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Dear Teacher: My Disabled Child Is Not Lazy

Dear Teacher: My Disabled Child Is Not Lazy

By Mir Kamin

There’s a lot of talk in the disability community about how we talk about it; person-first language, for example, tends to be a hot button in the autism community. Is my child autistic or is he a person with autism? Does it matter how I say it (some people say yes, absolutely, others say it’s personal preference)? For those of us parenting kids with disabilities, there is a constant push-pull happening in terms of what it’s “okay” to say. Is it okay to say that you love your child but hate their disability? Is it disrespectful or demeaning to say that? Again, opinions vary.

I am raising two fantastic human beings whom I love more than anything else on this planet. Both of them have disabilities, and because those disabilities are neurological and mental-health related, I am accustomed to a whole host of misconceptions about my children, their challenges, my parenting, and what other people assume we “should” be doing at any given time. This happens in real life and it happens online because I write about it. It happens with people we know and with strangers. It’s complicated and often messy, and I second-guess myself all the time, and I often wish I could take away some of the pain these challenges bring to my kids’ lives, because of course I wish life was a little easier than it often seems to be around here.

Here’s a handy and relatively non-threatening line I like to throw out there: Just because you can’t see it, doesn’t mean it doesn’t exist. There’s a reason some things are called invisible disabilities. And if pressed, sure, I’m happy to get into the science. Autistic brains are structurally different from their neurotypical counterparts, for one thing. For anyone who thinks prior difficulties are a “poor excuse” for current struggles, check it: childhood trauma changes brain structure, as does PTSD at any age, actually. While the specifics are nobody’s business unless my kids choose to share them, their brains are different. That’s just how it is.

My children are more than their disabilities, though. Our approach here is to emphasize that challenges are to be recognized and met with as much grace as possible, and they’re never an excuse to stop trying. I push them harder than anyone else—while doing my best to put appropriate supports in place and honor their limitations—and so, over time, I’ve grown used to judgments and misunderstandings, but I remain baffled by those who seem to believe anything that happens here is somehow related to laziness.

Today a teacher at my kids’ high school told one of my kids to “stop using your IEP as a crutch.” And let me be very clear: I don’t dislike this teacher (at least, I didn’t before I heard about this…). My kid doesn’t dislike this teacher. But that statement stung and, once shared with me, made me really think about how misunderstood kids like mine are going to be their entire lives, even by people who “should know better.”

I’m really, really angry right now (spoiler alert: strong language ahead). Here’s what I want to tell that teacher (and likely will, face to face, very soon):

1) People with broken legs use crutches because that’s the reasonable and appropriate way to compensate for their injuries. Students with disabilities are served under IEPs because that’s the reasonable and appropriate way to compensate for their differences. If you wouldn’t tell a kid with a broken leg to get rid of their crutches, you shouldn’t tell a kid with an IEP that it’s a crutch. I mean, unless you’re a complete asshole.

2) Just like those crutches for broken legs, IEPs exist to serve a specific purpose in light of specific needs. You can’t just get one for the heck of it, nor can you be afforded any accommodation at all without it being assessed and agreed upon as necessary.

3) IEPs are not, in fact, optional! Following them is federal law, regardless of your personal feelings about their necessity. Editorial comments are unneeded, unwanted, and just plain unkind.

4) My children, and all other people with disabilities, already have it harder than most. They already fight (unwarranted) feelings of shame for the ways in which they struggle. Don’t ever suggest to a human being in that situation that they aren’t trying hard enough. If you had any understanding of how hard they work every damn day to function so well that you can have the ignorant luxury of assuming they’re fine, you’d be mortified by your flippant comment.

5) For every kid who has a parent like me who’s going to crawl right up your butt when you make a misstep like this, there are a dozen more struggling kids whose parents either don’t know, don’t care, or have other life circumstances preventing them from advocating for their needs. Rather than being annoyed by being called out, maybe take a minute to truly reflect on not just your behavior, but your mindset. I assume you became a teacher because you care about education and the future of our country. News flash—disability exists whether you believe in it or not, and in larger numbers than you think. You have a responsibility to all of your students, not just the ones who work in a way you understand. Act like it.

Okay, then.

(I’m available for parties, but only if you want to clear ’em out, I guess.)

Mir Kamin
About the Author

Mir Kamin

Mir Kamin began writing about her life online over a decade ago, back when she was a divorced mom trying to raise two regular little kids and figure out what she wanted to be when she grew up. Now ...

