I Wish I was in Italy*

I feel like Fragile X has peeled off my rose colored glasses on the world.  I long for the innocence I once had  where I believed all children developed normally.  You don't think about it much when you have children, really.  Kids just learn, they are naturally curious and beautiful little sponges that soak up every little thing they hear and see.  They want to learn.  Crave that input for their tiny little minds.

I wish I could just sit back and enjoy it again.  I watch Emma play and wonder when she doesn't touch a certain toy if it is because she doesn't like it or because of the texture.  I watch her put a piece of banana in her mouth and take it back out immediately after making a face and wonder if it is sensory related or she just doesn't like the taste.  I watch her get frustrated when she wants something that she could climb and get off the couch - but she doesn't even try to climb; she merely gets frustrated and begins to cry.  I remember Ayden doing the same thing and I wonder if her spacial relations are also affected.  I love seeing the smile on her face as I count to three and she throws herself backwards to hang upside-down in my arms, but I can't escape the fact that she does it when she is upset and overstimulated -- that it appears she is craving vestibular input.

It isn't just my kids anymore.  I'm the one that friends ask about their own kids.  "Should we be worried?"  I don't think people really want to hear my answer -- they want me to tell them their child is fine.  That the delays Ayden has aren't anything they need to worry about.  I know because my answer is always the same, as is their response to it.  If you are wondering whether to worry, you should call Early Intervention for an evaluation.    I know other special needs parents will not be surprised by what comes next.  A dismissal of my recommendation.  A look of pity.  A courteous smile.  I never push, it isn't my place after all.   If there is one thing I've learned it is that a parent has to be ready to face the possibility of a problem before they will take action.

I do not enjoy being that friend.  I don't want to be the person who looks at children playing and sees possible delays. I don't want any of it.  I want the sweet innocence of a first time mom back.  I want to spin with my kids until we are so dizzy we fall to the ground giggling.  I want to run barefoot in the grass.  I want to play in the rain until all of use are covered in mud.  I want to go to the movies, to a baseball game, to the circus.  I want to go to a birthday party and not worry about my child screaming when the other kids sing "Happy Birthday".  I want to do all that without preparing, without having to wonder how long we will make it before we will inevitably have to leave ahead of schedule, without having to ignore rude stares, strange looks.

But then....

I remember that I don't need any of that.

Because I have him.

And them.

And them.

I really couldn't have imagined or asked for more, because Holland is pretty amazing* and I wouldn't leave for anything.

*The title of this post and last sentence are in reference to one of my favorite pieces of writing titled "Welcome to Holland" by Emily Kingsley.  You can read it by clicking HERE.

Read More...

Autism Insurance Coverage at Michigan State

On March 29th, 2012 three public acts were passed (Public Act 99, 100, & 101) affecting insurance coverage of autism in Michigan. These three acts established a mandate for insurance companies to provide insurance coverage for children with a medical diagnosis on the Autism Spectrum Disorder (Asperger, PDD-NOS, or Autism). It established a tiered system that covered autism diagnosis, pharmaceuticals, psychiatric, psychological, and therapeutic services (speech, occupational, applied behavior analysis, physical therapies; and social workers).

· Children up to 6 years of age are eligible for up to $50,000.00 annually. 

· Children 7 through 12 years are eligible for up to $40,000 annually 

· Children 13 through 18 years are eligible for up to $30,000 annually.

These laws reflect an obvious consensus in Michigan that children on the Spectrum are deserving of the treatment afforded to other medical conditions. However these laws are not applicable to companies who are “self-insured” because companies that are self-insured are governed by federal laws. Knowing this, one of the three acts established a $15 million dollar insurance fund to reimburse self-funded insurance companies and encourage them to provide autism coverage.

Michigan State University is a self-insured company and thus is not legally required under any present laws to provide Autism insurance coverage. MSU’s current insurance providers presently treat Autism as an exclusionary factor for any therapeutic treatment and will deny any requests for therapeutic services if Autism is provided as a diagnostic reason.**

Let me say that again in case you missed it.  MSU's current insurance EXCLUDES any treatment for therapeutic services (speech therapy, occupational therapy, physical therapy etc) if Autism or any other developmental disability (including Fragile X) is listed as a reason for service.  

For us, as a family insured by Michigan State (where Mr Awesome is employeed) this means that Ayden receives all his services through our public school.  Out of pocket costs for a one hour session of his speech therapy run about $400.  At Ayden's current level of speech, he is recommended to receive 2 hours per week of speech therapy in addition to what he receives at school.  For those of you bad at math...that would mean $41,600 in JUST speech therapy per year.  That number doesn't even being to account for the occupational therapy he also needs. 

Over on the right hand side of this blog (and listed at the bottom of this post) there is a link for a petition to help promote receiving this coverage in our health insurance plans.  You do not need to be affiliated with MSU to sign the petition -- your signature just means you support adding this type of coverage for employees and families at the university that could benefit from this coverage.  Please take a minute to read over this petition and sign if you feel so obliged.  

**All wording before the double asterisk was taken from the petition directly.

Sign the petition for Autism Insurance Coverage at MSU

Read More...