Angelman Syndrome, Autism and Angst

Having a loved one with autism is tough.

With the numbers being so high of those diagnosed it is hard to even keep up with or comprehend how many people live with autism.

BUT AT LEAST THOSE OF US IN THE AUTISM COMMUNITY CAN FIND SUPPORT.

Case in point: I can bring my son Luke to a Christian counseling office where a psychiatrist prescribes something to help ease his aggression and anxiety. Autism Home Support Services sends therapists to our home to work with Luke and a significant amount is covered by insurance due to the Illinois law saying insurance HAS TO cover it. (For most insurance types anyway.) And Luke goes to Giant Steps, a school for kids and adults with…..you guessed it AUTISM.

But what if your child has another special need? One that isn’t autism.  What happened last week when I went with one of my BFF’s to bring her son, who has Angelman Syndrome, to a doctor’s appointment made my blood boil. This doctor was  just clueless when it comes to Angelman Syndrome. And the hoops this family needs to go through to get a prescription are insane. And school options? Not so much.

I don’t have the answers but I do know a couple things. I need to be thankful for the support our family has. But I can’t stop there. I need and want to support my friend and her family. And as a community we need to get in there and help.

I only wish I knew how to solve this. Or at the very least that I had a doctor friend who understands Angelman Syndrome and will get in the rink and do some battle for this family and others who need it.

–Deborah Abbs

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About morethanwords1

I'm a mom of two very different boys. One has no probelm talking, loves and is gifted at reading and writing and the other has a bright smile, amazing laugh but can barely talk.
This entry was posted in Venting in Progress.... and tagged , , , . Bookmark the permalink.

2 Responses to Angelman Syndrome, Autism and Angst

  1. patricia says:

    Great blog. I too have a child not diagnosed with autism and it is hard to get services for him. I don’t know what’s out there that can help us but I am thankful for what we do have. School is another arena where we need more services for our kids that don’t have downs or autism… praying for more answers.

    • Patti, I am so sorry! Had someone missed your comment until now. Has your child (not diagnosed with autism) gotten any good supports this past year in school? I sure hope so!

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