Pandemics & Perpetual Toddlers

Charlotte, my 4-year-old child with the developmental age of a 1-year-old, is expected to live her life as a perpetual toddler. Her body continues to grow but her intellect cannot keep pace. Charlotte is a student in the Montgomery County, Maryland special needs intensive PEP, or Preschool Education Program – her class has three children in it.

The teachers at PEP know how critical their services are for kids like Charlotte. She has a litany of diagnoses, including a rare neurogenetic disorder, autism, and a global developmental delay. Before the pandemic, the PEP teachers asked the Montgomery County Board of Education to provide their students in these classes with an additional hour and 25 minutes per day of instruction, on top of the five hours they already received, for the 2020-2021 school year. Then, COVID hit. Montgomery County moved to a virtual model of instruction. 

Charlotte spends most of her days in virtual “school” restrained in a Rifton chair, to try to enable her to focus on the lesson at hand. This is not working, as demonstrated by the video below:

Charlotte's IEP requires "hand over hand" intervention for her to participate in learning in a normal – in-person – school environment. In the virtual setting, the need for an assistance is even more acute. Months into the pandemic, despite our best efforts and great personal expense, Charlotte is not receiving the education required by law. We've asked Montgomery County to provide an in-person aide or send Charlotte (and her three-person class) back to school.

Charlotte desperately needs to go back to school. There are no private programs that can or will take her at this time. Charlotte's big sister, a typically developing 9-year-old with no special needs, spent the past month in school full-time and in-person. Her private Catholic school found a way to bring the children back safely in early October. Before that, Charlotte’s big sister was sequestered in her room for several months, independently joining classes online and submitting her work - not something that's possible for children with special needs.

At school, Charlotte receives not only special education but also services including physical therapy, speech therapy, and occupational therapy. Virtual therapies are not working and in fact we are seeing regression.

Early and intense intervention for children like Charlotte is critical to ensure that they can eat, drink, walk, and ideally verbalize: Mobility therapy, speech and language therapy, sensory integration therapy, hydrotherapy, occupational therapy with a focus on fine motor skills, and more. The trajectory of these children is vastly improved with intensive therapy, whereas without adequate provision, these children do not make adequate progress. These therapies must be conducted in-person and on a routine basis by qualified therapists used to working with children with similar complex needs.

Charlotte is a sweet, happy child – imagine a 1-year-old, in the body of a 4-year-old, and beyond. She has become very frustrated recently, strapped in a chair, watching people on a screen. We had to shave her head last month as she wouldn’t stop pulling out her own hair. She frequently bangs her head purposefully on furniture and on the floor, meaning she spends more time than usual in a helmet.

PEP instruction is not effective virtually. The COVID risk for Charlotte is significantly outweighed by the benefit of receiving in-person special education services. I have witnessed how critical early and intense intervention is for special needs children. Based on the information we have now, we know with small groups like the special needs preschool, the benefit of going in person outweighs the risk of COVID.

The three children in Charlotte’s PEP class, all with exceptional needs, could easily be brought together in-person with the provision of adequate personal protective equipment (PPE) for the teachers and therapists. The program is currently proceeding virtually, which simply does not work. My husband and I both work in full-time managerial-level positions. Charlotte’s formerly part-time, now full-time caretaker, is trying to get her to participate in the virtual schooling, with extremely limited success. We also have masked applied behavioral therapists at our home approximately 14 hours/week.

We’ve seen other states and counties make things work for the special needs children who are counting on us. Alas, Montgomery County hasn’t made any progress. I’ve tried going on the news. I testified (twice) before the Montgomery County Board of Education, pleading with Montgomery County Superintendent Jack Smith and Montgomery County Health Officer Dr. Travis Gayles to help Charlotte and all her special needs brother and sisters. Those pleas have gone unanswered.

I believe it’s time to update the Individuals with Disabilities Education Act (IDEA) to reflect the unique needs of disabled children during a pandemic. IDEA is federal legislation that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children. Our family has retained an attorney, Kimberly Glassman, to fight for Charlotte - and to move the bar for all children with special needs.

As we think about what’s best for adults, we also need to consider what’s best for kids, especially those with special needs. The Biden Administration's pandemic task force should focus first on how to safely bring our children – especially those with special needs – back to school. The task force should prioritize looking to states and counties that have dealt with this issue effectively.

Let’s not neglect our most vulnerable citizens – those that literally, cannot speak for themselves. In the meantime, this mom will be here – shouting from the rooftops – for all of them.