Monday, October 18, 2010

the closest thing I have seen that resembles his life...minus the cows

A dear friend of my husbands recently put a bug in our ears about the Temple Grandin movie

I recall watching 20/20, or 60 minutes in the 1980's and Temple Grandin was being interveiwed, I was probably 14 or so, and the only thing I recall is her explaining how she felt better in the cattle holding device. I recall her awkward speech, and volume...and recall thinking how awful. The only other exposure I had to Autism at that time was an article I had seen in a Life magazine, that a relative had collected. It was from 1965, and it frightened me.

When SR was born, I noted he was not typical of normal babies, he startled easily, he cried often, he liked spinning fans, and watching the mechanics of his swings...some of it is documented here....and some things have improved, others have not. I read, and read, and pondered, and read, and thought. SR never fit the criteria that is asked on paper, there always seemed to be answer that included "well it depends". He spoke early, nothing highly reciprical, mostly to communicate his interests or needs, he could identify expressions on faces, he read early, he could reason through some things well above his age.

This week, the words will appear on paper, loosely handed to me. My son will have some sort of autism spectrum disorder. None of the disorders are the same, each child different. There are people that long for these children to get this label, so they can start fixing them. The problem is they are all different, and there is no cure.

It is going to be a long week, and as much as I love my son, and his eccentricities. There are moments I want a wand, or to wake from this dream. Not that autism is a death sentence, it is simply that when you wait for 10 or so years to get pregnant, your goal is not to have an autistic child. That is me being honest. The past 8 years have been hard, and I see no letting up, or break. By the looks of the paperwork, including legal school paperwork, Dr.s paperwork, the myriad of testing forms that have been filled out, the PTO committees, the Tri-care jumping through hoops health insurance paperwork, the exhausting effort of advocating. All of it frustrates me to no end. It takes time.

I just want him to be fullfilled and happy.....


Anonymous said...

Have you read Temple Grandin? She is a wonderful writer...and successful. It may have been a long road for her, but have faith that now, some things ARE easily recognized even if there is no cure and it bodes well for bright children like your son!

Guard Wife said...

You know I feel you on this from the tips of my hair to the tips of my toes.

Very, very much do.

Bou said...

I just... get frustrated that they want to fix him. He is HIM. He is wonderful who HE IS. He is going to do great things, despite those who want him to change. The only thing he needs, in my mind, is an ability to cope and that's going to come. That's going to come with maturity and life experience and its going to come because you are you and your husband is your husband and you are a family that will help guide him.

Every child needs guidance. Some just need... a bit more than others.

I don't want anyone to fix my kid. My kid has allowed me to see color in a black and white world. I have cried myself to sleep more times than I can count, out of worry and frustration over what will be. But he was put here for a reason. He was put here for a reason, and as a side effect, he has changed how I look at life.

He has been a gift... ALL of him, even the parts that people 'want to fix'. I'd not change my boy... and it took me awhile to get here. But I'm here.

spottylover said...

I feel your pain. There are good days, there are bad. Lately we have more bad than good. I know it's a long road ahead. Good luck on your journey.