Tuesday, March 29, 2016

Mackie and Technology: Adapting and Downloading Worksheets for Preschoolers to iPad

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. 

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.

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
was never good enough.

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.

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!

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.

Searching the internet, I found one and only one set for preschool, kindergarten tutorials on

Transferring worksheets to your iPad

I downloaded Dropbox to my computer.  Searched my Pinterest Preschool Pins

Followed the directions and uploaded a file or two to practice with.

Then heading over to the iPad
Downloaded  Good Notes 4 & PDF ($7.99)
Downloaded  Dropbox for iPad (FREE)

Then followed the instructions on the transferring worksheets to your iPad link above.

Mackie's first worksheet!

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.

My demonstration of coloring using the highlighter feature with the widest width stroke.

On his iPad I screen shot his work and then use email to the teacher!

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.

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!


Friday, October 30, 2015

An Autism Win and A Story: Fighting for What Was Right.

I have learned the very hard way that I had to fight for services and treatments for my children.
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.
Over the years I learned that our fight for Becca was not just for us. 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.

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.
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.

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.

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.

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.  The story of the fight for Shay would spread and a Mom beat the system using my daughter's right to care. 

I learned way too much and had to become an expert for my children. In 2006,  would chronicle our story in my long procrastinated memoir. Taking me to places I did not want to return.  It was just too much, but to help others I ventured forward.

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.

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.
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.

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.

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.

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:

"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.

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."

In closing in the report:

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.

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.

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.
We would push our efforts into getting him adopted and then we would be able to find his care.

I found that children with autism in Wisconsin who have insurance had a mandate to care.  I knew once adopted we could begin the process to get him the Early Intensive Services he needed.

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.

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.

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.

I took on the fight, I had been following the rulings out of Florida from 2012 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.  The appellate court upheld the ruling, but ruled that it was not an open entitlement, but a case by case prior authorization supported by the doctors and screenings recommendation.

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 Bulletin from CMS I had the ammunition to fight on. 

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.

I filed for a fair hearing in August of 2014.  With submitting a 2 inch binder of the EPDST Guidance to States, 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.

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.

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.
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.

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.
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.

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.

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.

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.

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.

Yesterday at long last, I found the announcement from the State of Wisconsin about Behavioral Treatment and Services for Children with Autism 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.

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.

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."
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.
Parents fighting for their children can make the impossible happen.


Tuesday, September 15, 2015

Taking the High Road

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.

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.

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.

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".

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.

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.

Just then I saw his para and Mackie walking out and I just quickly loaded him and his medical chair up and drove off.

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.

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.

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.

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.

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.

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.


Monday, January 12, 2015

At Last... The Pain Was Real. Hypermobility and Noonan Syndrome, Not Just Growing Pains.

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.

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.

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.

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.

I have found bits and pieces of literature on Noonan Syndrome and Connective Tissue.

They knew in 1974. The Noonan Syndrome, A Family Study  "Hyperelastic skin and microscopic abnormalities of biopsied blood vessels suggest a basic defect in connective tissue in this disorder."

Another link that labeled Noonan Syndrome as a Heritable Disorder of Connective Tissue from the Connective Tissue and its Heritable Disorders. Molecular, Genetic and Medical Aspects, Second edition.  Published in 2002.

In another article Ehlers Danlos syndrome--masquerading as a primary muscle disease it talks about "The diagnoses of Marfan Syndrome, Marfanoid hyper mobility and Noonan Syndrome which might resemble Ehlers Danlos Syndrome."

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.

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.

"Tiny Titan Media's The Pain is Real"   November 5, 2013

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...

STRETCH YOURSELF, Learning to Manage Chronic Pain with Joint Hypermobility.

Nathan J. Rudin, M.D., M.A.
Associate Professor (CHS), Rehabilitation Medicine University of Wisconsin School of Medicine and Public Health
E. Richard Blonsky Memorial Pain Lecture
Midwest Pain Society 38
th Scientific Meeting, October 24, 2014 

Sunday, May 11, 2014

Happy Mother's Day--- My Daughter, My Teacher, My Gift

My Mothers Day Tribute is going to be a very unique and heartfelt post. Thank you to my daughter Becca.

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.

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.

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.

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.

 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

I learned to advocate, fight, stand up for what I knew was right, despite the odds.

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.

Thank you Becca for being not only being my daughter but my inspiration.

Happy Mother’s Day!

Friday, March 14, 2014

Becca's Fundraiser--I Love Noonan Syndrome Bracelets

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.

Sunday, February 16, 2014

Dear 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.

To learn more about FASD

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.

Dear Long Line of People who not get FASD,
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.

Dear Next Door Neighbor,
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.

Dear Day Care Provider,
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.

Dear Kindergarten teacher,
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?

Dear Elementary Teacher,
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.

Dear Child Psychologist,
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.

Dear Sunday School Teacher,
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.

Dear Child Protection Worker,
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.

Dear Child Psychiatrist,
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?
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?

Dear Attachment Therapist,
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.
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.

Dear Middle School Principal,
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.

Dear Coach,
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.

Dear Mr. Police Officer,
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.

Dear Mr. High School Principal,
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.
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.

Dear Community Mental Health,
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.

Dear SSI Interviewer,
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.

Dear Judge,
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.

Dear Mr. Jail Keeper,
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.

Dear Mr. President and Congress,
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
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.

Dear Lord,
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.

copyright: Ann Yurcek 2/16/201