He’s Done With Speech Therapy… So Why Am I Not Cheering?

So, this is odd. Here, we fill out a form to look into Sensory Processing Disorder, and come out not only without a consensus there, but now not even speech therapy. I feel almost like a hypochondriac, or I guess it would be more of what, Munchhausen by Proxy here?

I mean, it’s good. I’m glad he’s met all the goals in speech that they set when they redid his plan last year, but at the same time, I don’t think he’s ready to be done. He’s almost 8 and still can’t pronounce his name, struggles to speak in clear sentences and maintain a train of thought so that sentence can be completed. I’ve heard his friends talk — this isn’t normal for his age. So while I’m glad they feel he’s not needing their services anymore, I feel like he still does, and so it’s hard for me to celebrate his “graduation” from speech when to me it feels more like he lost the help he desperately needed, rather than celebrating him no longer needing it.

I was almost excited when we learned about Sensory Processing Disorder. Not because I WANT something to be wrong with my son, of course, but because it explained so much: ADHD often gets diagnosed when the issue is SPD, it said. Inability to sense when clothing is askew, body is dirty, etc. the things said. Emotionally issues, struggling with speech and speech comprehension, struggles interacting appropriately with peers… it’s all listed there in one neat package. I thought… I guess I thought that if almost all his issues fell under one title, that then that meant it would be easier to address them all at once, and we’d at least have a good direction to follow.

But when putting my evaluation form next to the teacher’s, they said the only thing they see is disorganization and poor social skills. So, out of any therapy he goes, and I’m left feeling like rather than celebrating, I should instead be rushing him to a pediatrician to get another occupational therapist to evaluate him again. I get that his teachers see him during the day, but I can’t help but feel like their opinion, when they’ve known him for 3 months, shouldn’t weigh as heavily as mine, who has parented him for 7 years.

And I hear this coming out of my fingertips, and I feel like I’m crazy. I feel like the weird mom who WANTS something to be wrong with her kid, who is telling all the experts they’re wrong, who is somehow just a crappy parent and that’s the reason for the problems.

So I’ll make him his special celebratory treat and praise him for the work he’s put into speech, but I can’t help but think back to when he was 2 and we decided since he was “borderline” in need of help then, that we’d skip it since he seemed to be making good strides, only to be bit in the butt a few years later when it became obvious he really should have gone into therapy after all.

I’m supposed to be happy here, right? Why am I not?

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10 thoughts on “He’s Done With Speech Therapy… So Why Am I Not Cheering?

  1. Katie says:

    I know exactly how you feel. When Mikey graduated from everything and all his diagnoses were removed, I felt almost betrayed. SPD had explained his issues so well! I didn’t feel crazy! He’s still having certain issues, but not enough to meet their requirements? So is it that he’s actually okay – which doesn’t seem right to me – or that they have ridiculously low standards? Am I supposed to ignore what I see or continue his care on my own like a hypochondriac? I want my child to be “normal,” but I also want to know that what I see is actually there! Argh! Still, I celebrated all the hard work we put in and the progress he made. And I’m still working with him on my own…

  2. Katie says:

    My daughter has autism, and through my online support group, I hear a lot of stories like this. Sadly, teachers often think parents are making things up because kids act completely differently in school than at home. They don’t get the whole picture. I’d definitely recommend getting second opinions for his behavioral issues and his speech. He clearly needs the help, as you know, but the school doesn’t want to have to deal with the IEP and providing extra support for him. Fight for his rights. That’s why you’re his mother. Good luck!

      • Katherine Michaud says:

        I know it can feel like you’re being told you’re wrong, but you’re not. If there were nothing wrong, you of all people would know it. So keep going to different doctors or therapists or specialists until you find someone who is on your side. The teachers just don’t want to have to give you the help you need because it costs them money.

  3. Tam says:

    I don’t blame you for feeling the way you do. I think any good parent would have these mixed feelings. Yes, it’s great that he’s “graduated” from speech, but if he’s still not up to par with his friends, then there’s something else that needs to be done. Let him have a break for about a week (or until after the first of the year) and go to another pediatrician; you’re entitled to a second opinion.

    Good luck!

  4. Sid says:

    I have very similar feelings Christie. Of course we don’t WANT something to be “wrong” with our children. The situation is that we see problems that the “experts” say are not severe enough to qualify for services, and that’s what’s upsetting. The way Rocco says his name sounds more like “Wah-co,” and a handful of people have thought he was saying “Walker,” so NOW he freaking spells it! Other children look confused when he speaks, sometimes walk away, ignore him, or say to me “I don’t know what he’s saying.” The speech pathologist at school says that he is at age level, and that the sounds he cannot say that are making his speech difficult to understand (ch, th, sh, j, and r) are not considered “speech-delayed sounds” until he is 6-1/2 to 8 years old! So I have been warned that when he is officially evaluated again, he will no longer qualify for speech. So, we’re supposed to wait around in limbo for 18 months to three years until he’s considered “delayed” again!? UGH!

  5. Molly says:

    My oldest, my cancer survivor, gets physical therapy. He’s “okay” for his age but definitely not quite where he is supposed to be. When he was assessed by the school district, they said he didn’t need it (he was already getting it medically, so we just continued). I’m not sure what THEIR goal is for him, or what their goal is for your son, but being only just barely caught up, if that, until he falls behind again, isn’t really good enough.

  6. Rachel says:

    Christie, consider hiring an educational advocate. It’s sort of like bringing a doula to your birth, but you bring the advocate to all school meetings. When our school initially said my autistic daughter “qualified for services” but did not “need services” and therefore could not have them, we were stunned. We pulled out of school for a while and then switched models. But eventually we were back in the public system and by then we had heard of using an advocate. We found one who knew our school system and fit our family personality. She came with us to an IEP meeting and it was like night and day. We got everything we wanted – every service we felt our daughter needed including a full time aid. It was amazing. If you google educational advocacy, you’ll find a lot of information about it. If you pursue it, interview a few people to find a good fit and whoever you choose, make sure they’ve worked with your particular school before if at all possible. That way they know the ins and outs of that particular system. like I said – just like a doula 🙂 hope this helps.

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