Nicole Johnson: Our daughter with Down syndrome has team of superheroes
People who have Down syndrome are not always happy. I say this because it is often the first thing I hear when someone describes a person they know who carries this extra chromosome. You might also be surprised to learn just how intelligent those with Down syndrome are. Perhaps not by the world’s standard, as most test markedly lower than their peers in subjects of academia. Yet, they overcome. They persevere in navigating a world that is immeasurably more complicated to them than to those of us defined as “typical."
My daughter is 11 years old and attends the Cooperative Middle School in Stratham. She has Down syndrome. She is not always happy. And she is so very smart. This, combined with her insatiable appetite for attention, makes for a student who, to put it mildly, keeps the staff at CMS on their toes. Our little lady has two, yes, two full-time paras who support her during the school day. She has a team of superheroes, otherwise known as a behaviorist, speech pathologist, occupational therapist, physical therapist and special educator; all led by a director who models empathy, compassion and grace in the midst of a daily environment that rivals any New England nor'easter.
On any given day, my daughter presents her team with unpredictable challenges ranging from choosing to run the halls rather than walk to class, pulling hair, attempting to climb up on the stair railing, or trying to make a great escape from the building, resulting in a “code blue” call across the waves of the walkie-talkies. The root of all of her “unexpected” behaviors is this need for attention that is common among those with Down syndrome and is satiated through either positive or negative attention — the negative attention usually providing more of a high, as it is often delivered with a flutter of activity and excitement.
These behaviors are nothing new. My daughter has been pulling any one of these tricks from her portfolio since preschool. Myself and my husband have sat at the table during countless IEP meetings over the years, doing our best to partner with the school and both advocate for and support our child in her education. What might not always be clear to those outside this complex world of special education is the sheer vulnerability of the parents raising children with special needs. There is little, if any, opportunity for a parent to hear positive feedback on the development of their child. They live the hard every day and are acutely aware of the many areas of development needing improvement.
Our daughter’s team at CMS clearly gets it. Even in the midst of such challenging behaviors, every conversation around our daughter this year has begun with the positive. We have been mercifully showered with the listing of our daughter’s strengths and capabilities as well as declarations of her magnetic personality before there is any mention of the more unexpected and challenging behaviors that need work. Leading with the positive is everything, and if nothing else, credit needs to be given where credit is due.
It is hard to believe that within my lifetime, children with Down syndrome were once referred to institutions like the Laconia State School; essentially a boarding house for those with a variety of cognitive and functional challenges. It is both remarkable and profound to reconcile that reality against the present-day educational systems that strive for inclusion under the belief that every child has the right and potential to define his or her own success. The system, like many, is flawed and imperfect. There are plenty of parents left searching for answers and too many children defined by the negative rather than the positive.
All the more reason when someone gets it right to call attention to a job well done. To that end, thank you Team M; for seeing our daughter for who she is behind the behaviors, for loving her for the unique contribution only she can make to the CMS community, and for believing there is always potential for growth. We are empowered in our partnership as we search for her path to success, we celebrate all she has achieved and we are forever proud and grateful to call her our own.
Nicole Johnson is a Stratham resident, wife and mother to three children. She is an advocate for adoption and for those with special needs. She blogs at nicolejenniferjohnson.com on all things faith, family and the “Joy in the Journey."
This article originally appeared on Portsmouth Herald: Nicole Johnson: Daughter with Down syndrome has team of superheroes
