBiWIuT3KO_MU2jYz8vOsesHHHrmtD00KPAG6oZwuyE_zmN4ln2EyWxBT8AyzMPNBjeZL68v_Lnov6fZ_n5gbyTGDy1ESSe1tQE6gMwEjmIRxUVNWa7w/s1600/IMG_4220.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8CqMGz7J37wyALzKEjWFn_bsBiWIuT3KO_MU2jYz8vOsesHHHrmtD00KPAG6oZwuyE_zmN4ln2EyWxBT8AyzMPNBjeZL68v_Lnov6fZ_n5gbyTGDy1ESSe1tQE6gMwEjmIRxUVNWa7w/s1600/IMG_4220.jpg" /></a></div>
<br />
<div style="text-align: center;">
Now it will ask you to personalize your tote.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdwJLqITSlageM8SgxgD7Hb9Q-eOXBMKhLYDpI1LSukw1z18ORdL35dMA2wHIBUlhQwMvM6a04aw9HJE1Lgt86x3G0GTsCkx3Cb3S57X5mMQUzP1GbfwUbutrRIg4G0Be-qWUBNgXeDA/s1600/IMG_4221.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdwJLqITSlageM8SgxgD7Hb9Q-eOXBMKhLYDpI1LSukw1z18ORdL35dMA2wHIBUlhQwMvM6a04aw9HJE1Lgt86x3G0GTsCkx3Cb3S57X5mMQUzP1GbfwUbutrRIg4G0Be-qWUBNgXeDA/s1600/IMG_4221.jpg" /></a></div>
<br />
<div style="text-align: center;">
<br />
Click on the Charcoal Crosshatch</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieeBjqYzhLPCfoXm4UCV6F6d-OifN7F-ZSe64OSDSdqhM0VQTDjafeUSoZJQ9uyFII8JXlCgqHBe3L8N1VjU-hyUGZOkNwJL5LGNbcl3LEjjp6N3xxDfppmZXFeEXROAsF3Rt9t_y3rA/s1600/IMG_4222.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieeBjqYzhLPCfoXm4UCV6F6d-OifN7F-ZSe64OSDSdqhM0VQTDjafeUSoZJQ9uyFII8JXlCgqHBe3L8N1VjU-hyUGZOkNwJL5LGNbcl3LEjjp6N3xxDfppmZXFeEXROAsF3Rt9t_y3rA/s1600/IMG_4222.jpg" /></a></div>
<br />
<div style="text-align: center;">
Then Click on 2.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggSBwPzpIU22Wkkr4GL7jn1dm4DP-vik8CIcW2K8DHBf9XkE-7Tz0QW5_CILjbFiyzkLSN77ACN31OLRzbiY8qPsMn2EcFkWks7eAlhfpE6gr5T_gAFelTcMfPlEuVyQn4nzxOdVnSXg/s1600/IMG_4223.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggSBwPzpIU22Wkkr4GL7jn1dm4DP-vik8CIcW2K8DHBf9XkE-7Tz0QW5_CILjbFiyzkLSN77ACN31OLRzbiY8qPsMn2EcFkWks7eAlhfpE6gr5T_gAFelTcMfPlEuVyQn4nzxOdVnSXg/s1600/IMG_4223.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div style="text-align: center;">
Scroll down until you find the blue Tennis Shoes. Click on it. </div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyuqJjSD4i0kYn2iy6e1zVKbaKejusD4BsvQrF4dwq1_1uwhj4lmRorbaDXXdAA5GAGI9PmlpC3h9nYuNgDxsrcYXP33NdtY4e2cPYo_tYzZcUnM7ZJiKpSecylhjinJ2YK6XeGFoQwA/s1600/IMG_4226.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyuqJjSD4i0kYn2iy6e1zVKbaKejusD4BsvQrF4dwq1_1uwhj4lmRorbaDXXdAA5GAGI9PmlpC3h9nYuNgDxsrcYXP33NdtY4e2cPYo_tYzZcUnM7ZJiKpSecylhjinJ2YK6XeGFoQwA/s1600/IMG_4226.jpg" /></a></div>
<br />
<div style="text-align: center;">
Then the Design Color button will pop up. Change it to Red. </div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLpIPdCReLy2UAWqdwiET_H6si2mW200WklilqKO5_QCqU8Wd2Lrq7LyeqHGiXIqbA3LM3s82UIhMNqx96q918nFfshLyhAHIUj9b1yFHcTLsVVGT8p6iWm33EXV0S3UNe1QvGWBFHhA/s1600/IMG_4227.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLpIPdCReLy2UAWqdwiET_H6si2mW200WklilqKO5_QCqU8Wd2Lrq7LyeqHGiXIqbA3LM3s82UIhMNqx96q918nFfshLyhAHIUj9b1yFHcTLsVVGT8p6iWm33EXV0S3UNe1QvGWBFHhA/s1600/IMG_4227.jpg" /></a></div>
<br />
Click 3 to do the text for the bag.<br />
<div class="separator" style="clear: both; text-align: center;">
Fill in the box for the text: Red Shoes Rock</div>
Then pick the color of the thread: White<br />
Then pick the font you want to use. I used Chalkboard.<br />
<br />
Then it will pop up the sample of your bag.<br />
Click 4 and save your design to your shopping cart.<br />
<br />
You did it! You created your own Red Shoes Rock Logo Awareness Gear<br />
<br />
I hope that you got it to work for you!<br />
<br />
If you have any questions. Let me know by commenting on the post.<br />
<div style="text-align: left;">
<br />
My other favorite is my <a href="https://www.mythirtyone.com/us/en/product/3121/large-utility-tote-charcoal-crosshatch" target="_blank">Large Utility Tote- Gray Crosshatch</a> Item Code: 3121 $35.00 </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
It is perfect for grocery shopping or heading out wear you need to carry a lot like the beach or a picnic. For me it is my carry-all for heading out to raise awareness about Fetal Alcohol Syndrome with all my gear!</div>
<div style="text-align: left;">
<br />
I can Rock My Red Shoes and also Rock my Red Gear all year!<br />
<br />
Anny </div>
<div style="text-align: left;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-40913676737460248682019-06-07T07:57:00.003-07:002019-06-07T08:39:36.620-07:00End of the School Year: Mom Tears of Joy and We Got It Right!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEYzY1qeI5QDFY_abUBj7liD3cuAOhTbP4wOVgTAOzBDL4ZZwtu3C_4B6HCCrUOLpLFxUSac7GGwu6ygXdz3rjpuozke9xNwqlTuzd7DBC_CE79le9p01Tw-O4Nf0b-J58y2Zevt5DcQ/s1600/61799452_423457581767547_5264667145026928640_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="895" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEYzY1qeI5QDFY_abUBj7liD3cuAOhTbP4wOVgTAOzBDL4ZZwtu3C_4B6HCCrUOLpLFxUSac7GGwu6ygXdz3rjpuozke9xNwqlTuzd7DBC_CE79le9p01Tw-O4Nf0b-J58y2Zevt5DcQ/s320/61799452_423457581767547_5264667145026928640_n.jpg" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Curious Cat Award for always being full of curiosity about the world.</td></tr>
</tbody></table>
<br />
In my history of parenting children with special needs for over two decades, the end of school usually means the end of meltdowns, the struggles of my children being misunderstood and the constant educating and fights for services and accommodations for their educations. I looked forward for school ending and having a blessed summer of no stress. I could work on building back up their self esteems that were by the end of the school year bottomed out.<br />
<br />
This year is different. I do not want second grade to end. I just put Mac on the bus to school for his last day. His last day is met with this Mom's tears and sobbing. This is surprising me. Who would have ever thought that I hated for school to end? I do not want this year to end.<br />
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikX4auejYtrzjgi8Es7H_St-1HRHtFnbb3uwic42SrkGf_WQCyARaDy6bB7bJrTBEsnAljYeG_ISODWmXMzMcwP28RkQArqxE7TGnOGRcFe5lymKlw7Xd85bja9P_D1yWYgChl39JRlA/s1600/60254368_2140659399366648_7332318088412528640_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="896" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikX4auejYtrzjgi8Es7H_St-1HRHtFnbb3uwic42SrkGf_WQCyARaDy6bB7bJrTBEsnAljYeG_ISODWmXMzMcwP28RkQArqxE7TGnOGRcFe5lymKlw7Xd85bja9P_D1yWYgChl39JRlA/s320/60254368_2140659399366648_7332318088412528640_n.jpg" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mac and Friends</td></tr>
</tbody></table>
Where do I begin to share just how amazing this school year has been for Mac. Mac has fetal alcohol syndrome and was adopted from the foster care system here in our state. They said he would never, this, never that. Prematurity and at l7 months he was hanging onto life by a thread when he came to us. As a veteran parent of medically complex children Mac entered our lives. He would show us and teach us something every day. My biggest fear for him was that school would not be able to meet his complex needs and he would grow up lonely and friendless as I had seen happen to so many other children in school settings.<br />
<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgLSDvHsIH7WnUG1whQcBNblC080voJlpgDYXpWl3eHcHFF-7qu_hv_LufLcIGTgUXi9zJe5ZkMF93-2DV6t0H2Y4C7UTGF3Au5o-bKWnv-iHSiGI-mbZzB3x5WgWubBYAzwHkypQgUQ/s1600/57009056_632622383877223_6510375765886894080_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgLSDvHsIH7WnUG1whQcBNblC080voJlpgDYXpWl3eHcHFF-7qu_hv_LufLcIGTgUXi9zJe5ZkMF93-2DV6t0H2Y4C7UTGF3Au5o-bKWnv-iHSiGI-mbZzB3x5WgWubBYAzwHkypQgUQ/s320/57009056_632622383877223_6510375765886894080_n.jpg" width="320" /></a></div>
</td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mac and his friend who has been at his side since Kindergarten</td></tr>
</tbody></table>
<br />
<br class="Apple-interchange-newline" />
This year I have seen a team and a school that believes in my child. They got it right. They got to see beyond the wheelchair, beyond the anxiety and beyond the lack of being able to talk to see and know my Mac. He has friends, he has teachers who accommodate him and find ways to access what he knows. I have seen a team of teachers, paraprofessional, therapists, office staff, and administration go out of their way to help us get it right for Mac and for other students. I have seen friends surround and understand him and fill in the gaps for him. They know he struggles to stand, they stand behind him and support him to be included with everything. They know they do not have to have him answer to be part of the conversation. They talk to him and often ask Furry for the answer. The children truly care for him and his team taught class is appropriately called the "The Second Grade Dream Team".<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGQ85aGnjubIRyVPaKn4ocCwzhe1EV0VvqRxLrWah4ui7cVhGXRfvlETD5KpAe_yEXidX6HP-m-5rsBx26aJIoD2GmWr7ij59oqJmhYc_u1TNTMFh-xNC2kJd6EK_GXt6q8bQM0rwIOQ/s1600/41138563_949310265275747_5055058524640378880_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGQ85aGnjubIRyVPaKn4ocCwzhe1EV0VvqRxLrWah4ui7cVhGXRfvlETD5KpAe_yEXidX6HP-m-5rsBx26aJIoD2GmWr7ij59oqJmhYc_u1TNTMFh-xNC2kJd6EK_GXt6q8bQM0rwIOQ/s320/41138563_949310265275747_5055058524640378880_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mackie and friends </td></tr>
</tbody></table>
Dreams did come true in that class this year. The dream that children can learn, no matter the challenge. The dream that everyone is included. The dream that everyone will have a friend.
The dream that he has teachers who care and love him. A paraprofessional that knows him and his challenges and steps up everyday to help him soar and learn to the best of her ability.
To the team that came together every month to share ideas, strategies to keep improving on the IEP and how to accommodate his complex needs. To the special education director that saw a need and bought the stairlifts to plan for emergencies to get our children safely out of the building. The approved the Matt Connect magnification device so he could see the classroom and his materials. His homebound teacher who teaches here every afternoon after him spending his morning in the school. So much more, AT evaluations and the equipment, even his special toileting chair for use at school, new curriculum with the ability to be able to be read for him and accommodate so many more students with meaningful learning. The special busing and everything it takes for Mac to shine. Thank you to the school district for doing what is needed and stretching and thinking out of the box for children like Mac.<br />
<br />
<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7Xg1-pwiU6uDVGeZH_IaD8KI-r9t34c2Wx-WBcvr5jfZutsaLzZ5BpasiWcIjk7XxtMxV67HNESLLSp1BI9ufXDsYPGgSv-u36tlH_gH5P40TGt7A-CnqknPIbcSfXabua1ezWbYaBA/s1600/46513942_997032307170209_2473628968943616000_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7Xg1-pwiU6uDVGeZH_IaD8KI-r9t34c2Wx-WBcvr5jfZutsaLzZ5BpasiWcIjk7XxtMxV67HNESLLSp1BI9ufXDsYPGgSv-u36tlH_gH5P40TGt7A-CnqknPIbcSfXabua1ezWbYaBA/s400/46513942_997032307170209_2473628968943616000_n.jpg" width="300" /></a></div>
<div style="text-align: center;">
<br /></div>
Mac is shining and he has shown them that he can learn, he can think, he can be accommodated with this typical peers with giving him the tools and accommodations to reach those goals. Mac is determined and will measure up to the goals we set when we get it right. We got it right and he has shown us that with his new curriculum that he has comprehension skills at the top of his class.<br />
This is the same child who they only saw the disability, not the ability not too long in the past. They saw the little boy in a wheelchair off to the side, flapping and flailing, non-verbal silently just existing. The team saw him in our home, they saw who he could be and together we figured out how to help him shine and grow at school. Thank you all for believing in Mac.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO-GKDiPYhNr64-aianA7CLXahCq8uw6SjFqqzBY4D2U0-SGFixZKO0NF-OCiM9_fKvqzA4yvXPQ7ltsk8qXHYxYU6o9NanGtib2DTC8mtXv44CrHt6WwJauq2w0dEzcRufcACvhv1hw/s1600/62114706_1134885890051516_1468055491476193280_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="540" data-original-width="960" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO-GKDiPYhNr64-aianA7CLXahCq8uw6SjFqqzBY4D2U0-SGFixZKO0NF-OCiM9_fKvqzA4yvXPQ7ltsk8qXHYxYU6o9NanGtib2DTC8mtXv44CrHt6WwJauq2w0dEzcRufcACvhv1hw/s320/62114706_1134885890051516_1468055491476193280_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Second Grade Dream Team</td></tr>
</tbody></table>
I sit here writing as tears fall. Everyone who knows me knows that this MOM has tears of happiness and for good things. My PTSD from years of systems trauma, means that I have more HAPPY tears of HOPE and JOY and more determination to get it right this time. Tears that Mac soared and he has what it takes for him to shine!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVNbRvciUW7nR8hECEDfiN5g8v8vMbKhkw5y9U3SlFQYPro1O0bBJj9iYnHXdDHqFU4KYfJMykwMHuR4ZkZowDeU4PyHY6si9Qva3NZe3of-Qk9W6SIVkE3xcBGwQkS1W7EAx0zWt5og/s1600/41001147_949310458609061_5168507663402663936_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVNbRvciUW7nR8hECEDfiN5g8v8vMbKhkw5y9U3SlFQYPro1O0bBJj9iYnHXdDHqFU4KYfJMykwMHuR4ZkZowDeU4PyHY6si9Qva3NZe3of-Qk9W6SIVkE3xcBGwQkS1W7EAx0zWt5og/s320/41001147_949310458609061_5168507663402663936_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All it takes is a little help and accommodation</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: left;">
Today I write that Second grade will never be forgotten. This is the year that I finally saw a school get it right. Yes we had bumps in the road, but those little bumps are normal and if we did not have those bumps, we wouldn't have been doing our jobs and stretching the schooling and experiences for Mac. For the first time ever, I am sad for the end of the school year to come. But also celebrating that we got it right. </div>
<div>
<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-CvHTm_NRKGIRJkTBiUtJsvcJGJUDhr9mo47Gf0YTtqKKY9bt5MU4G9ghk3BXWq9aFD7bDGFg0SQGiuGwud-q5TJasPL5dW3PTMNB88CsIK2MY-tpv8E8c2ei3GCtaGyqGXsukSrd0Q/s1600/50554468_1043185439221562_2985645158604734464_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-CvHTm_NRKGIRJkTBiUtJsvcJGJUDhr9mo47Gf0YTtqKKY9bt5MU4G9ghk3BXWq9aFD7bDGFg0SQGiuGwud-q5TJasPL5dW3PTMNB88CsIK2MY-tpv8E8c2ei3GCtaGyqGXsukSrd0Q/s320/50554468_1043185439221562_2985645158604734464_o.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Friends and true inclusion</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
We got it right! We did it for Mac and he soared. And a little stuffed penguin was part of the classroom and even a part of the yearbook because he was in the IEP. Thinking out of the box and doing what it took for a young boy to learn and most of all be apart of the school and valued.<br /><br />We would have never imagined Mac being able to go to school for a full day. He has made the whole day the last Friday and today he will walk/roll out of the building with his friends after a whole day of end of the year celebration. He will be there to say goodbye until next time to his friends and celebrate the last day of school. He could have never done it without having the supports he needed to shine and thrive. People believing in him and friends.<br />
<br />
Thank you to everyone who helped make this possible. And for going the extra mile to help Mackie make sure that his friends could make it to his Mackie's Movie Nights at our local movie theater.<br />
This is a year of dreams come true, friendships, empowerment and memories that will last a lifetime.<br />
<br />
<div>
And to you Mac you did it ! You taught us all more than we could ever teach you!</div>
<div>
You Rock and we are so very, very proud of you.<br />
<br />
Love,<br />
Mom<br />
<br /></div>
</div>
Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-53329573567339318672019-05-03T03:22:00.001-07:002019-05-03T06:33:16.206-07:00Celebrating School: What We Got Right Day 2 Medical Home<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCVI8kqlng4IJW7BEV05cB3w8WcS4BVyFpEarT4MC_zuOjUGqN55AFc3Xcm8Lb3qpfZ_YDKKCvEdXNFDrjXUF-6U_poAQ6fKURMnAxb3BLmDaPrPw0XE08R5yQg1QA4LdjL3M8QzelAg/s1600/Day2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="789" data-original-width="940" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCVI8kqlng4IJW7BEV05cB3w8WcS4BVyFpEarT4MC_zuOjUGqN55AFc3Xcm8Lb3qpfZ_YDKKCvEdXNFDrjXUF-6U_poAQ6fKURMnAxb3BLmDaPrPw0XE08R5yQg1QA4LdjL3M8QzelAg/s320/Day2.png" width="320" /></a></div>
<br />
<br />
The crisis of Becca's birth and medical complexity began in 1989 and her lengthy NICU stay would put us on the road to learning to Parenting Special Needs and the road to navigate the very new and challenging world of medical needs and school.<br />
<br />
An improper unplanned discharge set up the first time I would have to face advocating to change the system. My sister who was in medical administration made a phone call to the state talking about the lack of discharge planning for Becca after six months in the NICU. Twelve days of no sleep, no help and no lifeline, I was taking care of a child who still belonged in the Intensive Care unit alone and wthout any tools.<br />
<br />
Heading in one day to visit Becca I was met with the social worker at bedside. The hospital's quality control and administrative leads wanted to have a meeting where we talked about what happened and this Mom was scared. Santa meeting Becca at bedside was the calming force before heading into the boardroom to tell the story of my twelve days home with Becca and answer the boards questions.<br />
<br />
That meeting would not only change everything for Becca but would get Becca's primary nurse hired as the first NICU full time discharge planner. The hospital would continue to set up and coordinate the home care that our new primary doctor had been trying to set up from home and that took Becca back to the hospital.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpTy72pLG_q6zh6Ms1c-cIjHUf8Uegw2Q2sx31qb4SK2NYqXqiqCiJw8R0itdlpgX4p9bugVyayVZCPf2xG_ej-1FAGP2Hts6kqR_h9UD1oUXE4TRao8xlcliL0iK4eyoDLZQGHZ3Yfg/s1600/Playing+Hooky+%25281%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="628" data-original-width="1200" height="167" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpTy72pLG_q6zh6Ms1c-cIjHUf8Uegw2Q2sx31qb4SK2NYqXqiqCiJw8R0itdlpgX4p9bugVyayVZCPf2xG_ej-1FAGP2Hts6kqR_h9UD1oUXE4TRao8xlcliL0iK4eyoDLZQGHZ3Yfg/s320/Playing+Hooky+%25281%2529.png" width="320" /></a></div>
<br />
The hospital arranged to put together a <b>Care Conference </b>with all the people involved in Becca's care.<br />
<br />
The Doctors, the Case workers from the county and the hospital (<b>Waiver services</b> were put into place), her Primary care physician, the Birth to Three services workers, the School District, the Nursing agency, the County Health Nurse and our Pastor from our church. Thirty-four people to get Becca home and surround her with the care she and our family needed to be safely out of the hospital. Planning for <b><a href="https://getpalliativecare.org/whatis/" target="_blank">palliative care</a> </b>long before it was ever dreamed of being a concept. We talked about what to do if she needed to go back to the hospital or heaven forbid she would die at home. A topic no parent would ever want to face. How to avoid a length <b>Child Protective Service</b> investigation that would endanger my other children from not only losing loosing their sister, but their family while they awaited the results of the autopsy that would clear us of any wrong doing. They had seen stories of other children being removed from the home after the death of a critically ill sibling. I learned that the CPS system is there to protect kids but sometimes it just doesn't get things right. Children who die at home it is always someones fault. We had to make plans for just that circumstance, because they thought the professionals had little hope of survival. But on the flip side they worked on goals for her development, goals to continue to music therapy that I had started at bedside within 24 hours of being in the NICU.<br />
<br />
Becca was fortunate to be born shortly after<b><a href="https://www.npr.org/2012/05/19/153076971/katie-beckett-leaves-legacy-for-kids-with-disabilities" target="_blank"> Katie Beckett</a></b> opened the doors to getting our kids out of the hospital and home. A waiver of funding based on Becca's income only brought Becca home and the supports she needed to be there. Becca was blessed to qualify one of Minnesota's 200 waivers for children and adults who needed to be at home at Intensive care level needing hours of RN level nursing and that was provided by the pediatric nursing agency Caregivers Network. They coordinated the care at the hospital and even had the main nurses train while she was still in the Pediatric Intensive Care unit. Care coordination at its best.<br />
<br />
IFSP my first experience a school acronym and my first meeting within the educational system. I was invited to be a team member to help creating an<b> </b><a href="https://www.understood.org/en/learning-attention-issues/treatments-approaches/early-intervention/ifsp-what-it-is-and-how-it-works" target="_blank"><b>Individualized Family Support Plan</b> </a> for Becca's education at 6 months of age. Becca once home would start having the physical therapists, teacher from the school both coming to our home. School at home with a tiny baby. She was in her own environment and the nurses and I and her siblings all included in helping Becca learn and shine.<br />
<br />
Becca was blessed with a <b><a href="https://medicalhomeinfo.aap.org/overview/Pages/Whatisthemedicalhome.aspx" target="_blank">Medical HOME</a></b> already back in 1990 after advocacy that not only gave Becca her freedom to be home, but the tools she and our family needed to SHINE.<br />
<br />
Thank you Children's Hospital of St. Paul for the gift of thinking out of the box and creating a Medical Home for Becca and being apart of her care for the first 7 years of her life. Thank you to all the systems that came together to make that happen.<br />
<br />
AnnyAnnystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-46191272922492597532019-05-01T05:32:00.000-07:002019-05-01T05:58:12.277-07:00Counting Down the School Year: Day 1 Celebrating What We Got Right<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNAcJpvEDXkuYQNnp_dyhsqbPY8tZL0qNWp9yros6p3ta6QOj48taGW5I3B_veUMoRqS433bp13c2qZwvFZLq3sU003YOd8RiLZIeQ-8z9t3QjK96kGvCUtV0abT7q5Th9j3UoylLGjg/s1600/Celebratingschool+day1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="789" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNAcJpvEDXkuYQNnp_dyhsqbPY8tZL0qNWp9yros6p3ta6QOj48taGW5I3B_veUMoRqS433bp13c2qZwvFZLq3sU003YOd8RiLZIeQ-8z9t3QjK96kGvCUtV0abT7q5Th9j3UoylLGjg/s400/Celebratingschool+day1.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">31 Days of Stories of School Success</td></tr>
</tbody></table>
<br />
I have been a parent of children with special needs for a very very long time. With my tribe of a dozen unique children and we have struggled, but we also have found out of the box thinking to accommodate some of their very unique needs.<br />
<br />
Too often we talk about all the problems and struggles we have with schools and our children with differing abilities, but rarely we celebrate what is working. We as parents finding ourselves in the isolating world of "fighting" the schools, trying to advocate for our kids outnumbered by the professionals that sit across the table. We are up against the wall and seriously the ongoing stretching of parents and families to get the unique Individualized Education Plan that was promised, a challenge for all with time, resources and lack of knowledge to help our most vulnerable children.<br />
<br />
