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Behavioral Issues and Down syndrome

Moxie, my daughter who has Down syndrome, has recently had behavioral issues at school.

A bit of background: Moxie goes to The Best School Ever. She has a wonderful, caring teacher and Moxie’s aide is a lovely woman whom Moxie has known and trusted for years now – ever since we first moved to the Lost Coast.

In a nutshell, the situation is as good as it gets: Moxie’s in a fantastic environment for her, she loves her classmates, she has friends, she is learning and really thriving.

So, Moxie up and starts saying, “no”

As in, saying “no” to her teacher and her aide’s requests for her to behave, sit down, etc. Just flat-out “no” and continuing with what she (- Moxie!) wanted to do.

We’ve had IEP meetings of course, and while we’ve covered speech and general assistance in them, we’ve never covered behavior. We also haven’t covered some of the other pieces that I’ve found are pretty common to cover with kids with Down syndrome.

We didn’t have an IEP to turn to with this new behavioral development of Moxie’s, and all of us were kind of stuck: what to do??

First, I turned to my parent tribe.

No one ever gets this stuff like someone else who has walked it. Parent-Tribes of kids with Down syndrome rock!!! I’m so grateful for the people who have gone through this already and are ready and willing to share their hard-won wisdom with me.

Educational Strategies for Children with Down Syndrome – this is a closed Facebook group with some 6,000 members. A wonderful group to belong to (and that I have mentioned on my resources page). I checked in with the group about Moxie’s behavioral issues and asked them for advice. Almost immediately, I received numerous comments with very helpful tried and true ideas and advice.

With this in hand, I turned to The Book: Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method

Supporting Positive Behavior in Children and Teens with Down Syndrome

This is a “must-own” for the parent of a child with Down syndrome. It covers the fabulous “flop and drop,” bolting, and other common issues experienced in raising people with that extra chromosome.

It’s short, an easy read, and jam-packed with useful tips. This is hands-down the most useful book that I own in helping me raise my child with Down syndrome. Many of the tried-and-true ideas and advice that came from my parent tribe matched what The Book said, so I summarized it all into a plan and gave it to Moxie’s teacher and her aide.

The plan goes like this:

The problem:

Moxie will refuse to do something as asked. She may become upset and frustrated.

Some solutions:

  1. Create a visual schedule

Create a chart of the class schedule… in pictures. Have an arrow or place holder which moves to each section as the day progresses. Moxie as a visual learner, will have a better sense of what is coming and what to expect.

  1. Create a visual chart for transitions

For each transition area and/or time that Moxie might usually have difficulty in working, give her a visual check – a sticker, etc. Have it clearly outlined that after so many stickers, she will get a prize (for example, place a gold sticker at the end). Rewards that work at home are time with mommy or daddy – such as mommy will watch her favorite show with her, or do art together. What could work at school could perhaps be taking a swing ride with her aide or  having special time with her teacher? She craves the attention and social interaction more than anything.

  1. Use a clock/timer/hourglass/bell

Use a clock/timer/hourglass/bell to signal “changing activities is 5 minutes” “Look, we have 2 more minutes so lets start our clean up now.” etc. She could have a paper clock on her desk to signal “Time for reading” and she can compare the pictures on her paper clock to the wall clock” Lots of kids have trouble with transitions and they simply need more cues to change.

  1. First/Then

Implement the “first/then” system. Which is, “first we sit, THEN we color”, or “first math, THEN recess.” You may need to word it in ways that work for her, just being sure to keep the “first, THEN”. She tends to resist or try to bargain, but then will work it out and make it her own, usually repeating it back like it was her idea.

  1. Positive Praise

Tons of positive praise works better with her than chastisement. She will stop caring if you chastise too much, but she’s eager to work with you with lots of praise and focus on what she’s doing right. So, tons of praise for doing the right thing when that happens, and make a huge deal out of sitting, following directions, completing a task. That can include high fives, a pat on the back, and verbal announcement of how hard she worked.

