parenting disabled kids

A piece of advice for parents of kids whose disabilities are starting to become apparent.

You’re probably going to have to deal with a lot of people who don’t respect your relationship to your child very much. You know a lot about your kid, and you’re probably going to have to deal with a lot of people who treat you like nothing you have to say matters.

You’re also probably going to have to deal with well-meaning people who say things like “you’re the expert on your kid!!!”. This sentiment can be affirming in some ways when people aren’t taking you seriously, but it can also be toxic.

Taken literally, “you’re the expert on your kid” isn’t true — and it doesn’t need to be. Even aside from disability, kids are complicated. No parent understands everything about their kid. Every parent faces confusing situations, and every parent makes mistakes. Parenting kids with disabilities tends to mean being confused more of the time. That’s ok. You don’t need to be a perfect expert on your kid. It’s both impossible and unnecessary.

There will be times when you have absolutely no idea. When your kid is struggling and you don’t know why, and strategies you’re trying aren’t working. When that happens, you’re still your kid’s parent, and the relationship still matters. You’re not going to be an expert on every aspect of your kid at all times, and that’s ok.

Sometimes when you don’t know what to do, others have useful ideas. It’s worth being aware that good strategies tend to get developed in silos. If you’re only looking in one context, it’s worth trying more. For instance, there are things medical/therapy professionals often know, things adult activists living with the same disability often know, things teaches often know, and so on. It can also be worth looking outside of your child’s disability group — resources intended for one disability are often helpful for another, and groups don’t always talk to each other.

(This goes double if your child is autistic. Nothing disabling about autism is completely unique to autism; all of it’s shared with some other disabilities. Resources associated with other conditions are often better (and less behaviorist.).

All that said — you will probably face situations in which none of that helps. Sometimes you’ll seek out all kinds of perspectives and still find that nothing you’re aware of helps enough. When that happens, you may attract people who give you a lot of bad advice loudly. When you’re worried, it can be hard not to believe people who yell at you and tell you that they are experts.

Don’t get psyched out by professionals who try to convince you to stop thinking for yourself. They’re good at sounding right in intimidating ways. They often do not actually know what they are talking about. And ultimately, you are your kid’s parent, and all parents are clueless sometimes, all parents make mistakes, and you and your child are allowed to be human.

Similarly, as your child grows up, they will grow apart from you in some ways. That’s how kids are, and that’s part of how maturity works. Teenagers do things that their parents don’t understand. All the more so, adults do things that their parents don’t understand. Even in childhood, no one can really be a complete expert on another human being. Disability doesn’t change that. It’s not going to be possible to be an expert on your kid, and that’s ok. They’re a person, and so are you.

Tl;dr “You are the expert on your kid” is too much pressure. There’s a grain of truth, but it doesn’t reflect reality — and it doesn’t need to. There are a lot of unsolved problems in disability support — and in any case, no human being can really be an expert on someone else.

If you’re feeling bad about your kid after an IEP meeting

Content note: This is directed at parents, and it’s about mitigating damage that can be done by the stigmatizing language in the IEP process. It expresses sympathy towards parents who are feeling things that can be harmful to disabled kids (as well as a call for parents handle those feelings constructively). This post may be triggering to people with disabilities who have been harmed by these kinds of attitudes. 

The IEP process can be really hard on kids, parents, and families. In order to get your kid the services they need, you’ve probably had to describe them using some awful language. It likely violated every one of your instincts about how parents ought to describe their kids. You may have had to do it anyway, in order to get your kid access to education.

It’s pretty normal to feel awful about either yourself or your child after describing them in such negative terms or allowing others to do so. It’s wrong, and it feels wrong, and you often can’t do anything about it — and it often comes along with pressure to believe that this is being caused by your child’s disability. If you’re finding that you feel that way, it’s important to do something about it. Kids are generally very aware of how adults in their lives feel about them. Feeling that way about your kid on an ongoing basis is really damaging to them and to your relationship with them. Don’t beat yourself up; do find ways to mitigate it.

It can help a lot to remind yourself that nothing about your child’s disability causes this kind of language. No child should ever be described this way, including yours. They’re not being described this way because of the things they can’t do — they’re being described this way because the system is ableist and often unwilling to respond to disability constructively. It’s not their fault, and it’s not your fault — it’s an awful fact about our culture’s attitudes towards disability.

You wouldn’t say that a baby is failing because they’re not talking — it’s just part of being a baby. If someone said that a typically-developing eight year old was failing because they can’t write 10 page papers, most people would be outraged. Your child’s development isn’t failure either, and they deserve appropriate education without stigma or panic. They are allowed to have a body and a brain, and they deserve to be respected as a human being. Language that treats them as a collection of deficits is cruel, and doesn’t reflect reality.

Your child’s differences aren’t a failure. Their development is what it is, and that’s ok. It’s ok to be different. It’s ok to have a disability. It’s ok to need appropriate education. Their need for appropriate education is not failure, it’s just that you sometimes have to cooperate with a system that wrongly describes it that way.

One way you can show yourself that it shouldn’t be this way is to write a better description of your kid after the fact. Rewrite what your child is learning, and what you’d like them to learn. Write about what the barriers are, and what kind of help they need. Write about their rights, and where you see that they might be violated. Write about them as the child who you know and love, not a collection of scary deficits. (It can also help to write down ten of your favorite things about your kid.) Their disability does not call for freaking out. It’s just part of who they are, and that’s ok.

Tl;dr IEPs describe kids using cruel stigmatizing language that doesn’t reflect reality. Having to cooperate with them anyway can do serious damage to parent-child relationships. Rewriting a new and better description of your child can help to mitigate this damage.

Reader suggestions for non-ABA help for autistic children

Content note: I wrote a post a while ago about resources other than ABA for autistic children. Here are three more suggestions from an anonymous reader:


To the mom against ABA:Try getting him lessons in things he enjoys. They’ll teach him structure while letting him know his interests are important to you ( autistic kids’ interests are often discouraged if they have “too much interest” in them)

For the mom not wanting ABA: I’m autistic. When I was young, my parents put me in horse riding lessons and voice lessons. The horse lessons helped me develop communication skills, which in turn helped me communicate with other humans better.

For mom who doesn’t want ABA: Taking voice lessons helped me with pronunciation and tone of voice by teaching me to match pitches, which is how I learned to apply tone of voice by mimicking how others sounded when they said certain things.

realsocialskills said:

I like these suggestions. I think they’re not necessarily for everyone, but could be amazingly good for a lot of kids. Thank you, anon.