Friday, October 6, 2017

Are Kids with Down syndrome Stubborn?

I'm kicking off Down syndrome awareness month by reviewing the basics of Down syndrome this week. Today's topic is "stubbornness."

Many people describe children with Down syndrome as stubborn.

Personally, I hate this description. I've talked about it before in a post, but I'll review it again.

I know my daughter does some things that can be viewed through the scope of stubbornness. Sometimes, she'll sit down and refuse to move. There have been moments in school where she may sit at her desk and refuse to participate in the school task. I might tell her to do a simple task at home, but she acts as if she never heard me.

Anyone could easily say that this is a child who is being stubborn. Maybe they are right, but maybe they aren't.

I try to remember that children with Down syndrome (or any developmental disability) are complex, and behaviors are opportunities to see what else is going on.
Here's Jaycee refusing to get inside a limo on our Make-A-Wish trip. She didn't understand why we were taking a limo and why a stranger was taking our bags. 
In my daughter's case, her verbal skills are extremely delayed. She uses total communication which includes sign language, gestures, a communication device, and a few dozen or so clear words. Jaycee doesn't speak in sentences. She doesn't really ask questions either. This prevents her from verbalizing her feelings, asking questions when she doesn't understand, or requesting clarification when she's not sure what we are doing or for how long. Imagine you couldn't speak back to a person barking orders at you throughout the day. Try it for a few hours, and see what behaviors you resort to in order to get your point across.

My daughter with Down syndrome also has an Intellectual Disability. The affects how she thinks, reasons, and understands. Her brain is simply wired differently than my own. This too will have an effect on the decisions she makes. For these reasons and more, I am very reluctant to label a behavior as "stubborn."

Stubbornness is often a disguise for something else. Many people say that all behavior is communication. I do feel like this is especially true for someone who is being stubborn. By examining stubborn behavior with a different viewpoint, we can treat delicate situations with more compassion and understanding. Stubborn behavior is not a chance for us to be "hard" back to the child to get our point across, but it is a time to sit back and look for the why. The behavior may signal that the child is sick, tired, bored, needs a break, or needs more information.

We can't allow bad behaviors to continue and excuse them because of a disability, but we can look deeper for the meaning behind the behavior.

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