Friday, December 20, 2013

Paying it Forward and Helping to Fulfill a Christmas Wish. Creating a Miracle for a Grieving Mother


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. (The Christmas Story)

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.

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.

Stephanie died the day after arriving on December 8th.  Her mother's wish to bring her daughter back home.  $3000 they did not have.



Family Struggles to Get Their Daughter's Remains Home to US 
http://www.firstcoastnews.com/topstories/article/339148/483/Family-struggles-to-get-their-daughters-body-back-in-the-US?odyssey=tab


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.

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 Noonan Syndrome Foundation,.  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.

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.

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. 

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.

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. 

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.

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.

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.



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.

Please join me in making any size donation to help one of our own bring her daughter home.

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.

For Catherine McCoy join me in helping fulfill her wish and bring Stephanie home.

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.

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: http://www.firstgiving.com/fundraiser/NSF/steph


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.

Saturday, November 23, 2013

Literal Language and Misinterpretations with Kids with Special Needs.... Understanding Language Comprehension/Auditory Processing Difficulties

                                                       "You're in the dog house."

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.

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.
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.  But we understand it as an expression.

Language Comprehension/Auditory Processing Difficulties


Characteristics: Children with Asperger's Syndrome, FAS, some with Noonan Syndrome and other developmental disabilities generally interpret auditory information literally and concretely. They can have difficulty understanding figurative language, jokes/riddles, multiple meaning words, teasing and implied meanings.

Children are literal thinkers, meaning that they interpret words at face value. ... Children need correct information given in concrete language. 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.

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.

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.

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.

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.

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.

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". 

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.

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.

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.

***I will add that kids who will often present with  delays in processing information auditorilly. Even though they may be able to comprehend the auditory information given, it may take them additional time to process this information prior to responding. They may also have difficulty following multi-step auditory directions.

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.

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.

Strategies:

  • 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. 
  • Give the child enough time to respond, 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.
  • 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. 

  •  
    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.
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.

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.


     


     
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

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."

"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."

Friday, November 15, 2013

Broken Adoptions: Another Story in the Headlines



Another story of a desperate family with an adopted child who gave up. I do not condone the method of how they gave up their son, but I understand their desperate measures to keep their family safe.

In October when the Reuters story broke about the rehoming of children hit the headlines, I wrote a piece on

Adoption: Where  The Systems Have Failed Both Children and Families

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.

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.

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.

A recent study written in Canada says 55% off the children in foster care have Fetal Alcohol Spectrum disorders.

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.

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.

From the Bazelon Center for Mental Health Law  Child Welfare


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.
More on the issue of Custody Relinquishment


Policy Documents on finding alternatives to Custody Relinquishment

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.

We have not come very far since 2003 when the United States General Office of Accounting wrote a report on this tragic practice.

Nami's information on that report: 

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.

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.

I wrote our adoption and fight story in the second half of our families story.
Tiny Titan, Journey of Hope by Ann Yurcek

I have spent the last 10 years helping families keep custody and find support and diagnosis for their complex adoptive children. 

Tuesday, October 1, 2013

Adoption--Where The Systems Have Failed Both Children and Families

Adoption in the media again. Adoption Horror Stories and the Rehoming Stories. 
The Child Exchange.. America's Underground Market for Adopted Children

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.


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.

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.
Not media hype.

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.


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.

I found the little known secret of failed adoptions.
Adoption Disruption and Dissolution from the Child Welfare Gateway 
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.

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.

Even more on the tragedy of custody relinquishment to garner Mental Health Services.
Custody Relinquishment from the Bazelon Center for Mental Health Law
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.

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.

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. 

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. 

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.


We adoptive parents who take on these children, sometimes unknowingly are Parenting Complex Children.  Complex...

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.

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.
Fetal Alcohol Common in Adopted and Foster Kids   
Neurobehavioral disorder associated with prenatal alcohol exposure. They look normal but can't do normal and normal parenting strategies do not work.

Children who face poverty, neglect and abuse can have neurocognitive issues. Their brains changed by their earlier experiences.
Neurocognitive Impacts for Children of Poverty and Neglect from the American Psychological Association.

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?
They are removed from the only people they knew, put in institutional settings, or disrupted placements.
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.

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.
Adoption Statistics: Disruption and Dissolution from Adoption.com.

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.

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.

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.

The failures of the mental health system in our country for children are written.
America's Failing Mental Health System, America's Struggle to Find Quality Care

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.

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?

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. 
                                          Overlapping Characteristics Download PDF


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.

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. 

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. 

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.

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.

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.
PTSD in Parents of Children with RAD

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.

