Michelle Cottle on special needs kids

Michelle Cottle has a particularly insightful piece about parents of special needs kids.  The article is billed as a warning of the upcoming funding crisis given the explosion in special needs children. But it’s mostly not. What it is is an unusually sympathetic and accurate description of what it’s like to be a parent to a special needs child — especially our fears for the future.

Two things strike me as I read this.

Like many parents of special-needs children, Sidney found herself swallowed up by her child’s condition. “Your whole life revolves around figuring out what to do to help him,” she says. Quitting her nursing job, Sidney drove Livingston to endless therapy sessions (with his infant sister, Maggie, in tow), enrolled him in an early-intervention program, and put him in a mothers-day-out class to help his socialization. Told that Livingston would never swim or ride a bike, his mom signed him up for swim lessons and literally strapped him to a specially outfitted bicycle until he could ride like a pro. “The more they told me he wouldn’t do something, the more I took him to do it,” she says.

Balancing my own career (which I am trying so hard not to give up), the needs of my healthy children, and the needs of my disabled kid has become the fundamental struggle of my life. I am afraid to give everything I have to my disabled child and sell everything else short. I am afraid not to throw every possible therapy at him, hoping it can make his life even a little better. I don’t want to let my life get swallowed up in his care, and I don’t want to miss an opportunity to get him as functional as he can be.

Another thing that strikes me is my own pettiness. In many ways I am now more sympathetic to people with disabilities and parents of kids with disabilities. And there is a way in which I have hardened. Reading the related link about Buzz Bissinger’s book about his disabled child, my feeling was not happiness that the story of being a parent of a disabled child will be told by an author I admire. It was, “Who are you kidding? Your kid can walk and talk and joke and read. He has twice the mental age my kid will ever have in the best case scenario. I don’t want to hear you bitching and moaning about how difficult it is.” In Cottle’s article, she describes another parent of disabled child:

Not only are parents overwhelmed by the practical matters of caregiving, they often have a tough time relating to people with “normal” children. “When people call you and are like, ‘Oh, I’m so stressed out, my plans for Disney are falling through, blah blah blah,’ I can’t relate to that,” says Toucey. “I’m like, ‘My kid stopped eating three weeks ago and is on a liquid diet, and we’re wondering if we’re going to have to put a feeding tube in him.’”

And I think, “‘blah, blah, blah,’ I can’t relate to that. I’m like, my kid may never not have a feeding tube. He may never eat anything by mouth. I would love to have him on a liquid diet.”

I hope with all my heart I get over thoughts like this. I do appreciate how difficult it is for anyone who has had to discover their children will not be what they expect, and have had to find ways to cope. And that raising my kid is still easier in many ways than for many, many others. But there are bitter moments where I don’t remember.

Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.


  1. In the TV show Nip/Tuck, the wife of the main couple had a baby in utero that was to be born with messed up hands. The couple absolutely freaked out. Abortion was discussed and one or the other thought or both thought it was something that should be done. I’m sitting there “What the hell is WRONG with you people?!” I can sort of vaguely understand if you’re a young couple without children that will have plenty of time to get your “perfect” child, but this was a couple in their thirties that had one kid and was not averse to another (the pregnancy was a good – but unexpected – thing up to that point). Seriously, messed up hands? Of all the potential disabilities, that one is right above a club foot in magnitude and below just about everything else. The thought that messed up hands makes a life not worth living or an otherwise welcome baby unwelcome is just alien to me. Moreso with the exposure to Special Ed kids.

    This is tangential, but your response to parents of more mildly disabled children reminded me of it.

    • Yes. What Bissinger is going through is in fact really difficult and I feel bad about my lack of sympathy. Messed up hands — not feeling so bad about my lack of sympathy.

    • Actually, that reminds me of a student I had a few semesters ago. She was wheelchair-bound. She had no arms – she had normal hands, but they were attached at the shoulders. It was really striking how simply student-y she was. She was sometimes interested, and sometimes late with papers with pathetic excuses. She was cheerful and seemed to be good at making friends. And, something I thought was particularly awesome, her hands always had a perfectly done gorgeous manicure.

      I cannot conceive of a view of a life worth living that does not include her.

  2. Not to be more personal than is meet for a forum like this, Rose, I happen to know that you handle your child’s disability with as much fortitude, grace and humor as anyone I’ve ever known in similar circumstances.

    • Not to be too personal in return, but to the degree that that’s true, it’s due in no small part to a certain amazing friend.

      • Not you, of course. This other friend.

      • Honestly, you two, get a room. Or a sub-blog.

        • How about it, Rose? *leers suggestively* Wanna get a room? *waggles eyebrows* In which we could *breathes heavily* order Chinese food *shudders* and watch television *moans* while criticizing what people are wearing *bites lip* and complaining about people who drive us crazy? *gasps*

          • I would echo Mike here (about the room, not the sub-blog), but then I wouldn’t get to watch 😉

          • Russell, I thought we agreed never to bring those nights up again. Things got a little out of hand, and I’m sorry that you thought it meant more than it did.