  1. Breaking Tasks Down and Restructuring

It’s recommended that her educational tasks are interesting and include visuals and manipulatives. Sometimes things need to be broken down into smaller steps with breaks for success.

Moxie may not have the same stamina for focusing on a task as typically-developing peers, especially if it’s a non-preferred activity. So spending a shorter amount of time on the task and then moving on to a few easier related tasks that are more fun. For example in writing, she can provide most verbal information on what to write. The actual writing is more challenging, so Moxie could trace the words and then after finishing a few sentences or a page, she could perhaps move on to letter tracing with a marker, and then some easier tracing sheets.

  1. Respond, but Don’t React

Moxie does some negative things because she enjoys the attention and reaction she receives from you – even if it’s negative. Bolting, refusing to comply could all fall under this. This is because, like many people with Down syndrome, she is highly social and tuned into you – you are often the reward, even if you are only giving her negative attention.

When she does something along those lines, you should:

  • Take away eye contact
  • Keep your facial expressions neutral
  • Speak very little, if at all
  • Keep your tone of voice neutral
  • Keep your emotions under control
  • If removing attention and emotions is not enough, direct Moxie to “take a break”

And you should not:

  • Look right at her
  • Make angry, upset faces
  • Try to explain, using words, why what she did was wrong
  • Speak in a hard or animated way
  • Show strong emotions

When you remove the emotions and attention, it’s not as fun for her and she stops the behavior.

  1. Keep in Mind:

Things that tend to work well with people with Down syndrome:

  • Predictability
  • Structure
  • Visuals

What doesn’t work well:

  • An unpredictable environment/not knowing what to expect next
  • Lack of routine or structure
  • Explanations given with speech alone

It would be good to keep a Behavior Log so that you at school can let us know what is working and not working, and we can do the same. It’s very important to keep our methods consistent.

We’re still working this out – Moxie’s teacher and her aide are testing this all out with her, and seeing what’s a fit.

I’m excited to keep the learning and experimenting up, and figure out how best to continue to help this awesome little girl flourish.

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  1. This is a well timed post – my four yr old with DS is getting to be a “fournado” rather than her usual amiable self. She’s always been stubborn, but with some things now, she is persistent and obstreperous to the point of (my) despair.
    Thank you for the suggested read. I hope your sweet girl responds happily to your strategy.

  2. Thanks for this post, love knowing about a new book/resource that my family and I will be able to read and understand with useful information. Found you on Love that Max link party.

  3. Clara Kelley says:

    You know what’s fascinating, is that my daughter with ADHD has some similar struggles. It was worse two years ago, certainly, but she still does much better with praise and sometimes struggles with transitions. It’s fascinating to me how non-neurotypical kids can be similar. And so different, of course, too!

  4. jwilsonspan says:

    Flop and drop…..yes!!! You made me laugh out loud. I’m sharing this post with my FB support group for parents of children with extra needs, and not just Ds…because I think many of them can relate to these and might be able to implement the strategies suggested in the post.

  5. Thank you! I have been looking for this resource for my son with Down Syndrome. Although he gets ABA at school its often a fight during transitions and unpredictable tiimes. Learning to respond but not react is extremely hard but so worth the reminding. looking forward to reading this book.

  6. Anonymous says:

    Hi, I am in a toxic relationship with a man I am trying to leave. He recently got involved with a woman with a 20 year old son with down syndrome. This week the 20 year old became angry and did considerable damage to their home. The mother screams and swears at him and leaves him alone when she is sleeping with the guy I am involved with. During this rampage the guy I am with shoved the 20 year old up against the wall and slapped him. The entire situation is awful and I am considering reporting them for abuse. I feel they think the 20 year old is in the way of these 2 sociopaths and they want him committed just to get him out of the way. I am economically abused at 62 and working on a financial plan to be able to leave this nightmare.

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