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Finding childcare for a child with a disability or chronic medical condition is a challenge many people cannot fully understand until it becomes a personal crisis. Eight years ago, I found myself faced with this reality. In August 2016, my son was diagnosed with Type 1 Diabetes, and life came to a halt during the five days my husband and I spent in the hospital with him. While we felt immense relief when we learned his diagnosis was not terminal, and we remain grateful for that, nothing could have prepared us for the childcare challenges we would soon face.
The preschool and after-school program where my son was enrolled said they could not administer his necessary insulin injections. Another school said that they could administer his insulin injections but would require that he use a continuous glucose monitor, which was not an option for us at the time due to his recent diagnosis. Other schools had no availability or reflexively declined to explore whether they could take the steps to reasonably accommodate his needs or determine an exception applied under applicable state and federal laws.
At the time, my husband managed complex commercial construction projects and often needed to be on-site, and I was a litigator in Boston. Faced with what felt like an insurmountable hurdle, I was sure I would have to quit my job. We now had a child with a life-threatening chronic medical condition and no one to care for him while we were at work.
With some creativity, perseverance, and a bit of luck, we found a solution, but it was not easy. We enrolled our son in SPS’s integrated preschool (9-11:30 am), where there was a full-time nurse, and I worked from home, balancing work and caregiving responsibilities for almost nine months until we found a nanny willing and able to care for him before and after school. There was no full-day program at the integrated preschool at that time.
During those nine months, I delegated as much as possible, conducted research, and drafted letters and motions between 3 am and 7 am, during the 2 1/2-hour window my son was at school, and at night. My husband stayed with our son when I needed to be in the office, attend depositions, or go to court. It was a stressful and exhausting period for all of us, but I was fortunate to work for a law firm open to supporting flexible work arrangements long before remote work became common.
While this arrangement worked for us, and I am a proponent of flexible work arrangements, they are not feasible for every employer or employee. Many working parents need, or want, to be physically present at their jobs or cannot work at home with their children and, therefore, rely on before and after-school care.
Although I cannot speak personally about the accessibility of before or after-school care in Sudbury because we ultimately hired a nanny, I know many children with disabilities or chronic medical conditions who have successfully attended SED. However, recent surveys and community discussions demonstrate that we need more options for after-school care in Sudbury across the board (for children with and without disabilities or chronic medical conditions). Equally crucial to adding these options is ensuring that the organizations caring for our children understand and comply with the state and federal laws applicable to their organization and children with disabilities. Such compliance is not only legally required; it is imperative for the well-being of our children, families, and community.