A friend of mine messaged me recently about the extreme behaviors her child with an intellectual disability was displaying. It’s something I’m familiar with because of my child with Down syndrome. We exchanged stories back and forth, finding a way to laugh in between. But she ended our conversation by saying, “My family thinks I don’t discipline him enough. They don’t get it.”
She’s right. They don’t. They can’t.
I’ve dealt with this, too. Friends and strangers alike have asked, “Why don’t you try this?” They don’t know I already have.
So, let me help you try to understand my family and others like ours just a little bit better.
The behaviors are something many of us special needs parents are constantly managing. I’ve gone to classes, read books, tried strategies, stopped those strategies, started them again, stopped again, found a new method ... and repeat.
Our kid’s behaviors often come in waves. My son went on a downward trend after Christmas that lasted through February. He would “drop-and-flop”, a move where he goes limp and refuses to move. He dealt with his boredom and tiredness by making messes around the house. Although he is potty-trained, we would have to coax him into not holding his bladder and to use the restroom. He still does these things intermittently, but during this period it was managing one behavior after the next for most of the day.
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 I am trying. My friend is trying. Us special needs parents are all trying.
Sometimes my trying looks like taking a more hands-off approach and sometimes it’s more hands-on. Sometimes it looks similar to how I parent my typically developing children, and sometimes it looks starkly different.
I understand my son’s communication issues are frustrating to him. My husband and I are doing the best we can to give him the tools he needs with speech therapy and other methods. We are seeing improvements. He is a happy, fun-loving child. But when his frustration bubbles up, he responds in ways that don’t make sense to the outside world, or sometimes, even to us.
For now, living takes him more effort. Parenting him often takes more effort.
So, when you think I should do more to intervene, know that my current way of dealing might be doing less. If you think I am being too harsh, maybe my child is more capable of understanding than you realize.
The bottom line is I am parenting a disabled child in a world that is not accommodating to him.
I am trying to figure out how to best accommodate him.
Sometimes, he is exhausted. Sometimes, I am, too.
I want the world to have high expectations of my son, because he is capable of much. I also want the world to realize he needs more support and grace navigating life right now.
I try to remember these things myself. And it is a constant balancing act.
I know you can’t know my life, or my friend’s. But know this: we are always trying.