We need a post adoption program and laws that will protect our families from the catastrophic costs of having a child with severe issues.

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. 

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.

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.



A followup to our story written for the North American Council for Adoptable Children in 2003

Monday, September 9, 2013

The Face of Fetal Alcohol Syndrome. The Innocent Victim.

This is McKellan. He has Fetal Alcohol Syndrome. He is an Innocent Victim of Prenatal Alcohol Exposure.

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!

Sunday, September 8, 2013

Mackie's Ringing The Bells for FASD Awareness 9-9-13



McKellan has Fetal Alcohol Syndrome.

He was one of in 40,000 who was born with Fetal Alcohol
Syndrome in the United States each year.

The estimated lifetime cost for someone born the FAS will exceed
$2 million dollars.

Mackie is an Innocent Victim of Prenatal Alcohol Exposure.

Zero For Nine Months

For More About FASD Read: The Innocents, FASD, Victims

Monday, August 26, 2013

My Facebook Favorite and I Designed My Shirt


I found this picture on Facebook and it is so true.  Parents who have complex kids have to do their searching for answers. It is just part of the job description.  Parents with Special Needs kids know their childrens needs. As the internet has opened the doors, parents are becoming the experts in their  children's disorders. The online support forums are full of knowledge and interventions and we share our children's lessons that others may find answers. Google scholar, search engines, we read, we research and we learn to read medical jargon.


Order Here

Tonight I searched out a site for designing my own t-shirt or sweatshirt. I will wear it with pride.

Sunday, August 25, 2013

The ABC's of Living with My Noonan Syndrome by Becca Yurcek



The ABC's of Living with My Noonan Syndrome
by Becca Yurcek

Anxiety
Bruising and Bleeding
Contractures
Drinking--- It hurts and I choke and Dr. Sheirlie lectures me.
Eating and Esophagus-- It hurts and it gets stuck.
Failing-- Schools and some Doctors don't get it.
Gagging-- gagging and wretching that hurts my chest and ribs
Heart Racing and Headaches-- which I wish would go away
Intense Pain
Joint Pain
Keeping Weight Up Challenge
Lymphedema Is painful and keeps me sitting my feet up
Migraines
Nissen falling apart and food gets stuck on top of it
Osteoporosis
Pain
Questions no one can answer
Respiratory issues Sleeping-- too much or have trouble sleeping
Teeth I wish I could smile because my teeth are so awlful
Ultrasound on my elbows and hip.
Vitamins for my anemia, folate, Vitamin B12, C and D deficiencies.
Walking I can't, I need my chair
Xanax for my anxiety
Yo Yo, the ups and downs of my days
Zofran for my nausea and wretching. My favorite Medicine.
Copyright 8-22-2013

The ABC's of School With Noonan Syndrome

                   The ABC's of School With Noonan Syndrome
                   By Becca Yurcek

                   Advocate and Attention Problems
                   Behavior = Language
                   Caring Teachers and Friends
                   Dyslexia and Dysgraphia
                   Expressive Language and Executive Function Deficits
                   Fatigue and Fine Motor Problems
                   Gym Class Needs Modification
                   Hypotonia and Hyperacusis
                   IEP and Illness
                   Just Want To Be Included
                   Kids Learn Differently
                   Learning Disorders and Limit Writing
                   Modified Assignments and Maturity Delays
                   Not Going = Not Meeting The Needs
                   Overstimulating Environments
                   Pain Interferes with Learning
                   Questions Answered Verbally
                   Resiliency, Rest and Repetition
                   Social Skills, Scribe and Shut Down
                   Technology and Talents
                   Understanding
                   Victim of Bullying Too Often
                   Writing is Difficult
                   Xtraordinary and Xtra Time
                   Yo Yo Ups and Downs of Living with NS
                   Zero Teasing
                   copyright 8-25-2013


 If a child does not learn the way you teach, 
teach them the way they learn. 
 
                                          
                              Advocate, Adjust, Encourage 
                           Educate About Noonan Syndrome

Tuesday, July 23, 2013

Ring Around the Medical System

These past couple of years, I have been playing Ring-A-Round the Medical Beaucrasy.  No matter how hard I try I still keep running in circles. As families we are trying to make sure that we do what we are supposed to do to manage our childrens/adults with disabilites care.  I document, fight, and think I have it problem solved only to find it wasn't fixed or another roadblock happens.

I decided to write my frustrations and document my journey to get Becca help.

