Trisomy 21: Bryant’s Story
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It was one year into the pandemic when our son Bryant had his annual visit with CHOP’s Trisomy 21 Program. During our visit Bryant was a little rambunctious, but we chalked it up to being in an exam room for an extended period of time.
As the visit concluded, Mary Pipan, MD, reviewed the day’s events and presented us with goals for the coming year. That’s when we were hit with a bit of a reality check. Dr. Pipan explained to us that Bryant’s behavior had become troublesome since his last visit, and that his weight was now an issue as well. She talked about an ADHD evaluation and getting him into the Healthy Weight Clinic because his blood work was also concerning. As his parents, we weren’t ready to hear that – and we certainly weren’t ready to accept that as his fate.
After that visit, my husband and I talked about what the team had seen, and we had to admit to ourselves that we had let things get out of control. Bryant was only 3 when the pandemic started, he is now 5 years old. Between online schooling, therapies and working full-time, we had fallen into some bad habits. It was time to reevaluate what we were doing as a family. The boy the Trisomy 21 team saw was not living at his full potential or the level of his true capabilities. He was beginning the transition into kindergarten and was scheduled for follow-up with Dr. Pipan in Fall 2021, so we were committed to a timeline.
When Bryant was born, I remember hearing something that stuck with me: “Always presume competence.” That’s the motto we went with as we moved forward with these changes. Bryant isn’t fully verbal yet, but he knows and understands all that is going on around him. He knows what he should be doing, and as a family we always held him to the same standards as his brother or his peers. We told our family and friends our expectations of Bryant as well. We needed everyone onboard with the concept that he was not going to “get a pass” or be excused from certain expectations we had as a family simply because he had Down syndrome.
Over the summer we made the decision to eliminate all the electronic devices and screens that had consumed our time during the pandemic and removed easy-to-reach snacks. We made sure we took time to get outside each day as a family to play or just do daily tasks like eating lunch together.
With these simple yet meaningful changes, we saw Bryant’s behavior improve and his weight decrease. It had a ripple effect on all aspects of his life. As he entered school in the Fall, we made sure we were transparent with his school team about concerns regarding his behavior. Thankfully, they were up for the challenge. We explained our expectations and how Bryant needs boundaries and consequences – just like any other child. From Day 1, it was all hands-on deck as everyone involved in Bryant’s school day – from the bus driver to his teacher, the lunch ladies and principal – all knew our expectations of Bryant and helped channel his behavior. With the help of our village, we have seen such positive changes in his behavior and his ability to focus on the task at hand.
As Bryant went to his follow-up appointment with Dr. Pipan in November 2021, he was like a new kid. He was able to follow directions from the staff, sit where he was instructed, and his weight improved along with his blood work.
We realized during all this that Bryant – like most kids his age – needs boundaries and limits. We had let those things fall to the wayside during the early days of the COVID-19 pandemic, and that’s when his behavior and weight followed. We regrouped and, thankfully, were able to reverse these bad habits. We are extremely thankful to those around us who helped us in this feat. We continue to keep our expectations of Bryant high, and he continues to show us just how capable he is!
Kristy M., mom of Bryant, age 5