When I gave feedback as a teacher to parents with a student who misbehaved I always used a “complement sandwich.” It went something like, “Johnny always helps his friends with map skills, but he often talks out of turn. I know he’s a smart young man and can learn to raise his hand first when others are talking.”
So, when I think about my own smart young man’s behavior, I’ll start with a complement sandwich. Just this week, the bus driver told me “Troy is the most polite boy he’s ever met. He’s always saying please and thank you; most kids twice his age don’t do that.” I blushed instantly. My child is amazing, I thought. That same day I got a call from his teacher. Troy has been pulling off his shirt at circle time. She had to threaten to throw it away, before he would stop. Oh, dear!
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Troy is an amazing kid, but he’s also VERY impulsive and loves to get attention (any kind of attention). If you’re thinking this sounds like most 4-year-olds, you’re right. Still, Troy’s persistence in impulsivity, avoidance, and negative attention-getting trumps most preschoolers. When I compare his behavior to his typical twin’s there’s one big difference: the threat of consequences in one moment doesn’t occur to Troy the next time he decides to exhibit the same behavior. He just doesn’t remember, or doesn’t care.
In fact, 30% of children with Down syndrome have behavior problems. Left untreated, these behaviors often cause problems with keeping a job and living independently as an adult.
I’ll be honest, sometimes Troy’s behavior drives me crazy. When he’s thrown food he doesn’t like for the hundredth time or decides to do the “lumpkin” right in the middle of Kroger because he doesn’t want to leave I often just want to SCREAM. That’s why I bought a new book especially targeted to behavior of kids with Down syndrome called “Supporting Positive Behavior in Children and Teens with Down Syndrome” by David Stein. I was lucky enough to also see the author speak at this summer’s National Down Syndrome Congress‘ Convention in Sacramento.
I often don’t know what to do about Troy’s behavior in the heat of the moment. Stein says that’s normal, and when you don’t know what to do think about your relationship with your child. Do they feel safe? Can they communicate their needs in some way, whether it’s verbal or through a visual? Stein says the most important factor in our loved one’s development is their relationship with parents or guardian. Attachment helps your child stay regulated and motivates them to do their best.
When Stein spoke about the “brain-based reasons” for misbehavior in children with Down syndrome, I realized why Troy was so different than his typical twin. He explains that their are “key differences in the frontal lobe, hippocampus, temporal lobe, brain stem, and cerebellum that leads to different functioning in: communication, social engagement, the “social-emotional radar,” information processing, motivation, and executive functions.”
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The best advice I got from Stein’s book and workshop was his “respond, don’t react method.” It’s a simple concept that’s not always easy to implement. He gave 4 tips for setting our family up for success:
- Establish routines (we do this already, because I’m an obsessive routine person…and it really works for Troy)
- Visual schedule (I wish I was better about implementing this. We do have a food schedule that Troy loves. This takes a lot of planning and prep work. I could use one for when we’re out and he doesn’t want to leave)
- Brief, simple language (sometimes Troy just doesn’t understand what I’m asking him to do when he’s upset or I don’t understand him)
- Keeping emotions in check (this is the hardest one; I always feel like Troy is misbehaving to upset me…logically, I know this is untrue, but it’s hard to remember this in the heat of the moment)
Stein says it’s important to think ahead of your child’s common behavior problems. I finally did this when Troy’s “lumpkin” situation got out of hand. He’d fall to the ground and weigh a thousand pounds any time he didn’t want to leave the pool, library, park, etc. I created a simple visual schedule for his most common destinations. For example, at the pool I showed a picture of the pool, then the shower and dressing room, then eating a granola bar in the van, then watching his favorite show at home. I told him if he could watch Jake and the Neverland Pirates if he just followed the steps. He loved the visual schedules and it solved the problem for those locations.
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Everyone wants a quick fix when it comes to behavior problems. Like anything else though, it takes time and thought. All your problems will not be solved overnight, but Stein says you’re looking for long-term positive change. I highly recommend “Supporting Positive Behavior in Children and Teens with Down syndrome.” It’s a thought-provoking book, that you’ll come back to again and again.
Thank you for this! Harrison does the “lumpkin” thing, too, and we are often at a loss of what to do. He really likes to do it in the middle of the parking lot or road 🙁 This book sounds great; his school is actually going to start doing the visual schedule. They are even making one for us at home!
I got the “lumpkin” term from Troy’s private speech path, who always tells me the most hilarious stories of her sister with Ds falling to the ground and weighing a thousand pounds…the name stuck! The visual that we used when we were out was really simple and only 1 page. Now, he’ll do the lumpkin in new places, but often just talking to him about what comes next helps. We got our food schedule from Troy’s speech path at school too. I should use visual more often…I know they would help, but I often forget about them.