Mir Kamin began writing about her life online over a decade ago, back when she was a divorced mom trying to raise two regular little kids and figure out what she wanted to be when she grew up. Now her life looks very different than it did back then: Those little kids turned into anything-but-regular teenagers, she is remarried, and somehow she’s become one of those people who talks to her dogs in a high-pitched baby voice. Along the way she’s continued chronicling the everyday at Woulda Coulda Shoulda, plus she’s bringing you daily bargain therapy at Want Not. The good news is that Mir grew up and became a writer and she still really likes hanging out with her kids; the bad news is that her hair is a lot grayer than it used to be.

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Comments

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  • jwg

    Brilliant. Have you given any thought to actually sending it? I know it’s hard with high school kids who would die of embarrassment if you did anything publicly but maybe it needs to be read by all staff members. Or maybe you could just chop that one individual off at the knees.

    • I will be having a word with the teacher in question, but perhaps in a slightly more restrained way.

  • Katarina

    It makes me really glad that you are being a squeaky wheel here. As a former Special Education teacher, I can tell you that the Gen Ed teachers rarely had much instruction on Special Education needs, even though they certainly taught lots of kids with IEPs. Some are just don’t have the knowledge and some are plain jerks. (Sad story – I had a student who, after lots of encouragement to advocate for himself, nicely asked a teacher to write on the blackboard in print because he was a struggling reader and cursive was hard for him to read. Jerk teacher told him no, he was in high school and should know how to read cursive by now). I think you should not only discuss with the teacher, but also discuss with the school administration that they need to get their teachers some professional development to improve their knowledge and sensitivity. I remember the FAT City Workshop video being an eye opener for people. http://www.amazon.com/Difficult-This-F-A-T-City-Workshop/dp/B000KT0UJC

    • Lucinda

      This 1000 times.  I used to teach English at the secondary level and the training we were given for disabilities was pathetic.  Classroom support was minimal.  Many times I was lucky to get a copy of the IEP.  Yet, I had a higher than average number of students on IEP’s for two reasons.  1) I taught a core subject.  They all had to take it. 2) I worked my ass off to understand the kids and meet them where they were.  Nonetheless, I failed the kids regularly due to my lack of knowledge and was frequently very frustrated. I’m not excusing this teacher at all because that was just an asshole comment but I understand the frustration when you just don’t know WHY a kid is struggling.

  • Sara

    What that teacher is missing is that the kids are so successful because the IEP allows them to be. The crutches allow the kid to get to class in the same way an IEP puts kids on a level playing field. I’m horrified that someone in education said that to a kid. Shame on them.

  • Jen

    Mir, I’ve been following your blog since forever, back when you were a single parent and I was childless. Now I’m a single parent of a boy child on the spectrum. You, your family, sharing your life with us on the internet, you’ve helped me in so many ways! You’ve helped me be a better parent. I’m not just ego stroking here, I’m busy printing this out for future reference (my ragey Mama bear moments are rather less eloquent than yours lol). But I HAD to say this, sincerely and whole heartedly – I’m so proud of you! Which sounds weird as I don’t know you, but I think you deserve to hear it, not just say it. You are handling this beautiful, challenging life with grace, patience and just the right amount of ass-kicking necessary and I can’t thank you enough for sharing.

    • +1,000,000

    • No fair making me weepy, Jen! It’s hard to feel like you have to fight for everything all the time, and it helps to know we’re not alone, doesn’t it? You (and other longtime readers) have given me at least as much as I’ve given you. Thank you for being here all this time. ❤️

  • Jill

    As the only Special Education teacher in a school for Regular Education (a preschool, but still a school) I now share this with them:

    Child 1 has a scrape on her knee. The teacher gives her a bandage. Child 2 has an arm cut off. The teacher gives her a bandage. Child 3 had an alien climb out of her head. The teacher gives her a bandage….

    No one thinks this is right/fair, but it IS equal. We need to treat children differently in order to be fair. Identical/equal is not the same as fair. (And I make up new injuries each time, if you can’t tell.)

  • Brenda

    I’m just over here waving my hankie in the air and muttering “C’mon!” in agreement. I struggle so much as an adult with figuring out when I’m truly being lazy and when it’s just honestly too much and I need to give myself a break. Accepting that self-care is not being selfish was a big deal for me.