As a parent I have had to become well-versed in IEP and 504 plan laws, advocating and not crying at IEPs, going to trainings and attending webinars over these now over two decades with this tribe of mine and learning to help parents advocate for their children. We see all the posts of the social media about IEP parents and the meetings from H.e. hockey sticks. School professionals talk about the failures of the family, parents not doing their parts. Schools blaming the family, family blaming the schools. The divisiveness fueled by frustration, by lack of funding and most of all the uniqueness of our children and their failure to fit in the box of school.<br />
<br />
I need to get back to writing after finishing my latest project and here goes my crazy idea. Too many times we only hear the negative stories, I am challenging myself for the countdown to the end of the school year to write stories celebrating <b>"What We Did Right."</b><br />
<br />
<b><br /></b>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTQfeBjyHhS9v_uQF6sOzGuSkHKL2oyoHMv_3mHh4OyS-Us939iIVwU1R-avREEmmIQi3xKpVZMPOB2lvTh0TY5RyMkY1zhMabGtq9ZrtjOFLG2eYkK5wJdLP-eTDTD-TBbjJ6AYxfvg/s1600/Playing+Hooky.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="628" data-original-width="1200" height="167" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTQfeBjyHhS9v_uQF6sOzGuSkHKL2oyoHMv_3mHh4OyS-Us939iIVwU1R-avREEmmIQi3xKpVZMPOB2lvTh0TY5RyMkY1zhMabGtq9ZrtjOFLG2eYkK5wJdLP-eTDTD-TBbjJ6AYxfvg/s320/Playing+Hooky.png" width="320" /></a></div>
<b><br />Day 1 Kindergarten Hooky</b><br />
<br />
Looking back, my children on one end of the bell curve, was just the preparation for my children who would come into our family on the other with their differing abilities that do not fit in the box.<br />
<br />
For me it all began with when my daughter came home from Kindergarten early 35 years ago and it was not time for the school bus to arrive, I learned very quickly that schools struggle with our out of the box children. My daughter was bored and a phone call to the school saying that my Kindergartener had been playing "hooky" and had spent the day hiding in the garage reading a chapter book instead of going to school and that school was boring and for babies. 17 days of missing school and it was only October. Tummy aches, vomiting and her behavior was telling me something that I was missing. That day was the lightbulb moment, she could finally tell me in her little 5 year old wise way, school did not fit.<br />
<br />
I was 'just' a Mom with 4 children under 6 and not knowing what is normal or typical. Was it normal for kids to read before kindergarten? Talk before she could walk? One day while sitting in the bathroom when she was two, she asked me about times. I said, "Clock times?" She replied, "No Mommy, the x with the numbers and the equals sign." Thinking, "How do I explain this to a two year old? Two two times." She piped up 4. Then moving on through the lower facts three three times. She replied "3, 6, 9 Mommy!" That is when my two year old mastered addition and in less than 15 minutes could do all the facts through the 6s.<br />
<br />
A phone call to the school counselor, explaining my daughter's day of playing hooky, listened carefully and then said "Mrs. Yurcek, you are describing a child who is far ahead of the other children and we have a speaker tonight at a parent meeting coming into the school district. Could you come to the school at 7 and hear the psychologist talk about 'gifted children'. This Mom was the slow learner on this lesson.<br />
<br />
My husband and I found a sitter for our littles and left for our first adventure into the world of special needs education. As the psychologist talked about all the traits of gifted children, we just nodded our heads and looked at each other with <b>understanding that we had one of those kids</b>.<br />
<br />
After the meeting, we stopped and talked with him and made arrangements the following day for him to privately pay to test our eldest daughter. Well, it went on the credit card, as we lived paycheck to paycheck. The results surprising she was definitely gifted but her learning years ahead of her classmates. His recommendation was to skip her ahead two years, but the school district would not agree and placed her in an inclusive gifted classroom. They felt gifted kids needed to be with their peers and in their appropriate grades. In the classroom the teachers were trained to teach to their individual strengths and challenge the students while teaching the required curriculum.<br />
<br />
She was still bored, but I learned to teach her at home and follow her strength based learning. Garage sales found the math workbooks and textbooks that she would challenge herself with. She found friendship with other kids who were like herself. She had a social world of school, an important piece of learning was to get along with others.<br />
<br />
We were blessed to have been in an out of the box forward thinking school district and a move to a new home at 3rd grade had her missing her friends, bored, and struggling with headaches. I knew I needed to do something and the times were opening the doors to out of district enrollments. I pulled the kids from our home district and back to the smaller school district with the gifted program that my daughter and some of her siblings needed.<br />
<br />
But as with any out of the box child, we had our struggles. Work was mundane, repetitive and she would argue with the teacher when she felt they were wrong. She loved to debate the answers on tests to challenge the teachers thinking. By the way, some teachers do not like kids who speak up and prove them wrong. I found myself in the principals office a few times advocating for my outspoken daughter. And her grades would show us what subjects and learning she felt valuable.<br />
<br />
I became Mom and bus driver, making multiple trips to the schools for my growing family. You do whatever it takes for our kids educations. The school would work with us to diagnose my youngest sons dyslexia and the head of the special education department told me that it was very common for gifted children to have learning challenges. Any child who does well in Math and cannot read, there is a problem.<br />
<br />
Time would go on and now those children are grown, making it to places I never believed possible. My daughter a Vice President of a major corporation. Her bossiness and out of the box thinking took her to the top, she challenges herself and if it becomes mundane she has to move up to the next challenge. My son who is dyslexic is working in insurance and project management, his understanding of himself and modern technology has helped level the playing field for him to do his job well. They all have found their ways, but school was just part of the journey. It was out of the box thinking, working with the schools and teaching and nurturing their strengths.<br />
<br />
One day talking with my daughter, apologizing for not being able to afford to send her to the private schools that she needed. She told me "Mom you did the best you could and you allowed me to be social and be with the other kids and that helped me understand how to deal with people in the world."<br />
<br />
I learned that having children who are gifted is a challenge of its own, just another kind of special needs student. We now have advanced placement and other courses in high school, but now Kindergarteners are reading doing challenging learning but on the flip side, most children are not developmentally ready for those learning challenges.<br /><br />I learned to let my children play, learn, challenge themselves, and nuture their strengths and they do grow. I learned that it was my job to advocate, reach out and ask questions and partner with our teachers and schools to find and create out of the box learning opportunities. And when it wasn't working to think out of the box and find or create what they needed to shine.<br /><br />
A special Thank You to Spring Lake Park School District in Minnesota for your part in my children's educational success.<br />
<br />
Anny<br />
<br />
<br />
<br />
<br />
<br />Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-82910024200652634122018-09-07T12:46:00.001-07:002018-09-07T12:50:57.628-07:00Bullies Meet Their Match When You Mess With Their Sibling With Special Needs<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoOkGKZntBfcvPkZiWRdYBUhK7lXwAc90vL5YBhqATyuzbmmG1rW1iBmgrgHTKijdAptBcMssjrER4CTvXYz0RUvsWZbQOH0FBf3GlNDpp9hn0quxEofemnEJo4kn_nyx7TBbCsC_BRw/s1600/marissa-becca.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1204" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoOkGKZntBfcvPkZiWRdYBUhK7lXwAc90vL5YBhqATyuzbmmG1rW1iBmgrgHTKijdAptBcMssjrER4CTvXYz0RUvsWZbQOH0FBf3GlNDpp9hn0quxEofemnEJo4kn_nyx7TBbCsC_BRw/s400/marissa-becca.jpg" width="301" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
I was talking with Marissa the other day school about with Mackie and the fact that he has friends and inclusion. It brought back memories of Becca's years of being the very first medically fragile child in her elementary school in Minnesota. Teeny tiny Becca was barely the size of a two year old and for early childhood went to school with her long time nurse Zoe. Zoe had taken care of Becca since her discharge from the NICU unit and took pay cuts to remain with her special girl. But Kindergarten meant that the school district was forced by the state to hire a trained paraprofessional to work with Becca full-time and because the school had a full time nurse. I got to know Pacer Center very well.<br />
<br />
Change was hard for Becca and it became Marissa's job to walk her up to the door to meet the paraprofessional at drop off. I had tried to make the transition with the para, but Becca did not do well with it. She was too attached to Mom so Marissa became it. She had always had Zoe for the early childhood bus rides for her 3 year old and 4 year old years. Everything had changed. A big school, new people, her support people were no longer there. She was the only medically fragile technology dependent child in the elementary school. But she had her siblings. Matt, Marissa were in the elementary and the Ian was in the attached middle school.<br />
<br />
Marissa walking her sister into the building or rolling her in her little pink Zippy Quicky wheelchair warmed my heart. She was confident and the rare moments when Becca melted down on the side walk crying that she wanted Mommy, Marissa was able to redirect her into something else and singing a song or talking about Becca's favorite obsession of the season.<br />
<br />
Marissa would carry the backpack, her backpack and Becca's smaller backpack that contained her always running feeding tube and its 6 foot long cord if she is walking. One day they were both walking in to the school and Marissa's classmates stopped with his friends surrounding them both.<br />
<br />
The tallest boy in her class, the class bully, yelled out in front of everyone "Hey Marissa are you walking your dog?" <br />
<br />
Marissa had been taught that you do not pay attention to bully's. No playing the "Gotcha game." What is the Gotcha Game? It is the bully provokes you to react and then they gotcha frustrated. That is the whole thing the bully enjoys.<br />
<br />
She was a big sister and as the day wore on she was getting madder by the hour. Marissa while a girly girl, had two big brothers and a very very strong minded older sister so one thought that she was the quiet more passive one, but she was well-versed in holding her own.<br />
<br />
She walked into the lunch room and there stood the tall bully. Marissa walked up to him, said nothing and clobbered him on the head with her prized Trapper Keeper. For those of the next generation who does not know what that is, it is a closed binder that is solid and strong
<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCajlUOxbkptGLw1LgvTUuLa3mxt6qMMrhfAS6NmSEF8-GMo7ehaWA-ELmhque83RJ2UEaJHCFRI_NOXgfgKcNz_6Mt9merLkdieLwr_NgWAaVPeck9vEtp_00NgXuWn-9LhqtXQAGig/s1600/trapperkeeper.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1145" data-original-width="1099" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCajlUOxbkptGLw1LgvTUuLa3mxt6qMMrhfAS6NmSEF8-GMo7ehaWA-ELmhque83RJ2UEaJHCFRI_NOXgfgKcNz_6Mt9merLkdieLwr_NgWAaVPeck9vEtp_00NgXuWn-9LhqtXQAGig/s320/trapperkeeper.jpg" width="307" /></a>
<br />
<br />
The boy asked her "Why did you hit me?" Marissa responded, "Don't you ever tease my sister again and every time you do, I will clobber you with my Trapper Keeper and if anyone asks, I will tell them what you said and I do not care if I get in trouble, because you will to."<br />
<br />
The lunch supervisor stood by and smiled at Marissa and my daughter who never got in trouble, was well over head shorter than him figured she must have had good reason.<br />
<br />
Marissa talked about kids were allowed to work out their problems between themselves and the professionals had some sense. Today it seems as though they cannot work things out. Marissa was a peer volunteer and she helped mediate disagreements between students and help new students feel welcome. <br />
<br />
Today the bully's know the system and how to play the Gotcha game and the victim will be the one who will pay the price for trying to defend themselves. Many of the bully's are the children who feel different or are struggling and have issues of their own. The big old pecking order. There is no check and balance system in this legalistic society and the schools no tolerance programs is why the rise in bullying.<br />
<br />
I hope the bullying campaigns and the programs like Pacer Center offers about bullying and teaching and honoring differences will change the trends. <br />
<br />
But for Becca and the others, the siblings are our kids with special needs protectors. Anyone who bothers Becca or the others faced a tribe of Yurceks who will stand up to bully's. <br />
<br />
Marissa reminded me, that one can be frustrated with a sibling, but if someone else does something they will be sorry because they will stand up for one another.<br />
<br />
Anny<br />
<br />
<br />Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-4567290635332733742017-10-23T11:21:00.002-07:002017-10-23T11:22:58.859-07:00A Halloween Miracle in Teal by the Little Town That Could for Mackie<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsQRl9qxbLxB5qfnAjlTl70LzJp44ym9cQE6ot6Gk9Ojayi5TglaD3lt1vjKUvIedZMhq2-TBQkalvmWKJ6jgtoTUPmYybIPGhliX_JPgEwRZeqyxh_H9T5Xf-hVgbLjdTP8s43273TQ/s1600/H2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1440" data-original-width="960" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsQRl9qxbLxB5qfnAjlTl70LzJp44ym9cQE6ot6Gk9Ojayi5TglaD3lt1vjKUvIedZMhq2-TBQkalvmWKJ6jgtoTUPmYybIPGhliX_JPgEwRZeqyxh_H9T5Xf-hVgbLjdTP8s43273TQ/s400/H2.JPG" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet Treats 2017, Lancaster Wisconsin</td></tr>
</tbody></table>
<br />
Mackie is seven and loves Halloween. Mackie is our little guy who is medically complex and is adopted from the foster care system in our state. Halloween is his favorite holiday of the year just like his big brother Ian. Last year we made the trek to Universal Studios for the Halloween Horror Nights for his big brother. When Mackie who has Fetal Alcohol Syndrome, Autism and has neurological damage that affects his motor planning systems was 4, during the day he was silent, but "fixated" on "Charlie Brown and the Great Pumpkin". Over and over and over again he watched the movie on the TV, on his iPad sitting beside his Snoopy Build A Bear months before Halloween arrived. He could get his point across even without his speech and would not give up until we put on his favorite movie.<br />
<br />
One night in the middle of the night we heard him talking at his usual 3:00 am wake time! What Mackie was talking? Listening closely I could not hear what he was saying. I knew he was saying words, but ever so quietly. The next night I came up with a brainstorm and placed a tape recorder in his crib and replaying the tape to my shock discovered that he was "reciting" the entire script from Charlie Brown and the Great Pumpkin. The speech that left at 21 months was there and he was not just capable of simple words part of the day, but he could speak in complex sentences. I am not too sure, but I don't think I could memorize the entire script for an entire movie, how about you? Mac could.<br />
<br />
Like every kid, we would go "Trick or Treating" Mackie would silently sit in his wheelchair and be like every other kid. A trip to the fire station for our yearly picture which would arrive on this Mom's email the day after. The yearly pictures are a highlight of his scrapbook documenting his growth and looking back just how far he has come.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4yv8zPMH_lighK0vzpDF6b_c6gKINQnp65C1FzvWI-s4PLRA1pZ5EZGVw6bxagkE5-ZiMM92LW1aVDd4FGRm3TFIQs3_JbKF83yMp1iK7o96vHOmjAIbFNxR_wBFYsxpTsYkvL_TLlg/s1600/H19.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4yv8zPMH_lighK0vzpDF6b_c6gKINQnp65C1FzvWI-s4PLRA1pZ5EZGVw6bxagkE5-ZiMM92LW1aVDd4FGRm3TFIQs3_JbKF83yMp1iK7o96vHOmjAIbFNxR_wBFYsxpTsYkvL_TLlg/s320/H19.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mackie's Obsession</td></tr>
</tbody></table>
<br />
The Great Pumpkin was his 4 year old obsession and when were put him to bed after visiting a few homes "Trick or Treating" he was inconsolable. Mackie is quiet, he is a happy little guy. Something was terribly off. Rocking and putting on his favorite movie, snuggling his blanket, tears filling his eyes, he spoke up. "I need to wait for the Great Pumpkin". A sentence! He was sobbing.<br />
Thank heavens for Motrin and his sleeping meds, he finally dozed off. I ran on an mission to our 24 hour Walmart and came up with a plan to have the Great Pumpkin arrive and trade his bucket of candy he would not eat leave.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVW6YH2TUrz-WNJxlfLpM_kAHL5RlNoVwwHHBAhsVZtpyYN002odfD-X_QgzGolrMmL2yu-7k2Jp1wGYtoONSMjXIIO95orec9rAfKMu32YDbC8k_j2h43dUm0wk8GViapylytBD79Mg/s1600/GREATP.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVW6YH2TUrz-WNJxlfLpM_kAHL5RlNoVwwHHBAhsVZtpyYN002odfD-X_QgzGolrMmL2yu-7k2Jp1wGYtoONSMjXIIO95orec9rAfKMu32YDbC8k_j2h43dUm0wk8GViapylytBD79Mg/s320/GREATP.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dear Great Pumpkin</td></tr>
</tbody></table>
The following morning Mackie and I made a trip to the backyard and in the pile of weeds in my neglected garden a orange and black package awaited for Mackie.<br />
The Great Pumpkin came and Mackie's tradition was started and it solved our Halloween dilemma. Mackie has challenges with oral motor control, he has food allergies and intolerances that make eating candy something he cannot do. We have to look to see the ingredients are "Mackie Approved". Dye free, gluten-free, dairy-free, soy-free, peanut-free. The Great Pumpkin comes every year and his candy bucket is exchanged for a new wished for toy.<br />
<br />
We are veteran parents of dealing with children with food challenges. My children grew up in the l980s and l990s with celiac disease at the time when no one knew about this unheard of disorder. The kids looked forward to the GREAT CANDY Swap they had with their friends. I had to be the monitor as the older ones would take advantage of the smaller kids to make sure it was fair. But Dad always ended up with a bucket of Babe Ruth, Kit Kats and Butterfinger candy bars as no one wanted them. But the GREAT CANDY SWAP helped my children trade off the offending candy to their friends and they got the ones they could safely eat. I was a veteran of reading the fine print on the tiny pieces of candy and had no internet to help me!<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQcvXCMfcqFkwzX0VK_DNrd5cJUlEgMR9us2Zp0SlxuulBwixHg_a7YhREga25aTlU4JFZ4R8jX2KsCFEgJ5b9Qw8VkEmMK_scL_7RPcBGikyn09BrupZJCCNHhN-ry_-Ch6CWMmOa0A/s1600/FARE-Teal.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="338" data-original-width="338" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQcvXCMfcqFkwzX0VK_DNrd5cJUlEgMR9us2Zp0SlxuulBwixHg_a7YhREga25aTlU4JFZ4R8jX2KsCFEgJ5b9Qw8VkEmMK_scL_7RPcBGikyn09BrupZJCCNHhN-ry_-Ch6CWMmOa0A/s320/FARE-Teal.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://www.foodallergy.org/education-awareness/teal-pumpkin-project" target="_blank">Teal Pumpkin Project</a></td></tr>
</tbody></table>
<br />
I am so very thankful for food labeling laws and awareness. Facebook has become a lifeline for Parents with Special Needs. I share our day to day adventures with Mackie on my Facebook wall and last year I shared about taking him "Trick or Treating" downtown on the courthouse square. He had a blast, he got his candy and we put it up. But he could not have anything in his bucket. But the Great Pumpkin would solve that on Halloween night. But he participated. I thought nothing of it.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3jtfcs300fPCJ3WMGnfudrsQiyrRjXaqNILde4dkaF_aJXrLxHqTaKXVhVwdneAlg6_NEyw_Mii19e3D_JkK1j5u9lHwRFuWoL5Kx_lD0-o3Ly9OAsJweyZM-DoeO0GLsSc_pBCiFMw/s1600/H17.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3jtfcs300fPCJ3WMGnfudrsQiyrRjXaqNILde4dkaF_aJXrLxHqTaKXVhVwdneAlg6_NEyw_Mii19e3D_JkK1j5u9lHwRFuWoL5Kx_lD0-o3Ly9OAsJweyZM-DoeO0GLsSc_pBCiFMw/s320/H17.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://www.facebook.com/cruisinkids" target="_blank">Cruisin Kids: Lancaster, Wisconsin</a></td></tr>
</tbody></table>
<br />
I received a message from the shop owner who felt bad for Mackie. Karri the owner of "Cruisin Kids" has a niece who has challenges. She knows about inclusion. September 21 I received a Facebook message with a flyer about the 2017 Sweets and Treats event and the businesses will have allergy friendly alternatives. I stopped by to thank Karri asked what I could do to help. She said we needed to ask for the treats and she wished we had something to identify the kids who could not have treats.<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTjoY_FoD6wFMFiqk1tVdqYt1iA0agtcuWH12fZ2O9eij24NyqagmGSIK07HIo2E1I9F5JYHEkMTGjuEdDQfq0W6Sfn_WIYnYxA99t-wU7ycT2bSGF36NrBipLCDlh3VmopHJscsuh5w/s1600/H18.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTjoY_FoD6wFMFiqk1tVdqYt1iA0agtcuWH12fZ2O9eij24NyqagmGSIK07HIo2E1I9F5JYHEkMTGjuEdDQfq0W6Sfn_WIYnYxA99t-wU7ycT2bSGF36NrBipLCDlh3VmopHJscsuh5w/s320/H18.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thank you Target Dubuque, Iowa for the Buckets</td></tr>
</tbody></table>
<br />
I walked into Target and found in the Dollar spot 6 Teal Pumpkin trick or treat buckets. A helpful Dubuque Team member helped search the system for when the next buckets will arrive and I stopped by to pick up all the Teal in the box that was just off the truck. A trip to Target in Madison after a medical appointment found another 9. 25 Teal buckets and a bag of non-food treats would be delivered to Cruisin Kids before the big day.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja4wtOcp63VEeOyf1m8O1AOch7SaAuRjhf89PuhnLIhnuNOYEez_cU91S-UoJqqUQTO3wX6gNNGxvvdyGSgL_ByRpgb5vbbk1NAG7pjntQGjjQ0vjqd-1n96r4mXx7OzCmT06ITWxP5A/s1600/H20.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja4wtOcp63VEeOyf1m8O1AOch7SaAuRjhf89PuhnLIhnuNOYEez_cU91S-UoJqqUQTO3wX6gNNGxvvdyGSgL_ByRpgb5vbbk1NAG7pjntQGjjQ0vjqd-1n96r4mXx7OzCmT06ITWxP5A/s320/H20.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There are plenty of toys for treats at Target</td></tr>
</tbody></table>
<br />
Have you seen the Teal Trick or Treat Pumpkins while shopping for candy in the Halloween aisles. Learn about the <a href="https://www.foodallergy.org/education-awareness/teal-pumpkin-project">Teal Pumpkin Project</a><br />
<br />
This year at Halloween Mackie would be included. He could have Treats and this year he can use his new speech device to say "Trick or Treat", "Happy Halloween", "Thank you for the treats", ask the other kids "What is your costume", and say "I am Snoopy." His school speech therapist help us get his talking device and programmed in his Halloween messages.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7OgWBimDf2cSkVFzt1WPmwpCCauRZYvY5xLC1BKRVSdKpWcLEZ8sKaziOhHZ2NDRyyhQevk6qVctuJ1fIGhG-BkeV-rtIAIh452xnPs6Xxw-Zt_B20Cd79OYXswhnTJirHehiASu6dw/s1600/PBK.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7OgWBimDf2cSkVFzt1WPmwpCCauRZYvY5xLC1BKRVSdKpWcLEZ8sKaziOhHZ2NDRyyhQevk6qVctuJ1fIGhG-BkeV-rtIAIh452xnPs6Xxw-Zt_B20Cd79OYXswhnTJirHehiASu6dw/s320/PBK.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thank you Pottery Barn Kids, Charlotte, North Carolina</td></tr>
