Friday, September 28, 2012

When Life Takes a Sledgehammer and Slams you in the Gut...

There's not much you can do but roll over and try to protect your innards from another swing. No lemonade involved.

I have a 5 year-old son. He's always been a sort of difficult child. Very quick to learn in some areas, very slow to learn in others. Give him a lever and he could totally move mountains, but for some reason he has spent most of his life talking in quotes from movies. Communication is not his forte. Nor is being told "no" about anything he'd set his mind on. But for a long time my husband and I just thought he was slower, but not abnormally so.We assumed that at some point he would get better on his own, that he just needed time.

Perhaps we were foolish. But we were still young parents and we didn't know any better.

Earlier this year our pediatrician told us that he believes our son has Asperger's Syndrome and ADHD. (The two often go hand in hand in young children.) We had him evaluated by our local Handicapped Children's Association and their assessment was that it is highly likely he places on the Autism spectrum (Asperger's is at the high functioning end of the spectrum). We haven't had a chance to see a specialist who can give a proper diagnosis yet, they are hard to get in with it seems. But because of the HCA assessment our school system placed our son in a special needs class when he started school this year.

So we have had to come to term with the fact that we have a child with special needs, not a child who is just going through a difficult phase or who is slow in some areas. And we have to accept that he will always have special needs. You can't treat Asperger's away. You can learn to cope with it, often with therapy, you can get certain drugs to help with some aspects of it, but you can't make it go away. It's a part of you. It's a part of our son.

We've learned a lot about how to relate to him better in the past several months. We've learned that touch, such as stroking the sides of his face, can help calm him down when he gets overwrought. He is extremely sensitive to touch and so, conversely, to him a simple smack on the hand is agony. We've learned to be more careful. We've learned that routine is really important and that public places where there are lots of people he doesn't know around are difficult for him to handle. We've learned how better to communicate with him on his own terms, often using what seems like his own personal code.

But as much as we've learned most days are still filled with strife. Everything tends to be a battle with him. We have to struggle with him to get him up in the morning for school, struggle with him to get dressed, struggle with him to get on the bus without flipping out because it's a small bus and not a big bus. Then several hours later we have to struggle with him to get off the bus and come home, we have to struggle with him to settle down and stop asking for impossible things about every five minutes (those are the tough ones, when he asks for something that I literally cannot give him), struggle with him to eat dinner, struggle with him to go to bed. And then it begins over again the next day.

It's taken a lot of adjustment. Not just for myself and my husband, but also from his two sisters. In one sense nothing has really changed. Our son has always had these special needs, we just never realized it. He's the same boy he's always been. In another sense everything has changed. Or at least it feels that way. It feels like we're leading an entirely different life than we were at the beginning of the year. I feel like a different person.

And that's why I've been gone from the blog for so long. To be honest, I've felt incapable of writing anything for months now. Words just don't seem to flow together in my head the way they used to. But I've had enough. I'm going to break out of this rut. I'm not going to let my daily stress levels decide whether or not I can write anymore. You should be seeing me around here more often, but not too often. I have so much fiction writing to catch up on.


  1. It seems like this is being diagnosed more and more in kids. From what I know of it, it's usually associated with very intelligent children. Some say Bill Gates and half the people running the tech companies are all suffering from Asperger's -- high functioning on one hand, yet maybe socially awkward and rigid about routine on the other.

    Sorry you're having to deal with this. Must be very frustrating at times. But glad to hear you'll be writing again.

  2. Hang in there Sarah! As you can tell, many of us in the 'old guard' are still hanging around. :-) Life happens, and I think most of us understand that. We (in this writing-blogging circle) all have writing dreams and goals, and I do think we can help each other reach them simply by offering a little encouragement from time-to-time.

    As for the more important issue facing your family, it isn't easy, but you're not alone in that either. There are networks of parents and children facing similar challenges. The most important thing you can do has already been done: identify there's an issue and seek help. Going undiagnosed is the only thing that can hold your son back, and that's been remedied. Now it's only about moving forward, at whatever pace you and your son can manage.

    Truly wish you all the best of luck going forward, and will send positive vibes your way as often as I can think of them.

  3. Children, and adults, with Aspergers are different, not less.

    The way they experience things, see things and relate to others is different, not less.

    It's hard, as a complete stranger really, to offer something useful or meaningful when it relates to something so personal. Nonetheless, why not look up Temple Grandin. The movie is good but her website is perhaps better.

    I don't think I can say more than that without crossing the line into personal advice. So I'll stop.

  4. My younger son's first best friend has Asperger's. For a long time, my son was the only other kid the other boy felt safe around. The other boy has managed to gain some other friends over the years, but it was a long trek and possibly only made possibly by son's willingness to spend time with him when none of the other kids would. You know, because he acted weird and different and stuff.

    Remember, even though everything feels different, like things have changed, nothing is really different. And knowing should give you some tools that you didn't have before that should make things easier.

  5. I guess that's the best part about blogging - it's a community you can keep coming back to. {[hugs}}

  6. I have a friend whose son was diagnosed with aspergers a few years ago. I remember how she felt at the time - shocked, relieved, worried, grateful for answers, and many other conflicting emotions.

    I can't say what life will be like from now on for you and your family, but I do know that with help, support, and knowledge, my friend's son has flourished.


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