Friday, January 6, 2017

Wake Up Adoption Community and Start Asking How Block Granting Medicaid Would Affect our Adoptive Familes

When we adopted our children with Special needs from the foster care system. They came with a promise of Medicaid to defray the catastrophic costs of children with special needs, mental health challenges. It has been in important life-line to help our children.

Our children were lucky to be able to be put on our private health care insurance. Before the ACA we had mental health caps of $10,000 per year for my adopted children. I paid privately for most of their care as both insurance and Medicaid would not cover it.  But without the ACA will we go back to the days of limited coverage, lifetime limits and I know of parents whose kids maxed out their health insurance policies for their medically complex special needs kiddos leaving no coverage for their parents and siblings when they maxed out the $1,000,000 lifetime cap for the family.  Many workers back then told families to not put them on their private insurance.  Things were complex.

But with the Repeal of the ACA many questions are being asked? Will they still get coverage after 18 and even more troubling, for those who have adult disabled adopted children they are in jeopardy of being able to stay on their parents plans. What will happen to my children with preexisting conditions if I have to switch jobs? Will they be uninsurable?

We are hearing much about talk about Block Granting Medicaid. Will we lose our entitlement for their health, mental health and dental care if they give the block of money to the states and they change the rules?

What will that mean for the hundreds of thousands of families who took on children from the foster care system with an entitlement to Medicaid and its protections?  What will it mean for the thousands of children currently in the foster care system who are awaiting homes?  According to NACAC over 50,000 children found homes each year and with of Federal Supports of Medicaid and Adoption Assistance helping defray the complex costs of parenting these at risk and vulnerable children.

We were made a promise of Medicaid to help pay for the many therapies, services and equipment that this vulnerable population needs.  Would the states could be allowed to no longer have to provide EPDST (Early Periodic Screening, Diagnostic, and Treatment) under which children enrolled in Medicaid receive both regular check-up and coverage for all medically necessary treatments necessary that they check-up finds no longer be provided and the ability to appeal denied services?

The Federal Government moved these kids into families and now they want to change our safety net?  They made us a promise and they need to think about how it may affect the promises they made to tens of thousands of families who adopted some of America's neediest children.

When is the adoption and foster care communities going to wake up to the fact that our safety net is in jeopardy?  For the families with private adoptions or overseas adoption what will it mean for special needs waivers as they are optional?  What will it mean as they give the states only so much money to service the Medicaid Population will the entitlement that was promised us until we raised these children be honored?

We need to wake up that they are proposing to Block Grant Medicaid and that will give the states authority to decide what services, what money, what they provide this vulnerable population.

What will it mean for Mackie?  He has FAS and they say it will cost over $2 million dollars in his lifetime for care and services.  Will he get his wheelchair next time which they already denied even under the current system?  Will he be able to get his braces or his therapy services? Will they cover his elemental formula at over $75 a day?


 What will it mean for his future?

How many adoptive children who need specialized mental health services due to their traumatic and abusive histories will struggle with getting the mental health and services they need from Medicaid? Will the important waivers still be there?  My Mackie's health  insurance has saved the taxpayers over $60,000 to $80,000 annually in covered services and while our promised Medicaid back up denied most things and to get his formula covered I had to file and appeal for an administrative hearing.
With a block grant, we could lose the right to appeal!

The tragedy of Custody Relinquishment to get mental health services which already had been a problem of the past, is it due to repeated? Insurances still have limits on hospitalizations and ours are only 30 days. Children with severe mental health needs are still not adequately served by insurance companies in many states.  Often times the child after an out of home placement of 30 days can be covered under Medicaid as a family of one, and parents income does not count.  If block grants come in all bets are off as states can make their own rules and cover who they want.  Will our adoptive kids with PTSD, mental health and prenatal exposure challenges have to find themselves in the justice system to get needed help as they begin to RATION federal Medicaid dollars?

We need to speak up and reach out to our legislators and ask these hard questions!

Wake up Adoption Community and learn about what Block Granting Medicaid may mean for the safety net services and make sure they consider our kids needs during their discussions.

Anny

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!


Anny

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.

Anny



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.

Anny

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.