Becca told us it hurts to eat and "things" are getting stuck behind her sternum in her esophagus.
  1. Becca says it hurts to eat and things are getting stuck in her esophagus and its sitting on top of her Nissen fundoplication.
  2. I take her to her primary care doctor who puts in a referral for a GI doctor.
  3. Called several in network GI providers. 
  4. Checked on a Pediatric GI due to Becca's stature.  Denied to see because she is over l8.
  5. Referral to out of network provider. The Doctors office put in a Prior Authorization for Out of Network Referral
  6. Insurance company denied Out of Network GI Doctor.
  7. Appealed insurance company denial.
  8. Insurance company approved.
  9. The Out of Network GI triage  called said they will decide if they want to see her. They will let me know in 3 to 4 weeks.
  10. Out of Network GI triage said they did not feel she needed to be seen. She does not have a GI History is their reasoning. (Becca saw GI for 16 years and had a GI, 2 GI surgeries etc. and l7 years of a gastrostomy tube).
  11. Insurance company Out of Network authorization ran out.
  12. Reapplied for Prior Authorization Out of Network appointment.
  13. Resubmitted information to Out of Network GI.
  14. Insurance company denied the Prior Authorization.
  15. Wrote a letter and got the insurance company Case Manager involved.
  16. Got approval from insurance company to see Out of Network GI.
  17. Got a phone call that Becca was scheduled for a scope the next week (without seeing the doctor?)
  18. Called the GI office and asked if it is normal to not see the doctor before a procedure.
  19. They explained that the Doctor felt this is what needed to be done and they don't always see the 
  20. patient first.  I explained that Becca has complex needs including heart problems and  bleeding  disorders and they need to plan to do anything. They haven't even talked to her or us about the problem.
  21. The Office called to say they needed proof that our insurance company approved the out of network.
  22. Faxed the out of network approval out.
  23. Called to double check so can make the appointment.
  24. Had to resubmit to see the doctor at the GI triage
  25. GI triage had to talk to Becca's primary care provider to see if she still needed to be seen as it was over a year ago.
  26. Primary Care Doctor's office resubmitted paperwork
  27. Triage Called and scheduled the appointment
  28. Called the Health Insurance Company Case Manager to see if the referral is still good. 
  29. Resubmit the changed Out of Network Prior Authorization date.
  30. Got the Prior Authorization Approval Letter and called to make an appointment with GI triage.
  31. Waited 2 weeks for returned call and got an appointment.
  32. Got a phone call from reimbursement and had to fax in the Insurance Company approval.
  33. Drove in for the appointment 2.5 hours from home. Arrived to find out they had called to move the appointment an hour up and we were now late. (I was already gone when they moved it up). They saw us during the lunch hour and the Doctor kept using foul language.
  34. Doctor says she needs a GI scope and needed pre-surgery physical. GI ordered a swallow study.
  35. Took Becca to see her Primary Care Doctor for physical and gave them the order for the swallow study.
  36. Doctor made recommendations based on bleeding information from her Hematologist in MI.
  37. Doctor arranged the swallow study and we got it done.
  38. Scheduling called and said that I needed to go to our In-network Hospital for the treatment via IV for the procedure and then be admitted to the other hospital for the scope. I asked why they couldn't just bill Medicaid for the medications etc. They said that if she had Medicaid only they would have to take the Medicaid reimbursement, but not if we had insurance they wouldn't.
    Coordinating two hospitals for the procedure with 1 hour administration of IV antibiotics and platelet transfusions was not feasible
  39. Doctor called up to the GI to give recommendations on why you cannot go back her stomach as her risk of duodenal hematoma because of her platelet defect. The doctor refused to admit her overnight per recommendations.
  40. Met with Primary Care for Becca's monthly visit and we fired the Out of Network GI.
  41. Asked Becca's Adult Congenital Cardiologist in another major hospital system about who should see her.
  42. Took recommendations to her primary care doctor. Put in the referral to the Pediatric GI.
  43. Put in the Out of Network Prior Authorization for the Pediatric GI.
  44. The insurance company miraculously approved it.
  45. Put in a referral for the Hematologist who was recommended by Becca's Cardiologist. Saying that Becca needed a medical home with specialists who were in the same system to coordinate her complexities.
  46. Submitted the Hematology Referral.  Prior Authorization for an Out of Network Approval to insurance
  47. Pediatric GI would not see her due to her age and scheduled her with an Adult GI.
  48. Doctors office put in another Out of Network Prior Authorization for the GI in a different department in the major hospital.
  49. Insurance company now denied the Prior Authorization.
  50. Called the Insurance Company Case Manager but Becca's worker had retired. Had to fill her in on all the troubles we were having with insurance. Told to resubmit and attach the old approval with a letter and the documents on why she needs this.
  51. Prior Authorization was approved.
