In late June, a few days before Disability Pride Month began, I took my 7-year-old child on an outing to an Ikea store. As I filled out a waiver so he could enter the store’s small play area, I noticed I was the only parent present.
It turned out that parents typically drop off their children while they shop, but that wasn’t an option for me. My son has a rare, severe form of epilepsy called Dravet syndrome, among other medical conditions, and he can’t be without a grown-up carrying his seizure rescue medication, as I was.
The scary reality is that around one in five children with Dravet syndrome die in childhood because the seizures can be so severe. There is currently no cure.
I explained this to a staff member and told her that I’d need to be in the room with my child. She informed me that no parents were allowed into the play area.
“But isn’t there a policy for kids with disabilities?” I asked.
