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.

Why I Don't Say "Stubborn"

There are some words that just really bother me. Stubborn is one of them. I often hear parents, teachers, doctors, therapists, and really anyone refer to a child with special needs as "stubborn." I personally cringe when I hear this word, especially when it's a person who has a lot of direct contact with the child.

My favorite source, Google, defines stubborn this way:

having or showing dogged determination not to change one's attitude or position on something, especially in spite of good arguments or reasons to do so; difficult to move, remove, or cure as in "removing the stubborn screws."

Does a child with special needs choose to disobey because they have a difference of opinion? Do children with special needs choose to not listen to good reasons to complete a task?

 

In the special needs world, it seems that people use stubborn to mean this: when a child with special needs refuses to do something that you want them to do.

 

This common special needs definition has an entirely different meaning than it's true definition. Kids are labeled as stubborn because they refuse to participate in therapy. A child is labeled stubborn because they refuse to pick their pencil up and begin writing. A child throws himself down because he doesn't want to leave the park and is called stubborn.

 

Is this a fair description for children with cognitive delays, poor language skills, and special educational needs?

 

I have always felt that calling a child stubborn is just an excuse for the adult to not do anything differently. Stubborn means that the problem is all on the child and not on the adult. Stubborn insinuates that the child has a behavioral issue that must be dealt with, sometimes harshly, in order to bring about the desired response. Calling a child with special needs "stubborn" sometimes leads to lazy adults. In that I mean, the adults keep approaching the same issue the same way with the idea that one day the child will submit to discipline or authority in time.

 

I'm not saying that there isn't a stubborn child with special needs out there. I'm just saying, I rarely label a behavior as stubborn. Instead, I describe the behavior and circumstances that I see (i.e. This child refuses to do writing activities...) and look for reasons for the behavior (...because they have large fine motor delays that make grasping a pencil hard). A few years ago, I learned the common phrase: All behavior is communication. I don't always see refusals and "stubbornness" as a behavioral issue, but I see it as the child trying to poorly communicate something he dislikes, feels, thinks, or doesn't understand.

 

Here are some instances of people calling Jaycee stubborn & my interpretation of the event:

-"Jaycee was stubborn and would not stack the blocks on command." Jaycee was not stubborn, but she was unable to follow 1 step directions and could not physically stack blocks at the time due to fine motor delays.

-"Jaycee is being really stubborn about taking her medications." Jaycee knows her normal medicines and realizes that there is a new medication. She doesn't understand what the new medicine is and is fearful that it will taste bad.

-"Jaycee is so stubborn. She refused to do her school work for an hour today." Jaycee hates certain subjects at school. She is not motivated to do them nor does she probably understand why she needs to do the work.

-"Jaycee wouldn't get up and move when I told her it was time to leave. She's stubborn!" Jaycee didn't want to leave. Jaycee has poor communication skills and has no way to say no or I don't want to. Her sitting and refusing to move is her way of protesting.

 

I'm not making excuses for bad behavior. But, I want people to look at stubborn behavior as something that signals a need for change. Does the child need more motivation? Does the child not understand? Is the work too hard or too easy? Does the child need a better way to communicate likes and dislikes? In other words, is there something the adult can do to help decrease these "stubborn" behaviors so you both get the desired result?

So, that's my thoughts on the word "stubborn." Please use this word with caution!