From: Happy Aspies
This morning Wolfie woke at the crack of dawn to the sound of thunder. He doesn’t like thunder. We got out of bed and found his ipod and he listened to a Judy Blume book while I exercised. Even though it was early, it was nice to be awake and moving. I have been neglecting my exercise over the last several weeks. What can I say? It’s summer and the routine has kind of gone out the window.
Over the last week the anxiety in our house has been at a high level with school looming. Wolfie is excited, but not really, if that makes sense. There is so much to be said about back to school, but that is for another story.
After my workout I was reminded that today was the day he would be going back to school shopping with Grandma. He has been looking forward to this for a week. After calling to talk with Grandma about the plan and having some blueberry pancakes, he went up to change. He told me he was going to wear something fancy.
He is enjoying dressing up very much, which I get an enormous kick out of. I try not to encourage it because all of his nice things are getting ruined, but I have a hard time denying him. His face just lights up when he is in his fancy tuxedo pants, his button down shirt, and his zip tie. He radiates happiness and confidence when he is dressed this way.
Hammy and I did some “nature” while Wolfie was gone. This consists mainly of walking through the back yard, picking wild strawberries and trying to catch flying bugs. I love my time with him and I felt a pang of sadness today knowing that he would be starting kindergarten next week. Where has the time gone?
Wolfie came home very proud, with an armload of packages, and announced he had a surprise for me. He couldn’t have smiled bigger if he tried. I agreed to wait for him downstairs while he went upstairs with Grandma to change into his surprise.
I decided to check the mail while he was preparing. When I saw that there was something from Anthem Blue Cross, my heart skipped a beat. We had just applied for health coverage and I knew this would be the letter announcing our coverage. I’m not sure why I was nervous. Probably because my husband’s Cobra plan expired the first of the month and if we didn’t get this coverage I knew it would not be good.
I opened it and saw that Hammy was accepted. Eliot is accepted. I am accepted. Wolfie is denied.
The reason was “confidential health information from phone interview on aug. 6th and claims history.”
Wolfie has never been medicated nor has he ever been sick with anything that required extended care or medication. I was completely dumbfounded. I still am. I feel like I’ve been punched in the stomach.
Wolfie has Asperger’s Syndrome. He has this diagnosis not for medical purposes, but because the school demanded a diagnosis before they would provide him with an IEP and the services that he needs. Last year we had to choose between protecting him medically and advocating for him educationally. The crappy part is that I didn’t know I was making that choice. I really thought, stupidly, that our choice not to medicate him and pay for most of his therapy out of pocket would protect us from this discrimination with the health insurance companies. I thought they looked at each individual on a case by case basis. Again, stupid.
I could go on and on about why this is not right. I could list all the reasons why it isn’t fair. I could spend hours talking about how even though he has the medical diagnosis and the IEP, society is still failing him. He still doesn’t fit in and his school experience is not up to par. And now, as the extra added bonus he is being denied health coverage.
I know that this is but one bump on the road called raising kids, and I know that somehow this will work out. It feels good to know that it will work out. Even if I don’t have the slightest idea how.
I look at him now, as he is putting on his surprise again (it is a suit) to show his Nonnie and Grandad, and I am so proud. I am proud of him because I think he is brave to go out into the world everyday, even though it is hard, and smile and make connections with people he meets along the way. And I am proud that he has inspired me and many others to understand him.
But mostly I am proud to be his Mom.