  52. Primary Care Clinic called to say it was approved and they made the appointment.
  53. Becca finally saw the Adult GI. He ordered us to come back for an Upper GI.
  54. Called the clinic to put in a referral and pull the paperwork for the Out of Network Upper GI.
  55. Insurance company denied. But with having the denial, the Out of Network Hospital took the Medicaid payment.
  56. Test was done.
  57. GI Nurse Practioner called to say they found that Becca has a Paraesophageal Hernia and they need to Scope her. But not until she is given clearance from Cardiology and Hematology with their recommendations for treatment.
  58. Resubmitted for the Hematology Prior Authorization at the the GI and Becca's heart doctors hospital. 
  59. Insurance company denied the Out of Network Hematology consult. Saying she can see in network people. But the hospitals in their network cannot manage her care.
  60. Called the Hematologist who the insurance company wanted her to see. His office told us that he was not wanting to continue as her physician as Becca wanted a female.
  61. Asked for an Out of Network Referral to the Recommended by her Cardiologist in the same hospital system as the current GI.
  62. Clinic put in a Prior Authorization to the insurance company for the Out of Network Hematologist.
  63. Insurance Company Denied.
  64. Put in an Out of Network Referral to a Out of Network Hematologist who saw Becca 1 time and never let us go back.
  65. Insurance Company Denied.
  66. Appealed, Denied until I see every Hematologist in the In Network system. Told to go back to the assigned in network Hematologist who did not feel comfortable seeing her.
  67. Made an appointment to the First In-Network Hematologist, who was not comfortable with Becca. Argued with him about Becca's bleeding disorder. He says she has "Normal numbers of Platelets" and nothing should be a problem. I handed him the records from the Out of Network Specialists recommendations and her prior Hematologists. Explained that her Platelets do not work and he told me I was wrong. I asked for him to arrange a second opinion and left in tears while Becca made the appointment.
  68. Saw the New In-Network Hematologist who got a stack of Hematology records. She had begun to talk about the First In-Network Hematologists recommendation.  I showed her the Platelet Studies from the UW of Michigan before we moved. She then said she was not sure she could handle our daughter's case but wanted to talk with some of her collegues from her training at the UW (Where Becca went once) about bleeding findings in Noonan Syndrome.
  69. Waited 6 weeks and then called back to find out if the Doctor was going to be Becca's doctor or not.
  70. Doctor called a week later and said that the colleague wanted more testing.
  71. Took Becca for more testing.
  72. Got the results from Becca's Primary Care Provider which now adds 3 abnormal clotting factors.
  73. Called the Hematologist to see if she wants to see Becca or go over the results and whether she wants to be Becca's Hematologist.
  74. Still no returned phone call to Mom.
  75. Talked to Primary Care to find out what to do with Hematology at an appointment for Becca.
  76. Primary Care Provider called and talked to the Hematologist who says that Becca will need Fresh Frozen Plasma, Clotting Factors, DDAVP, Platelets for the procedure and then Amicar every 4 to 6 hours for several days following.
  77. Put in a new Prior Authorization for an Out of Network Referral for GI.
  78. Put in a Prior Authorization for the Out of Network Referral with the insurance company.
  79. Insurance Company Denied.
  80. Put in a new Prior Authorization for the Scope.
  81. Put in the Insurance Company Prior Authorization for Out of Network
  82. Waiting.
  83. Received a call from the Hospital GI lab and said that they were reviewing the Hematology notes and will call when they get it all coordinated.
  84. Week later received a call from the Hospital GI lab scheduling saying that they will be following the recommendations of Dr. A......  the GI who was fired.  They had been faxed the new Hematologists name and it is in the Epic medical on line system with her hematological diagnoses.   I explained that we fired the doctor and what I was told. Reading her the notes that Becca's primary care doctor had told me would be necessary.
  85. The GI Nurse Practioner called and they tell me that they need me to get the New Out of their network Hematologist to fax up the cover page, the detailed recommendations, the diagnoses and all her chart notes from Hematology. I asked just from the second or the records from our two prior hemologists.  All of it.
  86. Then she tells me that they will decide at that time whether they will do the scope because she does not have a hematologist in their network.
  87. This Mom has had enough, and cries.
  88. Becca's primary care provider a family friend called tonight and I explained.
  89. Tomorrow we call Hematologists office to get them to fax in the required paperwork.
  90. Then wait.
  91. Becca's Dad's clinic was bought out, on 10-1 we get a new insurance company and start all over with who they see, and learn a new process and hopefully it is better than our managed care insurance company.
  92.  To Be Continued ?????
  93. After 3.5 years of us arguing with Miss Becca to get her to eat despite the pain maybe they will finally get to someone to figure out what to do to help her pain with eating and her esophageal hernia.  

