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.
Short version: 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.