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Monday, September 22, 2014

Specialer Needs within Special Needs

One thing I really like about Janey being in an autism-only classroom is that lots of information gets sent home about opportunities for kids with special needs.  In an integrated classroom, it would set the special needs kids apart to just give them such information, but in a classroom where everyone has special needs, everyone can be given the flyers.  I love looking them over.  They do sometimes, however, point out to me that "special needs" covers some pretty wide ground.

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.


1 out of 64 said...

Hey Lady- long time no comment. I have been in over my head with life and the usual. Since we last chatted our son (in addition to our daughter) has been diagnosed with autism. I totally feel you on this post... I was just taking my son to his OT appointment the other day and talking to his OT about what services there are for adults with autism. I was talking about how there is not enough support for children with autism much less adults with autism. She said the same thing I feel like I hear all the time... She told me about something that a friend of a friend did that helped "high functioning people". You hear that all the time, and I can't help but only focus on... what about the low functioning people? I asked her that and I'm not sure anyone really knows what to respond. I don't blame them and she's a great OT and person. I really wish we could put something together that supports people with autism. Have you ever heard of the dementia community (it's not in the USA) that is a community just for people with dementia? Everyone is safe and happy and supported and can live like "normal" without people judging them and with people caring for them. If you utube it you can find more about it. I wish we could make something like that for people with autism. Please let me know if you ever want to communicate via email. I would love to find someone to communicate with and have each other for support and understanding. I think of you often and many times when I think "no one understands" I remember your blogs. Between 2 special needs kiddos, my husband, my job & my health challenges (thyroid, auto-immune) I'm so exhausted all the time. I really want to stay connected via this blog but seem to always be so busy that an email or text/phone contact may be more realistic. Either way hang in there and take care, and know that there are others out there who understand and are rooting for you. We are all in this together. I so wish I could take Janey for a weekend for you so you could have a time to just relax. How I wish I trusted someone to do that with Willow (or thought they would be up for the challenge). Keep blogging. I have your new years resolution blog from 2013 still printed that I read to remind myself of your inspiring advice and goals.. Big hugs.

Freeyoke said...

My wife had her thyroid removed. I wonder how common are thyroid problems and any connection to autism? It's a double whammy of an overactive kid that needs extra supervision and a tired mom.