Occasionally and erroneously, I forget how much harder my son Charlie’s life is than his peers. Yes, he has cerebral palsy and he uses a wheelchair to move and a speaking device to communicate. But Charlie is happy and healthy and thriving in his home environment. He participates in every activity as the rest of us and if he can’t, we don’t do it.
In short, we have done big things like family hiking trips and small things like horseback riding and trips to the ocean. But that doesn’t mean we haven’t had to fight for modifications to make it happen. The fight becomes even greater and more apparent when we run into basic necessities that cannot be met by the system at large.
I was reminded of this gap in adequate accommodations most recently in Charlie’s experience with summer school. Here’s a doozy of a mind-bender for you: Charlie qualified for both summer school and Extended School Year (ESY), but because they overlapped, he was technically required to be in two places at once. Also, at some point, someone in the public school system decided to call summer school “summer camp,” not to be confused with the regular summer camp that the system offers to any kid who wants to sign up. The language was confusing for all of us, but it was Charlie who suffered for it.
Two weeks prior to summer school, I received an email from the coordinator. She introduced herself. She seemed pleasant. No, she did not know who Charlie’s general education teacher or special education teacher would be when I asked, but luckily after several rounds of emails, I tracked them both down. We had a few phone calls. Enough for me to explain how Charlie communicates and navigates in his wheelchair so that he would be safe and have a way to express his basic needs to them on day one. But do you know who I couldn’t track down? Transportation. The tiny but important cog in the machine of summer school/summer camp/ESY could not be found.
One week before the start of school, I spoke with the coordinator again and she promised to check. Four days before school she said someone would be contacting me. The Friday before the Monday start date, with no word and no hint of a plan, I called her again and she said they would be in touch that afternoon. They weren’t. I then asked both of Charlie’s new teachers. They pointed me back to the coordinator who pointed me back to a non-reachable entity known as “Transportation” on the school district’s website.
By the time Saturday rolled around, I was getting desperate (and angry). We only have one working car at the moment and my husband needed it for work. I texted our favorite bus driver. She gave me both the head of transportation’s number and, even better, the after-hours on-call number. I called Sunday morning. Barbara Jean, the manager, not to be confused with Barbara Jones, who is the head of transportation, told me someone would be in touch that afternoon. They were not. With less than twelve hours until the start of school, I called Barbara Jean again. This time she looked Charlie up in her files and, after a lengthy apology, explained that Charlie was signed up to ride the special bus for ESY, but had somehow been missed for summer school. We were back to that pesky language again, except this time it meant my son had no way to get to school. I emailed both the Barbaras. They put their heads together and got him assigned to a bus. It was twenty minutes late to pick him up in the morning, but I didn’t care. He had a ride.
It shouldn’t be this hard. It shouldn’t take fifteen different people and two Barbaras to get my son to school. This is when I am reminded that disabled rights are still a fight. Hopefully, in the not-too-distant future, headway will be made and things like basic transportation and accessibility and social awareness and equality will be so ingrained in our society that we forget to be thankful for things like buses. But we’re not there yet.
Jamie Sumner is a special needs mom, author and blogger.
Read her blog, The Mom Gene.
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