What Day Is It?

Well, according to the 4000 (almost) posts I have seen on FB today, and in the newspaper and on Yahoo and the TV, I do believe it is National Autism Day and April is National Autism Month. If I sound a little peevish, I guess it is because I am.

Why? I should be overjoyed at the attention autism is getting, shouldn't I? Yes, I should.

Sometimes, as someone who says and writes and hears that word nearly every day for many years, I think I don't want to hear it anymore. I think it is sort of like the Breast Cancer Awareness themes; sometimes I believe we see and hear it so much that we become immune to it. It doesn't even enter our consciousness any longer. When all the NFL teams are wearing pink hats and cleats and gloves, I notice it one game and then I am only interested in the game, not what the pink symbolizes. (please don't send me nasty comments...I know too many people who have died of breast cancer, including 2 of my very best and longest friends).

The incidence of autism has risen dramatically, almost supernaturally. I was shocked when it became 1 in every 88 children was diagnosed with autism, and now it has risen to 1 in every 50 children. The word 'autism' covers an unbelievably huge spectrum of characteristics. It is the umbrella term for many conditions. While many are similar, there is no one set of behaviors or descriptions. No one-size-fits-all kind of diagnosis.

The fact that the children and adults are so diverse makes it difficult for someone not familiar with autism, to understand. When Kalisha was little, I knew it was autism, but I had difficulty getting a diagnosis. At that time, if you said autism, people pictured a child spinning in circles or banging their head on the floor. She was 9 years old before I finally had a diagnosis and it was only 2 years ago, when she was 27, that she was diagnosed with Asperger's. You never think of Asperger's and mental retardation being together, because they seem so opposite of each other.

You are probably asking why I write 2 blogs about Kalisha if I am tired of the word autism. That's a good question. I write because I know there a lot of Kalishas out there and a lot of parents who might benefit from my successes and my mistakes. I want them to be able to face the realities with faith and a sense of humor, when possible.

I get upset with people like Jenny McCarthy who wrote a book about curing her son's autism. Really? Really? Cured him, huh? Autism isn't a disease to be cured.

There are also MANY companies who are offering all kinds of false hope to parents. There are MANY that are legitimate, but the worms come out of the woodwork when they see desperate parents who will try anything to help their child. Just beware.

I am happy for the efforts of people who are trying to have legislation passed so insurance companies will be required to cover the costs of autism. We were fortunate to never have had a problem with insurance. Kalisha received therapies of all kinds: speech therapy, physical therapy, occupational therapy. But none of them were because she was autistic (because I couldn't get a diagnosis, remember?) they were because she was mildly mentally retarded and developmentally delayed. That was covered by her father's insurance. It took 8 years to get on a waiver and she is still waiting to be on an autism waiver.

I have thought about moving from Indiana, but unfortunately, she would lose all of her waiver benefits; they stay in the state. So-o-o you really want to be aware of a state's status in dealing with adult special needs before you pack up and move. I am not a politician and I certainly do not know how it would be accomplished, but it would be wonderful if the waiver rights were universal and transferred from state to state. Think of the problems for the families who must relocate for employment and then lose all of the benefits.

Okay, I will step down off my soapbox now. I really don't have any answers, I only know that sometimes I think if I hear the A word one more time in a day, I will scream. I did ask Kalisha if she would like to stand on our front lawn and hold a sign stating this was Autism Awareness Day. You can probably imagine how much fun she thought that would be..she declined the offer, but laughed and said it would be a good idea. (For someone else, I guess.LOL)