Devastating

I went to a lecture on social challenges tonight. It was for parents of kids enrolled in the county special ed preschools and it seemed like it might be worthwhile, so I went. And it was worthwhile. I learned some strategies and games I’m going to start using with Jack. But the thing that really got me thinking was my post-lecture interaction with one of the moms from Jack’s class.

Within five minutes of meeting her she was telling me intimate details about her child and her feelings about autism. She used words and phrases such as “cure” and “recovered from.” She told me she hadn’t spoken to a close friend of hers for two years after her friend suggested her son might be autistic. And this got me thinking about the different ways parents look at autism.

I recently picked up a People magazine with a cover story about Jenny McCarthy and her autistic son. Part of the cover’s tagline was: “the star describes Evan’s devastating diagnosis…” All of this made me wonder: Am I wrong not to be more upset by my son’s probable autism diagnosis?

Don’t get me wrong, autism can be a very scary word. And I’m not saying that it’s wrong to be devastated by such a diagnosis. In fact, when Sam, my oldest, was young he used to line trains up obsessively. And he would layer them in his toy dump truck and rant and rage when one wouldn’t fit right. And I was terrified that he might be autistic. All I’d ever heard was horror stories about autism.

Fast forward three or so years to when we made Jack’s first appointment to see a developmental specialist. I distinctly remember my sister’s blunt question: “For autism?” In my mind, autism was there. It was a big, looming cloud in my imagination, but still her words hit me like a slap. I’m sure she has no recollection of this conversation, and I honestly bear her no ill will. She’s a med student and I think she was looking at it as a medical situation. For me, it was my child. My small, vulnerable child. And at the time I don’t think I had accepted the fact that he might be autistic.

But then I watched him with other kids. Or, rather, not with other kids. And I read about autism. And I talked to his doctors. And I talked to specialists that I hired to observe him in school. And although he still hasn’t been diagnosed, his doctor agrees with me that he is probably on the spectrum. And when it became real for me, when I understood that I have an autistic child, my reaction was not, “Oh my God, what am I going to do now?” It was, “Aha! So much makes sense.”

I’m not looking for a cure for my son. I don’t need him to recover from his autism. I do need him to learn how to work with it. I need to help him develop skills to compensate for those that don’t come naturally to him. I do need him to know that I love him more than he could possibly imagine, just as he is. His autism, his “quirks,” are a big part of what makes him the amazing, wonderful, sweet boy that he is. And I am so proud of who he is.

I don’t begrudge devastation in others. And I don’t mean to imply that I have it more together than anyone else. I don’t. And I’m sure there will be many devastating moments in Jack’s life. But there have been in mine also. And yours. And we all learn to work with what we have.

I just wish that the word “autism” didn’t carry so much fear. I wish that other mothers entering this world didn’t have to be so scared.

I think there needs to be more voices out there saying that autism is not the end of the world. It can make it harder, and there are things to be compensated for, but autistic children (and adults) are valuable, vibrant, exciting members of our world. In my mind, an autism diagnosis for my son doesn’t signify a dead end, but rather the beginning of a different path.

This is cross-posted at DC Metro Moms Blog.

13 thoughts on “Devastating

  1. I think sometimes it’s almost easier to actually get a diagnosis. That’s when you can take a deep breath and say – okay, now how do we deal with this? I think the fear of the unknown is worse.

    It’s different for everyone. My son’s diagnosis 20 years ago would probably be different if he was 3 years old today instead of 23. But the idea that my son wasn’t ‘normal’ devastated me for the 2 times I cried about it. Then I said – okay, how do we deal with this?

    You find yourself becoming quite tolerant a lot of the time because you are more aware than most of all the levels of development and delays in children.

    In some ways – a child with a difference is an incredible blessing. It sounds like you have definitely embraced the wonders of your child, if only others could see that beauty as clearly as you do!