Friday, June 28, 2013

See It, Write It, Remember It. TEXTING TO SUCCESS with FASD

With my kids with organic brain damage from their prenatal exposures along with all the other alphabet soup of diagnoses, I have learned that they learn better by seeing what they need to do. 

Many of our kids can have normal IQ's and can handle more concrete learning information.  Often they do well early in their school years on when the information is presented in a CONCRETE easily understood format.

God gave me the gift of understanding that my children use visual memory much better than any other medium of getting things to stick. They can remember vividly what someone was wearing, what they did, and all sorts of information from an event. But cannot remember some of the simplest other things.

Think in the terms of a camera. They can capture the images they see, but they can't see themselves so they never know what they did.  (Another blog post for another day).  But what that taught me was to help them see just like they now are teaching in autism with picture prompts etc.  I used simple notes, cannot be too complex or they shut down and are overwhelmed.  Short and sweet, concrete and to the point.

For years I have been teaching teachers, principals and anyone who works with my kids if they want them to remember something they need to TALK LESS and use a simple bullet reflection system to help them see and retain the information into their memory.  Talking to my kids the message becomes jumbled and often lost in translation as it processes through their damaged brains.

My house became a series of notes put up as reminders. There were times even though still needed the kids removed them as they didn't want to be treated differently or have their friends see anything that will get them noticed for being a different.



Often kids/adults with FASD have auditory processing disorders. But in our world and society we talk too much. When I talk to my kids with FASD I have to talk simply, with three or four words with a slight pause which allows their brains time to process the information that I give them.  Then double check for understanding.


If I wanted my child to bring me or put something away right I would use a post it note reminder. Go get me french fries from the freezer.  I had to do something as too many times they got to the freezer and brought in corn instead of peas. or whatever and it ended it in my frustration and their feeling bad that they got it wrong.

I know that my adult kids can remember what they receive via text message, what took me so long to get on the text to remember kick?

Becca and Dee have been texting each other room to room. They were texting in the same room the other day. I wondered why?  Becca figured out Dee understood instructions better texted than communicated. It took Becca with her Autism and understanding of not hearing what is being said in a room full of too much noise for her to know what to do to help Dee understand instructions.

I was talking with a friend lately and talking about we talk to much. She has been emailing her daughter with discussions instead of deep conversations and they seemed to make a difference in her understanding and her remembering.

LIGHTBULB moment:  With our teens and young adults we need to use their mediums to help them.

I just tried an experiment. I texted Dee up in her room and asked her if she could please make Mac a bottle.  I received a reply, I am all the way up here!  I texted back that I was writing and I would really appreciate her helping me. Okaaaay.

 Normally anything you tell Dee needs many steps going like this.
1. Ask her to do a simple chore.
2. Wait 3-5 minutes to see if it processes and is understood by asking the question again.
3. Now wait 3-5 minutes to see if she responds.
4. Carefully prompt her again if not moving.
5. Double check for understanding.

To make the said bottle would require me to have 15 to20 minutes of intervention. Not because she is being oppositional like so many would think. It was just because it would take that much intervention and complex processing for her to be able to hear it, transition, and get moving.

The bottle arrived in less than 5 minutes.

Want something done, want them to remember, quit talking so much and put it in writing.

TEXT to SUCCESS.  But first sign up for UNLIMITED TEXTING.

Thursday, May 16, 2013

Upcoming Webinars from the North American Council on Adoptable Children

 
 
I got an email I found on a group for parenting foster and adopted children about some upcoming Webinars that look very interesting and presented by those who walk the walk.

I am posting them as they look amazing. I know of the parent who is doing the Parenting Children who have been prenatally exposed. She is phenomenal and it will be worth the $20.  I will be attending and getting some training hours as they provide a certificate for attending.

http://www.nacac.org/conference/trainingwebinars.html
North American Council on Adoptable Children
Webinars

NACAC has scheduled a series of webinars on a variety of topics. Each session below is taught by experienced individuals who are all adoption professionals and adoptive parents. Each is an acclaimed speaker who has received rave reviews at the NACAC conference and other speaking venues around the U.S. and Canada.

Fees for each webinar are $15 for NACAC members and $20 for non-members. Fees are non-refundable. To learn more about membership, visit http://www.nacac.org/about/membership.html.