</tbody></table>
<br />
A phone call suggested by his big brother Ian to the Pottery Barn Kids Store in Charlotte, North Carolina found the sold out on line Snoopy Costume which someone had just returned and it was the only one left in the system. A trip to Build A Bear after a doctors appointment found his penguin side kick Furry's Pumpkin costume. Snoopy costume, check. Pumpkin costume, check. Teal bucket, check. Every morning he asked if it was Saturday. Finally the long awaited day arrived.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheMgtJM1G4FIBseRrMBVYk-XnJ4DAQrtUXUkDYCnMqZuXiYThXlxBLxDN9cvde4gmmd6h8MBU_M-a1wk_sR-a1x7muI_M6HSN_vgzDdz0AbZkxx5UJypXcLQGIAmuUSgziuTtQ5JPOfg/s1600/H13.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheMgtJM1G4FIBseRrMBVYk-XnJ4DAQrtUXUkDYCnMqZuXiYThXlxBLxDN9cvde4gmmd6h8MBU_M-a1wk_sR-a1x7muI_M6HSN_vgzDdz0AbZkxx5UJypXcLQGIAmuUSgziuTtQ5JPOfg/s320/H13.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mackie, Furry and Doctor Dad</td></tr>
</tbody></table>
Saturday 10/21/17 was Sweets in Treats in Lancaster, Wisconsin and a magical day. Every where we went, Mac has his treats. He played his social messages.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhINrPpaJGZkcOiWbIZiizS5LKxvw6nrOH2iO0X_4zPzbC4fYR82es3TpkVXY00RqmcdLAUyA6cZzOLUZsdZDK4DUVG7Ar53Pi1GtlgUYKIVNfH6_pK-7HEucWvNINJaSbxFg98C8NRHg/s1600/IMG_3073.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhINrPpaJGZkcOiWbIZiizS5LKxvw6nrOH2iO0X_4zPzbC4fYR82es3TpkVXY00RqmcdLAUyA6cZzOLUZsdZDK4DUVG7Ar53Pi1GtlgUYKIVNfH6_pK-7HEucWvNINJaSbxFg98C8NRHg/s320/IMG_3073.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Halloween</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ6-09R8VvM_JpOUiJL82HxvTERZJeQyVNiriSHR6mJvY-7Xlt1E-0cWLkd3PWI4rYbTVqC5kz9wy3PkTfoy0g4Fq9De06Ohe5PLz67C2SweHpXNt4EVd6enUcNQX74YPdUSvWf4yBqg/s1600/H6.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ6-09R8VvM_JpOUiJL82HxvTERZJeQyVNiriSHR6mJvY-7Xlt1E-0cWLkd3PWI4rYbTVqC5kz9wy3PkTfoy0g4Fq9De06Ohe5PLz67C2SweHpXNt4EVd6enUcNQX74YPdUSvWf4yBqg/s320/H6.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trick or Treat</td></tr>
</tbody></table>
<br />
As we walked the streets we would have people stopping and saying "Hello Mac". Kids from his school would make the point and stop to "talk" with him. I wish I had releases to show the videos of him talking with his friends! Adults who work in the school or the local medical system who work with him or his Doctor Dad. Mackie is his own kind of celebrity and it warms my heart that he is not ignored like many kids in a wheelchair often are. But he is included, he is popular and included. His side kick Furry was also very popular dressed as the Great Pumpkin. But that is another story for another day...<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtuRfjHY6CzMLopcczC_-yXK7VS-xEdFH3P4qfFsX2wanqdrqZRNe6CTL539npbw3OwDPhSG-yfCsQBhBsgl2rVy9eNkhrzqyhj6jAduDApzMVe07yLGWCuhgw26UorLTOQLizDUTZPg/s1600/H10.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtuRfjHY6CzMLopcczC_-yXK7VS-xEdFH3P4qfFsX2wanqdrqZRNe6CTL539npbw3OwDPhSG-yfCsQBhBsgl2rVy9eNkhrzqyhj6jAduDApzMVe07yLGWCuhgw26UorLTOQLizDUTZPg/s320/H10.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Hello Mac"</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-n1UrKVPisZvUSFRKPtXPY64IGKkNXQOnlcv4iN8YILpTm2Y6TEnTOBdK7_N0FI6lycaFo7rGzH9OQO9YTfo6TYpHpMU-cfpJn_TDlJT9Cm02BHhoUYqUe2bZDlNYGVb3_Iw3ZoIOGQ/s1600/H5.JPG" imageanchor="1" style="clear: right; display: inline !important; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-n1UrKVPisZvUSFRKPtXPY64IGKkNXQOnlcv4iN8YILpTm2Y6TEnTOBdK7_N0FI6lycaFo7rGzH9OQO9YTfo6TYpHpMU-cfpJn_TDlJT9Cm02BHhoUYqUe2bZDlNYGVb3_Iw3ZoIOGQ/s320/H5.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Thank you for the Treats" with help from his Novachat10</td></tr>
</tbody></table>
<div>
<br /></div>
Thank you Karri Schauff at Cruisin Kids and the businesses in the small town of Lancaster, Wisconsin for making the 2017 Sweet Treat Event inclusive for not only Mackie but for any child with food allergy.<br />
<br />
Karri knew about disability due to her nieces challenges and found a barrier for Mackie and came up with a solution. Writing this brings tears to this Special Needs Mom's eyes. She provided non-candy treats for every store or business and they were ready for Mackie! The world is full of challenges and this Halloween she helped me Miracle happen for Mackie. All 38 businesses in the tiny town of Lancaster went Teal and offered alternatives to food treats this Halloween.<br />
<br />
Thank you from a very grateful Mom and from a very exhausted Mackie!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgia_86_-5R8jHbAjCxeBJxBTJd1Oj2XjUj3znR1G9-woDsEF9aZgrxV0gTd2uTfAQp4iPy4abYbMNAplW_-gTXpV6YgnZnwxDgwQtaGYV_XgiLxh52A0Iz2X1jTAFkImlaGCfFARWGw/s1600/lucyandlinus.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgia_86_-5R8jHbAjCxeBJxBTJd1Oj2XjUj3znR1G9-woDsEF9aZgrxV0gTd2uTfAQp4iPy4abYbMNAplW_-gTXpV6YgnZnwxDgwQtaGYV_XgiLxh52A0Iz2X1jTAFkImlaGCfFARWGw/s320/lucyandlinus.JPG" width="240" /></a></div>
<br />
The Great Pumpkin will have to wait for the trade in bucket until Halloween night. But Mackie is fine with that. The Pumpkin Patch is ready and waiting for that Halloween night. And by the way, according to Mackie, there is a Great Pumpkin. The reason why Sally and Linus didn't get any presents, is that they didn't go to bed. He is magic and cannot be seen just like Santa!<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9qA5zLSj9UVxVDulEJF8ZkcyPIWWP04vDBFazSvi3CKq2uv3jcSPsT_UF5TEo3gFgf9HkN8bveg4E09PgJW4tLi-O3a6yNVCFOFJmMT5JgeOLtuVfeW555BW5BI6Uu9UMqqkQuxv1Og/s1600/H-macfurry.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9qA5zLSj9UVxVDulEJF8ZkcyPIWWP04vDBFazSvi3CKq2uv3jcSPsT_UF5TEo3gFgf9HkN8bveg4E09PgJW4tLi-O3a6yNVCFOFJmMT5JgeOLtuVfeW555BW5BI6Uu9UMqqkQuxv1Og/s320/H-macfurry.JPG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
Happy Halloween and Mackie and his best friend Furry is ready for the Great Pumpkin and enjoying his treats in the meantime! If you happen to be in our area on Halloween night stop by and meet Mackie and we are participating in the Teal Pumpkin project and have all sorts of allergy friendly treats. Our house is marked on the Teal Pumpkin Map at 1246 Park Road in Lancaster, Wisconsin.<br />
Stop by for Treats for Everyone and see Mackie's Pumpkin Patch!<br />
<br />
There is still time to stop by Target, Walmart, The Dollar Tree or your local store to pick up a bag of tiny toys, stickers, bubbles, pencils, or Halloween trinkets and paint a pumpkin TEAL and help a child who has an allergy or a special need be included this Halloween. <a href="https://www.foodallergy.org/education-awareness/teal-pumpkin-project" target="_blank">The Teal Pumpkin Project. </a><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTAANrit7xF1pgBoDDRQm9qtIpip3sODXGhyphenhyphenEgMU0voSPc3viIp64n4kanKs0axQB3K4-verrsBvDuSHFAcnWb1b67t0Zxzd5E1IjRP8QfoBqeqJ5Pr5zxfn9X-5kW1Qpjx9mYlPAKhw/s1600/H4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTAANrit7xF1pgBoDDRQm9qtIpip3sODXGhyphenhyphenEgMU0voSPc3viIp64n4kanKs0axQB3K4-verrsBvDuSHFAcnWb1b67t0Zxzd5E1IjRP8QfoBqeqJ5Pr5zxfn9X-5kW1Qpjx9mYlPAKhw/s400/H4.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mackie in his Pumpkin Patch</td></tr>
</tbody></table>
<br />
<div style="text-align: center;">
Have a very safe and miraculous Halloween!</div>
<div style="text-align: center;">
Love,</div>
<div style="text-align: center;">
Mackie and the Yurceks</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-57825940897530526002017-03-20T14:22:00.000-07:002017-03-20T15:24:51.558-07:00Special Needs Adoption and What Will It Mean for Our Kids.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4t5TE4qJv269wRZZYDwPTGrxcd9rI67oIiWaQw07uYOexl_HMYI4tSXaNI38kMMwLO1KDa6euJ33h_cw8CBbJDaV_oriaEgZCxQjae8hgJSW5sq9nEOrHMsMVED0qqErp5P1X2yJSpQ/s1600/13410681_10209803764636530_1911991903_o-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4t5TE4qJv269wRZZYDwPTGrxcd9rI67oIiWaQw07uYOexl_HMYI4tSXaNI38kMMwLO1KDa6euJ33h_cw8CBbJDaV_oriaEgZCxQjae8hgJSW5sq9nEOrHMsMVED0qqErp5P1X2yJSpQ/s320/13410681_10209803764636530_1911991903_o-2.jpg" width="320" /></a></div>
<br />
When we adopted our children from the foster care system, we were promised Medicaid to piggy back with our insurance to help defray the costs often not covered by insurance. For many special needs adoptions there are federal supports to help us help the children without bankrupting families.<br />
<br />
It has been a life-line for many special needs adoptive families to be able to get the necessary supports that insurance does not provide and to fill in the gaps.<br />
<div>
<br /></div>
<div>
Children's mental health and therapies are often not covered well by insurance. If you are lucky enough to live in a state where mental health parity has forced insurance company's to pay better. But the out of pocket expenses and deductibles can be expensive. </div>
<div>
<br /></div>
<div>
For children with developmental and physical issues, insurance often denies many of the therapies, equipment, specialized formulas and other things these complex kids need and having Medicaid is a must for special needs adoptive families.</div>
<div>
<br /></div>
<div>
With all the talk of block granting Medicaid and letting the states decide and ration the care along with per person caps and possible loss of any protections for these vulnerable children.<br />
<br />
I wonder what the future will hold for those who were promised Medicaid and appeals rights for our kids.</div>
<div>
<br /></div>
<div>
Right now, we struggle to get many of Mac's equipment funded under Medicaid already here in Wisconsin, what will happen when the budgets become even more stressed.</div>
<div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUrOEJCl8T7FaOid3gWIzvBpqU2SHJ5XXO-0Ha7A2wTNjY3JzcolC8gwwggdynP0A7aMxj-mDBZag_fK10rsywzT1QtSQPugpbb0ZFyfcIzIu8afvCvtQkKHK_VmRiUejbPG6gfMcgnw/s1600/IMG_1168.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUrOEJCl8T7FaOid3gWIzvBpqU2SHJ5XXO-0Ha7A2wTNjY3JzcolC8gwwggdynP0A7aMxj-mDBZag_fK10rsywzT1QtSQPugpbb0ZFyfcIzIu8afvCvtQkKHK_VmRiUejbPG6gfMcgnw/s320/IMG_1168.JPG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div>
<div>
Mac's wheelchair was denied by Medicaid. We finally got approval late last year from insurance and we had already met his maximum out of pocket insurance criteria of $6, 500 per year. Fortunately our insurance company saw the need and funded it despite Medicaid saying it was not medically necessary. <br />
<br />
Mac's potty seat that has allowed him to use a toilet denied by insurance and Medicaid. Mac's bath seat, denied by insurance and Medicaid. Mac's formula denied for years as a foster child and once adopted, and with help from high up was I finally able to get it funded. His Physical therapy denied. He did not need it, despite his involuntary movement disorders and being unsafe to navigate in the greater community. Has anyone seen Mac walk lately? Needed genetic testing denied by insurance and Medicaid does not cover it. I am currently waiting quotes for how much this will run us. I am told it will run anywhere from $2,000 to $5,000 out of pocket or more.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBasI9sa99NPonv_Sq96bclYRORA1_gpoxUsQn6UxrnzQZE1Usi1yQMO9erqrRA99HfDJbPK1OLxxAc_QIDGZX-IeCw0vVjDhMyObKqz_LF9BJPOHAmGYZeNVO1jwxvx44uuabFBm9uw/s1600/IMG_1239.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBasI9sa99NPonv_Sq96bclYRORA1_gpoxUsQn6UxrnzQZE1Usi1yQMO9erqrRA99HfDJbPK1OLxxAc_QIDGZX-IeCw0vVjDhMyObKqz_LF9BJPOHAmGYZeNVO1jwxvx44uuabFBm9uw/s320/IMG_1239.JPG" width="320" /></a></div>
<br />
Now we need a wheelchair lift and modifications, not coverable under Medicaid, but coverable under waivers. But our local county system says he is not eligible for any waivers. We need a ramp to get Mac's chair out of the house and for it to go to the bus. But not coverable under Medicaid and only through waivers which the county says he is not eligible for. There is another $18,000 to $25,000 or more.<br />
<br />
Medications, equipment, therapies, genetic testing that are ordered by physicians become a responsibility to the parent to provide. Parents can be put in a vulnerable position if they don't get them when both insurance and medicaid deny. Parents pay because they have to get it, or go without and risk the ramifications. Only parents get charged with medical neglect, if something happened because we didn't have the right equipment, therapy of medication. But not the Medicaid or insurances. We have appeal rights, but are those going to go away too as they were apart of the ACA or Medicaid entitlement?</div>
<div>
<br /></div>
<div>
He is already eligible for Medicaid and they told me I must pay for him to be covered under a waiver even though he came from the State of Wisconsin. I found rules that he is category A, and we shouldn't have to. But the county told me he is not eligible for any waivers due to his disability and they haven't screened him again and this is all in the current system. </div>
<div>
<br /></div>
<div>
Things are going to get more complex for special needs families. Wait lists already exist and they will get even longer. What will it mean for those with children who are Federally entitled because of their Special Needs Adoption and our promised supports of Medicaid and Adoption Subsidies?</div>
<div>
<br /></div>
<div>
Our president and republican congress do not like entitlements, so what will it mean for those who have taken in some of our nations most vulnerable children? We were promised an entitlement. </div>
<div>
<br /></div>
<div>
With insurance companies already are known to exclude many things medically fragile, developmentally delayed children, we face many uncertainties.<br />
<br />
There are many questions that I have about how the repeal of the ACA will affect my special needs children. Will our maximum out of pocket protections go away with the repeal of the ACA? Right now our maximum out of pocket for the family is $13,500 per year. Will my adopted special needs children and adults be eligible to remain on our insurance or they charge more for his complex needs. </div>
<div>
<br /></div>
<div>
I am a strong component of special needs adoptions, but until we know what they are going to do with the care and supports for our special needs children under Medicaid and the changes to insurance and how the block grants are affected come down, I would thinking twice about signing on the dotted line to adopt.</div>
<div>
<br /></div>
<div>
I am hearing no talk about how special needs adoptions and how the child welfare entitlements and grants are being affected. But so many of the other block grants, and other programs are on the chopping block, one can only wonder. </div>
<div>
<br /></div>
<div>
Many families cannot afford to adopt these children without Medicaid and waivers to get these children like Mac's complex needs covered. We have a high paying job, and we find ways to pay when our promised supports have failed. But even our family is struggling to figure out how to now fund the cost of the wheelchair van modification, the wheelchair ramp and the house modifications to accommodate Mac's needs and genetic testing. We just spent $40,000 on a new van we knew we had to cover ourselves. I pay for respite, hire cleaning help because I have to watch him so very closely. The costs just keep mounting. But someday we need to save to retire. <br />
<br />
The schools get Medicaid funding for helping under Medicaid and will those be affected? How about special needs funding and rules under IDEA be affected in the upcoming legislation?<br />
<br />
I am not very hopeful that our government cares about our most vulnerable children. Those who used to be foster children who found families and were promised support to help them in the future. I would love to be wrong. But it is a complex system and I doubt those in government understand the complexity of special needs adoptions, child welfare, special needs education, and insurance with catastrophic needs. Few understand just how expensive and complex children from who have faced trauma, abuse, neglect or live with prenatal brain damage and genetic conditions can be. The powers that be need to think about how block granting Medicaid, repealing the ACA, and will mesh with the promised safety net for this very special population.<br />
<br />
<br />
Anny<br />
<br />
Postscript: The state just reduced the amount of ABA therapy that was requested. Our insurance will fund the major amount and all that would actually go through the state would be the deductible and copays so they actually save money on Mac. But kids on Medicaid in Wisconsin are being offered less than kids on insurance that is listed on the State of Wisconsin Insurance Mandate.<br />
<br />
<br />
<br /></div>
</div>
</div>
Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-32435212438229924032017-01-06T10:47:00.002-08:002017-01-17T19:56:53.729-08:00Wake Up Adoption Community and Start Asking How Block Granting Medicaid Would Affect our Adoptive FamilesWhen we adopted our children with Special needs from the foster care system. They came with a promise of Medicaid to defray the catastrophic costs of children with special needs, mental health challenges. It has been in important life-line to help our children.<br />
<br />
Our children were lucky to be able to be put on our private health care insurance. Before the ACA we had mental health caps of $10,000 per year for my adopted children. I paid privately for most of their care as both insurance and Medicaid would not cover it. But without the ACA will we go back to the days of limited coverage, lifetime limits and I know of parents whose kids maxed out their health insurance policies for their medically complex special needs kiddos leaving no coverage for their parents and siblings when they maxed out the $1,000,000 lifetime cap for the family. Many workers back then told families to not put them on their private insurance. Things were complex.<br />
<br />
But with the Repeal of the ACA many questions are being asked? Will they still get coverage after 18 and even more troubling, for those who have adult disabled adopted children they are in jeopardy of being able to stay on their parents plans. What will happen to my children with preexisting conditions if I have to switch jobs? Will they be uninsurable?<br />
<br />
<a href="http://www.cbpp.org/research/health/medicaid-block-grant-would-slash-federal-funding-shift-costs-to-states-and-leave" target="_blank">We are hearing much about talk about Block Granting Medicaid.</a> Will we lose our entitlement for their health, mental health and dental care if they give the block of money to the states and they change the rules? <br />
<br />
What will that mean for the hundreds of thousands of families who took on children from the foster care system with an entitlement to Medicaid and its protections? What will it mean for the thousands of children currently in the foster care system who are awaiting homes? According to NACAC over 50,000 children found homes each year and with of Federal Supports of Medicaid and Adoption Assistance helping defray the complex costs of parenting these at risk and vulnerable children.<br />
<br />
We were made a promise of Medicaid to help pay for the many therapies, services and equipment that this vulnerable population needs. Would the states could be allowed to no longer have to provide EPDST (Early Periodic Screening, Diagnostic, and Treatment) under which children enrolled in Medicaid receive both regular check-up and coverage for all medically necessary treatments necessary that they check-up finds no longer be provided and the ability to appeal denied services?<br />
<br />
The Federal Government moved these kids into families and now they want to change our safety net? They made us a promise and they need to think about how it may affect the promises they made to tens of thousands of families who adopted some of America's neediest children.<br />
<br />
When is the adoption and foster care communities going to wake up to the fact that our safety net is in jeopardy? For the families with private adoptions or overseas adoption what will it mean for special needs waivers as they are optional? What will it mean as they give the states only so much money to service the Medicaid Population will the entitlement that was promised us until we raised these children be honored?<br />
<br />
We need to wake up that they are proposing to Block Grant Medicaid and that will give the states authority to decide what services, what money, what they provide this vulnerable population.<br />
<br />
What will it mean for Mackie? He has FAS and they say it will cost over $2 million dollars in his lifetime for care and services. Will he get his wheelchair next time which they already denied even under the current system? Will he be able to get his braces or his therapy services? Will they cover his elemental formula at over $75 a day? <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZwugLNFzb2ZVA7UxbJjUigv_Ww7619l04u2kGFvJNBKZWqLMWw_oHBtE2PyKd5sHKRCZKAFh7is1wbjJe_yQGlbZNSdymCt9IQipwKfwB-inngPtiSafxUUmFMnXplADLlymK7p52hQ/s1600/13446350_10209803765116542_93635968_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZwugLNFzb2ZVA7UxbJjUigv_Ww7619l04u2kGFvJNBKZWqLMWw_oHBtE2PyKd5sHKRCZKAFh7is1wbjJe_yQGlbZNSdymCt9IQipwKfwB-inngPtiSafxUUmFMnXplADLlymK7p52hQ/s320/13446350_10209803765116542_93635968_o.jpg" width="320" /></a></div>
<br />
What will it mean for his future? <br />
<br />
How many adoptive children who need specialized mental health services due to their traumatic and abusive histories will struggle with getting the mental health and services they need from Medicaid? Will the important waivers still be there? My Mackie's health insurance has saved the taxpayers over $60,000 to $80,000 annually in covered services and while our promised Medicaid back up denied most things and to get his formula covered I had to file and appeal for an administrative hearing.<br />
With a block grant, we could lose the right to appeal!<br />
<br />
The tragedy of Custody Relinquishment to get mental health services which already had been a problem of the past, is it due to repeated? Insurances still have limits on hospitalizations and ours are only 30 days. Children with severe mental health needs are still not adequately served by insurance companies in many states. Often times the child after an out of home placement of 30 days can be covered under Medicaid as a family of one, and parents income does not count. If block grants come in all bets are off as states can make their own rules and cover who they want. Will our adoptive kids with PTSD, mental health and prenatal exposure challenges have to find themselves in the justice system to get needed help as they begin to RATION federal Medicaid dollars?<br />
<br />
We need to speak up and reach out to our legislators and ask these hard questions!<br />
<br />
Wake up Adoption Community and learn about what Block Granting Medicaid may mean for the
safety net services and make sure they consider our kids needs during their discussions.<br />
<br />
Anny<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-16852393926341628442016-03-29T13:54:00.002-07:002016-04-07T05:21:29.697-07:00Mackie and Technology: Adapting and Downloading Worksheets for Preschoolers to iPad<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkyN8JA0kGajiLM10L_5UgF07r5uWw49o1tTvdeU5TrS-6M06ZXDR1gRitW6SAwd76ErvcAaE8Bbj7-yLW7C6-ssdErnWuccTiuWEx62ZkzE5gXdGUSaxNw9uPDZv80EQriJisVNmGYw/s1600/MACcoloring.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkyN8JA0kGajiLM10L_5UgF07r5uWw49o1tTvdeU5TrS-6M06ZXDR1gRitW6SAwd76ErvcAaE8Bbj7-yLW7C6-ssdErnWuccTiuWEx62ZkzE5gXdGUSaxNw9uPDZv80EQriJisVNmGYw/s320/MACcoloring.jpg" width="240" /></a></div>
<br />
Getting ready for Kindergarten and we know that for Mackie to be successful, assistive technology and adapting his worksheets will be necessary. With Mackie's hypotonia, his motor planning issues and even more complicated Chorea and its involuntary movements when he tries to use his muscles.
