Thursday, April 26, 2007

And now...heeerrrrrrrrreeeeeee's Autism (Part one)

So, in the last week, I have heard the term “dual diagnosis” about a million times. I guess the dual diagnosis of Down syndrome and Vaters Association just wasn’t enough – her esophagus has been behaving much too well to get too much attention anymore.

Although, I’m not entirely sure of that either, as her Pediatrician suspects there may be a hernia on her fundo incision, and we have to do an upper GI to take a look at that. And she was not happy with Paige’s feet – her right foot turns in so much that it is badly malformed now. We have had very little success with arch supports and braces, but we will try again, and hope it doesn’t make her hips any worse.

I can’t say that I’m surprised that Paige was diagnosed as autistic, although I guess I wanted her to take one look at her and say, “Oh my goodness, NO WAY is she autistic.” Instead, she tried gently to tell me that, although some children with T21 have “autistic tendencies,” she would consider Paige to be genuinely autistic.

Like I’ve said to some people I’ve spoken to about this, leave it to Paige to do it up right if she’s gonna do it!

Really, we should have caught this long ago. When she was 3-4 years old, there were so many signs – and this is the age when it begins to appear for kids, especially those who have T21 as well. We spent the better part of our life going to see geneticists because everyone suspected there was “something more” going on with Paige.

But, test after test, family tree after family tree drawn on a paper, lol, we found only slight indications of what could be different.

At the time, Paige was very sick with her gallbladder, although it had not yet been diagnosed. So, many of the speculations took a back seat to getting her well and keeping her that way.

And, we decided to live our life instead of analyze it. Paige was, and still is, Paige. Our quest to find something genetic was more important for future generations than it was for us…unless something was found that we could fix, we really didn’t need to know. And we all know that genes are genes – there’s not much changing them.

Perhaps its better that we have just found out at 10 years old. Maybe it would have been too overwhelming for us 6 years ago. I remember thanking God for giving me Down syndrome instead of autism, because I “couldn’t handle” autism.

I guess He showed me!!!

And it’s kind of neat the way Down syndrome and autism sort of cancel each other out in some ways. Paige is still a very lovey, huggy little girl – probably a result of that extra chromosome. She has a sweet gentle personality, and has never had a melt down or a temper tantrum. Wherever that comes from, I’ll take it!

At any rate, we do not want to spend our lives analyzing her every move, and trying to attribute it to this or that – she is as she should be – wonderfully, gloriously made by God, just as He wanted her to be made.

I wish I could share the feeling of peace that I have whenever Paige is near me…I feel invincible, like nothing can hurt me or stop me or bother me. She has empowered me so much and I feel so lucky to have her.

I have met many, many wonderful people because of the little extra chromosome she has. I have been welcomed into a wonderful family that fully understands the joy of her. And, for a moment, I was a little sad that I might not be a part of this community as much anymore – after all, she is now different even from those so much like her.

But, I know that is silly – the bonds I have made will not change. The people who love her will not see her differently because she has another word on a medical file somewhere.

And…who knows…maybe we will meet even more people along the way whose paths are taking the same twists and turns we are.

It’s a glorious life.

1 comment:

djmmom said...

Your insights are beautiful. Paige is lucky to have such an amazing mother and family. One thing that you wrote really got me -- the feeling of complete peace when you are with her. That is exactly how I felt with Mikey. It is the most amazing feeling in the world -- aren't we the lucky ones?

Danielle T21online