I had wanted to find Hope a new shirt for Down Syndrome Awareness Month in October but got sidetracked when Amazon offered up an incredible book in the search results. Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method, by David Stein, Psy.D. of Boston Children’s Hospital, has become our ultimate reference book for all things curious and puzzling regarding our not-yet-reliably-verbal (but holy cow, communicative!) toddler.
By the grace of God, I stumbled on this book right when we’d hit an all time low. Hope was scratching and pinching anyone within arms’ reach, including herself. Anyone who knew anything about child development—therapists, parents, everyone—shared the obvious: Hope was frustrated. We agreed. But her frustration was wearing us down to the point where we were equally frustrated. And when Hope would pinch herself I would plead with her to stop, sometimes even crying because it was devastating to watch. At the end of the day I found myself nervous and uncomfortable going into our bedtime routine, knowing that during a change or hair brushing that I was going to be too close to avoid more pain.
At a workshop with Stacy Taylor and Amy Allison through The Valley Hospital’s Joey Center back in May, we learned about positive and negative reinforcement, where regardless of what the parent provides or takes away, behavior is reinforced when the child receives something they want (e.g., attention). However, it wasn’t until reading Supporting Positive Behavior this Fall that what we’d learned about in the workshop really clicked: Every time I cried or pleaded with Hope to stop, I wasn’t rationalizing with her like my desperation insisted, but instead I was reinforcing her behavior. So what were we going to do about it?
There’s enough chatter among friends, social media, books, and internet search results to know that our children are visual learners, and having heard plenty of times about visual schedules, I set out to make one. The advice laid out* in Supporting Positive Behavior was compelling, but I quickly realized this task would be too daunting and instead looked for one that was premade. However, finding a set that was both developmentally appropriate for my 2.5-year-old and complete enough to punctuate our day was much harder than I expected. Then I found SchKIDules.
Everything about SchKIDules is perfect and I can’t recommend the system enough for anyone in our developmental range. First, the pictures are interesting yet easy to understand; they are made for a child and are simple and bright. Second, there are boards to stick the magnets to that are tailored to the child’s developmental level. Children first comprehend lists vertically, from top to bottom, before understanding left to right, so it was important that we selected the vertical strips and not a big board. Third, the quality is fantastic. I wish the strips were sturdier, but the magnets stick well and are easy for small, hypotonic hands to place on and take off. Finally, the range of activities on the magnets make this a set we will be able to use for years to come, if we need, and if one gets damaged along the way, we can replace the magnets à la carte instead of having to purchase a whole new set. We’re even working on sight reading! An added benefit I wasn’t expecting.
Introducing the Visual Schedule
So back to the task at hand, what was frustrating Hope so much that she was resorting to these physical behaviors? After pinching me she would feel sad and cry and sign “sorry” before giving me a hug, which I of course always accepted but wished I could receive under different circumstances. It was as if she was unable to stop the behaviors and herself didn’t like that they were infiltrating our daily routine.
Aha! And that was it. What was it about our daily routine that was upsetting Hope so much?
Lack of control.
Well, I’m not about to let Hope brush her own hair before leaving the house or eat crackers and cookies all day. And there was something unreliable about our once failsafe strategy of offering Hope choices—often she would simply choose the last item or activity offered, which wasn’t always what she wanted and would still result in a negative behavior. So what parts of the day could we let Hope control?
We decided that in many instances, the order in which things are done can be something Hope controls. For example, her morning routine might be set up in the following order, because to me this makes sense:
- Drink milk
- Eat breakfast
- Toy time
- Get dressed
- Comb hair
- Brush teeth
I know that first thing in the morning Hope is going to want to drink her milk and then eat breakfast. But is it a tragedy if she eats breakfast before drinking her milk? Or would it be horrible if she brushed her teeth before getting dressed? Giving Hope this small bit of independence was all she needed to break free of the pinching and scratching. The change in her behavior was truly this miraculous, thanks to our visual schedule!
How the Visual Schedule Works in Our Home
We set up a small portion of her day—maybe 3 to 5 tasks—on the vertical magnetic strip and prompt Hope by saying, “Check your schedule.” No matter where we are in the house, she walks over to her schedule and makes a choice by removing a magnet and either handing it to an adult or placing it where it makes sense. For example, if she chooses “dinner,” she will likely place the magnet on the kitchen table and then pat on her high chair and ask for help to get up into it. If she chooses “toy time,” she will stand at the gate of her playroom and instruct an adult to “open.”
And so of course where things could potentially be simple, we’ve complicated them by now having to travel around with these magnets in a Ziploc bag. Hope can do without them, but the consistency they provide when we travel or are otherwise throwing off her routine but need her to have good behavior is well worth this small extra bit of effort.
*I wanted to provide you an excerpt from Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method, but I’d likely be infringing on copyright because I couldn’t narrow down a section small enough to safely share without permission. That’s how incredible this book is—it’s concise and free of fluff. When you buy it, which I implore you to, this can all be found in chapter 5, specifically in step 3, although the entire chapter is really very helpful.