Sunday, April 1, 2012

April Is Autism Awarness Month

Light it up blue April 2

Today is April 1st and while we all try and think of jokes to play and pranks fly around please remember this: April is also Autism Awareness month. The Centers for Disease Control and Prevention (CDC) updated its estimate of autism prevalence in the United States to 1 in 88 children (1 in 54 boys and 1 in 252 girls). By comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, MDS  combined.  My son is one of these children. At age 6 he was diagnosed with PDD/NOD ( pervasive developmental disorder-not otherwise specified) as well as ADHD and bipolar disorder. A lot of people wonder what it means to be on the Autistic spectrum. Autism Speaks defines it best: " Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.

In our case it means managing a child who looks well on the outside, but deals with all kinds of hidden limits. He is loving, caring and full of life. He also is impulsive, easy to anger, has a hard time maintaing friendships, and at some times can distort reality. Even though he is in a mainstream classroom he is taken out up to three hours a day to help him learn at his own rate. In the third grade he is just reading on a first grade level. But if you tell him things verbally he is a little sponge that can knock your socks off with knowledge.  If he finds something he likes watch out. You will know more about it than you ever wanted to know.

It means at times seeing him withdraw from family and friends and retreat to his own world. Often times he deals with over stimulation this way. You will hear him talking to himself in his room, making sense of his day by playing it over word by word to himself.

It means trips to the therapist, trips to the social worker, and large medicine co-pays. It means constant watching that he won't wonder off and follow an older kid into someone unknown danger. He loves older kids and attention, a recipe for disaster sometimes. It means dealing with state aide, and fighting for programs.

It also means watching him with pride when he achieves. Seeing him love and care for his cow. A 4H project and his source of comfort. It's watching him find joy in things that I forget to see. That other nine year old boys might not. Such as a flower petal floating down the stream. 

It means helping his older brother understand the outbursts,  and ignoring the people who look funny at his brother in the store when a nine year old wants an Elmo video. (When a few aisles over the same nine year old was begging for a BB gun.) It means stress, and joy and limits and constant surprises. It means worrying about the future. And celebrating the today. 

I wouldn't change it for the world. I love him just the way he is. 

Try and educate yourself on Autism (and mental health issues in general.) Pay a little more attention and not be so quick to judge parents when you don't know the situation. I'm sorry when my son has an outburst in a restaurant or store. I really am. I try to predict them and head them off, but sometimes you can't. A little patience goes a long way when you see a mom having a frustrating day. You never know what people are dealing with. 

I have met some awesome friends on this on this journey. Kindred spirits who have help me seen the brightness the future can hold. And I want to thank them all. My son is special, I love him just the way he is. 

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