Autism Watch: 2007

Archive for January 2011

My son’s got autism. He is extremely smart, is verbal and can speak clearly, and is in a regular education class, but he also can’t tolerate certain textures in his foods, doesn’t like eye contact, flaps his fingers, can’t deal with loud sounds or sudden changes in his schedule, lacks social skills, has personal space issues and a strong need for sameness and repetition, as well as difficulty monitoring his moods and anger, can’t stand tags in his clothes or seams in his socks, has to have everything a certain way or he could flip out, and sensory issues ebb and flow. Yet, because he can speak and is so smart, the autism isn’t the first thing you see, or even the second. As a result, some people that don’t live with us — those that haven’t seen him lick everything in sight, flip light switches on/off, line up chairs in waiting rooms, drop to the ground and strip, run away with no fear, meltdown from rage that fades into apathy — don’t get our concerns. They don’t understand why we push so hard for services in school, why we keep things on an even keel no matter what else, or why we treat him any different. Well, uhm, he is different, and the reason you can’t always tell it at first glance is because of all that we’ve done for all these years.

There was a couple of years early on that we barely left the house, and if we did, it was rarely as a family, so few people aside from our closest and most supportive friends saw the ordeals. We could show videos of the worst of the worst, pictures of the vacant stare, or reports from the nine diagnosing doctors and double-digit therapists and other professionals who worked with him. But why should we have to?

What do you do when you run into people who insist on him just being like everyone else, as though better discipline or a spanking or taking away privileges/possessions could just fix it? What do you do with those people who feel like you just need to have it pointed out that he’s not ‘that bad,’ or that if you just throw him out there and let him learn, he’ll do just fine.

Or do we really need to do anything at all? Is it their problem, or something we need to work on?

What are your thoughts?

I toyed with the idea of joining WordPress’s new Post a Day challenge. I came so close, but then realized a couple of key things that changed my mind.

1) I didn’t want to ruin a perfectly good adequate blog with forced posts. In other words, I didn’t want to throw up a post just because I felt committed to the challenge, as there are days that my head just isn’t in the game. Some days, it’s challenge enough just getting everything done that I have to get done, and the non-essentials sit by the wayside. Blogging, as much as I love it, is still a non-essential. While I’d love it to be more important somehow, it’d have to be more important to others than just me, and unless that happens, I can’t bump it up my personal list.

2) Some days, autism takes a back seat. That’s not to say my son is suddenly cured on some days, but just that I don’t think about autism and its profound effect on our lives every single day. Don’t get me wrong, the “a” word is there each and every day in some regard, but there are days that I just want to call “good days.” I want to just be with my son, just be a ‘normal’ mom and go throughout the day without focusing on autism. I want to do the laundry, make dinner, supervise homework, plan the next day’s events, pray, chat, have a glass of wine, hop on my elliptical and ‘be,’ rather than being a mom with a child with autism. In short, autism doesn’t define my life, and there are other aspects of my life that deserve focus. I have other kids, a husband, a job, hobbies, and that’s all I need.

I’ve been told that on my personal Facebook page, I don’t mention enough about autism. Enough? Who determines what enough is? Honestly, I don’t want to see my Facebook newsfeed and see nothing but autism. I’m going to say it once, quietly, and never again: some people seem to thrive on discussing autism and the attention the hardships bring. Don’t take that wrong — well, it’s not entirely nice, I suppose, but sometimes it seems like when the attention over one issue dies down, there’s something else, an ongoing poor me saga that just drains you, and you don’t even see them on a face-to-face basis, ever. There’s unity in sharing hardships and giving/getting support and sharing resources, and that’s a necessity, but I can’t believe that some people don’t have any good in their lives that they can’t share something other than a newspaper article that’s about an abused autistic child, a comment about some wasted research, or how their school gave more money to the gifted children that week than the special ed program or how their husband didn’t spend 467 minutes supervising therapy with the child as they did. When life stinks, we want to vent and get support, but life stinks in more ways than just autism. If I focus just on autism, I miss out on everything else, and the other things that stink don’t get the attention they need. So, for me, “enough” is as often as I want to post about it. If it’s not enough for someone else, there are a lot of blogs or FB friends out there that you can head to for more autism-related news.

I do have another blog, totally unrelated to autism other than a mention here and there in regards to life with my family and things that occur in our lives. In a general sense. I’m not the best blogger there either, only posting a few days a week. I hope to get more devoted to that blog as well, but my little guy deserves more than the back of my head while I’m at the computer.

Happy New Year’s to everyone! (A day late is better than never, right?)

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