A Mommy Blog About Raising Men, Not Boys.
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Thursday, March 05, 2015

The Slings and Arrows of Outrageous Fortune

I sit on my porch any morning I can and I drink coffee & swing with Charlie while we wait for the bus. I listen to the birds, watch the squirrels scamper and occasionally laugh as a coyote or two freaks out that there is a human afoot.

I've been sitting out there pondering something the past few days. This post is going to just be me musing about this very thing.

A lady on a local listserv I'm on who has autistic children of varying degrees of disability recently said to her sister she should get her own child screened. The lady on my listserv recognized behaviors, (unfortunately when the Spectrum is part of your everyday many behaviors become NEON out in the world) and so because she cares about her sister she mentioned it. Her sister went ballistic. Told her never to come near her family again. Said other horrible things.

Why? Fear.

Fear can destroy you. Fear can destroy friendships and loves. Fear drives us in places we wouldn't otherwise go and puts words in your mouth that you would never otherwise say. I remember very well a very close friend's husband mentioning Miles displaying a behavior their own autistic child had shown at the same age. The person wasn't saying HEY YOUR KIDS SEEMS AUTISTIC. They simply said "Oh our kid used to do that all the time." I went ice cold at those words. I wanted to SCREAM at them, "MY KID IS NOT YOUR KID SHUT UP OMG SHUT UP SHUT UP."

I never asked them if they were subtly trying to show me something they saw. They might not even remember the incident. But what I know now is - they saw.

Autism is a disease. It's a birth defect. Why it's caused well, that's up for debate. I personally think it's genetic possibly aggravated by environmental factors that we don't understand. But I see it in my own family back generations. NOW I see it. I see my great Uncle Howard rocking and saying "EEEE" loudly. We called him "retarded" because it wasn't a slur then, and the story was he didn't get enough oxygen during birth, a problem had happened. I remember him well, and I see autism looking back at him.

As a disease, we should want to deal with it. We all know "early intervention is the key" for things like cancer. Guess what? It IS with Autism too. I was really lucky, in that we got the twins into an actual Autism Pre-K in our school system. But I wish we had a diagnosis at 2, 2 more years in working on their development and I might not still be trying to potty train one boy with the other in diapers full time. Two more years of working on their development and I might not have had to deal with those two years of very large babies which is what they were before they started school.

I know it's scary, but here's the thing, everyone on the Spectrum isn't like my sons. There are folks on my listserv with kids going to college, getting jobs, having relationships - these kids aren't going to live with their parents for the rest of their life. They just needed some EXTRA and DIFFERENT help from your so called normal kids. People on the list serv are on the Spectrum themselves. Communicating and holding down jobs and lives.

If you are worried, you should talk to your doctor. If someone approaches you, they aren't cursing you, they aren't wishing you ill. They're trying to give you what some of us didn't have, early intervention. Help.

I've seen people say "NO ONE IS TESTING MY KID FOR AUTISM MY KID DOESN'T HAVE IT NO WAY NO SPECIAL ED FOR MY KID BY GOD."

That's your ego. I can tell you, as someone whose home the proverbial short bus arrives at four times a day, Special Ed isn't the end of your life. You might cry a few times. More than a few. But the bottom line is that it isn't about YOU. It's about what your child needs. Don't be that person. Don't let your ego drive you, and your fear drive you, into making the wrong decisions for your child.

I sit on my porch and drink my coffee from a mug with a note saying Happy Wednesday (it was yesterday give me a break) and I think about these sisters, and the fear that drives wedges between people.

Fear tells us that someone is going to take something away from us. But the truth is, nothing is ever really taken away from us if we love it, it may change or evolve - but if we love something or someone it can never be taken away. We can't let fear drive our decision making.

Get your kid tested if you are worried. Get your kid tested if someone mentions it. Read about Autism. It's ok to be afraid. It's not ok TO NOT put your child first.

2 comments:

Dave St. said...

Great piece. Good friends of mine have a son who screams out Asperger's (at least when that was a diagnosis). Numerous friends and relatives have raised the issue of testing, but the parental response has always been "we don't him being labeled." I don't get it. Nobody likes being labeled, but if a label comes with an IEP, targeted therapy, support groups, a community . . . then labeling doesn't seem quite so bad. So far the kid's been OK because it's early elementary school, he's smart and verbal, and oddity isn't such a big deal. He's headed rapidly for middle school, though, where all the social stuff will become a much bigger deal.

Tracy Roper said...

Two thumbs way up all the way from British Columbia Canada!