This year, I’ve been involved in a leadership training class for parents of disabled children. The class occurs once a month on the third Thursday of the month. This month, the class coincides with a dental convention that Chad attends every year, so my usual monthly childcare is otherwise unavailable.
At the beginning of the class, we were told that there would be childcare provided to those who needed it—all we had to do was let the people in charge know ahead of time that we would be bringing our kids.
Today, I wrote an email to the person coordinating the class to let her know about my childcare situation. I said that I would prefer to bring the kids, but Gracie is “fairly care-intensive.” I asked for her to contact me ASAP to let me know whether it would be okay for me to bring my children to class. This afternoon, her assistant called me, wondering what “care-intensive” meant. I told her that Gracie isn’t potty trained, that she is a safety risk because of not feeling pain, and that it’s not physically possible for her to sit still and be quiet so I was worried that Gracie would disturb the other class attendees. She thought that it would be better if I skipped the class rather than bring the kids.
How silly of me to think that at a class for parents of disabled children they would be able to provide childcare for disabled children as well as typical kids. I assumed they would know that perhaps some of the children’s needs would be significant. I assumed they would be able to accommodate all the children, not just the ones who are old enough or high-functioning enough not to require intensive care. How silly of me.
I am sad to miss the class. So far, it’s been incredibly interesting. Each month, I come home from class energized and excited about the class. I will look for replacement childcare, but my prospects are limited. After all, Gracie is care-intensive, and we don’t have family here that I can call upon at a moment’s notice to watch the kids. Still, it’s frustrating. I thought that there, of all places, I would be able to find someone who understands the difficulties of finding care for special needs kids. I thought that they would understand that when a mom of a disabled kid says she might need childcare, she’s talking about for her disabled kid too. I thought they were different.
Part of me wants to call the organizer of the class and express my frustrations, but at the same time I know what childcare they offer there and know it’s not sufficient to accommodate Gracie. Also I don’t want to rock the boat; I can be a bit, er, acerbic in person, and I don’t want to make a biting comment that later I will regret. Still, they should know that by not providing childcare for the special needs kids, they are effectively discriminating against these kids who require special accommodations—and us parents, too.
So many aspects of regular life are foreclosed for families with disabled kids. We can’t just do so many things that people take for granted, like attending whatever school we want, or visiting any old park, or attending church services, or eating at restaurants, or finding summer childcare, or going to movies, or a million other routine things that most people don’t give a second thought to. We have to jump through so many hoops. We find solidarity among other families of disabled children because we know that although our journeys are different, they are equally tough. But I guess support does not equal accommodation, and even though they may understand what it’s like to face these hurdles, they cannot help scale them.