Some Unexpected News

For more than a week I’ve been putting one foot in front of the other, just like I do every day. We survived Spring Break and even better, we thrived after John slept through for seven straight nights. This alone is huge, people, huge! I’ve been getting them up every morning — feeding and clothing and getting them off to school, as if nothing momentous has happened in our lives. Business as usual.

But there’s something even bigger. You mean the huge is not the return of some zzz’s at night?

No, it’s been brewing and it’s so big I’ve only been able to take it out and look at it when I’m quiet and the house is asleep. Even then, I don’t know what to make of it.

Our developmental pediatrician thinks Sam may be off the spectrum. As in, no more autism diagnosis. It’s not yet official — she has ordered new neuropsych testing to see where both boys are now, but she thinks he’ll test off of it. And as a good friend said, even if he doesn’t test completely off of it, he is close enough to be questioned and that can only be a good thing, right?

Right? You’d think I’d be shouting from the rooftops, “We did it!” And don’t get me wrong, I am thrilled at the possibility. It just hasn’t sunk in. And in any event, if it’s true, Sam did it. No miracle cures around here, just lots of speech therapy early on and some wonderful teachers in his special needs classrooms.

But then (and again, if this is true), what does that ultimately mean? They say to parents upon first hearing the news that their child is on the autism spectrum, He’s still the same child he was before the diagnosis, as if you need reminding. The same is definitely true if they take the diagnosis away. He is still a child who can’t stand to be dirty, who has a really hard time using both of his hands at the same time. He is still capable of massive meltdowns if his day veers off the schedule he expects.

Nearly two-and-a-half years ago, this was offered up as a possibility. I have often said how hard it was for me, a first-time mom who didn’t know what typical looked like anyway, to believe that Sam was also on the same spectrum as his brother. It took awhile, but I got used to it. I assumed that some of Sam’s quirkier behaviors were part and parcel of being on the spectrum. I practiced acceptance and tried to keep my patience in check when I forgot about his unique challenges, so different than John’s.

His O.T. just told me a few weeks ago that he is the kind of kid who has the potential of falling through the cracks because he is so bright and looks so good in many ways. In fact, his IEP team is recommending our home school, regular kindergarten, with just some resource hours for next year. Will he sink or swim?

So yes, I am thrilled at the possibility, I know we are luckier than others. But I feel like putting on the brakes. Just a little.

4 Comments

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  • Wow, that is huge! I’m not surprised that processing that information is taking some time. And you’re right, he’s the same child regardless of what he may or may not be diagnosed with. All I can say is, I’m glad he’s doing so well, no matter what happens in the end!

    I read the post you linked to and I could totally relate–I can’t quite believe Primo may be on the spectrum as Secondo. They’re so different, it just doesn’t compute.

    Oh, and as for the sleep? Awesome. Glad everyone is a little more rested!

  • Wow! First of all, congratulations on the sleep! That’s a huge deal. And also congratulations on Sam’s great progress! No matter where he is or isn’t on the spectrum, good for him for all of his hard work! I can imagine that the potential change in diagnosis must bring up some complicated and conflicting feelings in you. The great thing for him is that he has you looking out for him, no matter what his testing says. You’re going to be looking out for him and paying attention, so you’ll make sure he’s okay.

    Can I ask you who is your developmental ped? And where you get your neuropsych testing done? We’re thinking about another eval for Jack, and are looking into options.

  • So glad to hear about the sleep! Do you know what’s making the difference?

    As for the second part, I can’t imagine how you are feeling. If he’s off the spectrum, do you think he’ll get a new, milder diagnosis that will help him get assistance if he needs it? Or meybe he won’t even need it!

  • Your Sam and my Charlotte sound very similar.

    I have often had the “is she, isn’t she” conversation. She’s also in Kindergarten and doing great – just like Sam.

    It’s all so fascinating, isn’t it? This whole “spectrum” discussion?

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