Friday, October 10, 2008

Why? Because I WANT to. Ok, fine. The long answer:

So while I write the blog for me, in a way, I mainly write it for you, the reader, the parent. This came up yesterday in Jaymes' Augmentative Communication evaluation, and I realized that I'd never really thought about it: Why do I do this? Why do I post all about my family, Jaymes' treatment and troubles, and show videos of him at his worst to a bunch of weirdos on the interwebz? (I say weirdos with the utmost affection, LOL)

Because when Jaymes was diagnosed with Autism, I didn't know what the hell Autism was. Those of you who are not affected by Autism probably have the vague impression of some teenager rocking back and forth sucking his thumb like I did.

The internet didn't help me much. Things like "a mental disorder characterized by an inability to relate to other people and extreme withdrawal." Well hmm. Not very descriptive, is it? Most of what you'll find by Googling "What is Autism" is medical talk that really doesn't make a lot of sense, and most certainly paints a very dark picture of the disorder in general.

Autism is a lifelong developmental disability that prevents individuals from properly understanding what they see, hear, and otherwise sense. This results in severe problems in social relationships, communication and behavior"

Initially, reading these things really scared and depressed me. I began to picture my child as mentally retarded, as stupid, as abnormal. He would never be able to love me, or play, or do anything but stare at the wall and roll around on the floor. It was devastating. My husband was in denial, and I didn't know what to think.

I didn't want to believe that this, what I had read, was our future. So I looked around on Youtube, on bulletin boards. Everywhere. I could not find anything that shows Autistic kids. I wanted to see what they were like, what a tantrum looked like, and to see if this was truly as horrible as the things I had read.

Finally I did find some videos. The kids were beautiful, bright, and different. Not in the way I had expected. They weren't freaks, they weren't somehow deficient. They were like Jaymes- smart, curious, sweet, loving, and happy. They flapped their hands or stared through their fingers at things, but they also did other things. Some spoke, some played with their friends, some swam like fishies. Some read, made art, did their own blogs!

If I had stopped researching at "What is Autism" I don't know what our lives would be like. If I had accepted that Jaymes would forever be silent and never love anything, never communicate, would we have pushed him to this point? Probably not.

Which, in my longwinded way, brings us to my point. I do this blog so that when people google "head banging toddler" or "autism meltdown", they will find my videos and see our experience. They can read my descriptions of Jaymes at his best and at his worst, and know that despite the bad, there is tons of good and inspirational and comical moments too.

Autism isn't a death sentence. It's not necessarily the end of the world. It doesn't mean your child will never speak, never love, never play. It just means you need to help them learn to do these things. I've long struggled with my problem of underestimating Jaymes. Often I assume he can't do something, or doesn't understand something, without giving him the chance. It's a horrible habit that I work on daily, and I'm sure others of you do the same thing at times. It's hard to keep the label from devouring the individual, hard to see Jaymes as the sweet almost 5 year old rather than an Autistic toddler. Someone commented in an earlier post about why I still called Jaymes a toddler. I guess in my mind, he's never really grown up like other kids (obviously) and in size he is very much like a 2 year old. Cognitively, I-think- he's reached the 2-3 year mark, which is wonderful. My calling him a toddler is probably because of his delays, which is terrible and totally unintentional. But then again, in my mind, he'll always be my little man, my little toddler buddy. Just like Sierra will forever be my baby girl.

I need to work on that. Need to reword my title banner thingy too. But I really like the word toddler. I know, I'm a dork.

But anyway... My hope is that at some point, someone as desperate as I was comes across this blog and gets the REAL picture of Autism. Not the dark, scientific death sentence that google will hand you.

1 comment:

Anonymous said...

Very well written. I really enjoy reading your blog. Growing up I wanted to get involved in theraputic riding, but I didn't keep my grades high enough in high school and didn't have the GPA to get into the school.

I currently teach riding lessons and a few months back a family asked me about riding lessons for their daughter and their son, who has high funtioning Asbergers. I was nervous about how he might react to the horses, so took sometime before scheduling his lesson to speak with one of the counselors that work with me, who has extensive experience with children and adults who have Asbergers and Autism. She gave me some great ideas to use during his riding lesson to keep him focused and when he came out for his lesson, we used some of them and had a really fun lesson. I knew before he came for his lesson that he was sensitive to touch, so I had him help brush the horse and run his hands down Prime's sides, play with his mane, and run his hands over all of the tack (Something the counselor suggested). He was also very quiet, but very smart and just a really happy kid. The family was great to deal with and I really liked both children. Unfortunately, they were one of the families that stopped lessons when my grandmother tried to destroy my riding program.