Tuesday, April 2, 2013

Moving from awareness to action on World Autism Day

Today is World Autism Day. People all over are wearing blue, have switched out their porch lights to blue bulbs all the bring to awareness of Autism which affects 1 in 88 children in the US. Those numbers are staggering and those children will grow up. Their impact on society is felt in more ways then you can imagine.

For some of these children, they will never leave home, their parents will be their caregivers forever. There's no college, jobs and grandchildren in their future. For others they may move out only to be placed in group homes hoping to find a place in this world. For others they will go to college, or start working once school services end. They may be successful  they may struggle constantly to stay employed. The one thing they all have in common - an Autism diagnosis. Its a bell curve and everyone sits in a different spot. But why aren't there options for many of these children when they age?

Everywhere you look today you will see early intervention, better diagnosis, services that should be provided  the ABC word salad of IEP, ABA, FAPE, OT, SST etc. parents with children on the spectrum know these terms. We also know how hard it is for some services. But what scares me everyday is how services dwindle as your child ages.  Where are these options?

I still remember sitting in the doctor's office when C1 was 11. we were discussing the likelihood she would transition into a group home whens he finished high school. She was 11. If you have a child younger than that can you imagine having that conversation? If you have an older child have you had that conversation? My head was swimming that day. Her forward progress and years of early intervention had come to a grinding halt. How do you prepare? what do you do? even worse who do you reach out to when you are referred to a support group and your child is the oldest by 5 years?

C1 is 15 now. The conversations with doctors are different now.

C1 at the computer
C1 last summer

I never gave up and in many way invented my own ways of helping her. Necessity is the mother of invention afterall. I am still hyper aware of the complete lack of services that exist for people her age, How a typical sexual education conversation is never going to be easy, no matter how many times i've had this conversation with her. How even though she is considered high-functioning and will most likely attend a local college, where's the job training for a girl who bristle when anyone including her own mother touches her?

We need to move from awareness to action. because these children grow up. The adults on the spectrum even those diagnosed as adults have grown up without a net. The parents of the younger need to talk to the older, learn from those who walked this path already. I spend more time searching out diagnosed adults than a little bit, I need their guidance, we all need your guidance. We can't do this alone and we are not alone in this fight. Light it up blue and take action.

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