I was supposed to spend the first part of last week in Washington, D.C. coming together with women activists from around the U.S. to learn and organize so that women are poised to act and lead in this 2016-2017 election. #WeWontWait is about raising our voices to prioritize the needs of women and families, to make our communities stronger and safer.
Instead, I spent this week scrambling to find after-school care for my special needs son after he was expelled from his after-school program for running outside to the playground without permission.
This is the fourth program in five years that has either expelled or politely asked that we not come back. Karate, swim lessons, gymnastics, we have been dismissed from them all.
My son is high-functioning autistic. He needs redirection. He doesn’t always want to play with other children. He uses four dollar words and talks constantly about reptiles and sharks. He is different, but he isn’t bad. In mainstream programs, like after-school care or group classes that means he needs extra patience to lead him back to the lesson when he becomes distracted.
After-school programs and classes aren’t designed to serve children like my son. This creates a crisis of care when thinking about those hours between school and the end of the workday.
Both my husband and I work full time, which means our son must attend after school care for two hours each afternoon. But, where is he supposed to go when childcare is not designed to provide care for special needs children?
In August, when school was getting ready to begin I called around to local after school programs. Most of the places I called admitted that they did not have any plans in place to work with special needs children. One program told me they didn’t think our son “would be a good fit.” Others simply didn’t have an answer. Finally, we enrolled him in a program housed at the school which assured us they were able to accommodate his special needs.
In the first week we realized the noises from all the students in the cafeteria were making my child anxious. He began to run and hide in the bathroom stalls, covering his ears. That day we got a phone call to pick him up and a write-up noting that his behavior was unsafe. We bought headphones and stuck them in his back-pack. We talked with him about strategies for coping in places that were noisy and crowded.
In the next few weeks, we received calls on several occasions asking his father and I to come and pick him up. He refused to play with the other children. He continued to run and hide in the bathroom. The final straw was when he ran from the room and out the doors to the playground. He was expelled form the program that afternoon.
Now, we are left without childcare. We are missing work in the afternoons and running out of paid sick leave.
I reached out to my online networks for advice. Other parents of special needs children had found similar experiences. Some had found a way to hire an individual caregiver. Others had found a friend or relative, patching together care in small pieces here and there like a scrap-quilt. No one could name a program or daycare center that they found to work with them. The most overwhelming response from other parents: they had decided that one parent had to reduce work to part-time or take-time off from work altogether.
America’s solution to caregiving for special needs children seems to be you are on your own.
We need policies to ensure that families have access to quality, affordable childcare in the U.S. and that those policies include special needs children. We also need to ensure that those policies ensure care givers earn living wages. We must care for our children and those who give care to them. The U.S. must prioritize families.
Though I couldn’t attend the summit in D.C. my heart was with women of color, with mothers and caregivers, and with workers in the U.S. who stood together to create a plan for change and to say #WeWontWait.
My son can’t wait. He needs quality care today. Care givers can’t wait. They need wages to support their families now. #WeWontWait; we need policies and actions that provide real solutions to tough problem.