<br />
<br />
For years Becca struggled with getting her written work to paper. Years of a scribe, years of hand over hand with her hypotonia, motor planning issues, and her dysgraphia taught me what she needed and we had to use a scribe, notes, adapting worksheets, verbal answers and all the low tech solutions to help her. But those all required dependence on adults to help her. I will not do that for Mackie. He will need help in many places, but he also needs to be as independent as possible.<br />
<br />
But what he really needs is to learn early on that it is OK to do things differently, instead of doing it just like everyone else and NEVER measuring up. Becca learned that her written work never was good and that she was different and ashamed of her messy handwriting. To many teachers faulted her for not trying hard enough, not taking more time and marked her down for trying her best. But best<br />
was never good enough.<br />
<br />
Mackie is growing up in the days of exploding technology and he is tech savvy! So why not use it to help him! He knows his way around the iPad and can find absolutely anything he is looking for.<br />
<br />
He colors using his dabbers, he has many accommodations written into his IEP and with his IEP coming up planning for Kindergarten I had to get busy and figure things out!<br />
<br />
There are coloring apps with built in worksheets he loves to fill in. There are apps for reading, which he will need. There must be a way for the papers to be loaded onto this IPAD and he can do them on his IPAD.<br />
<br />
Searching the internet, I found one and only one set for preschool, kindergarten tutorials on<br />
<br />
<a href="http://creativelearningfun.com/2012/09/transferring-worksheets-to-your-ipad-plus-freebie.html" target="_blank">Transferring worksheets to your iPad</a><br />
<br />
I downloaded Dropbox to my computer. Searched my <a href="https://www.pinterest.com/annystribe/preschool-printables/" target="_blank">Pinterest Preschool Pins</a><br />
<br />
Followed the directions and uploaded a file or two to practice with.<br />
<br />
Then heading over to the iPad <br />
Downloaded <a href="https://itunes.apple.com/us/app/goodnotes-4-notes-pdf/id778658393?mt=8" target="_blank">Good Notes 4 & PDF </a>($7.99)<br />
Downloaded <a href="https://www.dropbox.com/ipad" target="_blank">Dropbox for iPad</a> (FREE)<br />
<br />
Then followed the instructions on the transferring worksheets to your iPad link above.<br />
<br />
<br />
Mackie's first worksheet!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0Ux4L9jVycAtwHZCk8jbcedRwEJzqYg0Dw6B9PjnyuUZzrRWbamt8bhtXyp6vhvLa8AzBrdlc3GUUrkT1FFoXy0KXL_AYcI8IO6aPPQ-z0059uQ8YDWmMLN-LEwFKmzYDuhMIWvV29g/s1600/worksheet1.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0Ux4L9jVycAtwHZCk8jbcedRwEJzqYg0Dw6B9PjnyuUZzrRWbamt8bhtXyp6vhvLa8AzBrdlc3GUUrkT1FFoXy0KXL_AYcI8IO6aPPQ-z0059uQ8YDWmMLN-LEwFKmzYDuhMIWvV29g/s320/worksheet1.PNG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
I figured there must be a way to be able to download and color through the Good note app. I used the highlighter and selected a wider width. Added custom colors for more primary color choices. One can even erase if they want to change the coloring. Mackie got it quickly and he was pushing me away and figuring it out all on his own after I had it set up and only a few seconds of trying to help.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSLpyeXtTKHZm4kB5UP7480C7TdAun2OzFWJd8IpOOU-C3nOYUvqQ-ZYyylw49td4TDEmv_SomTkfzb2TPQ8KBZZZBCYrDHCn1kn7C1aJp1-0UZoXxYbZRU2lpuN5DPOEMJVYzmhB-UA/s1600/t-rex-coloring-page.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSLpyeXtTKHZm4kB5UP7480C7TdAun2OzFWJd8IpOOU-C3nOYUvqQ-ZYyylw49td4TDEmv_SomTkfzb2TPQ8KBZZZBCYrDHCn1kn7C1aJp1-0UZoXxYbZRU2lpuN5DPOEMJVYzmhB-UA/s320/t-rex-coloring-page.gif" width="228" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
My demonstration of coloring using the highlighter feature with the widest width stroke.
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiatf65CJbk1JXmtzG73eqDvGQodl_nh1rPMHaYRwvWmnqrfbdOImQmpSvU-RtOVWAKn46jJN_mrarfSpOODTvzlGeC3MFnkdKQ8432EHpq77F3tCieq9JIFlx94kRCBSbC9Ue-D2Akww/s1600/TREX-Done.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiatf65CJbk1JXmtzG73eqDvGQodl_nh1rPMHaYRwvWmnqrfbdOImQmpSvU-RtOVWAKn46jJN_mrarfSpOODTvzlGeC3MFnkdKQ8432EHpq77F3tCieq9JIFlx94kRCBSbC9Ue-D2Akww/s320/TREX-Done.JPG" width="240" /></a></div>
<br />
<br />
On his iPad I screen shot his work and then use email to the teacher!<br />
<br />
<br />
I am so thrilled with finding and playing with this technology and he will be able to do the worksheets like his friends! Just a little differently.<br />
<br />
I am sharing my learning to his occupational therapist, teachers and while I am at it, to the special needs world. Maybe it will help others learn and adapt to our kids needs!<br />
<br />
<br />
AnnyAnnystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-65608623833267593342015-10-30T13:01:00.000-07:002015-10-30T14:17:47.913-07:00An Autism Win and A Story: Fighting for What Was Right.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLnJfFBRpgY3EooV-C7auGwcErKWQjSNSR4CDIwiBtv_uEa4lfhQOHbygFNh02qmKq2PN6ROgB4S6HcAgkILZBC2msdmxf0LCY9QKzjGAzdiXvDgPOW-_0H-u7yn8Gjds4pyhg3ftj1g/s1600/fight.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLnJfFBRpgY3EooV-C7auGwcErKWQjSNSR4CDIwiBtv_uEa4lfhQOHbygFNh02qmKq2PN6ROgB4S6HcAgkILZBC2msdmxf0LCY9QKzjGAzdiXvDgPOW-_0H-u7yn8Gjds4pyhg3ftj1g/s320/fight.JPG" width="320" /></a></div>
<br />
I have learned the very hard way that I had to fight for services and treatments for my children.<br />
With our daughter Becca who was born with Noonan Syndrome I had to learn the complex world of catastrophic medical needs. Fighting for her survival and the bare necessities of even the basic necessities for our family. We had to rely on the public system for her medical care when our two insurance companies had refused to pay for her over a million dollars in medical bills. We were blessed to be a state that helped us find the help that Becca needed. We promised to pay it forward.<br />
Over the years <a href="http://www.healthaffairs.org/podcasts/tag/ann-e-yurcek/" target="_blank">I learned that our fight for Becca was not just for us</a>. I have found myself learning way too much, advocating and writing at very high levels. I learned that I had to become an expert in navigating a very complex health care system.<br />
<br />
When we adopted our daughter Shay and her siblings, we were promised Medicaid and supports to help us meet their complex needs from their prenatal exposures and history of abuse and neglect that had landed them into the foster care system. I got to firsthand learn the broken system of Children's Mental Health care and breakdown between the Foster/Adoption Care systems. I found the lack of evidence based services and our family desperate for help for some very complex traumatized children. Our insurance company paid for had limits. The Medicaid system said our kids were from another state and that state was responsible for my daughter's recommended out of home placement.<br />
The system gave me 60 days to relinquish her back to the foster care system. I reached out to lawyers and no one could help me. I had made a promise to my daughter that I would give up on her.<br />
<br />
I wrote in wee hours of the night my thoughts about having to tell my daughter, that she would not only lose her family, but her biological brothers and sisters who were now our children. I emailed that letter to high places and less than three hours later, my email was answered by Hilliary Clinton's secretary saying someone would look into it. Empowered, I began my long road to fighting for Shay.<br />
<br />
Email after email, letters from very high places, but in the end after many months of learning and reaching dead ends, I found my daughter had rights under Medicaid. I read and highlighted the books I found on the Bazelon Center for Mental Health Law. I learned to read the law jargon and would file for a hearing for my daughters recommended residential care. I used backdoor relationships and people who were placed in my life to garner help from our states mandated Protection and Advocacy advocates and lawyers to back me up. I had written my request for the Appeals Hearing and we went back and forth on arguing what was in her best interest. An independent second opinion supported our family and her providers stance and after 2 years my daughter being stuck in the state psychiatric hospital, our Community Mental Health system who approved or denied her Medicaid benefits approved her placement, only 18 hours before going in front of the State Fair Hearing Judge.<br />
<br />
No one knew how to help me, I found that the state of Michigan, didn't have written into their state plan the federal EPDST mandate. Things changed, kids under Medicaid had rights to treatment if medically necessary. <a href="http://www.nacac.org/adoptalk/homecoming.html" target="_blank">The story of the fight for Shay would spread and a Mom beat the system using my daughter's right to care. </a><br />
<br />
I learned way too much and had to become an expert for my children. I<a href="http://www.annyurcek.com/" target="_blank">n 2006, would chronicle our story in my long procrastinated memoir. </a>Taking me to places I did not want to return. It was just too much, but to help others I ventured forward.<br />
<br />
We moved to Wisconsin, my kids grown. I gave up my fighting and advocating for a simple life in the country where my husband practices medicine. The kids grown, two of the girls have entered the adult systems and I continue to learn the complex medical and developmental disabilities world. Becca has both Noonan Syndrome and Autism and Detamara Fetal Alcohol Syndrome and Autism. We had time on our hands and opened the doors once again to foster care and adoption.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv-uqZN10SUYUl3TrSI8yoBiis7iigp0ADBTn1Nw4X9kTAGdZon284IEgiuK-oARA3xU5gl3qe3O8BxiZvaKRj4Gt5DMHBM6_9BSLlXvO_Hv6CRA6Ha8wkKZtRSRRp0obcVUywVe7L4A/s1600/8698_10200850167350270_1206504988_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv-uqZN10SUYUl3TrSI8yoBiis7iigp0ADBTn1Nw4X9kTAGdZon284IEgiuK-oARA3xU5gl3qe3O8BxiZvaKRj4Gt5DMHBM6_9BSLlXvO_Hv6CRA6Ha8wkKZtRSRRp0obcVUywVe7L4A/s320/8698_10200850167350270_1206504988_n.jpg" width="213" /></a></div>
<br />
Our little Mackie entered our lives when he was l7 months old fragile and tiny. The skills we had garnered with Becca would help us help our little guy. Born and abandoned, prenatally exposed to alcohol and other drugs and premature he needed our help and his needs were promised to be met by the state's Medicaid Plan. I would face denials for his medical equipment, denials for his expensive formula, but his medical bills were paid for. We would use his foster care subsidy to buy what we were promised by the state. With no social worker or parent to appeal, we were forced to buy them ourselves or be in danger of medical neglect for not having the formula or equipment that he needed.<br />
Fortunately for us, we had the resources to pay for it. I wonder how many of the foster parents who have children who are medically fragile went without the equipment, medications or therapies that the children needed. I learned that not only foster parents, but special needs Children on Medicaid in our state faced huge delays and often were denied the treatments, equipment and medications ordered by their physicians.<br />
<br />
After is adoption, our state adoption worker asked whether we wanted to add him to our insurance plan. Many parents didn't due to the catastrophic needs of these special kiddos. I knew that there is a two class Medical care system, and with Medicaid paying poorly and doctors waiting sometimes too long for payments from seeing both sides of the care system, I chose to put him on our plan. He would be able to get the best care. Even after adoption, we found that our insurance had huge holes in paying for some of Mac's needs. We continued to pay for his formula that was not covered by WIC, and equipment. Medicaid would just keep asking for more and more information and just before a decision was due, it would be thrown back to square one for not meeting a timeline or not being able to meet a threshold of proving the need. No decision means no rights to go to fair hearing I was told. <br />
<br />
I would find and advocate for the best for Mackie. He got early intervention from the Birth to three program. We saw that though he was slowly making gains, he began to lose some of the skills he had previously. He was sent to genetics where he was discovered to have Fetal Alcohol Syndrome, microcephaly, and a severe failure to thrive. He wouldn't eat. Appointments and more appointments and patience and when he lost his two word sentences even though he couldn't yet sit up, he was sent for an evaluation for Autism. The neuropsychologist at 2 said he had FAS and he looked at people and didn't do any assessments. Heading to the rehab doctor she saw that he was very different than before and sent him for a second opinion evaluation at the renowned U of WI Waismann Center.<br />
<br />
Mackie was given evidence based testing and found to have a score in the moderate to severe level and he was given an Autism Diagnosis. In her report she wrote:<br />
<br />
"Impressions: Mc is a 2 year 10 month-old little boy who has significant global developmental delays and an autism spectrum disorder secondary to prenatal alcohol exposure and probably family history. His microcephaly and small size are secondary to the prenatal alcohol exposure.<br />
<br />
There are 2 levels of developmental description. On one level, we try to figure out the best "descriptors" for a child's developmental profile. For example, Mac has global developmental delays and an autism spectrum disorder. These descriptions of his development. The diagnosis of fetal alcohol syndrome, and possibly familial factors, are the reasons for the delays. In other words, Mac has developmental delays because of his exposure to alcohol prenatally. These are not either/or conditions. A child can have an autism spectrum disorder and real alcohol syndrome. One is the description, and one is the cause."<br />
<br />
In closing in the report:<br />
<br />
Mac's score on the ADOS-2 toddler module, his total score was 27, which is the moderate to severe level of concern. There are some questions to be resolved regarding Mother's application for the autism waiver. Biological father could not be found to terminate parental rights and mother had already abandoned him, and this has continued to delay Mac's adoption by the Yurcek family.<br />
<br />
It is urgent that a placement decision be made. Now that mac has a diagnosis of autism, he will benefit from early intensive behavioral intervention; however he will not be eligible for that service for about l8 months because of the long waiting list at this date. Any delay from the indeterminate guardianship or difficultly finding Dad to sign the TPR puts Mac at greater risk of not receiving intervention for his autism in a timely way. Early intensive behavioral intervention is effective in moderating the course of autism for children who are able to receive it. We should try our best to minimize any delay in getting Mac access to this program. It is his best chance to maximize his developmental potential. This is medically urgent issue. writing 2/13/2013.<br />
<br />
With him being in foster care, his care was delayed. I called to put him on the waiting list only to be told I did not have the right to do so. His social worker wouldn't advocate for his care either.<br />
We would push our efforts into getting him adopted and then we would be able to find his care.<br />
<br />
<a href="https://www.autismspeaks.org/advocacy/advocacy-news/faqs-2009-wisconsin-autism-insurance-reform-law" target="_blank">I found that children with autism in Wisconsin who have insurance had a mandate to care</a>. I knew once adopted we could begin the process to get him the Early Intensive Services he needed. <br />
<br />
We adopted Mac on April 16, 2013 and he was now legally ours. We were told to put him on the Autism Waiver Waiting list and I made the phone call to do so. The worker told me that we had our insurance coverage and we didn't qualify to put him on the state waiting list. He had Medicaid and we had to use that to back up our insurance. I resubmitted to the Autism state waiver as I learned that I had been inappropriately denied. He was now waiting for our back up coverage for his Medicaid autism services. But now the waiting list was over 2.5 years long. The state rule for autism is that a child could not have had two years of services before the slot of the waiver and by the time Mackie's name was to the top of the list he would be ineligible. Leaving us to pay once again for what Medicaid should have.<br />
<br />
After trying to garner coverage and research on where to go we finally got a referral to a provider who was highly recommended. Intake and then my husband's employer sold the clinic just as Mac was authorized for services. Now another 4 month delay while waiting for our new insurance information and then authorization, Mackie would finally at long last start services. February of 2014 Mackie started Early Intensive Behavorial Intervention, ABA therapy through the Wisconsin Early Autism Project.<br />
<br />
I learned more and more about the Medicaid Waiver Waiting List, the fact that children with Autism who have Medicaid would wait and wait and kids from families with insurance didn't. I knew that while I could afford Mackie's Autism services, there were many families who couldn't. They didn't have the benefit of the neuropsychological and developmental services that my insurance pays for. Those lucky enough to get diagnosed who are poor or on Medicaid for being disabled often wouldn't be found to have autism until age 3 or 4 and with the two year plus wait and the few months that it takes to get services rolling may be already 5 or 6 before they could begin the 3 years of intensive help.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
I took on the fight, I had been following the <a href="https://www.autismspeaks.org/blog/2012/03/26/federal-judge-rules-medicaid-must-cover-aba" target="_blank">rulings out of Florida from 2012 </a>when the courts ruled that ABA was an evidence based practice which opened the door to the EPDST mandate to be used to rule that Florida's children had the right to Autism serves. <a href="https://www.autismspeaks.org/advocacy/advocacy-news/order-directing-florida-medicaid-cover-aba-upheld-appeal" target="_blank">The appellate court upheld the ruling</a>, but ruled that it was not an open entitlement, but a case by case prior authorization supported by the doctors and screenings recommendation.<br />
<br />
I reached out to the State, I had been fighting to get Mackie's waiver slot and understand how the program worked for an adopted child. I found that I would be asked to pay 41% of the costs and also pay for case management services which was 41% of the costs of the services. There were questions if we had to pay 41% of what our insurance company paid and every report and service needed to be dually authorized and looked at even when we hit our maximum insurance ceiling and they paid 100%. Mackie already had Medicaid per federal entitlement per our adoption contract with the state and they were going to charge us to buy in? The state's rule and county's understanding of the rule were at odds. Just when I had all but given up, <a href="http://www.medicaid.gov/Federal-Policy-Guidance/Downloads/FAQ-09-24-2014.pdf" target="_blank">a Bulletin from CMS I had the ammunition to fight on. </a><br />
<br />
I had no choice but to go to the state courts to sort out the complexities of what to do with Mackie's Autism care. I was just a Mom a long time ago and I had learned that an ordinary warrior Mom can win against the odds.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_C1B5fon1_8-a_MqtSZvN6TbxNuOeCr9sD75D2W-X-6bIlGJ0cab7czTweOSHZRsEQRMmKXiqGMyufWAHwVyLiEYFeSzEn83oX9sT_nUpZ7Y_sAeeyFyW9LlkHz2CIU7ho9OJpLv16A/s1600/1400811_10201977042521445_1175324994_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_C1B5fon1_8-a_MqtSZvN6TbxNuOeCr9sD75D2W-X-6bIlGJ0cab7czTweOSHZRsEQRMmKXiqGMyufWAHwVyLiEYFeSzEn83oX9sT_nUpZ7Y_sAeeyFyW9LlkHz2CIU7ho9OJpLv16A/s320/1400811_10201977042521445_1175324994_o.jpg" width="319" /></a></div>
