Book Recommendation: Supporting Positive Behavior in Children and Teens with Down Syndrome

Sometime around age three when Grace started attending preschool, something shifted in her. She was testing her boundaries. She was saying “no.” She was exercising her free will (gasp!). On the one hand, yay! This is developmentally appropriate for a three-year-old. On the other hand, having a child who no longer acquiesces to her mother’s every whim does make things more interesting, doesn’t it? More importantly, for Grace to be successful and safe in our family, friendships, school, and society, she, like all children, had to learn when boundaries are appropriate and necessary.

I don’t remember how I found out about Dr. Stein’s book, Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method* but I’m so grateful I did. This is my first book recommendation because Dr. Stein’s approach is rooted in research about children with DS, and the strategies are simple to understand and practical to apply. Added bonus: this little book is concise! Which means you don’t have to spend too much of your precious time reading before being able to institute the valuable strategies within.

A clinical psychologist, formerly of Boston Children’s Hospital, who founded New England Neurodevelopment, LLC in 2016, Dr. Stein is clearly not only knowledgeable but very experienced in working with people with Down syndrome.

His approach is based in the DS phenotype, which enhances its validity in general application and increases probability of success. Dr. Stein takes some time to discuss aspects of the DS behavioral phenotype and how they relate to promoting positive behaviors. These characteristics include:

  • Strengths in learning visually relative to learning auditorily
  • Strengths in receptive language (understanding) relative to expressive language (communicating)
  • Strengths in social engagement and interaction
  • Strength in learning through repetition
  • Need for executive functioning support (e.g., impulse control)
  • Preference for routines

What’s inside?

In approachable language, Dr. Stein briefly discusses behavior management theory and defines important terms to prepare the reader for the rest of the book. He describes behavior issues common in children with DS and how to use his “respond, but don’t react” method to reduce challenges at home, in school, and in the community. While his primary approach is proactive, he also provides constructive ways to respond to behaviors after they have occurred with examples that help to clearly illustrate his points. He additionally includes strategies for maintaining positive behaviors over time, including use of visuals and reward systems. A separate chapter on the role of siblings underscores Dr. Stein’s insights into the lives of families with DS, where effects on siblings can be complicated.

After discussing the applications of his approach in childhood when “acting out” predominates behavior issues, Dr. Stein addresses the internalizing behaviors (social withdrawal, anxiety, depression), which research shows predominate in adolescents with DS.  

What I love about this book:

  • Dr. Stein clearly explains his approach in a way that is easy to implement.
  • The focus is on proactive prevention of behavior issues, but it also gives tools for dealing with behaviors that may arise despite prevention.
  • It’s effective. In my experience, the ideas have worked to promote positive behaviors and reduce negative behaviors in my daughter. No method is foolproof or resistant to bad days, but I have found much more success than not with this approach
  • It’s sympathetic. Dr. Stein recognizes how challenges faced by children with DS, relative to typically developing peers, (e.g., difficulty expressing oneself, energy spent trying to control impulses) may lead to fatigue and frustrations from which undesirable behaviors may stem.
  • Have I mentioned it’s a quick read? I love a nice, small book that feels manageable. It is packed with practical information without fluff.

Challenges with Dr. Stein’s Approach

The limiting factor in this strategy is the adult’s behavior! For me, remembering to be patient and keep my giggles or temper at bay can be the hardest part. If I can put on my big-girl pants and control my own impulses when applying this method, I have immense success fostering positive behaviors in my daughter.

Not Just for home

As I read this book, I continually thought about how valuable it would be for Grace’s teachers and therapists in kindergarten next year. Telling people to not react when Grace flashes her big, beautiful smile and yells “MUSICA!” for no reason at all doesn’t hit home until they’re trying to get her to focus on something two minutes later, and she’s still content to get the half-hearted chuckle and fading grin they’re politely giving her after the one hundred and fifteenth time (give or take) she’s repeated it. By then, it’s too late. MUSICA!

It is surprisingly difficult to effectively describe this approach to other people by just telling them to “respond, but don’t react.” Our kids are cute! They’re charmers. We know based on the DS behavioral phenotype that they are skilled in using their social strengths to, let’s be honest, manipulate people.

No matter how concise a book, though, I’m not sure how receptive people would be to me handing one over and asking them to read it “just” for dealing with my kid.

I would definitely recommend reading the book to get a comprehensive understanding of the approach. However, there are two abbreviated resources available online that give introductions to Dr. Stein’s method: this Practical Guide for Parents from Children’s of Boston, and this 2012 PowerPoint presentation.

If you’re more of an auditory learner (we all have our learning strengths and challenges!), Dr. Stein has discussed his approach in two podcasts with the Children’s Hospital of Pittsburgh (Part 1, Part 2) and also with the moms over at The Lucky Few podcast.

As an added benefit, Dr. Stein’s book applies not only to children with DS. The learning theory and behavior management strategies are universally valuable in promoting positive behaviors across children, as we have discovered with our typical daughter.

Overall, Dr. Stein’s research-based approach to promoting positive behaviors is intuitive, practical, and easy to implement. We have seen great results in our home, and I would highly recommend this valuable book for anyone who lives or works with a child with Down syndrome.

*As an Amazon Associate, I earn from qualifying purchases. That means that if you make a purchase through this link, I may earn a commission of a few percent. Thanks!

5 thoughts on “Book Recommendation: Supporting Positive Behavior in Children and Teens with Down Syndrome

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  1. What great advice. And not just for DS kids. It’s so hard with any kid to not giggle when they repeat or try to say “big people” words. Also, I think donating the book as a resource to a school’s library or therapist’s office would be welcomed. They likely don’t have the funds or the bandwidth to be able to buy and locate all the great resources for all of the types of students they have to deal with. 💜

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