Parents of kids with disabilities are often forced to tolerate disrespect as the price of access to education.
In an effort to get the support services their children need, parents are often made to listen to educators and therapists describe their children only in terms of defects to be corrected. Because while Early Intervention services and Individualized Education Programs (IEPs) are federally mandated, they often won’t be approved unless the child is conveyed—with that child’s parents who love them sitting right there—in the most negative light possible.
In the aftermath of an evaluation or an IEP meeting, many parents find that it’s hard to feel good about their child, and his or her future.
If you find yourself in this place, know that you’re not alone, it’s not your fault, and there are many things you can do to reframe the situation for yourself, your child and your entire family. Here are a few things to remember:
1. YOUR CHILD IS LOVABLE JUST THE WAY SHE IS.
You can’t flunk being a toddler, and you can’t fail at being a kid. Your child is not missed milestones or deficits to be corrected. They have a body and brain that works differently, and they are learning how to use both. Sometimes evaluations and IEP meetings seem to describe a child who isn’t good any anything, but your child has something important to offer to the world. Try making a list of their strengths, their accomplishments, and things you adore about them. These things matter just as much as the impairments that make it into a clinical report.
2. DISABILITY IS NORMAL.
Disability is just part of the world. Some people can’t walk, and no people can fly. So we make wheelchairs, and we make airplanes. Feeding tubes, text-to-speech-software, visual schedules, braille, ramps, and reading lessons are tools, not tragedies. Some people need some things to learn, and some people need other things. One question worth asking yourself: What would the meeting look like (or the report say) if the system saw difference as normal?
3. THE SYSTEM IS RIDICULOUS.
Absolutely no one would look good if someone made an out-of-context list of all of their purported flaws. The stigmatizing, deficit-based language only seems reasonable because so many people treat it as reasonable. To show yourself the absurdity, try using that kind of language to describe a fictional character, Abraham Lincoln, or the evaluator who handed you that report. Try to remember, “My child is not the problem. The system is the problem. Education for kids with disabilities should just be education, not an insult.”
4. CLAIM SPACE IN YOUR LIVES FOR THINGS OTHER THAN THERAPIES.
There can be a lot of pressure to turn every aspect of family life into a therapy session. Attempts to overcome disability can easily expand to fill all available space. Try to claim some space for fun. Spend time with your child with no therapeutic agenda whatsoever.
5. YOU’RE NOT IN THIS ALONE.
Mainstream culture still has not made much room for disability. Having a disability or parenting a disabled child can be very isolating. When people keep telling you that there is something wrong with you and your child, it’s hard not to feel ashamed. The best antidote to isolation is community, and the best antidote to shame is pride. You can’t always change the whole world, but you can connect with others and change part of it. Seeing people like your child living their lives and being treated with respect can undo a lot of damage.