<br />
<br />
I filed for a fair hearing in August of 2014. With submitting a 2 inch binder of the <a href="http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Benefits/Downloads/EPSDT_Coverage_Guide.pdf" target="_blank">EPDST Guidance to States, </a>the Florida Rulings, Mackie's records. The story here becomes long, at first the Fair Hearing Division says that we had no standing to go to hearing, but in the end, we received a Hearing date. The state's attorney said I had not submitted for a Prior Authorization, but there was no system set up for prior authorizing a service that required a wait list. The state's attorney even went so far to say that I had not had McKellan seen by a physician since February 2012, even though the binders included numerous documentation of services and visits otherwise including his two visits to the Waismann Center where he was diagnosed with Autism from February 2013.<br />
<br />
Faxing documents, submitting the evidence binder to the states attorney we would go to hearing. The day before the hearing I would receive a letter saying I had the right to prior authorize his ABA therapy to the state. Settling with the hearing judge and putting on the record, that I could prior authorize his services, I reached out to the WEAP provider.<br />
<br />
The billing and prior authorization service for something that had never been done put us in the no-man's land of trying to do something never been done. I received a letter which I gave to the provider and we began the lengthy process. Letter after letter, more information needed and more information needed. The state said he did not have autism as the early provider had claimed. She had not done evidence based testing and the state refuted the renowned provider who did the evidence based testing. Then the state claimed he was too low functioning to benefit. They demanded psychological testing and then claimed it was not adequate. Demanding an independent second opinion from an outside provider. In the meantime, I had helped a couple of parents in a couple of other states to prevail using the same argument. Other states were announcing their new Autism services. But I was being told my child was not autistic, he was just Fetal Alcohol Syndrome. He was too developmentally delayed to learn. What did they know of Mackie? They could not see the progress, the programming did not have base measurements, they did not have room for his processing delays in the programming. He could not do it under the 7 second rule. He requires 12 to 15. He had been since diagnosed with Visual differences and the school was helping us understand his visual needs.<br />
He had co-morbid conditions and his fine motor skills held him back but he had made 26 months of developmental gains in 12 months since starting services despite the documentation.<br />
<br />
I received a letter that I needed to get Mac a neuropsychological testing at state's expense with the first provider who said he didn't have autism. From my history and knowledge I knew that that was not an independent opinion. I wrote a letter to the state and then agreed to the assessment citing that if it did not support Waismann Center's assessment that I wanted an outside opinion from out of state.<br />
I took Mac out of therapy for the day and headed to Madison for the appointment, only to learn they had no record of an appointment. The next day was the deadline for us to submit all information needed by the state to continue the prior authorization. I had sent off a certified letter the day before asking for an extension of the timeline as we were following through with the demands the state had place on us for Mac.<br />
<br />
Phone call after phone call to the state unanswered. I could not follow through on getting the required neuropsychological testing. I called the provider and they knew nothing of the states offer for payment. Now I had to get a private insurance authorization and agree to pay the nearly $5000 for an assessment, and it was now a four month wait after approval. This is not what the state had said in it's letter. I called and no response. I gathered the records from WEAP for an appeal for the states lack of making a decision in a timely manner. I found a line in the EPDST guide to states that the state cannot use a delay a decision due to a PA request. It was now months later since beginning the process. I wrote a letter to ask for a hearing on May 28, 2015 for a hearing on the grounds of delay in a decision, the failure of the state to implement EPDST for McKellan's ABA therapy and the a decision for a truly independent second opinion.<br />
<br />
Mackie's WEAP therapist and I both received phone calls asking important questions and wanting more information and for the first time I was allowed to talk to someone about my son's needs and the timeline for services. I advocated and together we worked out a solution. June 23, 2015 I received a letter from the State of Wisconsin and the Office of the Inspector General approving his services.<br />
<br />
The fight was over, the state was working on figuring out how to implement the Bulletin from CMS from July 2014 about Autism services under Medicaid. I knew that I had the skills to fight for Mackie, but most importantly for those who could not fight for themselves.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Ypt-IP_Qg28ZWp_1-S5SQdy49xfiGSe136KvHuSXMjlz1XsVIdT_oMghucYAH1RBOxalriYVeKblsV7P43J31RGMit_DFr_RgND_24tJn7Y2l0i7DTdw2rqJaM4ApB-6hbUbeiJ6dg/s1600/fight2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Ypt-IP_Qg28ZWp_1-S5SQdy49xfiGSe136KvHuSXMjlz1XsVIdT_oMghucYAH1RBOxalriYVeKblsV7P43J31RGMit_DFr_RgND_24tJn7Y2l0i7DTdw2rqJaM4ApB-6hbUbeiJ6dg/s320/fight2.JPG" width="240" /></a></div>
<br />
<br />
WEAP is working on the new demands on measurements and baseline testing and justifications and measurements required by the state. The system needs to get ready as the wait list will soon close and those children will be moving into therapies and services.<br />
<br />
Yesterday at long last, I found the announcement from the <a href="https://www.dhs.wisconsin.gov/clts/waiver/autism/index.htm" target="_blank">State of Wisconsin about Behavioral Treatment and Services for Children with Autism</a> and the 2016: A New Behavioral Treatment Benefit Under Wisconsin Medicaid and Other ForwardHealth Programs. No more waiting lists for the children under Medicaid and they have the right to prior authorize treatment. I just hope that the process is smooth and that they do not require the hundreds of pieces of documentation they required of us to keep kids from services. I just praying and hoping that it sees Mac's progress is a testament to just what early intervention can do. Mackie only waited 12 months to start treatment, other children waited and lost out on precious time.<br />
<br />
No more will poor children have to wait and not have the chances that kids with insurance in Wisconsin who are covered under the insurance mandate. The gap is narrowed. The next step, to make sure that poor children are identified early and assessed and intensive help given early. The providers will also make assessments for the co-morbid conditions and not just blame everything on behavior, but looking more closely at the root of the behavior and accommodate for success. Schools will be having to coordinate with the schools to optimize success. Paying for services early on has been proven to save money and improve the outcomes for children on the Autism Spectrum. Mackie has made a smooth transition to 4 year old kindergarten, his 26 page IEP and paraprofessional a testament to a school district following through with what he needs. He is thriving and blowing away the professionals. More and more answers are coming, he has been diagnosed with Chorea and we are learning how to accommodate his neurological involuntary movements. But as we always have, we will continue to advocate for our kids needs and fight when necessary.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrEK7AtArek_BbUhsInt2Ewm0ay33rSaJSvEleAJtynUgh-6KP6oUV3ImHtU7849wBZaQQgp7bgca4-7NgiRmlkwjexJKr-vDY4qkGOwXog9SHwOp37BoD1VZsKnbxkgmfm4-V5oaAjA/s1600/IMG_8342.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrEK7AtArek_BbUhsInt2Ewm0ay33rSaJSvEleAJtynUgh-6KP6oUV3ImHtU7849wBZaQQgp7bgca4-7NgiRmlkwjexJKr-vDY4qkGOwXog9SHwOp37BoD1VZsKnbxkgmfm4-V5oaAjA/s320/IMG_8342.JPG" width="180" /></a></div>
<br />
At the end of the day I saw a post on Facebook, that brought it full circle "You may not understand today, or tomorrow, but eventually God will reveal why you went through everything you did."<br />
For Becca I had no choice, for Shay I had no choice but to fight, for Mackie and this latest fight, it was my choice to use what I knew to help others even if it was against the odds.<br />
Parents fighting for their children can make the impossible happen.<br />
<br />
Anny<br />
<br />
<br />
<br />Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-2147219923912224302015-09-15T12:40:00.000-07:002015-09-15T13:27:58.834-07:00Taking the High Road<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEoaSmi5-oLpmfqZLI88mJrNoZXBgnKnnEFl6B67NpNl9tIQmWrIvlL5rEMNRcq44Wd3BETybpbOdooYDD1a_CgC7XUUUHXayu0im7MAPqfjhUXJmTieQv_pz75FWpB1TlcrKXLAnMuQ/s1600/schoolpkg.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEoaSmi5-oLpmfqZLI88mJrNoZXBgnKnnEFl6B67NpNl9tIQmWrIvlL5rEMNRcq44Wd3BETybpbOdooYDD1a_CgC7XUUUHXayu0im7MAPqfjhUXJmTieQv_pz75FWpB1TlcrKXLAnMuQ/s320/schoolpkg.jpg" width="320" /></a></div>
<br />
We have been working with Mackie's school to accommodate his unique needs. After the bus fail, I am driving him to school. We are finding the glitches, working out plans via trial and error.<br />
<br />
After finding confusing signage and struggling with curb cutouts, I found the one handicap parking place in front of the school building to drop off and pick up Mac. Besides it is right outside the door where the elevator is located and he para will meet me at curbside. Our school is learning and we are finding we have more and more differently abled children and we are all learning as we go.<br />
<br />
After a week of picking Mac up I have learned to be in my space ten minutes early as all the buses will soon come in and making it hard to navigate. I have ten minutes for checking emails and playing on my phone.<br />
<br />
I heard a knock on my window and a gentlemen stood there and said he was picking up a "handicapped student and I needed to move my truck". <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpegMC8Nej2lMNH_pAdqlrDqqE_QcUdN6YncKMQID_TGnmojsWU5C-XcqLMWVxJS2uHxKo3w6Y49OeS9uUvfMRhtHlKjQBUHekAzbCoTgOl76N7Er5XnTwTrWso1njv0uXLL-idXcsow/s1600/handcap.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpegMC8Nej2lMNH_pAdqlrDqqE_QcUdN6YncKMQID_TGnmojsWU5C-XcqLMWVxJS2uHxKo3w6Y49OeS9uUvfMRhtHlKjQBUHekAzbCoTgOl76N7Er5XnTwTrWso1njv0uXLL-idXcsow/s320/handcap.jpg" width="320" /></a></div>
<br />
<br />
I quietly grabbed my handicap placard and showed it to him and said "So am I." He said it was in the IEP and I needed to move my vehicle.<br />
<br />
With his bold look of determination, I knew that there was no sense in arguing with him, and the only place to move was forward into the yellow lines and the crosswalk lines.<br />
<br />
Just then I saw his para and Mackie walking out and I just quickly loaded him and his medical chair up and drove off.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0edsoNPAAlcdQqzjK-MBNacRRZmC-yx251BhlQJ3caF7qZaDCL3pup8QdTLPbE3-uDmj_5QptnodX_WnKZA3iyP_AzCGkG4ZmMN0oJ9K-31p_K-zZdIKriWU_CYgyPx7Wh-_LonQdcg/s1600/macschool.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0edsoNPAAlcdQqzjK-MBNacRRZmC-yx251BhlQJ3caF7qZaDCL3pup8QdTLPbE3-uDmj_5QptnodX_WnKZA3iyP_AzCGkG4ZmMN0oJ9K-31p_K-zZdIKriWU_CYgyPx7Wh-_LonQdcg/s320/macschool.JPG" width="240" /></a></div>
<br />
I could have stood my ground, but he was determined. He only could see one way of getting his son. It would have made a scene with students all coming out. I just "chose" the high road and will address it later.<br />
<br />
Today I stopped in to the office and left a message for the principal and after a nice conversation and her checking the rules with our local police officer, I found I was in the right to not have to move.<br />
<br />
Today at the end of the day, we have the principal will be watching, I have Mackie's original application paperwork along with his placard and his medical letter from the doctor to prove the handicap status. Yes, I know I should not have to have all this, but history has shown me time and time again, I need it to move some people's thinking.<br />
<br />
Soon I will be heading out to pick up Mackie. I may or may not see this parent, but he will just have to wait his turn if I am there first. If he is in the place when I arrive, I will have to park my car on one of the other streets and walk in and try to navigate the lack of curb cutouts just like I did before finding the one handicap parking place.<br />
<br />
My always fight for what is right, doesn't always mean to hold my ground. Sometimes it is better to take the high road, give in and address the issue later.<br />
<br />
A lesson learned from having my children with FASD. When someone is stuck in their way of thinking, there is no reasoning with them and it is easier to just give in and address it when everyone is calm.<br />
<br />
AnnyAnnystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-89606641111314736432015-01-12T20:32:00.000-08:002015-01-12T20:52:51.064-08:00At Last... The Pain Was Real. Hypermobility and Noonan Syndrome, Not Just Growing Pains. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfICIN5vDW_B_TVfFM8HciR_Y1jjaRCJ_FYyOHj144JgN17EVC-yC4BoDGIqMkgFw3_Zr06p2it9UdwkPz5fnNGvxGCe615-Hqm6prKMo3uEdiTl6vt5tBrulxU4PWKiMcewN5Y3ClmA/s1600/IMG_2254.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfICIN5vDW_B_TVfFM8HciR_Y1jjaRCJ_FYyOHj144JgN17EVC-yC4BoDGIqMkgFw3_Zr06p2it9UdwkPz5fnNGvxGCe615-Hqm6prKMo3uEdiTl6vt5tBrulxU4PWKiMcewN5Y3ClmA/s1600/IMG_2254.jpg" height="320" width="320" /></a>
<br />
<br />
Last night I wasn't sleeping up with Becca and Rebekah (My Cohort in running the Foundation) wasn't either. We have been researching links to use along with our Noonan Syndrome Facts for supporting documentation. Rebekah Facebook messaged me at 1:32 AM Central time, she found a hand out by a Doctor presenting to the American Pain Society from 10/12/14 that talks about Hypermobility and Noonan Syndrome. <br />
<br />
Through my blurring lack of sleep vision, it took me a couple of minutes to realize that the doctor who wrote it was no other than Dr. Rudin, Becca's Pain Specialist. He had promised me that he would prepare something we could use as a Webinar after October and he was the first one who really tied the pieces together of Becca's pain and her connective tissue issues. He and I have had the privilege of working together for the past 3 years and he got a crash course of understanding Autism and Post Traumatic Stress as Becca was not the model patient. Enough said. After all the fighting of my our insurance company for over 4 years to get her there, I figured there must have been good reason. The harder I have to fight for something the more I have learned that it is a answer or a miracle in the waiting. <br />
<br />
The adults in the NS community such as Michelle Ellis and others have been trying to educate the Noonan Syndrome Doctors about the pain since the late l990's. Michelle was so helpful in putting words and understanding to what Becca was dealing with. The Noonan Syndrome List and Facebook pages the subject of pain and our kids/adults hurting is very prominent and we have had no answers. Too many times parents have been told that it is just "growing pains". They send them to PT to strengthen them, but our kids fail the regime or there pain is worsened. But now the doctors acknowledge the pain and we are now beginning to have an understanding of why. The dots have been connected. But just like their is a spectrum within Noonan Syndrome, there is a huge spectrum and not all have issues with pain and hyper mobility. It may be a two year old who is crying in the night complaining their leg hurts to an adult who used to be an athlete now disabled from a body that is falling apart in severe pain and everything in between.<br />
<br />
With all the advancements in the knowledge of the Rasopathies and the overlap we are seeing more Scientific understanding of the complexity of the issues faced by those with Noonan Syndrome. I have been working hard on trying to find answers to help Miss Becca and they are coming. Grass roots parent advocacy and "just a mom" research have found clues. With sharing what we learned with Becca more kids are being diagnosed with hypermobility syndrome and some of the strategies we have learned are helping others. But nothing was in writing anywhere other than a few tidbits here and there. There have been a few studies and information but it has not translated clinical practice. Last night we have real hope on the hypermobility front. Someone reputable connected the dots from the old literature. We now have a place where we can send parents/professionals and they have to listen. It wasn't just growing pains. <br />
<br />
I have found bits and pieces of literature on Noonan Syndrome and Connective Tissue.<br />
<br />
They knew in 1974. <a href="http://annals.org/article.aspx?articleid=688508" target="_blank">The Noonan Syndrome, A Family Study</a> "Hyperelastic skin and microscopic abnormalities of biopsied blood vessels suggest a basic defect in connective tissue in this disorder." <br />
<br />
Another link that labeled Noonan Syndrome as a <a href="https://books.google.com/books?id=x-Z-cXUGlL8C&pg=PA450&lpg=PA450&dq=noonan+syndrome+connective+tissue+disorder+heritable&source=bl&ots=FyuMZxchqY&sig=dJNWFK_VqV-stNZJ2MSKYgn_FLc&hl=en&sa=X&ei=XDa0VLK0MM7bsATu7ILIDQ&ved=0CD4Q6AEwBA#v=onepage&q=noonan%20syndrome%20connective%20tissue%20disorder%20heritable&f=false" target="_blank">Heritable Disorder of Connective Tissue from the Connective Tissue and its Heritable Disorders. Molecular, Genetic and Medical Aspects, Second edition. </a> Published in 2002. <br />
<br />
In another article <a href="http://pmj.bmj.com/content/64/748/126.short" target="_blank">Ehlers Danlos syndrome--masquerading as a primary muscle disease</a> it talks about "The diagnoses of Marfan Syndrome, Marfanoid hyper mobility and Noonan Syndrome which might resemble Ehlers Danlos Syndrome."<br />
<br />
Hypotonia is always listed on almost every description as part of Noonan Syndrome. There was a reason why. It is at the cellular level. Noonan Syndrome is a Cardiocutaneous Syndrome it affects the heart why not think it can affect the skin and tissues as well.<br />
<br />
Going through Becca's story... words cannot adequately explain what we see everyday. I created this video to give her a voice. Sharing her story.<br />
<br />
<a href="https://www.youtube.com/watch?v=yLSvg-TbvWI" target="_blank">"Tiny Titan Media's The Pain is Real"</a> November 5, 2013<br />
<br />
Finally at Last.... Some HELP, HOPE and a beginning. We have a handout to show the doctors, schools, therapists and professionals. It is a start...<br />
<br />
<br />
<a href="http://www.americanpainsociety.org/uploads/MPS/2014_Handouts/Nathan_Rudin_Blonsky_Lecture.pdf" target="_blank">STRETCH YOURSELF, Learning to Manage Chronic Pain with Joint Hypermobility.</a><br />
<span style="color: #0000ee;"><u><br /></u></span><a href="http://www.americanpainsociety.org/uploads/MPS/2014_Handouts/Nathan_Rudin_Blonsky_Lecture.pdf" target="_blank"></a>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="page" title="Page 1">
<div class="section" style="background-color: rgb(0.000000%, 0.000000%, 0.000000%);">
<div class="layoutArea">
<div class="column">
<span style="color: rgb(100.000000%, 100.000000%, 100.000000%); font-family: 'Arial,Bold'; font-size: 7.000000pt;">Nathan J. Rudin, M.D., M.A.
