It can be difficult, as a special education family, to feel like a part of the school community.
Sometimes, if your child is in a self-contained environment, you don't get much of a chance to mix with many of the parents at the school. Even if your child is in a mainstream classroom, as mine is, there are still many factors at play that can keep you isolated.
Much socializing takes place at after-school activities—math night, science fairs, school concerts. These are the extra-curricular events that make a school community, that take school from being a place where kids go to learn to a place where families socialize. Even if you and your kids are accepted, these can still be extremely difficult to take part in as a special education family.
For a long time, I tried to go to all of these events. I would herd my three children to the back to school picnic and movie night and reading night and sweat and struggle to keep everyone reasonably well-behaved and prevent them from wandering off. Yet it seemed that the other parents sat, chatted, smiled and only kept one eye on their kids, who stayed right where they were supposed to.
I assumed that these activities were hard because I had three kids, but when I made jokes about what a nightmare the events were, no one else rolled their eyes as hard as I did. It wasn't until we had been at our elementary school for about three years that I realized that it was hard not just because I had three kids, but because I have special needs kids (two of whom have IEPs, making them officially special education children).
My children are kids who get overstimulated, kids who can't handle the excitement and crowds at pizza night, kids with sensory issues. Plus, with three kids, if one of them freaks out, it's not so easy to cut and run.
It was hard for me to really truly accept that my kids aren't misbehaved at these events, but rather that they react to crowds and excitement in unexpected ways.
I first realized this at a bingo night late last year, when I had to leave two of my kids to walk the third in circles through the school halls to keep him from bouncing out of control. Armed with this realization, I was waiting to see what would happen at the open house that took place the Friday before school started this year.
The halls were full of students and their parents all trying to get to their classrooms and meet their teachers in a two-hour time window. My autistic son went from being calm and happy in the car on the way there to spinning and humming compulsively as soon as we were surrounded by a school full of kids and their families rushing around with manic energy.
I started to avoid these events. They were too much for me to handle by myself and sometimes too much even if my husband could attend as well. This was very difficult for my kids, particularly my oldest, who is extremely social and loves to go to evening school events. If he said he wanted to go, I took deep breaths, steeled myself and dragged my family to the school. If he didn't, I wouldn't bring it up and we would stay at home. As much as I like to meet the parents of my children's friends and as much as I like to get to know the other kids, it was just too hard.
Then, at one of the first after-school events of the year, I started chatting with another mom of a special education child. She agreed that it was too difficult and that her child had a hard time accessing the activities at the events. She told me about friends of hers that just don't come anymore because they and their children can't handle it.
While we tried to talk, I watched the circle of quiet children participating in the lesson and two of my kids fidgeting and getting up to walk around the room. I saw another mother trying to keep her daughter still and with the group. I could read the stress on her face and knew without having met her that her child was special needs as well.
Before I left that night (after my husband had come to collect my younger two children, who couldn't make it through all the events), I spoke to the teachers who had put together the program and I told them that we needed help. I told them that we want to participate, but that so many kids like mine just can't sit through a typical evening program.
To their credit, they ran with it. My school's math night was last week. It started with a pizza dinner in the cafeteria, followed by activities at tables set up in the hallways. Math night is usually a nightmare for me. This year, however, the special education team set up a special program in a room. They had activities for the kids in part of the room, while one teacher talked to the parents—and we were able to talk to each other—on the other side of the room.
The activities were specially designed for our kids, but perhaps even more importantly, we knew that no one in that room was going to judge us. No one would see our child crawl under a table and think we were a bad parent. Because we were in a room with one door instead of a hallway, none of our children were going to run off. I was more able to attend to the actual activity at hand than I have ever been able to in the past.
My children and I had attended the pizza dinner, and true to form, I was tense beyond words by the time I herded my kids into the special education room. Once I got there, however, I could feel the stress drop off of my body. My kids hadn't changed, they were still the sensorily challenged, impulsive kids they always are, but the environment had changed, and it made all the difference.
There is an argument to be made that putting special education children in a separate room doesn't help make them part of the community or even that it stigmatizes them. There is truth to that, but there is also value in increasing the special education community's visibility in mainstream schools, as well as giving special education parents a chance to meet and support each other. Not to mention that if the choice is between a special room or having to stay at home, the special room wins for inclusiveness.
These sorts of accommodations are easy to make if you have a school staff or a PTA willing to make them happen. All you need is a room, a couple of teachers to put together a modified program and some families who want to find a non-judgmental space. I know that I am so grateful to have found a school that wants to make my family part of the school community, and I am looking forward to many more inclusive after-school events.
Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey. This essay was originally posted at Autism Unexpected.