    • And that, Brenda, is a huge part of why I keep harping on this and won’t shut up. My kids are going to be adults soon. They’re internalizing this stuff every day; I’d be stupid to think otherwise. I can’t bear the thought of them going out into the world and believing those messages which, essentially, tell them that they could just stop being disabled if they tried hard enough. That attitude breeds depression and dysfunction. 

      You’re doing just fine. Self care is awesome and so are you. Listen to yourself and people who get it. There will always be people who don’t, but that doesn’t have to make you feel bad. 

  • Alison

    Thank goodness for in tune, articulate and prepared to fight parents like you. Because, sadly, many of the kids who need IEPs have parents who struggled at school and still struggle to understand the system their child is in – and are too overwhelmed or in awe of teachers to question statements like this one.

  • As ever, your experiences and thoughts and expressions, are as a ballast to me, a parent of kids with “invisible disabilities”. It is always comforting to know that I’m not the only one experiencing these types of things, and forever second-guessing myself with every decision. Thank for writing about it all. I am absolutely sure you and your kids will look back and will be incredibly grateful to your strength in the face of it all (however not strong you felt at the time). Yours is a necessary voice and I appreciate it.

    • Jodie

      Also your rights as a parent and HOW to advocate are pretty opaque or at least can be when presented to you.  I was in special education for a number of years which has come in handy over the years, but without it I wouldn’t know about half the advocation tricks and legal responsibilities the school bears.

      • Jodie

        Sorry wrong post to respond to

  • Danielle

    My child is newly diagnosed, so I may need to borrow your strength.

  • Kim

    well, you know I love and appreciate you and think your hair is pretty, but *thank you*. As someone who was diagnosed at 48, I can tell you I’ve spent my entire life believing I am inadequate and lazy. Worse, you know how we all fall back on our patterns when we’re under stress? I know I’ve done that with both my girls. I circle around, I apologize, and we try to do better.
    ADD is a difficult and frustrating disability to live with, whether it’s your own or a loved one’s. But yeah, teachers shouldn’t be kicking crutches out from underneath anyone, full stop.

  • Berni

    I teach science at the secondary level. I also am a mom to a couple of aspies. I adamantly believe that having children with disabilities makes me a better teacher. I teach 157 students, I have to keep up with 20+ IEP’s, plus many 504’s. It’s my job to do that, and I don’t complain. I attend at least 4 IEP meetings a month. Yet when my little guy needed an IEP, you bet that I pushed like no one’s business!! His teacher was probably sick of me, but I’m my children’s advocate. I will always fight for what my son needs. And I would never ever ever call out a student on an IEP! That’s unprofessional and just plain cruel!

  • Kathryn

    Mir, please post a follow-up to this. I’d love to know if the teacher came to accept that he/she was wrong, or if they persist in this kind of thinking. My mom was a special needs assistant, and I’ve been involved in the school system for a long time, and from what I can tell the teachers who can actually admit they were wrong and did something harmful to a kid are few and far between.

    • I spoke with the teacher this week, and although I was furious when this first happened (obviously), I framed the conversation as “I’m sure you didn’t mean it this way but here’s why this is problematic for my child in specific and also in terms of general attitude” and it was a good talk. It truly was one of those just-not-thinking sorts of moments. That’s not an excuse, but I’m glad I had the opportunity to maybe head off something like this happening to another kid. (The teacher thanked me for coming in and addressing it, and apologized, and was appropriately receptive to correction, sooooo… best possible outcome, all things considered.)

  • Alyssa

    I have a question that I’m sure will be incredibly unpopular. I think it’s great that IEPs and special accommodations are available for kids in elementary/middle/high schools, but that is not necessarily true in college and certainly not true in the workplace. Most of our careers won’t be impacted by having a broken leg or using physical crutches, but will be impacted by having a brain that works differently. I work in science research, and I see many people whose careers are limited because they freeze when put on the spot (by government people doling out grants, etc.). So it seems to me like some crutches are OK forever, some are OK when you have a plan for how to phase them out, and some are maybe legally allowed but not a good idea for maximizing long-term success. Obviously I have no idea what sort of “crutch” the teacher was referring to, and in any case I agree that it was completely unprofessional to say that to a student. So, as your kids get closer to the point where crutches won’t be available to them, how do you figure out which crutches are a good idea?