</span><br />
<span style="color: rgb(100.000000%, 100.000000%, 100.000000%); font-family: 'Arial'; font-size: 5.000000pt;">Associate Professor (CHS), Rehabilitation Medicine
University of Wisconsin School of Medicine and Public Health
</span><br />
<span style="color: rgb(100.000000%, 100.000000%, 100.000000%); font-family: 'Arial,Italic'; font-size: 5.000000pt;">E. Richard Blonsky Memorial Pain Lecture<br />
Midwest Pain Society 38</span><span style="color: rgb(100.000000%, 100.000000%, 100.000000%); font-family: 'Arial,Italic'; font-size: 3.000000pt; vertical-align: 1.000000pt;">th </span><span style="color: rgb(100.000000%, 100.000000%, 100.000000%); font-family: 'Arial,Italic'; font-size: 5.000000pt;">Scientific Meeting, October 24, 2014 </span></div>
</div>
</div>
</div>
Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-89865541649455218972014-05-11T05:55:00.001-07:002014-05-11T06:06:51.992-07:00Happy Mother's Day--- My Daughter, My Teacher, My Gift<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjomV5Eby7rP1mgToENzU9mPBrI_R4CU3_DEayBwV2bZnDZkIulrTYyolxyXJPhDdIQPVMecaZTreG5kdI5VA5qPU_MOYSgt4vFakT-w8Ta4omG7MMK3wIZlioFeZNQFaIpQmm0f0xg-w/s1600/Becca+and+Michelle.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjomV5Eby7rP1mgToENzU9mPBrI_R4CU3_DEayBwV2bZnDZkIulrTYyolxyXJPhDdIQPVMecaZTreG5kdI5VA5qPU_MOYSgt4vFakT-w8Ta4omG7MMK3wIZlioFeZNQFaIpQmm0f0xg-w/s320/Becca+and+Michelle.jpg" /></a></div>
<br />
My Mothers Day Tribute is going to be a very unique and heartfelt post. Thank you to my daughter Becca.<br />
<br />
Being a mom of 12 I shouldn’t have favorites. But I cannot help but do. From the earliest moments of her life, I was tasked with an important mission. Not just being Becca’s mom but spending everyday helping manage her complexities of her Noonan Syndrome which has changed me.<br />
<br />
It was 24 years ago, she entered my life and from the earliest moment I knew something was wrong. She was whisked off the NICU and then airlifted to the Children’s hospital where we began the journey together. She struggled with so much. She couldn’t eat and struggled to breathe. Soon her heart would begin to fail. Every system in her tiny body would be affected by this little known syndrome.<br />
<br />
They found things in her case that would not fit though. She was rare even from the Noonan Syndrome textbooks. The felt she had Noonan Syndrome but her unusual blood counts, her systemic infections, and her malrotation of her intestines they wrote cried for a diagnoses. She would face the first of many surgeries and the day after surgery the pain in her face challenged even the veteran nurses. A shot of Fentanyl and tiny Becca drew ashen. The alarms blared. The code blue team began to working and I ran from this place in a panic. Stopped in the hallway by the social worker, they stood with me until I regained my sanity. My daughter’s heart had stopped. Eighteen minutes down they did manage to bring her back. I didn’t care what the prognosis the doctors gave her. I just had her now for a little while longer.<br />
<br />
Months would go by. She would be ruled out for a heart transplant due to her fragile immune system and out of control blood counts. Our family fell into a deep hole of medical bills and the finger pointing of which insurance company was responsible for her catastrophic medical bills. Neither accepted responsibility and we fell into the complex public support system.<br />
<br />
I made a promise to the God that I believe in, that I would love her and care for her to the best of my ability and knowing that someday I would have to let her go. But I prayed that something good would happen out of all this pain. Acceptance of the roller coaster of being a Mom with a critically ill baby was the gift God gave me. No longer was I running for her life. No longer tormented by the nightly night terrors when I would awaken I could never remember.<br />
<br />
We have lived one day at a time, one moment at a time. Making memories or just surviving the next crisis that would inevitably come. Savoring each breath she would breathe as she was still here. In the middle of the night, sometimes I would just sit by the side of her crib and watch her little heart beat through her tiny pajamas. I wanted to remember everything. The days would turn to months and the months to years. Oh what a ride it has been. The ups and downs, the learning curve and the lessons my tiny teacher would give me.
The biggest lesson is that we are joined by our hearts. I was tasked with being her voice and with that a huge responsibility comes. One misstep, or one second guess could plummet her into a life challenging crisis and too much was on the line. It was her life that I had to fight for.<br />
<br />
My daughter, my teacher, my mentor, she would change me. She would inspire me with her determination. Her never give up will to survive and do her best despite the everyday life of pain, challenge and adversity.
I would learn to trust my own intuition. If I didn’t listen to it, I would be sorry and Becca would pay a price.<br />
<br />
I would learn that while the professionals may read the textbooks and understand the medical jargon, they did not know my daughter’s needs. I would learn to stand up for her. I learned that it was part of my job description to become an expert on Becca and would read every article I would get my hands on. I had no choice. The doctors would know little about Noonan Syndrome and when you have the child that is even RARE within the Noonan Syndrome Spectrum I had to become well versed. Too many times I would be asked what kind of Doctor I am? I am just Becca’s Mom.<br />
<br />
I would learn that I could not do it all alone. I needed a team to help handle Becca’s complex care. A medical home model long before it’s time. Becca came home with an army of nurses all with one mission to complete, help Becca and help me manage her care so I would have time to help my other five children. Reaching out for help was not a sign of weakness, but of strength and help take care of me.<br />
<br />
I learned that I had to care for me or I would ultimately crash and too many parents of children with special needs develop medical issues of our own from the exhaustion and stress from doing it all.<br />
<br />
I learned that I would have to not only become well versed in the medical world. I would have to earn other degrees. Special Education Teacher, Lawyer, Medicaid Specialist, Occupational Therapist, Physical Therapist, Speech and Language Therapist, Technology Specialist, Supports Specialist, Insurance Claims Examiner and Appeals Specialist. The professionals have their degrees. Parents have their degrees earned by not having a choice. The Doctors have their Md’s, Phd’s. We parents have our own degrees. We come together to help our kids. When a doctor does not believe me or thinks parents no little, I have learned to help them understand, but if they won’t listen. They are replaced in Becca’s care team.<br />
<br />
I would learn many ways of coping. Writing my thoughts was my way of releasing the energy. Writing became the way to help educate those on Becca and her complex disorder. I learned that sharing our journey is a way of educating others on the challenges faced by so many families with children with complex special needs. Writing from one’s heart is a powerful force to advocate, educate and change lives.<br />
<br />
I learned that I would meet the most amazing people on our journey. So many lives my daughter would touch. I would find family of the heart in the most amazing places. She has lived up to that promise I made so many years ago. Her life would have meaning and something good would happen out of all that pain. It brought me to a new family, the Noonan Syndrome Family.<br />
<br />
I learned to pay it forward. I did not want others to walk alone. Helping others is my way of coping.
We had become expert parents in the special needs world. We needed to share our skills to make a difference.<br />
<br />
I learned that it is not what you get in life, it is what you give. She was here for a reason and she challenges me to become better.
Would I have ever believed myself capable of all the things I have done on the journey she and I have been on? No way. The old Mom was shy. She was a people pleaser. She was unsure of herself. She would have listened, trusted and done it even though she had doubts. I had no choice but change, her life and our family depended on it.<br />
<br />
I learned to advocate, fight, stand up for what I knew was right, despite the odds.<br />
<br />
I learned that despite the opinions of so many professionals, that parents do know something, and that parent blame is a real thing.
When I finally wrote the long procrastinated book of our journey with Becca, I began it with I was just a Mom. My publisher argued that I was just no ordinary Mom and she wanted to remove it. I was just a Mom… just a Mom who was transformed by a little tiny titan who taught me the most important life lessons and what truly matters.<br />
<br />
Thank you Becca for being not only being my daughter but my inspiration.<br />
<br />
Happy Mother’s Day!Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-33468355126562769682014-03-14T14:25:00.002-07:002014-04-15T09:07:31.260-07:00Becca's Fundraiser--I Love Noonan Syndrome Bracelets<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQIJAPBskjWQzE2sIikAaoJQUVz59T7bVIDxjjuhfKJJggigqGUQb1HunbQrJlsFMVnl6JT0lU63gifzE8Min-Q6mYOjVfVsg5m_2eISDV7TEgSMlYbJhWGnk4RuqdAclRZd8mrve79g/s1600/Ann+Iphone+March+2014+490.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQIJAPBskjWQzE2sIikAaoJQUVz59T7bVIDxjjuhfKJJggigqGUQb1HunbQrJlsFMVnl6JT0lU63gifzE8Min-Q6mYOjVfVsg5m_2eISDV7TEgSMlYbJhWGnk4RuqdAclRZd8mrve79g/s1600/Ann+Iphone+March+2014+490.JPG" height="320" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPbSM_RWhTlPlvSgTlQImZLSDysRaI_59aKQLtrfTjGlAkHJ39DGFefQx7nluRc5YN18lpMJlF05o3ipiLR_v-g7Qg9tUqgDp5iWeWwWj8gldzr1iuEtLy9cN_y_vZXyuHinHPDpcOaA/s1600/Ann+Iphone+March+2014+491.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPbSM_RWhTlPlvSgTlQImZLSDysRaI_59aKQLtrfTjGlAkHJ39DGFefQx7nluRc5YN18lpMJlF05o3ipiLR_v-g7Qg9tUqgDp5iWeWwWj8gldzr1iuEtLy9cN_y_vZXyuHinHPDpcOaA/s1600/Ann+Iphone+March+2014+491.JPG" height="320" width="320" /></a></div>
<br />
<br />
The links for buying the bracelets is on the side of my blog roll. Red and Blue are both available. Your donation includes the cost of the shipping.Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-50145652079351743262014-02-16T07:24:00.000-08:002015-09-11T19:03:57.615-07:00Dear Long Line of People Who Do Not Get FASD. Read the Pamphlet and Listen to the Parents. I woke up out of deep sleep early this morning with knowing I needed to
go write, thoughts given to me out of the depths of my subconscious and
deep within my soul and heart. I drug myself out of bed to not lose
those words that will probably not make too much sense to those who
judge, jury and complicate my daughter/son's progress and my parenting but will be understood by those who walk a road beside me
as a parent of someone with FASD's. I have seen much written about the failure of mental health needs and the pipeline to jail, but for our kids with FASD it is much more complicated. They are faulted for being innocent victims of prenatal exposure to alcohol and the failures based on the lack of any help or even acknowledgement of any service system to find help and long term supports. <br />
<br />
To learn more about FASD<br />
<a href="http://www.mofas.org/">http://www.mofas.org</a><br />
<a href="http://www.nofas.org/">http://www.nofas.org</a><br />
<a href="http://www.fasdcommunities.org/">http://www.fasdcommunities.com</a><br />
<br />
<br />
This is a post which combines many
of the experiences faced by raising my 5 siblings with FASD and the
experiences faced by many a parent who have walked the walk.<br />
<br />
<br />
<br />
<br />
Dear Long Line of People who not get FASD,<br />
Here is a pamphlet on FASD. I have followed everything everyone has
told me to do. My sons and daughters have been blamed, branded, faulted and failed
because of the manifestations of a decision made long ago. She may not
have known, she had an addiction but my children would pay the price for her
illness. They was an innocent victim of prenatal alcohol exposure and they will pay a life long price. I have been blamed, faulted for my
parenting practices, blamed, shamed and humiliated and we both have
trauma from the lack of understanding of FASD. From early on a long
list of people who could help tried, but couldn't understand and the
lack of awareness caused me and them to be misunderstood. <br />
<br />
Dear Next Door Neighbor,<br />
You said my child you can come over to play with Johnny. I tell you that he has an extra need to be watched more carefully than the other
children his age and you tell me that he can play and she will watch
them. Shaking her head and whispering behind my back you tell the other
ladies in the coffee clutch, that I am just "too overprotective" and
treat my child as a baby. A few hours later and then come yell at me
that my son did this, or that, or is terrible menace he is. Didn't I
tell you that my child needed more monitoring than other children? My
child may be only half his chronological age and would you expect a 2 or
4 year old to be able to be independent and fault them for being two or
four when they do not play well with others? My child is hyper,
impulsive and he will fly into the stratosphere of wildness without an
external monitor. She is excited, is happy, she shows it with his behavior and is way over the top. When kids get wild, what usually
happens? Someone gets hurt, something gets hurt. My child just lost a friend, but the other mothers won't let my kid play with their
child too. Every child needs a neighborhood friend. Mine has none. Why,
because you did not listen to me. I told you we needed to watch,
you said you understood, but didn't. The lonely world of a child with
FASD. I address an envelope and send my neighbor a pamphlet on FASDs. <br />
<br />
Dear Day Care Provider,<br />
You called me today for the 3rd time this week saying my son was
"acting up" in school. He is not listening to you. He is not following
the rules. You warn me that my child is a brat. I need to be more
consistent, I am not this or am not that. You gave my child a time out
and he hit you. He will not sit on the stool, he will not sit at the
table, he is disrupting the day, he is impulsive and hyper. I have
explained to you that my son has Fetal Alcohol Syndrome. I have given
you pamphlets on his prenatal brain injury. I have been through 3 day
cares already so have planned ahead this time to help you learn about
FASD's. You say that I am stressed, and tell the other teachers that it
is because of my stress that he is acting out. I struggle to balance the
walk of parenting with special needs while working, but not being able
to count on being at work, taking phone calls about his behavior and
having to drop everything because today was a bad day. Don't you
understand that he needs calm structure to do well? But today you say
you can no longer keep him due to his inability to listen and follow the
rules. My son may be 4, but he is developmentally much younger. Would
you expect a one year old to follow and remember the rules without
assistance? Would you expect a two year old to be able to sit and stay
planted for the circle time? Do you not understand that my child's
prenatal brain damage needs different strategies to help him understand
what you are asking him to do? Visual schedules and structure and
rehearsals he will be able to get it and every day is a new day and we
need to do it all over again. But he will not get a chance, he has now
been kicked out of the fourth day care and he is only 4.<br />
<br />
Dear Kindergarten teacher,<br />
You called me today to tell me that my child needs to come home. She
threw a tantrum and disrupted the classroom and she has behavior
problems. When I enrolled her in school her early childhood and
intervention records were given to you and the office. After testing you
said my child was bright, she no longer needed any support. She got
over her FASD. and her challenges. The IEP was denied, she didn't need
any support, any services and she was a normal kindergartener. So why is
my child send home from school for the tenth time this semester?<br />
<br />
Dear Elementary Teacher,<br />
You called me today to say that my child is not making progress and is
failing. Who is failing? Didn't they tell me he was bright only three
years ago? I know my child is failing, every night when he hits the door
he is a unhappy mess. Tantrums, I don't want to do my homework, the
little boy who used to have a spark of happiness gone, the rage of
school failure comes home with him. You want to put him in a classroom
full of behaviorally challenged students. He needs behavior
modification, he needs to learn the rules. He may be able to memorize
this or that, read fast, but he has little understanding of what he
read, he doesn't have abstract thinking, he struggles with math. These
are the hallmarks of a student with FASD and he is now being faulted for
the lack of his abilities to do normal.<br />
<br />
Dear Child Psychologist,<br />
You sat with me and told me that I am my son's problem. I am not
holding him accountable. You say that I do not have structure, that I am
making excuses for his behavior. I handed you a pamphlet on FASD's. You
tell me that I need to take him to a Psychiatrist for medication. You
give him labels, he has ADHD, he has Oppositional Defiance Disorder, he
has obsessive compulsive disorder, he has a mood disorder and his moods
can fly from here to there. You tell me it is alll my fault.
Fortunately, I can say that I am not the mother who caused this, I am
not the mother who drank while pregnant. But I feel ashamed that I had
to make an excuse and judge the mom who did? It was self protection,
too many judging from every direction that made me do it. <br />
<br />
Dear Sunday School Teacher,<br />
You told me that my son was not welcome back. He is too disruptive to
be in Sunday School. When he started I handed you a pamphlet on my son's
FASD and asked you if you needed me to stay so he could be supported in
the youth services. But you said parents are not allowed. Where is the
compassion that Jesus taught? My child and I are now destined to stay
home. No church, no love, no compassion, we are rejected and the one
place where I find strength to keep going taken away. We will stay home
as you requested, or try another church and over and over again find
lack of understanding and support.<br />
<br />
Dear Child Protection Worker,<br />
You showed up at my home today because some well meaning adult made a
report that my son told you we do not have food in the house, and when
being quizzed agreed with almost everything you said. I hit him, I am
mean, whatever you wanted him to say he agreed with. My son is a people
pleaser, he will agree to almost anything anyone says to get the
interview done, or to get to go get that ice cream cone you promised
when he was done. I pulled out the pamphlet on FASD and you rolled your
eyes. You looked at my walls with the holes, the pile of dishes on the
counter and the mess of toys on the flloor, I could see the judgement on
your face. When opening the refrigerator and cupboards they were
loaded with food, my child had no bruises, but we are now branded and
watched by the vary system he came from in the first place. No adoption
support, no records, when I have called for this or that you say we do
not have anything to offer. I am doing the best I can, my son just
wanted McDonalds last night, not the beef roast, mashed potatoes and
green beans I had made. He did have food, just not the food he wanted.<br />
<br />
Dear Child Psychiatrist,<br />
You are the fourth one in the last four years. This is another opinion
for answers and differing medications as nothing is really helping
anymore. My son does not sleep, he is explosive, he is depressed and he
has tics from the psychiatric medications that have caused him to gain
too much weight. The schools report me that I need to get more
medication. Isn't the 4 drugs he is on enough already?<br />
He doesn't
sleep and the Clonidine does not work anymore. But amazing during the
summers and school breaks it does. I explain that I believe it is the
stress that school causes, the bullying, the teasing. But it is my
child who needs to do to social skills training, and needs more
medication. I tell you that my son is failing his 6th grade middle
school classes and he is in almost daily detension. He has been rejected
by his classmates and it is a lonely world for him. Take him off this,
and add that, another medication that I will have to fight from the
insurance company or Medicaid and I asked if this medication has been
tested and is safe for children? I am told that this is needed and go
home to research that it has never been studied in use in children and
is not even usually given for his disorder and read the long list of
side effects and what to watch for in my son. But I question giving it
to him, but if I don't the school will calll, the child protection
worker will show up at my door and I do not want to be charged with
medical neglect. So against my own intuition I give it to him praying
that it helps and does not worsen his already precarious mental health.
I just keep thinking why they think medication will "cure" my child's
prenatal brain injury that was caused by a terratogen?<br />
<br />
Dear Attachment Therapist,<br />
You are the next in a long line of places I am searching for help for
my son. They say he has Reactive Attachment Disorder. He came from
foster care, he had disrupted placements. He had been in three homes
before arriving at my doorsteps. You hand me the books and guide me
through the strategies of all the various attachment regime. My son
keeps worsening. You tell me to be consistent, you tell me to not let
him push my buttons, you tell me to give him consequences for his
misbehavior. Today I tell you that it is not working and I am trusting
my own research and tell you that you do not know what you are going. I
am firing you. Kids with FASD do not understand cause and effect and
when you ask me to use it you are not only going against what works for
my son, but disrupting his attachment.<br />
My son is attached, but
everytime some well meaning adult changes the rule or misunderstands him
he comes home to vent, let loose or blow up at the only safe place or
person who will still love him despite it all. It is not that he is
unattached, that home is the problem, it is that home is where he is
safe to let go of the stress.<br />
<br />
Dear Middle School Principal,<br />
You called me today to say that my son was expelled for the rest of the
school year. He got in a fight, and has been hanging with the wrong
crowd. You put him in the class with those kids early on and he has
taken on the behavior of the ones he has grown up with. My son has
learned that it is much more socially acceptable to be a "bad" kid than
to be "stupid" or "retarded". At home my child calls himself stupid, he
suffers from depression. He is an outcast. My child has FASD and he
will mimic the behavior of those around him. He becomes what you tell
him he is. I reminded him that my child has an IEP and he cannot expel
him without going through the process afforded him under special
education law. It is a manifestation of his disability and I bring him
home to call in the advocate and write on my FASD support group wall of
my frustration. We have tried everything they tell us to do, he repeats
the same mistakes over and over again and gets the same result. He needs
to be understood and he needs more supervision that you are giving him.
I hand him a letter to reconvene his IEP and another pamphlet attached
to it explaining his prenatal brain damage. <br />
<br />
Dear Coach,<br />
You called me today to tell me that my son was being suspended from the
football team right before the play off game. He is not eligible to play
because he is failing his classes at mid term. He is in special
education, he has an IEP. You were given the pamphlet on FASD and you
have been doing a good job and letting him play on the kick off return
team. His brother will still be able to play and now he needs to sit and
watch on the bench. He was doing something successful and he is now
being faulted for his teachers inability to follow the IEP, his lack of
support and his brain damage. There is no way to appeal this decision?
Next year we will add to his IEP a pass or fail stipulation, but
according to the high school rules he still needs to have a passing
grade to play. But if I add that to the IEP, he can play and the
football season will be over before the send of the semester! But this
year it's too late, at least you are letting him suit up and head to
practice so he does not have to quit the team.<br />
<br />
Dear Mr. Police Officer,<br />
My son is out of control, his medications are not working, and I cannot
keep him safe. You tell me that this is a family problem and walk away
from my door. I am left to my own devices once again. <br />
<br />
Dear Mr. High School Principal,<br />
Please do not graduate my son. He has not passed his classes, he has
not passed a final exam yet in the four years of high school. I have
advocated, I have fought, but my son cannot do the simplist of chores,
take care of himself, or cannot remember what to do next without a
prompt. External brain? Do you remember my son has FASD? I hand another
pamphlet of FASD and the print out of what will happen to adults with
FASD without support? I tell him that 80% will need support, 60% will
have trouble with the law, that he is at risk of finding his support in
the justice system and most will have secondary mental health issues and
he was born to be addicted.<br />
I am told he is now 18 and he wants to
graduate and even though he has the right to special education to 21 he
wants to be just like every other senior and graduate with his class.
You tell me that I am enabling him. I need to let him grow up. I hand
you another document that talks about the need for an external brain and
walk out the door saying that I am not enabling, but I AM ABLE-ING my
son to protect him from being transitioned off the cliff to a world of
nothingness and failure.<br />
<br />
Dear Community Mental Health,<br />
Today I brought my son in to see if he can qualify for help. I bring in
the 4 inch binder of records of his testing. I hand you a pamphlet and a
huge printout on FASD. You tell me that his IQ is too high to qualify
for services. He has Adaptive living skills less than the 1%, he has
memory problems, he carries a long list of diagnoses from ADHD, OCD,
ODD, ASD, RAD, BPD, SID and all those diagnoses are in the DSM-IV but
not his FASD. He doesn't qualify for services. My son is verbal, he has
learned to act normal. He can hide his disability well. He is an
excellent ACTOR. He knows the right answers, but you only quiz and do
not ask for him to explain what he knows. If you did you would
understand he answer would be "I don't know". So my son has no support
services. You told me to go enroll him in community college, which I had
already tried, but he couldn't pass the test to be enrolled. He had
never passed a final exam in high school yet even with help from special
education. They graduated him despite any real skills. <br />
<br />
Dear SSI Interviewer,<br />
Today Mr. SSI gatekeeper you sent a letter that my son was denied SSI.
He can work, he can hold a job. I submitted the piles of documentation
of my son's FASD from all the years of places I have tried to find help.