Parenting Children Who Have Been Prenatally Exposed ­ by Kari Fletcher ­ Tuesday, May 21 (8 pm eastern, 7 pm central, 5 pm pacific, 6 pm mountain) ­

Understanding The Acting-Out Behavior of Your Adopted Children ­ by Maris Blechner ­ Tuesday, June 18 (8 pm eastern, 7 pm central, 5 pm pacific, 6 pm mountain)

Helping Children Heal from Trauma: What Parents and Caregivers Need to Know ­ by Sue Badeau ­ Thursday, July 18 at (8 pm eastern, 7 pm central, 5 pm pacific, 6 pm mountain) ­

If you cannot attend the session in person, you can still register and receive a recorded version of the session after it's over. Certificates of attendance will be available for those who need proof of training hours.

Click here to register for one or more of the webinars

North American Council on Adoptable Children (NACAC)
970 Raymond Avenue, Suite 106
St. Paul, MN 55114
phone: 651-644-3036
fax: 651-644-9848
e-mail: info@nacac.org

Traveling with the Tiny Titans. Planning and Strategizing for Flying with McKellan and his FAS and Autism

With all the talk of Disney and Disabilities it reminded me that I need to get moving and planning for our adventure to California next Wednesday.  I had procrastinated long enough that I needed to get myself moving and planning.

We have traveled with Becca and I have that down to a science and she is a seasoned traveler.  But we have traveled with McKellan before he was an immobile baby and he was because of his delays easy to manage.  But with him now being a mobile, very independent 3 year old who is very much two this time will be another story.

I asked for help from his Occupational therapist and today his Speech teacher came back with ideas from the team.  There thoughts just confirmed what I was thinking about, but what we realized is that he needs boundaries to stay put. If he has them he can do well.

I forgot that I was going to order an Airplane Toddler Harness that I saw in my parents magazine. Oops!! I told the teacher that I needed it pronto and hoped that Amazon had it so I can get it here FAST!

Mackie is into airplanes after visiting Grandpa at the airplane hanger. He was so excited when we picked Ian up at the airport recently. I decided that he needs some airplane books to go through the process and also to entertain him on the trip.

 I ordered these two. One a doubles as a color book and the other one which talks about the airports.
I need to remember his crayon roll-up to use with his airplane color book. I made this Crayon-Roll Up for Mackie and have posted the instructions for making your own on my Thirteen and Frugal blog.


Stroller and car seat will be flying with. We have to bring HIS car seat. When he goes into unfamiliar settings he will not drink his bottle until he gets accustomed to it. When all else fails, when we are out, we head to the car and give him his bottle.

When things are too much, he settles down when we put him in HIS Red Maclaren stroller with his blanket. Next on the packing list: His noise blocking headphones, his blanket, snacks, drink bottle, chewy tools, IPAD with loaded movies is going to be our lifesaver.


I need all of his sensory tools, like his Benik Brace which provides feedback so he can handle outside the house activities and he doesn't flap and squawk nearly as much. We will put it on right when we get to the airport and for the plane.

Mackie pats on his chest when he gets disregulated and will get excited at the sight of his Benik. It works like magic for him to get regulated and get strong feedback.

Today his Speech Therapist expanded our "How Does Your Engine Run" toddler programming with the addition of Speech Communication and today we introduced it on the Ipad.  I am so excited that the Alexicon AAC  has a page of Sensory Tools and he can identify and ask for what he needs hopefully ending much frustration.

I will be loading it on Ipod Touch that we have bought just for his Communication. He is too proficient and knows how to navigate his Ipad too well to use the same device for both.  I am excited to use it to help him not squeal for what he wants on this trip which will save the other travelers ear drums and my nerves.

Enough planning for today.  Everything is ordered. I have made my list.

Car Seat
Stroller
Airplane Harness
Benik Brace
Blanket
Ipad
Ipod  Touch Communication Device
Snacks
Drink Bottle
Bottles and Formula
Chewy tools
Books and colors

And if all the other things fail to handle his sensory issues.  The NEVER FAIL, just flip him upside down and it resets his mood!

Follow our Traveling with The Tiny Titan Adventures to be Continued.
Part III Continued 

Wednesday, May 15, 2013

Traveling with the Tiny Titan. Heading to Disneyland


Yesterdays headlines from the New York Post on Manhattan Moms paying to cut lines at Disney World  and a followup on the Huffington post this morning had me thinking. They are scamming the system everyone wrote. They are. But the other thought was that someone with a disability actually had a job which is so often very hard to find in the disability world.