  3. It is interesting how “woe me” is such a relative thing. When we were potty training our 4 year old (3 at the time) I went on a Facebook rant about a period of regression for him (5 accidents in as many days). A friend with a very special needs little boy who is a year younger than Xander gave me a polite but fairly firm reminder that I was lucky to have a little boy who ~could~ be potty trained.

    • Weirdly, complaints about typical kids don’t really bother me at all. Just less-disabled kids. Maybe because I have two typical kids and I complain about them? It would not even occur to me to make a comment like that on a Facebook rant.

      One time I was at a doctor’s office with only my typical older kid. He was yapping and yapping away, and I sort of rolled my eyes in a friendly way at another mom, as if to say “Jeez, will this kid ever stop asking questions?” She said to me piously, “You should be grateful that he can ask questions. Some children can’t talk at all.” I had to bite my lip from responding, “I have one of those, too, and I still need a break from the questions sometimes!”

      • Do we ever feel grateful when someone opens with “You should be grateful that…..”?

        I’ve lost track of how often I point out to my students that they should be grateful for the piles of resources available to them that I could not even ~imagine~ when I was in school…. yet.. no gratitude.

        • “Do we ever feel grateful when someone opens with ‘You should be grateful that…..’?” Of course not; it breeds resentment, but we aren’t going to stop doing it because we know they are right. I don’t like when my mother says it to me, but I turn around and say it to my child.

      • “Weirdly, complaints about typical kids don’t really bother me at all. Just less-disabled kids.” I suspect this is more common than you think.

  4. The phenomenon (“you should be grateful you bastard” or “quit your bitching, my problems are worse”) you describe, Rose, is just human nature I think. You always have it worse than the guy next to you and if you don’t you feel guilty for complaining. Is it different for a parent of a child with exceptional needs (or a person with a disability), of course! But I think every human experiences it to a certain degree. I will try not to devalue the degree to which some people it experience it.

    • Yes, I certainly did before I had a disabled kid! Although, frankly, I’ve really been ridiculously lucky in life and this is the first time it’s even vaguely justified (not that it really is – it really is a tendency I’d like to eradicate) And now I still feel guilty complaining when there are other parents whom I know have it worse (whose kids are just as disabled but have more severe aggression problems or lack my kid’s social interest or wake up every hour at night, kids who will definitely never walk or talk, kids with trachs as well as gtubes, etc.).

      • I also have an amazing support system and a stable life and marriage and an ability to get child care and a county with great services. So really, there are plenty of parents out there who should be saying it to me!

        • “I also have an amazing support system and a stable life and marriage and an ability to get child care and a county with great services. So really, there are plenty of parents out there who should be saying it to me!” Yay, so quit complaining already! I’m kidding.
          Life sometimes is not great. People always think “the grass is greener”, but I think it is healthy to recognize you have feelings of resentment. Don’t dwell on them, but it would be unrealistic to ask anyone to not have those feelings, ever.

          Rose – can you forgive the parents who do not understand what it is like to have a child with a disability and still complain?

          • Oh, absolutely! I mean, I used to be one of them – I was a mom of only a typical kid for a while. And there’s no reason why everyone should always have disability on the brain. And I complain about my typical kids.

            This really is something I don’t like about myself. I’d like to say my disabled kid has made me a better person, and overall he has. So I hope I get over it. Especially since, you know, I love my kid. And I wouldn’t trade him for anyone and feel lucky to have him.

  5. The day you get over it is probably the day you’re no longer the person you are today.

    I remind myself of this sometimes. Nobody’s perfect. The corollary that everyone thinks about is that you can always get better.

    The corollary that hardly anybody ever thinks about is that if you change, you can also (a) get worse; or (b) trade a different set of imperfections for the ones you have now.

    I don’t know anybody who is capable of leading a life without getting irritated and resentful occasionally. About the best solution I can see is don’t make other people more irritated or resentful… by communicating your irritation or resentment in ways that are channeled towards trying to lessen everybody’s. You seem to do an excellent job of that, based on what I’ve seen on the blog.

    Stuffing it all into your hindbrain and chanting “serenity now” is definitely *not* a good solution 🙂

    • I just looked through this. What does it have to do with this post or the comment thread?

      • You write “I’m like, my kid may never not have a feeding tube. He may never eat anything by mouth. I would love to have him on a liquid diet.”

        The Heritage Foundation report points out how most of the American self-described poor have cheap entertainment, access to the internet, safe and reliable transportation, ways to keep food from spoiling for extended times, extremely advanced medical care, and a social safety net that at least tries to provide for their material and mental needs. It contrasts this with everywhere else in the world ever.

        The report was roundly damned as rich people telling the rest of us how we shouldn’t ever complain because there’s starving children in Africa.

        • I’m still unclear here. Are you saying that I should be grateful that my kid has advanced medical care? (I certainly am!). Or are you saying it’s okay to complain even if someone is worse off than you? And therefore we should change our views on the Heritage Foundation? I really don’t know what you’re getting at.

    • But there is hope. With your support, someday we may develop a cure that will allow them to live normal and productive lives.

  6. You’re human. It’s a pretty good thing to be. Don’t beat yourself up over it.

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