But because he has a so called normal IQ you believe that he can do
what is expected. Don't you think he would if he could? Doesn't the
years of failed helps show you that he can't? Getting SSI is the
doorway to employment support and with it Medicaid. He was cut off his
adoption subsidy when he turned 19. Who will pay for his medications and
psychiatric visits, the neuropsych an advocate told me to get to prove
his executive function deficits and to explain his prenatal brain damage
from alcohol.<br />
<br />
Dear Judge,<br />
I have handed the defense
attorney the pamphlet explaining FASD. I have printed out the documents
on working with persons with FASD in the court system. My son will not
be able to do the steps of probation without help. The last probation
officer told me that a person with FASD will require 10 people to be
successful. He needs to stay away from trouble, he needs to go to AA and
do his community service. Why is he in trouble? His friend told him to
go find some money to pay his rent. He found it in the local subway
store and left it outside on the curb when he realized what he was doing
and couldn't understand why he still was in trouble. In his
disregulation he left his jacket with his ID next to the cash box and he
couldn't even understand how they found out and were knocking at the
door. They put him back in jail because of his inability to take
responsibility for his actions and he said what the probation officer
told him to say. He can't do it. <br />
<br />
Dear Mr. Jail Keeper,<br />
I
came today to see my son in his orange jumpsuit and his sandals. I
handed you a pamphlet on FASD and hope that you will pass it on to those
working with my son. I thank you for helping me sleep at night. I know
that he is being fed three meals a day, he has structure, he is calming
down, the voices that are spinning in his head are no longer present,
he has a bed of his own, he will be getting his medications that I had
faxed over from his psychiatrist which he ditched six months ago. He
hopefully does not have access to the alcohol which he is addicted to
which caused his prenatal brain damage. He is not going to be able to
self medicate his mental health needs because he no longer has access.
But I pray that you keep a look out for him, he is vulnerable adult and
he is easily victimized and he I pray he doesn't model the other inmates
behavior. <br />
<br />
Dear Mr. President and Congress,<br />
I will be mailing you a pamphlet and some information on Fetal Alcohol Spectrum Disorders. There is little help out there for those who are born with prenatal alcohol exposures. There is little awareness to prevent this complex disorder. The funds are not enough, there is no service system or no door that opens up a place for parents who are struggling to find help for their children who were born with prenatal brain damage. They do not fit in the Mental Health system until they fail and develop secondary problems which they do. But even then the strategies are not effective as our children are not mentally ill, they are brain damaged. The <br />
Developmental Disabilities world will not help most of the children with FASD as they have normal IQ's. It is well documented that those who get early intervention, have lower intellectual difficulities and stability have better outcomes than those who have more normal levels of intellect. Those kids adults, know a lot, talk a lot, can't do a lot without support. They need mentoring, a coach and assistance that will teach them and support them while they grow and may need life long support. But they can learn, they can break the cycle, but funding, education and research is needed. Please Mr. President and Congress restore the money to the budget to support FASD and lets stop our kids from being sent down the pipeline from cradle to grave with being misunderstood and faulted for their prenatal brain damage.<br />
<br />
<br />
Dear Lord,<br />
I pray that you will continue to
watch over my son, as you always have. Every night I pray that you help
others understand FASD's. May we help raise awareness and stop other wee ones from facing a life of challenge from being innocent victims of prenatal alcohol exposures. May other parents can be spared the walk I have had to walk with my sons and daughters who I adopted with FASDs. Maybe someday we will find support services
for my son and others like him. I have done the best I could. I have
tried to follow the pamphlet that no one else understands. Thank you
Lord for the pamphlet, and thank you for my son. I know that someday
when heaven calls him home that you will understand that he has reasons
for his behavior and that you have mercy on him understanding that he
was just an innocent victim long before he took his first breath. You
gave him to me, to love, nurture, fight for and I know that you will
heal him and someday he will at last find peace, hope and unconditional
love. In the meantime I will keep passing out the pamphlets, I will
keep writing and I will keep helping connect the dots for him while he
walks the road of living with FASD.<br />
<br />
copyright: Ann Yurcek 2/16/201Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com9tag:blogger.com,1999:blog-6122996855269696158.post-56485393162972088542013-12-20T23:14:00.000-08:002013-12-20T23:28:03.681-08:00Paying it Forward and Helping to Fulfill a Christmas Wish. Creating a Miracle for a Grieving Mother<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEierXjiyf-l26VahiiscZXvbc7PXgs9vH83wiewAlQ1pm1gc1_aEnLDDLPvPV9Qd8oQfSMkOgE0bJJcVZHbc9sNZ8sLupynMkr1g7Hj-cD9efeGLvVbacK-lkmsLPdNUlntsR7lKojJdA/s1600/Tiny+Titan+094.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEierXjiyf-l26VahiiscZXvbc7PXgs9vH83wiewAlQ1pm1gc1_aEnLDDLPvPV9Qd8oQfSMkOgE0bJJcVZHbc9sNZ8sLupynMkr1g7Hj-cD9efeGLvVbacK-lkmsLPdNUlntsR7lKojJdA/s320/Tiny+Titan+094.jpg" width="242" /></a></div>
<br />
Twenty four years ago, my daughter Becca lay critically ill in the Pediatric Intensive Care unit at Christmas. She was born with Noonan Syndrome. The doctors gave little hope for my tiny titan to survive. Heart failure, immune problems, JMML leukemia, RSV a killer of fragile babies, and a systemic staph infection she was critically ill. I had already almost lost her once when Becca's heart had stopped for l8 minutes when she was 3 months old, I could not lose my daughter at Christmas. My husband had lost his job, we had fallen into poverty when our insurance companies had both denied her coverage, a million dollars in hospital bills with 5 children there was no hope for anything for Christmas. I said a prayer... that prayer was answered and some unknown Santa's created a miracle for my family that Christmas night. I can never forget the miracles of that night and to this day I do not know who helped our struggling family fill my barren cupboards and filled my children's stockings. (<a href="http://www.thirteenandfrugal.blogspot.com/2012/12/miracles-are-meant-to-be-shared-our.html">The Christmas Story</a>)<br />
<br />
I promised that someday when I could, I will pay it forward and help God fulfill dreams and wishes and help others find hope in tough times. I have been honoring my promise for years since. I thought I had already done my secret work this year. <br />
<br />
Last night I finally had a chance to check my email and my Google News alert for the day shared a story from Jacksonville, Florida of a mother whose wish is to bring her daughter home. Her daughter Stephanie 26 had Noonan Syndrome. She had saved for a year to head to England for a dream vacation.<br />
<br />
Stephanie died the day after arriving on December 8th. Her mother's wish to bring her daughter back home. $3000 they did not have. <br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl_uBH0pPI719JHRH2mVGIv4jgniMbVwOg0x8iY1iX7Eg3U3yaYK2DElnWaAy_3Z5YALm5yH0z9U-CKw50lsxWE_G8K05v2Xk2Og23Uao6jbbvGa-3zNKd1N_mt13sONerNSecMLRRGQ/s1600/angels+for+owen.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl_uBH0pPI719JHRH2mVGIv4jgniMbVwOg0x8iY1iX7Eg3U3yaYK2DElnWaAy_3Z5YALm5yH0z9U-CKw50lsxWE_G8K05v2Xk2Og23Uao6jbbvGa-3zNKd1N_mt13sONerNSecMLRRGQ/s1600/angels+for+owen.jpg" /></a>
<br />
<br />
Family Struggles to Get Their Daughter's Remains Home to US<span class="messageBody" data-ft="{"type":3,"tn":"K"}"><span class="userContent"> </span></span><br />
<span class="messageBody" data-ft="{"type":3,"tn":"K"}"><span class="userContent"><a href="http://www.firstcoastnews.com/topstories/article/339148/483/Family-struggles-to-get-their-daughters-body-back-in-the-US?odyssey=tab" rel="nofollow nofollow" target="_blank">http://www.firstcoastnews.com/<wbr></wbr>topstories/article/339148/483/<wbr></wbr>Family-struggles-to-get-their-d<wbr></wbr>aughters-body-back-in-the-US?o<wbr></wbr>dyssey=tab</a></span></span><br />
<br />
<br />
I couldn't sleep last night, I shared the links to the story to the facebook walls of the Noonan Syndrome communities. Too many angels, too many losses. Too many little candles lit and the picture tribute I made years ago posted to my facebook walls in memory of those who have lost her lives to NS.<br />
<br />
This morning I wrote on the News Channels wall, asking for help to make her wish come true. The local fire department opened a fund. I left a contact information to the Foundation and soon I got a phone call from Rebekah from the<a href="http://www.teamnoonan.org/"> Noonan Syndrome Foundation</a>,. The reporter had passed on his number. I shared my information and soon I received a phone call from Catherine McCoy, Stephanie's mother.
Listening to her story and hearing about her daughter, I learned that not only has she lost her daughter, but she had lost two sons to Noonan Syndrome. One at the age of one and a half and the other due to prematurity in infancy. Stephanie was her third child who died from complications from Noonan Syndrome. This Mom who has Noonan Syndrome herself and has now lost all three of her children to the devastating effects of NS. I cannot imagine her grief.<br />
<br />
I promised her that I would help and somehow we would find a way to help her bring Stephanie home. Talking to her I asked the question if they had life insurance as many with NS cannot get. They have no funds for her funeral.<br />
<br />
Making a few phone calls, we have a tax deductible donation site set up through First Giving to collect donations that will be given to the McCoys for getting Stephanie's remains home for her mother and family to say goodbye and try to help with funeral expenses. <br />
<br />
I also made another promise, we will see that Catherine will be able to attend the Noonan Syndrome conference in Clearwater in July if she wishes. She has never met another person with NS and maybe it will be something to look forward too. Meeting Dr. Noonan and others with Noonan Syndrome needs to happen.<br />
<br />
Christmas is a time of miracles. We are the Noonan Syndrome Community and family. When one of us hurts, faces a loss it affects us all. It dredges up our fears, our losses, our memories. <br />
<br />
For me I can never forget that Christmas so long ago.... I cannot stop until her daughter is home. I made a promise to Catherine we will help find a way and help God create another miracle this Christmas.<br />
<br />
Last month we nearly lost Becca due to error and complications from a surgery gone awry. Like Becca, Stephanie had restrictive lung issues. The stress to Stephanie's lungs enlarged her heart causing her to have a heart attack. Becca's restrictive lung issues almost cost her her life in early November. Because of our knowledge of Noonan Syndrome and connections with her dad's hospital and partners, we sprung into action and saved her life from aspiration pneumonia with her normal 48% lung capacity and the good lung in danger of collapsing. Becca has lowered immunities for upper respiratory and bacterial infections and she struggles with fighting systemic staph infections. <br />
<br />
In my 24 years of being in the Noonan Syndrome world, I have seen too many losses. Too many wee ones and ones of all ages lost to this devastating disorder. <br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3s-4xWnHnl0il_uPVGU4nvYSHisAeCuiZZeRdZQcyDktrvCg3e5T-HZBROPHJ7rewRaXLMAee6pBDbnb1eCbrvpwrfPRl7EGDjRo_44REXbA4dh8SSgGTAnh8Uvq2ihurA-WyukhHPg/s1600/December+2013+156.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3s-4xWnHnl0il_uPVGU4nvYSHisAeCuiZZeRdZQcyDktrvCg3e5T-HZBROPHJ7rewRaXLMAee6pBDbnb1eCbrvpwrfPRl7EGDjRo_44REXbA4dh8SSgGTAnh8Uvq2ihurA-WyukhHPg/s320/December+2013+156.JPG" width="320" /></a>
<br />
<br />
The Tiny Titan, did not give up once again. Becca was never expected to survive and I have lived each day knowing that everyday with Becca is a gift we were never expected to have. This mother is living my worst nightmare times three.<br />
<br />
Please join me in making any size donation to help one of our own bring her daughter home.<br />
<br />
It is Christmas, a season of miracles. A time for hope and for this family a season of loss. Caring for others, sharing in our joys and sorrows is what we are called to do and the Noonan Syndrome Family we can unite and open our hearts and wallets to a few dollars and together those dollars will add up to give another hurting family a Christmas miracle.<br />
<br />
For Catherine McCoy join me in helping fulfill her wish and bring Stephanie home.<br />
<br />
With reaching out to the Noonan Syndrome Foundation we have set up a First Giving Fundraiser. Stephanie's family needs our help to bring the body of their daughter home and fund funeral expenses. $3000 to get her body back to the states and a couple of thousand more for funeral expenses.<br />
<br />
If you can, please help this family by making a tax-deductible donation to the Noonan Syndrome Foundation. The Foundation is a 501c3 charitable organization. The Foundation will make sure that all funding collected covers the return of Stephanie to her family and her funeral expenses. Any funding left over will be used to raise awareness of Noonan syndrome. For more information, please contact info@teamnoonan.org.
Here is the link to make donations to the family:<a href="http://www.firstgiving.com/fundraiser/NSF/steph"> http://www.firstgiving.com/fundraiser/NSF/steph</a><br />
<br />
<br />
On behalf of the Noonan Syndrome Community Worldwide, I offer our deepest condolences to the McCoy family on the loss of their daughter. I am putting up the angel tribute once again in honor of Stephanie and another angel with Noonan Syndrome gone too soon. Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-32726042328189617962013-11-23T23:03:00.001-08:002013-11-23T23:04:54.655-08:00Literal Language and Misinterpretations with Kids with Special Needs.... Understanding Language Comprehension/Auditory Processing Difficulties<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQwTPhk-Abys0FbJfB0cf_oirWgreoXw2O4pnqoITFHP7cxySCrMiICZQqNhdlcX2_90RHqL6jf5GQuY8RqmeY3vbjgZRy25y60X5eOCIqkzAB84Ega-xc6mYO5eBojRanismHj0VYDA/s1600/Dee+and+Holly.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQwTPhk-Abys0FbJfB0cf_oirWgreoXw2O4pnqoITFHP7cxySCrMiICZQqNhdlcX2_90RHqL6jf5GQuY8RqmeY3vbjgZRy25y60X5eOCIqkzAB84Ega-xc6mYO5eBojRanismHj0VYDA/s320/Dee+and+Holly.JPG" width="320" /></a></div>
"You're in the dog house."<br />
<br />
I would tell my daughter she is in the "doghouse". This is what she would think. I did not say that she is in TROUBLE.<br />
<br />
For my kids with special needs the English Language and its abstract meanings of words can be confusing. Think about all the different interpretations that we just understand that "throw" my kids.<br />
That last part of that sentence would cause my kids to stop and look at me with confused expressions. No, I would not "throw my kids" as they would think I just said. <i><span style="font-size: small;">But we understand it as an expression. </span></i><i><span style="font-size: small;"><span style="font-weight: normal;"><span style="font-family: inherit;"><b><br /></b></span></span></span></i><span style="font-size: small;"><span style="font-weight: normal;"><span style="font-family: inherit;"><b><span style="font-size: large;"><br />Language Comprehension/Auditory Processing Difficulties</span></b></span></span></span><i><span style="font-size: small;"><span style="font-weight: normal;"><span style="font-family: inherit;"><b><br /></b></span></span></span></i><br />
<b>Characteristics:</b> Children with Asperger's Syndrome, FAS, some with Noonan Syndrome and other developmental disabilities generally interpret auditory information <b>literally</b> and <b>concretely</b>.
They can have difficulty understanding figurative language,
jokes/riddles, multiple meaning words, teasing and implied meanings. <br />
<br />
<span class="st"><i>Children</i> are <b><i>literal</i></b> thinkers, <i>meaning</i> that they <i>interpret</i> words at face value. <b>...</b> <i>Children need</i> correct information given in<b> <i>concrete language</i></b>.</span><i><span style="font-size: small;"><span style="font-weight: normal;"><span style="font-family: inherit;"> </span></span></span></i>For kids/teens/adults with Autism, FASD's and other special needs they remain a literal thinker just like younger children. It will not be apparent until mid childhood when they do not move on to understanding more complex auditory and abstract meanings of speech.<br />
<br />
So many things can be a set up for confusion or even disaster. They will follow the instruction to the literal meaning and sometimes that may have repercussions or consequences and it will end in a blown up rage because they did what we said. <br />
<br />
The first time I noticed anything with our adopted sib set was I told them we were going to "RUN ERRANDS". They did what I told them, they ran in the grocery store, they ran in the mall, they ran in the parking lot. I asked them to walk and one of them told me I told them that I told them we were going to RUN ERRANDS make up my mind? It took me a few minutes to understand that I did say "run errands" and had to correct my instructions. <br />
<br />
I knew what I had done because Miss Becca with her Noonan Syndrome can be very literal and I had to teach her the double meanings of many phrases. I told them to run and they followed my instructions. From then on it was we are going to the store to buy groceries, to the mall to .... and we walk in those places.<br />
<br />
A mother said to her child, "Stop back-talking to me". The child said, "I'm sorry Mom, I'll talk to your front."
A prime example of literal and concrete interpretation. <br />
<br />
If said to a teacher said the same phrase to stop back talking and responded with the talk to your front statement, the teacher would think the teen was a smart A.... and consequence him with a detention. The teen would escalate because they would not understand that they offended a person in authority.<br />
<br />
A friend today gave me the topic of the post when I was talking to her on the phone. She was with a little one who has FASD for the day. They were at a craft fair and the little girl asked my friend when was the "Craft Show"? They had already been through almost the entire auditorium. My friend was taken a back and I explained her confusion. She was thinking she was going to a show, like a play, movie, etc. I told her to explain that "the people who make the crafts are showing their things and selling them". It now made sense. Later I talked to my friend and she had explained it to her adult daughter who couldn't get it, but then she explained that they think differently than we do. A CRAFT SHOW would be a show about crafts. She figured out that she probably should have said a CRAFT Sale, and I said that she would probably even do better with " adding an explanation of a place where they sell crafts and things that people make". <br />
<br />
Recently my older daughter S... with Fetal Alcohol was told that she needed to take her meds for 30 days with only missing 3 doses a week and she wouldn't need a guardian. She made the 30 days and then thought she didn't need to take them anymore. She understood what they told her but they forgot to add the information that she needed to continue to take her medications and she had to continue to show she could do it in order to have an intervention. In her way of thinking she did exactly what they told her. Then they went back on their word. <br />
<br />
When one of mine was in the teens. I said she had a stomach bug. She thought there were actually bugs in her stomach and she freaked out. Explaining that only caused further anxiety. I finally just said her stomach was sick and she finally stopped panicking. <br />
<br />
When working with kids with FASD's, autism, and other neurocognitive disorders it is very common for some of them to be very CONCRETE in their interpretations of what we say. Talking simply and thinking about what we say can save confusion and mixed messages.<br />
<br />
***I will add that kids who will often present with delays in processing information
auditorilly. Even
though they may be able to <b>comprehend</b> the auditory information given, it may take them additional time to <b>process</b> this information prior to responding. They may also have difficulty following multi-step auditory directions.<br />
<br />
I often tell Becca or Dee as part of something I said that I was just joking or being facetious, or sarcastic to make sure they connect what I was saying. They understand that I was not being serious. Eventually they learned many of the double meanings or when we were joking and laughed even when they did not understand. Implied meanings really make them struggle because they are hard to explain because the rules and circumstances are more fluid and not consistant. My kids with FASD got the teasing much better than Becca with her autism and Noonan Syndrome.<br />
<br />
So when I see my kids stare at me with those confused eyes, I wait to see if they get the little light bulb look at they just processed the information or they still are confused. I then rethink what I just said and explain it more simply and then I see that they finally figured out what I was meaning.<br />
<br />
Strategies:<br />
<br />
<ul>
<li>Auditory information/prompting should be kept to a minimum. It is often too overwhelming for some children/adults. Visual cues should be used to
assist the child to more readily comprehend directions, questions,
rules, figurative language, etc. </li>
<li>Give the child enough <b>time to respond</b>,
in order to allow for possible auditory processing difficulties. Wait before
repeating/rephrasing the question/directive. Double check for understanding from the child's perspective.</li>
<li>The adults in the child's environment should be aware of the child's
concrete/literal interpretation of figurative language. We should help
by providing concrete explanations. We need to increase the child's
comprehension of figurative language skills,
such as idioms, multi-meaning words, jokes, teasing, etc., through the
use of simplied explanations. <br /><br /> </li>
</ul>
<ul><b><a href="http://specialed.about.com/od/literacy/a/figurative.htm">Figurative vs. Literal Language </a></b></ul>
<ul>When working with children/adults with FASD, autism and other processing issues. Speak slower giving them time to process, simply and concretely. Watch for looks of confusion and misunderstanding and check for understanding with asking a question. Then explain again using more literal/concrete terms. </ul>
Use visual supports which helps them have the ability to
independently complete tasks/activities and as always we need to show
more and talk less with our kids/adults with auditory processing
disorders. <br />
<br />
One thing I have found highly effective with working with my teens and adults with auditory processing difficulties is to use their always present cell phone as a tool to help them be more independent. I talk less, I text more and thus they are highly successful and Mom is not nagging from prompting, prompting or explaning. They see it, they can do it, they can reference it if they forget and they can ask questions that simplify my responses. It also cuts the processing time way down and it is done much faster.<br />
<br />
<br />
<ul> </ul>
<br />
<br />
<ul> </ul>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.amazon.com/Unintentional-Humor-Celebrating-Literal-Mind%C2%99/dp/098345096X/ref=sr_1_fkmr0_1?ie=UTF8&qid=1385274393&sr=8-1-fkmr0&keywords=%22Unintentional+Humor%3A+Celebrating+the+Literal+Mind+of+Autism.%22+Anderson%E2%80%99s"><img alt="http://www.amazon.com/Unintentional-Humor-Celebrating-Literal-Mind%C2%99/dp/098345096X/ref=sr_1_fkmr0_1?ie=UTF8&qid=1385274393&sr=8-1-fkmr0&keywords=%22Unintentional+Humor%3A+Celebrating+the+Literal+Mind+of+Autism.%22+Anderson%E2%80%99s" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXSD83viqA6iNW5J1mUl2QYFvWWmDjTth8eCHNbDmmcqZQ0mxwRkE5nLjOncL96wVxCory-sZQfhb4REc0KhuSIr43sxmbZkXLTxa5j7rK6UQ2AQqK-7PmcnpoZcQ9DTgyWz5e2YfX0Q/s1600/Unintentional+Humor.jpg" /></a></div>
<br />
I found this book, inspired by a boy with autism, "Unintentional Humor is a laugh-out-loud
book that highlights the ambiguity of the English language when
experienced by a literal mind. Literal interpretations of common
expressions such as Surfing the web, You're in the dog house."<br />
<br />
"The twenty-three pages of definitions make Unintentional Humor an
effective teaching tool for both home and school. Unintentional Humor is
being developed into school curriculum, learning materials, and a
series of additional books."Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-60845185890896256072013-11-15T21:07:00.002-08:002013-11-15T21:07:37.873-08:00Broken Adoptions: Another Story in the Headlines<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7QsGbwJ5gYQOg1SuPLhJ0IK0HnJRih-IG9Js-k0gcK4yuEieTywJo1cCO0puT1K5PKXIeyt_RLYM5Onqf8m3Lqn9KALtJ7llMz5c72uH1Px8D8h89C3-rZJnApaB6xJ_M88t7SEOr-Q/s1600/adoption+broken+promises.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7QsGbwJ5gYQOg1SuPLhJ0IK0HnJRih-IG9Js-k0gcK4yuEieTywJo1cCO0puT1K5PKXIeyt_RLYM5Onqf8m3Lqn9KALtJ7llMz5c72uH1Px8D8h89C3-rZJnApaB6xJ_M88t7SEOr-Q/s320/adoption+broken+promises.jpg" /></a></div>
<br /><br /><a href="http://abcnews.go.com/US/wireStory/ohio-couple-back-adopted-son-years-20893962">Another story of a desperate family with an adopted child who gave up</a>. I do not condone the method of how they gave up their son, but I understand their desperate measures to keep their family safe.<br /><br />In October when the Reuters story broke about the rehoming of children hit the headlines, I wrote a piece on <br /><br /><a href="http://www.annystribe.blogspot.com/2013/10/adoption-where-systems-have-failed-both.html">Adoption: Where The Systems Have Failed Both Children and Families</a><br /><br />The Ohio story is spreading like wildfire across the internet. How come the real story is not ever heard?
