Saturday, July 26, 2008

You Knew I'd Say It Soon Enough.

My name is Debbie. I am a Mom to a child with autism.

As most of you know, M has autism. He was just given this label earlier this year, though we'd known in our hearts it was coming for some time. A child rarely is 'developmentally delayed, language delayed, and has sensory integration dysfunction' without being on the spectrum.
This conversation recently came up on a support board I am on. The Moms pondered if other Moms were just in denial or what was going on to not make them get the smack in the middle of the forehead that said, 'Duh! Your kid has autism!! Wake up!'
I had a take on it all that seemed to be a bit in the minority. I'd prefer to not think I was in denial, but that I held out hope. I also repeated what medical professionals were spouting off to me after every dreaded visit. Now, I did always keep in mind that those who are given the almighty job duty to be a legal diagnostician WERE NOT those people who worked with my child on a daily basis. No, ladies and well, ladies, therapists and teachers aren't the ones who can tell you your kid has autism or any other technical diagnosis; a neurologist who sees your child for 15 minutes every six months to a year is the one. And thus, you learn to dread those appointments, wondering 'will this be the one?' I remember probably the third or fourth of these dreaded neurology appointments. My other half came with me, though this would be his last. The Dr. asked us one or two questions and then said, "M, where is my nose?" And after 15 seconds when M wouldn't respond (not saying he always will, but he can) the Dr. looked at us and said, 'I'm beginning to think autism.' Well, okay. So the nose thing did him in? Because you've not spent any time getting to know him and that's the thing you're going to base your opinion on? It would still take another year before we'd meet with him again and have the 'talk' within five minutes of getting there. I was alone this time, and felt strangely at ease when hearing the words. I had come to peace that it wouldn't change M or how I felt about him. And in fact, it would open up more services (hopefully) with the school district. And that was that...we walked out; A Mom and her boy who had the A-word.

So here's how this all relates to what I am feeling I do my child a disservice by telling people fairly quickly that M has autism? I've only started this since we moved and it feels right to me, but I question it often. It's pretty clear he's different than other kids, and I'd rather nip it in the bud rather than have people wonder. I also don't want people to think he's rude when he doesn't answer their questions. Truth is, he really can't answer their questions. He can't even answer our questions.
I'm also an open book kind of gal. I have learned in life that it's a lot easier to be truthful and up front about myself than it is to hide things. There are no too-personal questions for me. If you want to know something about autism, please ask. I'm happy to answer the best I can!

Autism has changed my life. Sometimes for the best, sometimes not. (see the subtitle to this blog for the not)
I always had a tender heart and compassion for others who were different from me, but now I see the world in a totally different light. I pause before passing judgments; especially on other children's behavior in public. Let me tell you, I have seen my share of meltdowns in public that have left me sweating and near tears. And all I can hope as I nervously scan the store we are in, or wherever, is that I find one set of eyes to pause on that has kindness in them. That one set of eyes helps me more than one could ever know and gives me the courage to keep going out in the world when it would be way easier to just stay home. So I say this to all of you because you are my friends and I know how kind each of your hearts is...Next time you see a Mom having a hard time with an out of control child, remember that that child may not just be a 'brat' or 'bad,' but might have autism. And then give that Mom an understanding smile or tell her she is doing a good job and know that you have done a very good thing.

Okay, I promise to not always be so freaking serious. Sorry about that :0


Maddy said...

I for one, am only too happy to hold my tongue and my thoughts, although these days I tend not to think those thoughts in the first place.
Best wishes

sarah said...

You really do a great job with two boys. I have often been that mom with her child kicking and screaming and running wild around the store/restaurant/house, and I too appreciate a gentle smile and a slight nod indicating 1. I am not alone 2. I am handling it just fine.
Great seeing you today!

little miss mel said...

What a lovely, lovely boy you have.

I do not know what it's like to be in your shoes, but I'm out here in case you need someone to bounce things off of.

You rock sister!