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.

What Do You Do With The Mad That You Feel?

I loved Mister Rogers.  In fact, I loved him so much that (and I don't think he'll mind me telling you this) I named my son Frederick in his honor.  I wrote to Mister Rogers about this, and got back a wonderful letter and signed picture.  They are one of our family's most prized possessions, and they will of course be Freddy's some day.  So today, I wasn't surprised when one of Mister Rogers' songs came into my mind when thinking about my tough morning with Janey.  Here's a link to it (link)

The question in the title of the song is what I've been asking myself about Janey.  What CAN she do about the mad that she feels when she feels so mad she can bite?

This morning, Janey was resistant to getting dressed.  I think it was because she had to go to the bathroom, but didn't tell me.  Once her clothes were on, she wet them, and so needed a new set of clothes.  Her bus comes very early, about 6:20 am.  It was about 6:15 then, and I had to hustle to get her new outfit on.  She was playing with her iPad.  I told her to put it down and I would dress her.  She ignored me.  I asked her again, and again, was ignored.  So I took it away and told her to stand up to get dressed.  She was furious.  And, in an instant, lunged at me, trying to bite me and succeeding in pulling my hair very hard.

I was thinking about the whole incident a lot today.  Up until the lunging, and aside from the clothes getting wet, it was not unlike many mornings with my boys when they were young.  Morning often involve struggling to get kids ready, kids getting involved in something else at the wrong time, kids ignoring their parents, parents having to take away whatever is occupying the kid, the kid getting annoyed and angry.

That's where I think it gets tough for Janey.  What DOES she do with the mad that she feels?  She doesn't have the verbal skills to tell me how she feels.  She doesn't have the self-control to just simmer internally.  She doesn't have the understanding of time to realize that yes, we needed to hurry.  She saw it simply as me taking something she wanted to have, and she was angry.  Very angry, as she doesn't normally lash out like that, and hasn't for a good long time.  But as the song said, she was so mad she could bite.  And what COULD she do with that?

That's what I need to figure out.  That's what I need to help her with. And I honestly don't know what the answer is.  I always explain why I'm doing things, and although I don't remember my exact words, I'm sure I said something like "Janey, you need to put that down.  We need to get dressed for school.  The bus will be here soon"  And she DOES have the understanding of phrases like that.  She can follow rather complex directions, and I am quite sure she understands enough to know what I was saying.  But so do typical kids, and still, they don't always do what they are told.  Of course they don't.  And of course she's not always going to.  I wouldn't want her to be a robot, immediately following orders.

If it had been the boys in that situation at that age, I can well picture what they'd say, something like "I KNOW I have to get ready!  I'm going to be ready in time!  Just let me finish watching this one thing!  It's very important to me!"  And I can picture my answer back "You can watch it after school.  There just isn't time right now" If they were mad, they would let me know, and if I were annoyed, I would let them know.  But with Janey, that level of dialogue is not something she can do.

I don't like to write about Janey being aggressive.  I hate to write about it.  But I am, because I've been told by so many people that they are dealing with the same issues, and many of them have said it helps to know they aren't the only ones.  And I like to live in reality.  I would like to only write about the wonderful parts of Janey, or the progress we are making.  But the fact is, raising ANY kids involves some conflict, some anger, some tough moments.  If we pretend that isn't the case with our kids with autism, well---it's not reality.

I need to work on how to help Janey with anger.  I don't wish away her anger.  It's a normal part of her.  As Mister Rogers says, I will say to Janey (and William and Freddy)---"I love
you just the way you are"  And I will do all I can to help you find your way in this world, and to figure out what to do with the mad that you feel.