    Disclaimer: I have a young son with ASD, and figuring out exactly what to fight for and how to get him to the point where he has as many options open to him as possible is something I struggle with constantly (ie., is extra time on tests a good long-term idea).

    • Alyssa, I think this is a fair (and necessary) question. Some of the accommodations we can give kids up to the end of high school they won’t be able to have in college (although some, like extended testing time, they will), and as you say, the world is not necessarily going to open its loving arms and say, “Oh, you have a processing disorder? No problem! We’ll handle this differently for you!”

      Obviously I can’t answer this for everyone, but I can tell you that for both kids, we’ve phased out some accommodations along the way, or changed them from “automatic” to “when requested.” My son, for example, couldn’t get through an elementary school day without scheduled breaks (or his behavior was… not good), and now we simply have a sort of “emergency hatch” in his IEP where he can be excused if he requests it. He’s a junior now and I think he’s used it once, maybe twice. Some of the accommodations we’ve had deal with maturity and internal regulation, and as the kids get older the goal is to teach them self-management and, yes, to adhere to expectations as much as possible by changing their own behavior rather than expecting a change in environment. (That means, of course, that sometimes they grow and succeed, and sometimes they fail. That’s life.)

      On the other hand, some of the supports we still use for executive dysfunction (teacher-assisted “chunking” of multi-step projects, reminders of due dates/missing work, written instructions) may not be available in college and almost certainly will be viewed as weakness/disorganization in the “real world.” So we work along a double path: we keep the supports, but at the same time we have the kids utilize different organizational tools and consider the teacher supports a failsafe rather than the main mechanism, if that makes sense. And when they get into the real world, either they have to resolve it somehow or make sure they end up in careers where they can say, “Hey, this is a weakness of mine and I’m working on it, but I may need some extra help.”

      Bottom line, I don’t know anyone who’s good at everything. We encourage growth and progress but also honest assessment of their capabilities. Thinking about a future career? Fabulous! What strengths do you have which are in line with the requirements of that field? And be honest, which weaknesses may limit you? How will you handle that? Etc.

      I’m not sure that’s the answer you wanted, but that’s how we approach it.

  • Catherine

    I am with Alyssa.  I have one child with an IEP in place and another I am beginning the process with but I constantly wonder how they will eventually fare as adults without such accommodations from society at large.
    I know they need the additional support now, but I also know they will need to learn to support themselves long term and am at a loss on how to facilitate that. 

    • So this brings up a good addendum: If I’ve learned anything along the way, it’s that you just never know what improvements age, time, and maturity bring to the table. Some issues will be lifelong struggles. Some issues which feel insurmountable to you right now will (surprise!) become distant memories as they grow. You can only proceed with the information you have right now.

      • Jodie

        +1 to this.  It’s been nothing short of humbling and tear inducing watching my daughter (dylexia and ADD) grow and mature past things that just a short time ago felt insurmountable.  One observation that has served me well is she seems to grow in fits and starts.  She’ll dip her toe in a direction for a long while and then all the sudden she’s in the deep end swimming.

        Good luck and thanks for the post Mir.  I’m sure this one (like to many others on this subject) will serve me well in the not too distant future.

    • Beth Denton

      As an adult with ADHD, I won’t sugar coat it for you. This process is HARD. Colleges seem to treat accommodations like an extremely limited fast food menu… “You can have extended time on exams, test in quiet settings… oh, you don’t need those, take them anyway. You need your laptop to produce neat, organized schoolwork in a timely fashion? Too bad, we don’t do that.” (Ironically, I have a special education degree, and that was also the word from the professors). 

      I think that two most important needs in terms of skills for adulthood are self-advocacy (asking for what you need) and assertiveness (using the tools and techniques of assertiveness training to get what you need without manipulation). These are really important in adults with invisible disabilities because so often we become afraid to or ashamed of asking for help because we don’t “look” disabled. 

