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Hot and bothered

Hot and bothered

 The last three weeks have been the hottest ever recorded in Boston, and it’s been miserable.  Hot weather is miserable everywhere (or it is to me) but Boston’s hot weather feels like a special kind of awful—humid air but no rain and a feeling of there not being a full breath to take outside.  I hate it.  And so, take that into consideration when I rant here.

Janey had a tough day of school today.  We got a call from her summer school teacher.  He seems great, and I really liked the way he told me about her day—emphasizing the good, outlining all she was saying and why she was getting upset.  She wanted to go home, and failing that, she wanted to go to the dance studio, and if she couldn’t do that, she wanted to go swimming.  It was too early to go home, the dance studio was closed for the summer and the pool for some reason is not available for special needs summer school students.  And so she was angry.  When her summer ABA therapist tried to get her to do work, she pulled her hair and then bit her (not badly, but a bite is never good).  She later also tried to bite her teacher.

It’s not unheard of for Janey to pull hair or bite, but it’s quite unusual in the last few years.  I think she was feeling what we’ve all been feeling—just fed up.  She’s tired of the heat keeping us from doing anything much fun.  She is tired of schoolwork.  She wants to do the things she wants to do—dance and swim and go for car rides.  And she expressed what she wanted, with words, as we always ask her to, and it didn’t make any difference.  She lashed out.  It is not acceptable for her to pull hair or bite, or to hit as she did this evening with me while I was trying to talk to her about the biting and hair pulling, but I can somewhat understand why she did.

I was feeling in a mood today before we got the call from the teacher.  I read an article in the Boston Globe about a new law that allows young adults with disabilities access to colleges in Massachusetts.  That is great—I am truly happy for the people that will be able to take advantage of that program.  But reading about it, it soon became apparent that Janey won’t be one of those people.  The article acknowledged that—it said the state’s total population of college aged students with serious intellectual disabilities and autism is around 3500 to 4000, but that “a smaller number are likely to seek college access under the new law”. Then it said that those who do will “improve their chance of employment” and that “Individual campuses will determine their own criteria for acceptance”  There were quotes from students who accessed college under past pilot versions of this program, and while I was very, very happy for those students, the language level in those quotes made it clear that Janey was not going to be one of those students.

And none of this is new.  As I’m seeing expressed more and more, thanks to groups like the National Council on Severe Autism, people like Janey are left out not only from the mainstream but for a huge percentage of programs expressly for people with disabilities and more specifically, people with autism.  We all know the key words and phrases “Must be able to follow directions”  “Must be able to function with a teacher/child ratio of 4/1” “Must be able to read music” “Must not have any self-injurious behaviors” “Must be completely independent with toileting”.  They might as well be saying “Must not be THAT kind of autism.  Must be the “good, quirky, interesting” kind of autism, not the “bad” kind.  They don’t say that.   I am sure most people don’t even think that.  The truth is, I think a lot of people, even in the disability world, are not totally aware people like Janey exist.

I am weary.  I don’t know what the future will hold.  Janey turns 18 a week from tomorrow.  Tomorrow, we will be keeping her home from school—the teacher did not ask us to, but I know how her angry and lashing out moods can go, and we need to break the cycle.  Because there is no plan B.  We will never again take her to an emergency room.  There is no respite.  There is no residential home waiting for her as an adult.  Hopefully, at age 22, we will find her a decent day program, once she ages out of the public schools.  She won’t be going to college, special new law notwithstanding.  

I think parents of children like Janey are starting to speak out, and that is so important.  Parents like us love our kids so much that we can be inclined to not talk about how hard it is.  But if we don’t, if we let Janey and all the people like Janey be without a voice, they will be left out.  Nothing will change.  And on a night like this one, where I am tired and hot and weary and discouraged, I can say that just can’t happen.

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