What are the statistics?  In 2011, the employment rate for individuals with disabilities was 32.6 percent. Enough said. Actually that was far better than I see from my walk in the special needs world.  

But moving on. We are headed for Disneyland next week. I am now going to be heading to the theme park not only with seasoned park veteran Becca, but the first time taking McKellan to the noisy, crowded, overstimulating Disneyland.  Why would I do it?  Because it is the thing to do for Miss Becca and a chance for Little Guy to see "his" Jake, Mickey and Car-Car.  When we told Mackie we were going to Disney he ran around the house squealing "Jake", "Car-Car", "Ouse" for ten minutes solid before he fell down from moving so fast running in circles. It's normalcy, it is a chance to go to the places of Magic from the characters that have comforted her and him through their tough day to day existences.

We are also headed for the theme parks in Florida when we head out to attend the Noonan Syndrome and Brave Kids Conference on July 31 to August 4. The article got me thinking ahead on planning ahead and also the "perks" or not so perks of doing Disney, Universal, Sea World with my kids.

I had procrastinated on this one, but life day to day is so full of Doctors appointments, therapies and cares and feeding regimes that I must give myself some slack. Or just maybe, I didn't want to think about what it was going to take until I had to.

First planning ahead is paramount. I need to make a list.

I called Doctor Sheirlie's office to get letters of disabilities for both Becca and McKellan to take to get the Prized "Disability Fast Pass".  No I don't need to go rent a wheelchair for Miss Becca to cheat the system.  Becca has hers. McKellan still is in his stroller, but he fatigues and with his sensory overload with the shade down, hopefully will give him a reprieve from too much. I better not forget his blanket and have him wear his Benik brace for sensory input along with his sunglasses and hat to protect his damaged optic nerves. I won't even go for the challenge to keep them on a tiny 3 year old little one with Fetal Alcohol Syndrome, Autism, and a genetic syndrome.

For our sanity and theirs, we need to cut lines or more appropriately ACCOMMODATION. The disability passes are there for a reason and they are not easy to get. It requires a doctors letter. Despite popular opinion we will still be standing in many lines as they have gotten rid of the line jumping in many places. Which for Becca and my kids can be twice as challenging than for others.   My kids both do not do well waiting. But others will say no kid does.  But my kids have challenges. They both have hypotonia. Standing in one place causes Becca's legs and feet to swell from lymphedema which is incredibly painful. Her lungs only function at 48% of normal due to her Noonan syndrome and muscles with low tone. Her strength is that  of a tiny child. Her heart impaired. Too much anything triggers the always present headaches into full fledged Migraines that will put her into the emergency room.  Mr. McKellan with his autism will flap and squawk when overstimmed and tired. I will be not enjoying myself trying to make sure the needs of my children are met and managed to not spoil our trip to the Magic Parks.




We have flown with both before, and Becca's chair. It may have a small perk.  The article talked about  "A trend, also seen at airports where “travelers request the use of complimentary wheelchairs... as a technique of getting pushed to the front of security lines, only to leap up and sprint to their gates once they have clearance.” 

But has anyone tried to go through the TSA with an young autistic person with a tiny service dog and they targeted and pulled her aside even with all the prompting about her disability?  They wouldn't let me be with her, hold her hand and took her tiny dog away, even though they had been handed the letter from the Doctor, had all the dogs travel papers in advance?  She was standing their shaking and I was almost sure that "This Mom's" scene would have possibly been labeled as not quite socially acceptable as I had to lightly raise my voice. "My daughter has Noonan Syndrome, she is autistic and she is scared". Can't I stand NEAR her to help her through your processes.  She can't get off her braces by herself, you are asking her to do things she can't by herself, her hands do not work, she has Post Traumatic Stress Disorder and Austism and does not like to be touched. Do not put your hands by the insides of her legs you are triggering her abuse history".

Fortunately a Woman Supervisor overheard the stupidity the two TSA workers and took over the situation.
I was handed Becca's dog and I stood next to her while she used the wand to scan Becca. No need to take off her braces.  With an apology that she was randomly pulled aside by being lucky enough to just be the next one pulled we were off to the gate. 

We may have gotten to security ahead of the line, but I am sure by the time we went through 30 minutes of Miss Becca being targeted for being a threat to National Security, we were actually behind them reaching the gate and I got to pick up the pieces of a Traumatized, Scared, Anxious and still tearing up Becca.

Arriving at the gate, they had heard about the fiasco of the girl in the little pink wheelchair and her teeny tiiny service dog and the airline had upgraded her seat to First Class and Morgan had her own first class seat of her own.  The tears turned into smiles. There are still good people in the world who get it.