  • MR

    I’m glad that you are going to address this with the teacher. I’m not sure when everyone started thinking of crutches as bad things. They are there to help when you need it, but not something you want to continue using once you don’t need it, because once you don’t need them, they actually make life harder. I think people have somehow switched it that people who use crutches are purely lazy. But anyone who has done that has obviously never been on actual crutches with an injured foot/knee/leg. Crutches are EXHAUSTING. Anyway, I’m probably being too literal here. My real point is, that it is awesome you are addressing this. And please make sure your kids know that you are addressing this. My mom was one of those moms who was never afraid to get in there and argue with the teachers or whatnot, and it thoroughly embarrassed me as a teenager. However, it also taught me when I needed to stick up for myself as an adult. And how to go about confronting someone, if needed. As I got older and had issues, I tried handling them myself, and only called in my reinforcements (mom) when I wasn’t able to do it myself, but those instances got more and more rare. And now, I am the person in my family who addresses issues with people. Now that I have young children in school, I find this skill to be invaluable, and one that not everyone has learned. On multiple occasions, I have talked to friends about how to address their concerns for their kids with their doctors or teaching staff, and have even gone with them at times in meetings to do so, passing on that knowledge. Because it is invaluable. My mom used to sit us down first and say, “I want you to know, I have scheduled a meeting with to talk about .” As we were moaning, “Mo-om!” in embarrassment, she would explain why and what she was planning to say. And then, depending on whether it was a meeting we attended or not, she would tell us how it went afterwards. No matter whether it went her way or not, it taught us that we were important and that we worth fighting for. And it was an excellent model in how to fight for ourselves later. Good job on doing the same for your kids!

  • Jamie

    Amen!!! My precious little snowflakes are “normal” but have plenty of friends with challenges, physically and mentally. I will stand up for any of these kids as needed, and when appropriate. Thank you for the example you live.

  • Kat

    I completely agree, however, the questions I would ask would be these:
    1) what part of the IEP was the teacher referring to?  the entire IEP that as you mentioned is supposed to help “level the playing field”  (I would hope no teacher would suggest this.)  Let’s say it was…
    2) was it an out dated accommodation or goal that has been mastered, and my child wasn’t performing to their ability because they have something they don’t need and then if yes,
    3) show me the data that my child doesn’t need this and let’s take it to a meeting to have it removed so my child doesn’t find it as a crutch.

  • My hope is the teacher is young with a very narrow view of the world, and you will open his/her eyes to think about something differently.

    My other hope is you tell this teacher if you ever hear of him/her making statements of a demeaning and hurtful nature again, you will be contacting the principal IMMEDIATELY.

    As a teacher myself, I can tell you sometimes we are powerless to right the wrongs of a co-worker, but we LOVE a parent advocate who has ‘scorched Earth’ power & knowledge.

  • Meri

    Re: accommodations in the workplace – there’s a reason why we have the ADA in the US. Reasonable accommodations are just that, and go beyond what I ever expected. http://www.eeoc.gov/ has lots of useful information.

    I’m currently working with my state’s vocational rehab program to find a job that can accommodate my multiple disabilities and I’m going to apply through their office, disclosing that I have some sort of disability, because I want it up front that I need accommodations. The voc. rehab office has told me that govt agencies and contractors are supposed to hire a certain % of disabled people, so that may be useful.

  • dad

    Jen is not the only one that is proud of you.

  • Beth Denton

    Having been both a special education teacher AND a general education teacher, I suspect I know why the teacher was so frustrated that they said such a crappy thing. Gen ed teachers are incredibly unsupported when it comes to working with students with special needs. They’re not trained for it, their classes are suddenly up to 1/3 full of students who are more than two years below grade level, and their careers are now on the line (thanks NCLB!) if they aren’t address the grade-level standards. Even though my degree is in special education and I have taught special education, I still struggle to find the resources and the methods to support my lowest students in a way that’s engaging without being patronizing. Stress! 

    That was a little ranty, I suppose, but ultimately, conflicts like these between teachers and parents take away from the systemic problem that puts kids with special needs into the general ed setting with insufficient support. It’s a problem that parents and taxpayers need to take to their school boards, and their state boards of education, to social media and to their legislatures.

    A better question than, “how could you say that to my child?” is, “what do you really need to help my child be successful in your class without resorting to put-downs?”

    • I hear you, Beth, but without revealing too much I also feel compelled to add that the kid in question wasn’t asking for anything, really, but pointing out something which had been overlooked because the accommodation wasn’t followed (think a missing assignment because there was no written notification as requested). This wasn’t a case of asking for the moon or something really complicated, merely a polite pointing out that the problem was due to a missed accommodation (easily fixed). Soooo… I don’t know. The conversation will be happening next week, by the way, and I never intended it to be “how could you say that to my child,” but rather, “Let’s talk about 1) how these very simple accommodations don’t become a barrier and 2) how you talk to students so that a less understanding parent doesn’t lodge a complaint about you.”