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Kelly Kierstead has worked in the community services field for more than 18 years.
I’m thankful to the Appropriations Committee and the Maine Legislature for the work they did last year to support Maine children with disabilities, and so pleased that Gov. Janet Mills and the Department of Education have included funding in the supplemental budget to implement a daily tuition rate that Special Purpose Preschools need to help more kids like my son Ollie.
My son Oliver was diagnosed with level three autism the week he turned two. When we got that diagnosis, we were told by every professional, including the Centers for Disease Control and Prevention, that early intervention was imperative to him living his best life.
In Maine, for children with the highest needs, these critical early intervention services for 3- to 5-year-old children with disabilities are provided by Special Purpose Preschools. They assist with speech development and communication, which in turn affects everything else. I work in this field, and I see firsthand the complications and stress as well as self-injurious behavior that can occur when a child cannot communicate basic needs, like whether they are in pain or even thirsty.
Like so many parents of special needs kiddos, we started piecing together services and going on any wait list we could for Special Purpose Preschools. It would take seven months before we got in anywhere, with our journey starting at a private ABA center in South Portland. We were commuting 2.5 hours a day.
We were thrilled when we started actual preschool at a special purpose preschool in Lisbon when Ollie was 3 in 2021. He flourished. He learned shapes, matching, and was even potty training. When we got the news, eight months later in June of 2022, that the preschool was closing due to lack of funding, we were devastated. That August he lost his education including speech, physical therapy and occupational therapy.
In October, we got a spot at a special purpose preschool in Monmouth. But we didn’t start off where we were back in August. We had to start over. With kids like Ollie, they lose any development gains they make when they don’t have consistent education services. When you have a child who doesn’t speak and cannot express themselves in a traditional way, every new start requires the staff to learn his sounds, his expressions, his actions, and learn who he is. My boy regresses a little each time. But the months went on, and Ollie once again began to blossom.
Less than a year later, we got the call that the school in Monmouth, my son’s third school, was closing due to lack of funding.
I knew the Maine Legislature had included money in the budget for the 2023-2024 school year to begin intermediate payments while Child Development Services developed a daily rate to reimburse schools for the legally required services they provide to our most vulnerable kids. I sent the school all the information I could, sharing that payment was possibly coming in November, but they could not hang on financially and had not heard when they would receive payment.
Here we were again, with Ollie losing his friends, his teachers, speech, OT, PT. What hurt our hearts the most was the lack of closure for our boy. There was no explanation he would understand or the ability to say goodbye. His life changed overnight.
We just started our fourth school in October. Ollie’s team is fantastic, and they are trying to figure him out like all the schools before. But the upheaval of his development and special education has had notable detrimental effects. His daily self-injurious behavior has doubled. This is no fault of the school, but I believe, the result of a frustrated child who yet again has to show another group of adults who he is, with no words to do so.
We can’t afford to take a step back. At a time when Maine is out of compliance with the Individuals with Disabilities Education Act and hundreds of families and children are already on waitlists for specialized early education services, I don’t want Maine to see another specialized preschool close. I don’t want our kids who have found their safe, familiar place in one of Maine’s wonderful special purpose preschools, nor the children who have been waiting for a spot, to lose out on the early intervention that gives them their best chance.
I’m hopeful that the Legislature and administration will keep this in the budget and implement a clear, consistent, long-term solution.