But speaking of getting on the plane ahead of everyone, but getting off is another story. Ask anyone in a wheelchair. For Becca she has her own chair, she can transfer on herself. But we wait until everyone to get off and then wait for her chair to come up from under the plane. If we don't fly with her chair, we have to wait for the airport transfer crew to get her chair to the gate. Half the time, it is not there when we unboard. Several times, despite having it ordered, it does not arrive until we have to call for it. With the tight times of transfers, we have even had to carry Becca through the airport or miss our connecting flight. Which we have done because of no chair met us.

Special needs kids and special diets, I need to bring our own. We need to bring noise blocking headphones and as always they will tell Becca to take them off while the plane takes off and lands.  She is now trained to "SHOW" them the fact it is not plugged in while I explain that she has "autism and hyperacusis" she hears everything really loud.  She can't talk to anyone when she is anxious due to her expressive language disorder.

Traveling with my kids, no such thing as Medical Confidentiality that the regular world enjoys. I have to just keep thinking that I am raising awareness, educating and advocating for those with special needs.

Are you thinking that my kids are lucky yet?

If with all they deal with, they deserve to have something positive.  A good parking place, a cut in line, or being first for once and being "Special".

To Be Continued
PART II  Traveling with the Tiny Titan







I will continue to blog this week about traveling with the Tiny Titan and her little brother and our adventures of being "lucky" to have a wheelchair or disabled guest pass.









  From a quote from the article, *This might lead to growing acceptance of people with disabilities, because, kids, look how lucky people in wheelchairs are!

Tuesday, May 7, 2013

She Seems Normal But Can't Do Normal



For those of us with young adults with FASD and other Neurocognitive Challenges the biggest thing is that people do not understand their hidden brain differences.

My friend's daughter who has Noonan Syndrome is just graduating and we have deep conversations of the transition to adulthood will mean for her and the expectations of society. Talking with a friend last week, she told me that a long time co-worker remarked when meeting her daughter "She seems normal" and my friend added "She can't do normal".  As we talked the it was the perfect example of what is so frustrating for us as parents, that people cannot see our children's challenges and executive function deficits.

It is the challenge that haunts our efforts to try to find them any sort of help. No one understands that no matter how much we try to teach, our kids seldom can manage to do things on their own despite IQ's in the normal range.  They just need to try harder.  We just baby them, we just this or we just that.  We are blamed for our kids brain differences and that we didn't teach them to be independent. We are faulted because we cannot heal our children's prefrontal cortexes.

Do you think our kids like having us try over and over and over again teaching them and badgering them to do something that for so many comes simply?  For mine and most of my friends children/young adults they are people pleasers. They want to please. They would do it if they could. They don't want to be seen as slow or "stupid" as Dee often used to call herself. Our kids are blamed because they can't do it independently and they feel different enough already.

Over the years myself and the other parents I know often talk about the frustrations of our kids not getting it, and doing it for themselves. We have tried over and over and over again to find a way for them "to get it". We have tried every chart, reward system, and any other strategy offered by well meaning providers and ones that our parenting guides say we should use to help our kids become more independent.  But to little avail. The only one who learned anything was Mom who learned that they do not work. 

Often we find ourselves lecturing, badgering our kids out of frustration forgetting ourselves that we are expecting them to do things they can't. Sometimes I wonder who has the brain injury, me or them?
We have to be the prompt to remember the prompt and thus adding more work and frustration to our list of daily duties.  We have to prompt our kids to success and if we forget or are tired or back down, we find that they just don't do it no matter how many times we rehearsed the task.

For Detamara and some of my others, they live their lives one moment at a time. They do not plan ahead very often. If they have a mission they can do it, but to do the Activities of Daily Living they struggle. So that in itself causes even more misunderstanding. It they can do it sometimes, they should be able to do it all the time. It is their choosing to not do it leading to the often diagnosis of Oppositional Defiant Disorder or some other label. It is so misleading that these kids can be so compliant sometimes and not others.

They are propped up the the daily structure of the school calender and their families routine and structure. As they age and they are EXPECTED to do it for themselves they begin to flounder. Take away the structure and they can't do normal.

We have provided what they needed to function and as they reach that magic moment of 18 when society expects them to be able to run their own lives.  As that magic age comes closer the parents begin to panic.  The kids have been taught the concrete rules of adulthood and think they can do them. They do not understand that their concrete thinking and their executive function deficits impact daily life and their futures.

How to we protect them and help them make progress?  Interdependence. Because without it they can't live independently and they need us to help continue to be their EXTERNAL brains, prompting them into their young adult lives.