I got a flyer recently about a camp run by the Boston Centers for Youth and Family---the community centers of Boston. It was about a winter version of a summer camp they hold, called Camp Joy. It meets on Saturdays, near us, and it sounded great---things like swimming, games, field trips, etc. It was very reasonably priced, and I was starting to think about doing the paperwork when I read more closely, and saw that one of the requirements was that "campers must be able to interact in a 4:1 participant to staff ratio". Well, that took care of that. There is no way on earth that would work for Janey. She could, if she was in a very good mood, maybe be okay with a 2:1 ratio, but she often needs 1:1, and during her tougher moments, more like 1:2, with two adults for just her.
This reminded me of the respite house we tried last summer. It was also for children with special needs, but we decided to stop sending Janey when it was obvious that the ratios of caregivers to children was not at any kind of level safe for Janey. It was a beautiful place, run by very well-meaning workers, constructed I imagine at great cost by donations, but it left out kids like Janey.
I am not sure of my feelings about special needs programs that can't handle the "specialer" special needs. I like to keep rooted in reality. I know that every program doesn't have the staffing or means to serve all children. I know that if they put their funds into being able to serve Janey, that might leave several other children with less demanding special needs without a program. I don't expect special treatment. But sometimes it's very frustrating that Janey's needs leave so very few of the opportunities for even children with special needs open to her.
What would be a solution? One I thought of was recruiting college students as volunteers. There are many colleges in the Boston area, and many students preparing for a career in special needs teaching. Maybe they could get class credit for providing one-on-one help so that high needs children could attend something like the Camp Joy winter camp. I'm not expecting them to help Janey go to even a regular camp, or something like a regular dance class. I would love help just so she could go to a special needs camp. I am sure there are a lot of other mothers and fathers like us, that would love that help.
One of the problems is just with the term "special needs". It's pretty general. I have been trying lately to avoid terms like "low-functioning autism". I can understand that it labels Janey and kids like her, that every child has areas where they are low or high functioning. But if you just say "special needs", you aren't saying a lot. And the general public might think, and in fact I've often heard it said "There's ALL KINDS of programs out there for kids with special needs!" Well, that is even debatable, but there are some, but except for the public schools, most of them can't serve a child like Janey, a child that needs absolutely constant supervision and is prone to sudden accelerations in difficult behaviors, a child that is not toilet trained and can only speak in a limited way. What do we call kids like her? SPECIAL special needs? And how few people out there are aware of the challenges of raising a child is not even able to attend a camp or program labeled for being for children with disabilities or special needs?
I'll end with a thank you to the public schools. I say it a lot, because I think it a lot. I am so thankful that the public schools serve everyone. I send Janey off to school just like any other parent. She might not learn the same things, but she gets on the bus and goes to school. I know that wasn't always the case, even in fairly recent history, and I am so glad that I am living at a time when it is.