When will it end... if we don't start addressing the problems with the lack of help, diagnosis, post adoption support, families will keep making the headlines by giving up, or in some severe cases find themselves in unthinkable circumstances. Families are not equipped to be residential treatment centers without any guidance or support or understanding.<br /><br />Here is my attempt at educating the media.
As a long time adoptive parent and advocate of some very challenging children I have seen adoptive and biological families struggling to find services in a broken system. There is much written about the failure of the children's mental health system and the lack of qualified board certified child psychiatrists, plus the lack of parity with insurance companies, lack of evidence based practice and the lack of research into the effects of psychotropic medications and the off label use on our children.
<br /><br />Many of these children also have been prenatally exposed to alcohol and drugs in utero and the kids from the foster care system also have challenges and brain structure changes from the effects of abuse and neglect. Normal parenting strategies for these children do not work and the advice given by the children's mental health system often is opposite from what actually works with children with prenatal alcohol exposures. <br /><br /><a href="http://livingwithfasd.com/52-children-foster-care-may-fasd1/#sthash.LskXKz4y.dpbs">A recent study written in Canada says 55% off the children in foster care have Fetal Alcohol Spectrum disorders</a>. <br /> <br />The lack of research, diagnosis, and awareness and evidence based practice is really hard to find. And there is little post adoption support, foster parents move these children from place to place and some of these children due to their histories have a hard time fitting in home leaving families desperate, grieving and broken from trying everything and faulted for not loving them enough. <br /><br />Post adoptive support services need to be funded to help families when they find themselves with a child who needs help.
Love alone will not heal the children when they are genetically challenged by their parents genetics which are often loaded with mental health issues, prenatal alcohol and drug exposures, for children from institutional settings and the foster care system abuse, neglect and trauma. <br /><br />
<a href="http://www.bazelon.org/Where-We-Stand/Success-for-All-Children/Child-Welfare-System.aspx">From the Bazelon Center for Mental Health Law Child Welfare</a><br /><br /><br />There is much written about the failures of the well kept secret of broken systems of care and the Custody Relinquishment to garner Mental Health Systems not just from biological families, adoptive parents, kinship parents have all faced the awful decision that after exhausting options to gain a very expensive out of home placement. All children belong in homes and parents sometimes are sleeping under threat of harm, fear not only for their child, themselves, the siblings and everyone suffers from secondary trauma. <br /><a href="http://www.bazelon.org/Where-We-Stand/Success-for-All-Children/Custody-Relinquishment.aspx">More on the issue of Custody Relinquishment </a><br /><br /><br /><a href="http://www.bazelon.org/Where-We-Stand/Success-for-All-Children/Custody-Relinquishment/Custody-Relinquishment-Policy-Documents.aspx">Policy Documents on finding alternatives to Custody Relinquishment</a><br /><br />We need help and I have been helping parents find services for now 15
years after I adopted a set of 5 from foster care. I had little help, I
had to fight, I had to learn the ins and outs of Medicaid law and fought
for the right for my adopted daughter who while on medications which
were making her worse nearly killed me. The black box warnings were too
late. But she was not mentally ill only, she had Fetal Alcohol syndrome
and I had to fight for two years for her right to family and a
residential placement as a young teen. Today she is an adult, she knows
that this mom never gave up.<br /><br />We have not come very far since 2003 when the United States General Office of Accounting wrote a report on this tragic practice. <br /><br /><a href="http://www.nami.org/Template.cfm?Section=Issue_Spotlights&template=/ContentManagement/ContentDisplay.cfm&ContentID=12364">Nami's information on that report:</a> <br /><br /> But few families can fight a broken
system.
Until we look at the underlying problems and find help these stories will continue to happen and families crucified by society and the media for the lack of support and understanding of some very complex issues and the underlying cause of most of these stories. Fetal Alcohol Spectrum Disorders compounded by no support for families and often times inadequate histories when parents adopt. Kinship parents, foster parents, biological parents also struggle with our FASD, mentally ill and all become traumatized and every one loses.
<br /><br />Why do I know so much: I had no choice but learn it all to fight for my adoptive daughter's right to family and not be relinquished to the vary system she came from.<br /><br />I wrote our adoption and fight story in the second half of our families story. <br />Tiny Titan, Journey of Hope by Ann Yurcek<br /><br />I have spent the last 10 years helping families keep custody and find support and diagnosis for their complex adoptive children. Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com0tag:blogger.com,1999:blog-6122996855269696158.post-10257640683346252622013-10-01T10:42:00.001-07:002013-10-01T17:38:37.764-07:00Adoption--Where The Systems Have Failed Both Children and Families<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEHXaSgp7psDAKYSC7OzLBr4oGddHkUOCE904Q30DW1uhS8oyfFfSb43MdXYgDEipFFNLDQEyDVpbgVGzig-Cv4IUoRmPURSv__n0vZJLqNVOjZyvI3FAunl2yHmDtJBGSzjBfwnY9gA/s1600/adoption+broken+promises.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEHXaSgp7psDAKYSC7OzLBr4oGddHkUOCE904Q30DW1uhS8oyfFfSb43MdXYgDEipFFNLDQEyDVpbgVGzig-Cv4IUoRmPURSv__n0vZJLqNVOjZyvI3FAunl2yHmDtJBGSzjBfwnY9gA/s320/adoption+broken+promises.jpg" width="320" /></a></div>
Adoption in the media again. Adoption Horror Stories and the Rehoming Stories. <br />
<a href="http://www.reuters.com/investigates/adoption/#article/part1">The Child Exchange.. America's Underground Market for Adopted Children</a><br />
<br />
This time with a big way... Rehoming. Adoptive parents who became so desperate that they resorted to moving their children to another home without going through proper channels.<br />
<br />
<br />
<u>First I will not condone any of the actions of the
parents who put their adoptive children in jeopardy, but I can
understand just how desperate they could be.</u><br />
<br />
This blog post is going to be complex, but it is a complex problem that causes parents to give up on their children. I hope this helps to put another spin on it but with research to support my arguments.<br />
Not media hype.<br />
<br />
I saw glimpses of this as it was happening over the years and stayed away from any of the discussions and discussion boards on the subject. A couple of times on other groups the subject came up and I talked about finding the help through the proper channels. Starting with the Mental Health, Adoption Support, their insurance and Medicaid and tried to help some parents find scarce help.<br />
<br />
<br />
Back in 2000 I wrote a letter in the middle of the night. My thoughts about having to tell my daughter that she was going to have to go back to vary system she came from to find the mental health services she so desperately needed. I searched and searched and found no hope or help for her. I tried every door and found that the system was not set up to help parents who found themselves in our situation. <br />
<br />
I found the little known secret of failed adoptions.<br />
<a href="https://www.childwelfare.gov/pubs/s_disrup.cfm"> Adoption Disruption and Dissolution from the Child Welfare Gateway </a><br />
Some of those circumstances from lack of knowledge about what it takes and think love is enough. Sometimes it is because of often not disclosed information. Most often it is the lack of proper supports. For those who find themselves with children with severe complex needs, it is a lonely world.<br />
<br />
I know that in our own circumstances, we were not allowed to see any of the records and they did not disclose that our children were not general level of care kids. We were promised that none of the group of kids had any needs that would put other children in jeopardy as we had our own children and a medically fragile child to think about. But we found ourselves with four of them who were in therapeutic foster care and the three seventeen page psychologicals on the kids were never shown us that they were much more needy than we were told. Never-the-less we did not give up even if had been fraud. We had made a promise.<br />
<br />
Even more on the tragedy of custody relinquishment to garner Mental Health Services.<br />
Custody <a href="https://www.bazelon.org/Where-We-Stand/Success-for-All-Children/Custody-Relinquishment.aspx">Relinquishment from the Bazelon Center for Mental Health Law</a> <br />
Even biological families were forced to put their mentally ill children into the care systems to garner services. But Adoptive Families had to do it to. To return them to the systems to get services suitable to condition and often times residential treatment if one could find one.<br />
<br />
Those reports highlighted what I had learned. That systems are not equipped to handle our most complex children and families find themselves struggling to find competent help that is hard to come by. One has to exhaust all services and then there are few options. Hospitalizations and residential treatment are hard to come by and often will not except our seriously disturbed children.<br />
<br />
I fought hard and did not give up custody and learned to fight for my daughter and her right to family. But most families will not be as lucky as I was. <br />
<br />
Families who have adopted from the foster care system and the worlds child caring institutions. We have no safety net when we find ourselves with children too severe to attach or too damaged to remain in the home safely. We are vilified for not loving them enough, not caring enough, for throwing away a child. The more of these stories, the harder it is for parents to reach out for help as we are judged, juried, convicted for not loving our children enough or doing enough to help them heal from the ghosts of their pasts. But it is much more complex than that. <br />
<br />
We need a support system all the way from better training and support from the adoption agencies, health and mental health care systems, child welfare, schools and communities supports.<br />
<br />
<br />
We adoptive parents who take on these children, sometimes unknowingly are Parenting Complex Children. Complex... <br />
<br />
Some once told me that they are Genetically loaded (they inherit the parents genetic predisposition). There is actually a study going on to see if prenatal alcohol exposure changes genetic structures. <br />
<br />
Many will be prenatally exposed. A parents substance abuse issues often put these children into the care of the states and countries. A new study confirms what we parents have known for awhile.<br />
<a href="http://www.reuters.com/article/2013/09/09/us-fetal-alcohol-disorders-idUSBRE98804I20130909">Fetal Alcohol Common in Adopted and Foster Kids </a><br />
<span class="st">Neurobehavioral disorder associated with <i>prenatal alcohol exposure. They look normal but can't do normal and normal parenting strategies do not work.</i></span> <br />
<br />
Children who face poverty, neglect and abuse can have neurocognitive issues. Their brains changed by their earlier experiences. <br />
<a href="http://www.apa.org/pi/families/resources/newsletter/2012/07/neurocognitive-impacts.aspx">Neurocognitive Impacts for Children of Poverty and Neglect</a> from the American Psychological Association.<br />
<br />
Most will have at least some mental health issues of some sort from their trauma they have face. The majority are milder or moderate, but some can be severe. For older child adoptions we need to expect Post traumatic stress disorders. Trust issues, and Attachment Disturbances. Why wouldn't they?<br />
They are removed from the only people they knew, put in institutional settings, or disrupted placements.<br />
Often kids act out their stress and those behaviors can cause multiple placements. The child also learns that nothing is permanent and if you are bad enough, you move on and you don't need to attach and trust.<br />
<br />
Parents have answered the call to give children homes, not just from the worlds institutions but from the foster care system in our own country. Many parents go through the trainings and say what they can and can't deal with. But often times the problems will not appear until later when the child can't hit their developmental milestones that it will become apparent or puberty hits. I remembered reading early on a statistics of adoption disruptions and dissolutions.<br />
<a href="http://statistics.adoption.com/information/statistics-disruption-dissolution.html">Adoption Statistics: Disruption and Dissolution </a>from Adoption.com. <br />
<br />
This not a new problem and these are not new numbers. This article written long before the push to move children from foster care into adoptive homes. <br />
<br />
We when adopt the children, we make promises to care for them and help them to the best of our abilities. But for some parents, they find themselves with a child that nothing seems to help. Sometimes the more you love them, the more you try to care for them, or parent them. The worse it becomes. Adoptive parents reach for therapists, books, strategies and anything they can grasp for and often times the worse the situation gets. I remember the conflicting advice I got from the five different treating professionals in the differing spheres of my sibling set of 5. The advice from one conflicted with the advice of another, and learned to trust my own intuition and fire the ones that were worsening my children's conditions. The Reactive Attachment Therapies do not work well for kids prenatally exposed with alcohol. They actually worsen them. Then the schools with their behavior modifications that do not work with FASD and then the triangulation of the child pitting unattached people against the caregivers. It is a set up for Adoptive Parent Burn Out and a child in danger of blowing out of a home.<br />
<br />
Parents are finding themselves having to run residential treatment facilities without any training or support. I have seen adoptive parents/kinship caregivers have to manage kids that have been released from psychiatric hospitals because they could not be managed there. Thrown out of schools for misbehavior's and left to function solo. All the while trying to be on guard 24/7 to protect the child, the other children and even themselves from catastrophe.<br />
<br />
The failures of the mental health system in our country for children are written.<br />
<a href="http://healthland.time.com/2012/12/20/americas-failing-mental-health-system-families-struggle-to-find-quality-care/">America's Failing Mental Health System, America's Struggle to Find Quality Care</a> <br />
<br />
But for the complex children from the care system, they are stuck in a place where the care systems and mental health clash. They are always the others responsibility. For those who bring in kids from other countries they are in a No Man's Land and often on their own.<br />
<br />
I have added to this piece a chart. My favorite with sharing just how complex these children can be. Overlapping Characteristics. I once asked a person in power in the state mental health system. Where is the evidence based practice for my children? He didn't answer, except with the statement you are?<br />
<br />
What I learned is that I had to trust my intuition, leave no stone unturned, I had to fight for my daughter, but also know that I had to keep everyone safe. <br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg5vAHNVP1VF4e57FgeQFO2x5QEQhplWYYgX4-b4qfVR15qtF-MWZv3skwwEYGb0sXpeO6KJeSKHCN1HPUY4552nqAH6bBTmpVLv0YcebsK_iSxux0W-RZ0PUfw38f7i415JcYesKOpA/s1600/overlapping+behavioral+characteristics.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg5vAHNVP1VF4e57FgeQFO2x5QEQhplWYYgX4-b4qfVR15qtF-MWZv3skwwEYGb0sXpeO6KJeSKHCN1HPUY4552nqAH6bBTmpVLv0YcebsK_iSxux0W-RZ0PUfw38f7i415JcYesKOpA/s320/overlapping+behavioral+characteristics.jpg" width="247" /></a></div>
<a href="http://www.mofas.org/wp-content/uploads/2010/12/Overlapping-Characteristics-3-23-10-CBT.pdf"> Overlapping Characteristics Download PDF</a><br />
<br />
<br />
But the systems of help in our country are failure based. Not preventative. The medical system can diagnose the prenatal exposures, but can help us understand the cause. The Children's Mental Health system is not the right place for those prenatally exposed to alcohol but often can help those with the complexities of abuse and neglect issues. But as children mirror the behaviors of others others, these children learn from their peers and those behaviors often worsen in the home. But the lack of competent support for those from the care systems is a challenge. For my kids the Mental Health system and the groups for those kids actually worsened my kids disorders. Knock on the door of Adoption Support and often they tell you you have to use your insurance and Medicaid first. But that is another series of Medicaid stories about that failures for the most vulnerable of children.<br />
<br />
But our kids have no coordinated Silo to find support. Many of the children from the care systems are often of normal intelligence, so developmental disabilities services will not help us. Mental Health services are a poor fit and the strategies do not work with children with prenatal brain injuries. Those lucky enough to present as having autistic tendencies may find services under the Autism Umbrella. <br />
<br />
I was told to look for help in places that were not equipped to handle our needs. I was not an abusive parent, I was not a neglectful parent. I had a daughter too dangerous and damaged to live at home. I was ordered by the Community Mental Health System that I had 60 days to relinquish our daughter and to dissolve the adoption or be charged with abandonment. That document came up missing and I had thought to stow a copy hidden where no one would look for it. Someone told me that when you go public documents burn. <br />
<br />
I had been warned that if we abandoned my daughter in the state hospital, we would face charges and the loss of our other children, not just the adopted sibling set, but our own biological children. The care system trumps parents say, bring this child home or possibly lose your other children, your professional licenses, and be put on the abuse and neglect registry. It is Least Restrictive Setting that is used to say that ALL children belong in the homes and then it is our fault that we are ill equipped to meet their needs. Even when someone gets hurt, we need to go against the recommendations from the professionals that we need to have them home to attach.<br />
<br />
If you have to place your child into foster care system, the adoptive
parents often lose their adoption subsidies if they are lucky enough to
have one if you adopted from the US or if you adopted internationally
you will be charged with the cost of the child's care. I have even seen
where an adoptive parent was charged and they took not only the child's
adoption subsidy but the adopted siblings subsidy as well and handed
the adoptive parent the bill from the state and put liens on the parents home. The same state that adopted
the child to the couple and the agency hid the records. Adoptive parents are often charged with paying for the court fees to get help from the justice system when the Child Welfare and Mental Health Services fail. Too many adoptive parents face calling the police as the option of last resort. Followed by the knock on the door from the Child Protective Service Workers.<br />
<br />
No wonder why parents take into desperate measures to find support, the wrong way. Because has anyone tried to Navigate the MAZE to find help for those most vulnerable of children who are the small percentages of kids whose needs are great. Some of us who find ourselves with a child with intense needs, we will get secondary trauma not just for the parent, but the siblings as well. <br />
<a href="http://www.come-over.to/FAS/RADparentsPSTD.htm">PTSD in Parents of Children with RAD</a> <br />
<br />
We are held accountable for the failures of the Child Welfare, Adoption and Child Mental Health Systems, Medicaid, Insurance and Schools to have a Continuum of Care and a Safety Net. and it is time for all of us to stand up for finding Post adoption support services and a continuum of care for the the adoptive children and families so they can honor the promises. For those of us who have adopted from the United States Foster Care System we need not just a check, we need real help and not be judged and serviced by the child protective services the same care system that our kids came from. <br />
<br />
We need a post adoption program and laws that will protect our families from the catastrophic costs of having a child with severe issues.<br />
<br />
We need the media to focus not just about the adoption horror stories, but real stories of real families fighting the odds to try to help very complex fragile children. We need evidence based adoption conscious services and supports in all the service sectors and those parents will not resort to give up on their adoptive children. And for those children who do not fit into the adoptive home, we need laws that no do penalize the family for trying to find healing for the child and for everyone involved. It should not be seen as failure, but just another place to meet the needs of the child. <br />
<br />
We did not give up on my daughter, or her siblings, but we did pay a price. Many an adoptive parent said that they were more traumatized not by trying to help their child. The trauma of the lack of support and navigating the systems if often times are much more damaging than our circumstances.<br />
<br />
Postscript: My daughter is now 28 and she still has a family to advocate on her behalf and call home to and we have gone on to adopt another little guy with Fetal Alcohol Syndrome plus a host of other problems and he is thriving. We have full disclosure, we will do whatever and find whatever it takes to give him the love and supports to thrive. But we also know that we cannot heal his prenatal brain damage but love him and nuture him through his challenges.<br />
<br />
<br />
<br />
<a href="http://www.nacac.org/adoptalk/homecoming.html">A followup to our story written for the North American Council for Adoptable Children in 2003</a>Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com1tag:blogger.com,1999:blog-6122996855269696158.post-68390470038515230112013-09-09T06:18:00.003-07:002013-09-09T06:18:57.987-07:00The Face of Fetal Alcohol Syndrome. The Innocent Victim. <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUw8NQFAZQKxFlRfYGF4hzeyobeq6wAK8pRv2di5rjAxjtyfTQnbcWigtNeqRbSnXFk_q3CUeI01HPk8C2wBvmH0ATgix89q3yXT6oCpU3Zkxo2JVK_pKgdqyifoicRHd4ZkO0gZTt2g/s1600/May+2013+018.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUw8NQFAZQKxFlRfYGF4hzeyobeq6wAK8pRv2di5rjAxjtyfTQnbcWigtNeqRbSnXFk_q3CUeI01HPk8C2wBvmH0ATgix89q3yXT6oCpU3Zkxo2JVK_pKgdqyifoicRHd4ZkO0gZTt2g/s400/May+2013+018.JPG" /></a></div>
This is McKellan. He has Fetal Alcohol Syndrome. He is an Innocent Victim of Prenatal Alcohol Exposure.<br />
<br />
Today is National Fetal Alcohol Syndrome Awareness Day. In many places around the country bells will ring at 9:09 am. This day was chosen for the 9th month, the 9th day, and the hour of the bells 9:09 to represent the length of pregnancy. Please do not drink when your pregnant.. You will save your child a LIFETIME of struggling and hardship!Annystribehttp://www.blogger.com/profile/07244800246409157346noreply@blogger.com1