Friday, January 16, 2009

Down Syndrome, Children: Not Letting Them “Get Away With Murder”

(PS. A lot of this applies to “normal” children as well…)
The lovely young lady who Ricki “studies music” with stood at the door looking pale and ill. She had just returned with Ricki, rather late, so I asked “what was up”.
-“Don’t tell Ricki that I told you. She was scared that I would, so she ‘made up with me’ downstairs.”
It turns out that Ricki carelessly, and apparently not entirely unintentionally, had “stabbed” her in the stomach with her umbrella. To say that I was floored is putting it mildly. I was seriously upset at Ricki’s behavior. And concerned about the way the young woman had, effectively, let Ricki get by with less than a “slap on the wrist”.
Yesterday, Terri at Barriers, Bridges, and Books
mentions the way society isolates those with behavior problems. I have often commented… ( see here my post from June 11th) (If you haven’t been here that long, go read it. I think it is worth the pause in your visit here.) I have often commented how Ricki’s most disabling feature is her behavior. And, unfortunately, through the years, I have often felt very much at odds with staff and therapists who have condoned bad behavior, or basically given such mild reactions that Ricki realized that she can get away with it.
I confess that I myself have often unwittingly condoned misbehavior by simply saying that I am upset, telling her I expect better. For Ricki, perhaps due to her ADHD, but I suspect that this goes for many many children – a verbal reprimand is not enough. When her quest to be independent is combined with her desire for whatever she is doing at the moment, it is simply more important than a “tisc-tisc” from me. This is especially true since she is confident that we will “make up” soon enough. For children like Ricki, some type of consequence is imperative, or the behavior will continue “ad infinitum”, and often escalates as well. This consequence can even be the losing of a promised prize for good behavior, as long as the prize is truly desired. [After all, the best behavior modification programs usually center on rewarding good behavior rather than punishing bad.]
As Terri notes in her post, people tend to exclude those with behavior problems, instead of working to fix the behavior. Often parents, often staff, and probably usually both, are at fault. If there are behavior problems, a serious program to eliminate the behavior has to be set up and worked on. Because it just won’t disappear on its own.
And a final note. Parents of younger children, already loaded down with all sorts of learning goals and therapies, may allocate scant time and energy to behavior problems. There are two very big reasons to reconsider the emphasis:
First, a child who misbehaves is very hard to teach.
Secondly, when your child is young and misbehaves, you can drag him out, screaming, if needed. When the child grows up, they may well be heavier than you. You simply can’t force compliance any more. When that happens, the “monster” behavior our laziness has created is a horrible thing. It is the most isolating, confining thing around.

PS. The incident with the music teacher happened 2 weeks ago. This week Ricki went to the store with her and acted atrociously. (She grabbed more of a baked good than agreed on beforehand.) The young lady was firm and consistent, and definitely planned consequences. Good!


Monavie4life said...

Hello Ricki's Mom,
I couldn't find your name anywhere, SORRY, but loved reading your info. I too am the mother of a son Zach, 19 who has Down Syndrome. He will be graduating in May and works part time at a local grocery store. We live a little north of ATLANTA, Georgia
We also had alot of behavior issues from grades 3-8 with ZACH. All I can say is hang in there "THIS TOO SHALL PASS"
Where are you from in the US?
Look forward to hearing from you!!
Debbie Pressley
pls email me at

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Anonymous said...

For parents of defiant teens I would recommend looking into one of the many teen behavior modification programs.

rickismom said...

Definately. I use behavior modification whenever I realize that it isn't going any other way. So I pull myself out of my laziness, and do some planning. It invariably works, if not right away, than after further modifications.....