Living through 2020 was like being tossed in a giant container, shaken up, and dumped out into 2021 as something new, different, and often unrecognizable…for better or for worse.

During the fall of 2020, while we should have been celebrating 5-day/week in-person learning for Hope, we were instead watching her regress, develop behaviors, and basically just struggle more and more as the weeks continued. If we had only known then what we know now, we would have been able to identify the neglect Hope was experiencing in her classroom. Not until the culmination in December when her special education preschool teacher bound her ankles in packing tape in response to Hope repeatedly taking her shoes off did we truly appreciate how extensive the abuse ran throughout the classroom.    

I have wanted to share this story with you so many times, and so many times I tucked away my poorly constructed, emotionally charged drafts because negativity was never meant to be a part of At Her Own Pace. This blog was always meant to house triumphs over struggles; this blog is meant to be a celebration of hope, and of Hope, at all times. However, the way things have evolved since December, we haven’t experienced the triumphant moment that I thought for sure would come.

The abusive teacher remained employed until her retirement in June, six months after we reported her and five months after our school’s internal investigation found her guilty of having bullied Hope in a physical, demeaning incident that caused actual harm (their words, not ours). Our daughter was four years old.

Hope moved down the hall—albeit happily and unwittingly—into a classroom that didn’t satisfy her IEP. A former classroom aide confided in me that it was wrong but perfectly understandable that the teacher lost her patience with my daughter and wrapped her ankles in packing tape. The Board of Education denied me a hearing after their own internal harassment, intimidation, and bullying (HIB) investigation revealed that the teacher was motivated to retaliate by Hope’s disability. The Board of Education also ignored my plea to directly communicate with them via a letter I emailed in April, which I then sent by certified mail later that week when I realized I probably wasn’t going to receive a response, likely by the advice of the district lawyer whose salary we pay for with tax dollars. No matter how many times I insisted during a phone call, Google Meet, or in writing that someone answer why we have a district policy titled “Use of Physical Restraint and Seclusion Techniques for Students with Disabilities” when it was so clearly violated and left unaddressed with our family, I was met with more silence.

Nothing is resolved, but after too many thousands of dollars in lawyer’s fees, which amounted to absolutely nothing, because as it turns out it’s not unlawful for a public school staff member to punish a preschooler by wrapping their ankles in packing tape, the NJ Division on Civil Rights has opened an investigation into our school district. The resolution we sought months ago involved honest and open communication with administrators, but it seems all consequential facts have been shrouded by confidentiality requirements.

Our story doesn’t end in failure, thanks to the confidence instilled in us by the National Down Syndrome Society (NDSS), the leading human rights organization for individuals with Down syndrome in the U.S., who caught us with outstretched arms while we were falling in a tailspin this past winter. I’d always thought NDSS was an organization too large to directly contact, benefiting us through legislation and research, not through individual human interaction, but where board members were once only headshots on a website, they now had voices and backstories and more empathy than I could have imagined. If our district Board of Education had it their way, we would have remained silent as the Superintendent recommended on a Google Meet that we should (“to avoid embarrassment,” he suggested) and allowed Hope to slip through the cracks of a system that owns the successes of its students and hides from its own shortcomings.

The 2021 NDSS NYC Buddy Walk takes place on September 18 and Hope is among 500 people with Down syndrome selected to appear in a video in Times Square. Although the COVID-19 Delta variant has regrettably forced the event to go virtual, it remains our family’s honor to celebrate the incredible determination, resilience, and sincere love of our precious Hope.

We ask that you please consider making a donation to the 2021 Buddy Walk via Hope’s fundraising page. The NDSS uses its resources wisely, and trust me when I say that I can’t be confident we would have made it through Hope’s classroom abuse without them. The months have been so long and the nightmares of being unable to protect my children haven’t subsided, but we’re standing our ground that no matter a person’s age or ability, we all deserve to be treated with dignity.

Tears are forming in my eyes and a lump is swelling in my throat as I write this—for regret in failing to recognize my daughter’s non-verbal requests for help, for gratitude that we were able to align with knowledgeable people, and for promise that we will never again let anyone who doesn’t deserve to be around our gorgeous and innately sweet and kind daughter to ever have access to her brave soul again.