A girl with Down syndrome has a team of superheroes
People with Down syndrome are not always happy. I say this because it’s often the first thing I hear when someone describes someone they know who carries this extra chromosome. You might also be surprised to learn how smart people with Down syndrome are. Perhaps not by the world standard, as most tests are significantly lower than their peers in academic subjects. Yet they overcome. They persevere in navigating a world that is infinitely more complicated for them than for those of us defined as “typical”.
My daughter is 11 and attends Cooperative Middle School in Stratham. She has Down syndrome. She is not always happy. And she’s so smart. This, combined with her insatiable appetite for attention, makes her a student who, to put it mildly, keeps the CMS staff on their toes. Our little lady has two, yes, two full-time paras supporting her during the school day. She has a team of superheroes, otherwise known as a behaviorist, speech therapist, occupational therapist, physiotherapist, and special education teacher; all helmed by a director who embodies empathy, compassion, and grace amidst a daily environment that rivals any Northeast in New England.
Every day, my daughter presents her team with unpredictable challenges ranging from choosing to run down the halls rather than walk to class, to tearing her hair out, trying to climb the banister or trying to escape the building, resulting in a “code blue” call over the airwaves of walkie-talkies. The root of all of his “unexpected” behaviors is that craving for attention that is common in people with Down syndrome and that is satiated by either positive or negative attention – with negative attention usually providing more effect, as it is often delivered with a flurry of activity and excitement.
These behaviors are not new. My daughter has been pulling one of these things out of her wallet since preschool. My husband and I have sat at the table at countless IEP meetings over the years, doing our best to partner with the school and advocate and support our child’s education. What may not always be clear to those outside of this complex world of special education is the very vulnerability of parents raising children with special needs. There is little, if any, opportunity for a parent to hear positive feedback about their child’s development. They live the hard day to day and are acutely aware of the many areas of development that need improvement.
Our daughter’s team at CMS clearly understands. Even amid such difficult behavior, every conversation around our daughter this year started with the positive. Luckily, we were overjoyed by our daughter’s list of strengths and abilities as well as statements of her magnetic personality before mention was made of the most unexpected and challenging behaviors that require work. Leading with the positive is everything, and if nothing else, credit should be given where credit is due.
It is hard to believe that in my lifetime children with Down syndrome have been referred to institutions such as Laconia State School; essentially a pension for those with a variety of cognitive and functional challenges. It is both remarkable and profound to reconcile this reality with current education systems that strive for inclusion under the belief that every child has the right and potential to define their own success. The system, like many, is flawed and flawed. There are many parents looking for answers and too many children defined by the negative rather than the positive.
All the more reason when someone manages to draw attention to a job well done. To that end, thank you Team M; to see our daughter for who she is behind the behaviors, to love her for the unique contribution that only she can make to the CMS community, and to believe that there is always potential for growth. We are empowered in our partnership as we seek her path to success, we celebrate all that she has achieved, and we are forever proud and grateful to call her ours.
Nicole Johnson is a Stratham resident, wife and mother of three. She advocates for adoption and people with special needs. She blogs at nicolejenniferjohnson.com about faith, family and the “joy of travel”.