The Quest for Help

The big 11th birthday is over.  It was a good one, truly.  Janey was happy most of the day.  Our dear friends invited us to a BBQ/Birthday/Going off to college party, and we all had a wonderful time.  Janey lasted there longer than I think she has at anyone's house for years, with just a little break for a car ride in the middle.  She adores my friend Maryellen and her daughter Julia, and we are so thankful as always for friends that value and love Janey.  Freddy had a very good birthday too, and we felt quite happy about how the day went.

The night was another story.  We realized, way too late, that Janey had had far too much chocolate during the day.  She didn't sleep, not a wink, until about 4 am.  She wasn't tired at all.  She didn't scream, much, but she didn't sleep.  It was like it was daytime for her.  Tony and I traded off shifts and both wound up exhausted.

We couldn't sleep in this morning, as we had a 8 am appointment at the Lurie Center, the autism clinic.  We'd put off the appointment several times due to Janey's illness, so we needed to go.  We dragged ourselves out of bed and made it on time.

The doctor I saw (mostly just me, as Janey wasn't having any of it and only lasted about 3 minutes before Tony had to take her out of the room) was the same one we saw before, a very thoughtful and knowledgable woman.  We talked mostly about medication, and ideas she had for ones that might work better for Janey.  The problem is that very rightfully, a child should have only one psychiatrist prescribing medication, and Janey has the psychiatrist she'd had since she was 5.  We need to make a switch to use the Lurie Center for medication, and we aren't sure what to do.  I think the Lurie Center knows more about autism---I know that, really, but we like Janey's current psychiatrist and he's always been available when we needed him.  And we are never sure about medication, and tend to be very conservative about it, so we need to make some decisions.

The other talk, just briefly, was about help and respite.  Basically, we went over the fact there is none.  Starting this fall, Mass Health will cover ABA.  The problem is, ABA isn't respite.  It's a very specific kind of teaching that more and more, I don't think helps Janey at all, and might actually hurt her.  It's well meaning, it's often extremely skillfully done, but reading school reports and looking at what 7 years of ABA have actually done for Janey---well, I don't think adding more of that to her life is going to help anything.  It's certainly not going to reduce her stress or our stress.  So---basically, more ABA isn't going to do a thing to help.

I jumped on a few opportunities our local autism agency posted, without thinking them through too well.  They were hosting an evening at the Children's Museum, just for autistic kids.  That might be okay.  It's certainly not respite, and getting there will not be easy, but it's something.  Then, there was actually a drop off, one to one program.  In my delight that something like that was offered, I RSVPed right away.  Finding out more about it, I realized it's in a place only accessible reasonably by public transit, and not directly by that without changing trains, and that it's to go to a plaster craft activity.  I can't take Janey alone on the train.  She will have no interest in plaster crafts.  I'm still going to try to go, because the lure of 2 hours of respite while she's at the program draws me in, but I will need to bring someone else with me, and I am very worried Janey will not make it through the time, based on the last time I attended an activity, with both Tony and me THERE.  She was the only child I saw there who needed to leave, basically because she was kicking me in the head.  The third activity is a field day, not drop off.  I will try it.  I am glad there are activities, and I hope they work, But 11 years of Janey have led me to a deep form of realism about such things.

Today, we got the back to school information.  I had planned to sign Janey up for after school this year.  We didn't last year, because it was only going to last until 4:15, and Tony wouldn't be able to drive there to get her.  The drive is at a very busy part of the day, across town, and increasingly, I can't drive if it's dark at all.  But this year, it was going to run later, until 5:15, so we planned to try it.  The flyer in the material today said the program will have a 17 to 1 ratio.  I called the school and talked a minute ago to the very nice director of the program, who informed me that due to a lot of budget cuts, they are unable to serve kids that can't work under a 17 to 1 ratio.  She did understand that means basically NONE of the kids with autism at Janey's school can attend the program, not just Janey.  Some kids in her program could handle maybe a 5 to 1 ratio---not every kid needs one on one like Janey---but I don't think there's many autistic kids at all that can be in a program with a 17 to 1 ratio!  I asked her if she knew of any people I could call to try to get them more funding, and she said she appreciated that and would look into it for me.  About half of Janey's school, 19 classrooms, I believe, are for kids with autism.  It's kind of sad that the city won't fund afterschool for them.  And kind of a blow to our plans for using afterschool for respite help.

Reading all this back, I worry I sound like I'm being a no-win kind of person.  Instead of saying "Wow!  Now Janey can get ABA and go to a art activity and after-school!  They are all open to kids with autism!", I am saying none of them will likely work for Janey.  This brings us back to the doctor this morning, who completely understood what I was saying.  She said the big umbrella of what is currently diagnosed as autism very often doesn't cover the kids at the extremes.  There are many, many kids with autism that would be, and are, very well served by what is out there.  But for a child like Janey, with a severe intellectual disability, with self-injurious and aggressive behaviors, with tantrums and limited speech---well, anyone who has spent more than a few minutes with Janey gets it, right away.

This is a long entry.  If you got this far, thank you!  I am half working this all out in my head.  We'll keep on questing, and keep on writing about it.  Meanwhile, the birthday love so many of you sent our way keeps us going!