To those who see, know, or love a special needs family-
A friend of mine messaged me recently about the extreme behaviors her child with an intellectual disability was displaying. Something, I’m familiar with. But she followed it up with saying, “My family thinks I don’t discipline him enough. They don’t get it.”
She’s right. They don’t. They can’t.
So, let me help you try to understand our families just a little bit better.
The behaviors are something many of us parents are constantly managing. We’ve gone to classes, we’ve read books, we’ve tried strategies, stopped those strategies, and started them again, stopped again, found a new method and…repeat.
Our kid’s behaviors also come in waves. My son went into a downward trend after Christmas that lasted through February. Then one day it stopped.
Nothing we did, to my knowledge, brought him out of it. We managed symptoms, but did not provide a cure.
For now, this is part of his life. And we are trying. My friend is trying. We are all trying.
Sometimes our trying looks like taking a more hands-off approach and sometimes it’s more hands-on. Sometimes it looks similar to how we parent our typically developing children, and sometimes it looks starkly different.
We understand our kid’s communication issues are frustrating to them. They respond in ways that don’t make sense to the outside world, or even to us. But they are trying too.
Living for them often takes more effort. Parenting them often takes more effort.
So, when you think we should be doing more to intervene, know that our current way of dealing might be doing less. If you think we are being too harsh, maybe our kids are more capable of understanding than you realize.
The bottom line is we are parenting disabled children in a world that is not accommodating to them.
We are trying to figure out how to best accommodate them.
Sometimes, they are exhausted. We often are, too.
We want the world to have high expectations of our kids, while also realizing that they need more support and grace in the process.
We try to remember these things ourselves. And it is a constant balancing act.
We know you can’t know our lives. But know this: we are always trying.