Is he or isn’t he?

A friend on FB posted this morning that her son, who is 7, got an ear infection last night and his eardrum ruptured. A few comment in, she posted “Pray for no permanent hearing loss” and I…well, I nearly became “that parent”. The one who says “You know, that’s not the worst that can happen. Permanent hearing loss is not a huge thing, in the scheme of things. Your kid is 7. His speech is fairly established. Getting a hearing aid is a fairly easy process and kids don’t mind them nearly as much as adults do.” Except I didn’t, because that would be callous of me and completely unfair.

It does, however, make me feel like I’m in a weird camp. Should The Boy’s hearing loss be a bigger deal than it is right now? Sure, it’s come with its fair share of struggles, like learning to talk and eating. It’s put him a bit behind the curve in some spots but he’s way ahead in others. Aaron says I panicked a lot in the initial diagnoses, but that’s sorta what I do – I panic, I fall apart, and then I pull myself together and figure out what we’re going to do about it. So no, it’s by far not the worst. There’s hearing loss but he’s not profoundly deaf…and if he was, well, we’d sort that out too. I took ASL classes the semester after we found out and he got his hearing aid, because I thought it might be needed. At that point he was becoming more verbal but he still wasn’t clear enough that others could understand him and he was so young that expressing himself was an issue too. Hell, he’s 3(!) now and we’re still working on articulation and how to express oneself.

So is The Boy a special needs kid or not? I have services for him – Idaho Educational Services for the Deaf and Blind, for starters, plus he’s in a language pre-school run by his speech therapist. He gets 30 minutes of dedicated, one-on-one speech therapy twice a week at the school, working on articulation. He’s also 10 months behind on average, according to the assessment I do about every 6 months with IESDB. He was 37 months at the last one and his age score for language comprehension is 27 months. He’s been 10 months behind the entire time. Granted, the number of areas in which he is behind have shrunk but he’s STILL behind by nearly a year. So special needs? Except that you can’t tell by looking at him, unless you can see his ear, that there’s anything different about him at all. I could probably not use IESDB at all, but I prefer to have them just in case. During the summer it lets him be exposed to other kids that are just like him…which puts us back in the first camp.

I am in no way upset that he might be – it’s just a label, after all – but it is yet another identity struggle for me. Do I try to jump into the special needs kids community? I can’t really identify with most of the parents other than “yeah it’s a struggle” but in all honesty, beyond that I have no experience and would only succeed in making an ass out of myself. Do I insist that he is not a special needs kid? That just makes me look like a judgmental ass. Where do we fit?

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5 Comments

  1. Hearing loss isn’t the worst that can happen, but it’s not a thing most parents want to have happen to their child. So it’s perfectly reasonable to say “I hope/pray that it isn’t permanent.” But I think you knew that. Or maybe, without the fuller context, I’m misreading what the other commenter said.

    Anyway, yes, your son has a special need. And it doesn’t have to be anything visible, trust me. If not for my cane (and I can walk without it – it just hurts more) no one could tell by looking at me that I have disabilities. (And it took me far too long to come to terms with labeling myself as such.)

    On the other hand, he’s not what most people would call “special needs.” If you use that label, people are liable to misunderstand.

    Are there communities of parents who have children with hearing loss? There must be. And they must have some ideas of how to answer that question. Or talk to the speech therapist.

    Reply
    • It was the parent who literally said “Pray there’s no permanent hearing loss”. I imagine it was the tone I took it in, because it’s a tender spot for me. It just also made me think.

      There are communities that I am semi-involved with for parents with kids of hearing loss, but again with the “most of the kids have bigger issues than my kid” and I don’t relate. My kid CAN hear without his hearing aid. One ear works fine (or did, but that’s a post for another day maybe) and the other works like hearing under water works. The one that works compensates but not enough. A lot of the parents are signers and I’m…not. I’m not very good at it and I’m too intimidated to really try. So we go somewhere with these communities and there’s cliques of people signing and talking, or just signing. I’ve met a few of them, and we make a point to meet when we go to events, but outside of those events we don’t. Perhaps when he gets into school-school it will be different.

      I know special needs don’t have to be visible – look at us. 🙂 I also don’t consider myself a special needs adult either, even though at one point I couldn’t walk around a store and had to have a vroom-vroom cart. I got looks, yeah, but I just kept my head down. That’s a far more visible thing than a hearing aid, I think. Even a cochlear implant is more visible. And special needs IS a label, but it might be a necessary one down the road. It’s just a new camp for me to be in and it’s…different. So varied.

      Reply
  2. I don’t know, I struggle with it too. D isn’t “special needs” nearly as much as he’s “medically complex” – which is the preferred label for me if we’re forced to use one. “Special needs” often comes with the assumption that there is a cognitive/neurological deficit, which he doesn’t have. My feeling is that if they are able to function independently at age level, “special needs” isn’t quite the right label. (I guess one could argue that D cannot feed himself, but if we were using a different method he could, and he will be able to in time.) … but we are sometimes forced into accepting it as an umbrella term to keep him safe at school because of his medical differences.

    I think, in terms of fitting in – no one does. For everything that is wrong with your kid, someone else has it worse (making you feel guilty), and someone else has it better (and therefore eventually grates on your nerves). Mostly I just try to be honest – this is where we are with it, sometimes/mostly we can just roll with it and it’s ok, and sometimes it majorly blows. Best you can do is find like-minded people who aren’t out to win (lose?) some Pain Olympics but rather just admit that things could be worse, but things could be better too, and sometimes that’s hard.

    Reply
    • Oooo…”medically complex”. I like that one. Still doesn’t fit us, but I like it better than “special needs”. You are right – that is usually used for some sort of neurological issue. The Deaf community is…odd. They dislike the words “hearing loss” because of what it implies. Yet, it fits, at least to me, which leaves me as an outsider. I try not to compete in the Pain Olympics but I think in my head, I do. That I never have it as bad as others in my situation – even with Fibro, I can’t handle being around others with it much (PGW being an exception) because they often seem whiny and they wallow. I know that’s my own thing, because mine isn’t that bad and so even though mine DOES interrupt my life, it’s not to that extent, and I can’t handle it. I don’t want the Boy to grow up with that issue!

      Reply
  3. I’m not a huge fan of labels, though I understand the need for them when it comes to getting services or needed help. So much of it is what fits you and works best for you without taking the needs/wants of others to heart.

    Reply

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