  2. As a conveynor of a huge Autism support group, working with adult Aspies in my (ha!) spare time and the mother of a child with Autism I understand where you are coming from. But people deal with this in different ways, there is a whole spectrum of ways, just like ASD. Some people are offended by the way I talk about my Boo in my posts. Like he is ‘normal’ or something and that I can actually be angry at him, or God forbid FRUSTRATED at some of the things he does. I pick on him, just like I do with my girls. Yes, I do make allowances but I also treat him like one of my children.
    But it hasn’t always been this way. At first I was going to ‘cure’ him, then I spent months crying for him, and then I spent 3 years in intensive therapy. Did it help? I think so. Could he have made the same gains without intervention? Perhaps.
    Now I am just in living mode. My son is on the severe end of the spectrum and will never live independently like the Aspies that I help everyday. But that is OK. My Boo is a wonder.
    Oh, and I know people like this mother, just pretend you are listening and do a mental shopping list and move on. This is how she copes with what she feels is her ‘lot’ in life. One day she will reach acceptance. Somewhere where it seems you are. You are so lucky Stimey. It took me 3 years to get there.

  3. Hi Kelley. You’re totally right. People do react in different ways and I think it’s perfectly fine to be completely wrecked by the diagnosis. And I’m also lucky that Jack is not too severe, which I’m sure makes it easier to deal with.

    Thanks Kelley and BetteJo; I was pretty nervous to write this post. I appreciate your kind words.

    And I really want to make clear that I’m not judging anyone out there for being sad or hopeful of a cure or devastated.

  4. When my boys got their diagnoses, I was devastated, but in waves. Like Kelley says and I have said in the past, people do react to this type of news individually and in their own way. I think the most important thing to remember is that really, every single child on the autism spectrum looks so different — our experience and our reaction to autism can only be informed by our individual situations. Well, of course, right? In our house, autism has two faces, two beautiful faces at opposite ends of the spectrum. Acceptance takes time for some, it did for me. I can honestly say now that “It’s not the end of the world.”

    It is obvious, stimey, that you are a thoughtful and concerned mom who adores all of your children regardless of any challenges they might face. I appreciated and enjoyed this post.

    I have a whole (as yet unwritten) post on Jenny McCarthy and the “Cure Moms”!

  5. I’m nodding my head emphatically here. I watched Bub like a hawk for signs of autism – or what I thought of as autism – after his MMR vaccination, then breathed a sigh of relief when he was “fine” (sure, his favourite pastime was lining up our DVDs in symmetrical rows, but that’s just a cute quirk, right?).

    When his speech therapist used the “a-word” when giving us our referral in February of 2006, it was a punch in the gut. He was two years old and using only nouns, very little communicative language, and suddenly the future changed its shape – there were no guarantees anymore that he would learn to communicate. The worst-case scenario worsened considerably – and the prospect of regression still loomed terrifyingly.

    I find it hard to recapture that feeling now – I’m so used to the idea that I actually find it more upsetting, in some ways, to contemplate the idea that Bub is NOT autistic. The quirky parts of him have always been the ones I love the most – while wanting, at the same time, to find ways for him to be himself in the world.

  6. I was irked at that People mag, too. Why teh scaremongering? Why not offer people some other perspectives? Some real information? Some support and resources so that “devasting” doesn’t have to be a parent’s first reaction when the word “autism” comes into their lives?

  7. I think what scares some parents is the whole my child is not perfect. No one is perfect, each one of us has their own problems and that is what makes us each unique and special not imperfect.

  8. What a beautiful outlook. Your son will undoubtedly benefit greatly from you attitude.

    I’ve had students whose parents have your perspective and those who have not. The latter did not fair as well.

  9. i so agree with you. my son is 12 now and getting a diagnosis was the best thing! we had been getting annoyed with him for things he could not help and once we knew what we were dealing with it made life so much better for all of us. love your writing!

  10. Hi! I followed your trail back here from my blog, and I know you posted this a long time ago, but I have to comment. I have to say, yes, these are my thoughts exactly, how I’ve always felt, right up to that “aha, now it makes sense,” moment.

    And you are right, it should be said and it should be said often. There are so many sides to this story, so many differences within the larger difference of autism itself. But it’s not all bad. And we aren’t all devastated. And many of us simply do work with what we have, every day.

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