By Joel and Renee Siepierski
A year ago, our son was asked to leave an after-school program near our home. We had chosen this program because it was small, close to where we lived and located in our daughter’s community-based school. We hoped our children, only a year apart in age, would be able to spend time together and support one another after moving into a new community.
Our son had difficulty integrating with the other children and needed emotional support the program was unable or unwilling to provide, leading to his removal.
Our son is autistic. In most areas of his life, he is able to take part in age-appropriate activities. He is currently in an integrated classroom in the second grade. The program counselors and director linked any negative behaviors our son exhibited to his autism instead of those of a 6-year-old boy, and insisted he needed an aide they could not provide. Our son has never needed an aide in school or for any activity. The program only saw the disability and not the child.
His departure from the after-school program was troubling for several reasons. First, he was made to feel unwanted. Our son knew the program counselors did not want to deal with him. Second, the program’s mission clearly states that it strives for inclusion and seeks to provide service to all children in the community.
In our son’s case, this was clearly not so. By staying home after school, our son misses out on friendships and social interaction that enrich most children’s lives. Third, and more broadly, as we sought other options for after-school care, it became clear to us that few programs existed, especially in the outer suburbs where we live, that were able to competently look after a developmentally disabled child.
Investigating further, we found that many families with disabled children coped with the absence of adequate after-school programs by having one spouse quit a job to be home to care for their child.
While we would love to make this choice, we rely on both our incomes to support our family. In one sense, many families pay a full-time salary through the loss of employment to care for their children.
In addition, many families are also forced to rely on publicly funded aid in these circumstances, costing taxpayers even more money and keeping able people out of the workforce.
While we have been fortunate enough to find private care for our son in the hours between the end of school and the end of the workday, our exposure to the inadequacy of many after-school programs left us stunned. All schools are required to provide adequate education to special needs children, yet these same children have few options once school lets out.
Although perhaps contrary to our callous times, we think it is time for such services to become part of community organizations that purport to serve the children in their area. The damage done to children and families in the absence of these programs is immeasurable.
Joel and Renee Siepierski live in the Town of Boston.