Our daughter Mae is 4. She has Down syndrome, and we are fighting to keep her in school.
October is Down Syndrome Awareness Month, and in any other year we would work with friends, families, and organizations to fund-raise, advocate, and spread awareness for those who share Mae’s diagnosis.
But, of course, this is unlike any other year. As the uncertainty surrounding the coronavirus pandemic drags on, we have had to work harder than ever to advocate for basic educational rights and services for all children with special needs.
When schools began shutting down in March, families across the nation were faced with the reality that their children with special needs would lose the services and professional therapies that are provided through public school systems once a child reaches the age of 3.
More than seven months have passed since children have experienced a normal school day. Remote learning is a stopgap for general education students, but for many children with special needs, this gap continues to grow and requires in-person support and structure. The future promise of “compensatory services” rings hollow as we continue to watch our children regress. We are deeply grateful for the efforts and sacrifices made by the teachers who have provided so much support to Mae, who understand she cannot get what she requires through a remote structure. Mae had been thriving at her school, with the structure and therapies that it provided. Her mobility improved, and she had begun to use her sign language and speech to communicate better. In these past 7 months, she began resorting to screaming and hitting when she was frustrated or to get attention, abandoning the skills she had been working daily to improve.
The Boston Teachers Union continues to advocate for delays in the return to school — even for high-needs students who require therapies that cannot be delivered via Zoom. With a court action hanging in the balance, many families like ours continue to lose what’s left of our faith or trust in the process. There is a palpable fear that children like Mae will not see a full week of school all year, and that there will be continued delays and assumptions despite the positive experiences seen in districts across the country that have been reopened for months.
We do not say any of this with a cavalier attitude, nor with a disregard for sensible safety measures. One of us spent over a decade working in public health and emergency response, and the other is a physician assistant at a Boston hospital. Additionally, Mae has spent much of her life immunocompromised. We are well versed in what it means to have an at-risk child, and what life in an intensive care unit feels like. For years, her being in public was a health risk. However, Mae’s specialists at Boston Children’s Hospital agree that the benefits of having her in school outweigh the risks of keeping her home. These are not people who are in the business of putting their pediatric patients at risk. This is a position many special needs parents understand. We know our children, what they need, and what the risks are. Let us decide.
In the meantime, the teachers union leadership has continued to press a narrative that they have been advocating for the safety of all Boston Public School children. This does not acknowledge the voice of special needs parents who have been pressing desperately for months to gain in-person education and services. This false narrative creates continual chaos for families like ours, and for those without the benefit of time and resources to press for our rights. Every day there is a new message, a new battle, a new lawsuit, and a new sense of confusion and despair felt by families across the city. By the time you read this, it will all probably have changed again.
While our typically developing 7-year-old, Maia, has faced her own challenges with remote learning, for children with special needs the concept of remote learning has proved to be not just impractical but also at times detrimental. For so many of us as individuals, the absence of structure and routine has been challenging, inconvenient, and endlessly frustrating. For children with physical or cognitive disabilities, this void is particularly disruptive and unforgiving.
The stark reality is that this virus will be with us for some time. Rates will rise and fall. Any vaccine will take time to distribute and have a meaningful, measurable impact. It is unlikely everyone will collectively agree on what levels of spread and infection are deemed “safe.” In the meantime, the risk cannot be eliminated, only mitigated. While we have opened other parts of our communities, kids like Mae sit in limbo at home, with parents desperate for clarity and support as negotiations play out, as if time is a luxury we have.
We must collectively commit to caring for our most vulnerable children, instead of equivocating around why it is not possible. Parents who are unable or unwilling to send their special needs children back into a physical setting require the same level of attention and support. We need to come together as a community and commit to a plan developed in good faith for all of these children, no matter what this coming year may have in store. Clear harm is being done. We will not get another chance to do the right thing.
Michael A. Colanti is in the Mid-Career Master of Public Administration degree program at Harvard University’s John F. Kennedy School of Government. Cristina Colanti is a physician assistant at St. Elizabeth’s Hospital in Brighton.