Meeting Janey's school team and feeling lucky

I had a meeting today with Janey's teacher, her ABA therapist, the ABA supervisor and the director of Janey's section of the autism program.  The school arranged the meeting just to let me get to know everyone, to put names with faces, and to talk a little about their behavior plan with Janey.

After the meeting, I had a feeling that has almost always been my feeling after any meetings at any school my children have attended---a lucky feeling.  A feeling that I am extremely fortunate in having schools, teachers, therapists, aides and administrators that are dedicated, caring, professional and intelligent people.  I don't take that for granted.  I know that isn't the case with every school or district everywhere.  But it's been my experience over the 17 years I've had dealings with the Boston Public Schools, with very, very few exceptions.

Last year was a tough one.  I didn't want to move Janey from the inclusion school she attended, the same school her brothers had attended.  That school had recently been expanded to include preschool through high school, which in Janey's case would have meant until she was 22.  Just after that, we were faced with the fact that Janey needed something more than her school could give her.  She needed to be in an autism-only classroom, in what the Boston schools call an autism strand, where she could have the supports of not just a teacher but a whole staff devoted to autistic kids.  I resisted the change, but I knew in my heart it was the right thing to do.

Janey's new school is very big.  The autism program is only a part of it, with around 19 autism classrooms.  The K-8 school has around 800 students total.  Her old school was about 220.  That was a huge change.  But I'm gradually feeling a little more at home there.  It will probably never feel quite as much like a home away from home as her old school did, but what is important is how Janey feels, and I think she feels at home there.

I saw Janey for a minute today.  Her class was going to lunch (crazily early, at 10:30!)  She was in line, holding her water bottle and looking like part of the crowd (except for being a girl---there is one other girl in her class, but as will probably always be the case for Janey, the class is mostly boys).  She came over to see me for a minute, and I hugged her and said "You need to go with your class now" and she cheerfully did.  That was the routine.  That was the plan.

We talked a lot about Janey's screaming at the meeting.  I loved it that everyone wanted to deal consistently with it, and that they did understand that it's almost impossible to see what triggers the screaming.  Since no one method seems to work much better than any other, it makes sense for there to be a consistent approach to the behavior.  At school, when she screams, they give it as little attention as possibly directly.  If she is doing a preferred activity, they take away the activity and say "Tell me when you are ready"  If it's not a preferred activity, like desk work, they leave it in front of her.  If she moves to bite her arms, they put her hands down.  When she says she is ready, they go back to what was being done.  I told them about the screaming room (when we take Janey to the bathroom to scream if she isn't able to stop) and they liked that idea and might use that as an alternative for when the screams persist.

The last few days have felt more manageable with Janey.  The bus is getting more consistent and we are falling more into the rhythm of the school year.  I made sure to tell everyone today that they preserve my sanity every day, and I hope every special educator out there knows that although I don't like to throw around the word "hero" until it's meaningless, I'll make an exception here.  You are heroes.

ABA

Well, there is some news for all my faithful blog readers (of which I am not really sure if there are many, let me know!). On Friday when I took Janey to school, her teacher stopped me as I was leaving and gave me a paper, and told me to come in for a minute. It turned out the paper was the long-awaited ABA evaluation, and that one of the special ed coordinators wanted to talk to me about it. I went down to talk to her before reading the paper, and found out it was recommending 6 hours a week of ABA for Janey, and they wanted me to sign an amendment to her IEP approving it. So of course I did, before even reading the report. Once I did read the report, I found it to be both extremely accurate and quite heartbreaking. The woman who observed her is I think the head of ABA services for Boston schools. She really seemed to understand Janey well with just an hour of observation. Basically it said that despite 1 1/2 years of school, lots of therapy,supportive teachers and special ed placement, Janey is "not accessing the cirruculum in any meaningful way". So what I knew to be basically true, she is learning nothing. It listed all the things she couldn't do, which are all goals on her IEP---body parts, shapes,numbers, letters, etc. It said she seemed driven by inner stimulation. They tried to get her to respond to her name and she failed, responding 0 out of 10 tries (that is an ABA type thing to do).

I guess the services are supposed to start right away. I really don't know how they will fit in 6 hours of ABA in a 12 1/2 hour week of school which already includes 6 other hours of therapy. It shows how ridiculas a half day of school is for her.

The nice part was how thrilled everyone was she was finally going to get more help. The special ed lady, the teachers, the secretaries, everyone seemed close to tears over how they love Janey and how they want her to get more help. It really made me happy but also made me feel a lot of other emotions, like that I should have fought to have it be sooner, that they should have helped it be sooner, that I still don't think ABA is the way to go for Janey, but she needs SOMETHING I know, that I am so tired of all of it.

I also found out yesterday that Janey could go to a swim thing each Sat. now at the Hyde Park Y. They call it a social swim, but you have to be in the water with your child, and I can't see her socializing much while she is swimming. Regardless, we went today, and the whole family is invited so the boys get to swim too. It's a great chance for us all to get a swim even if Janey doesn't get socialized, and it's free. She swam today with 3 floaties and holding a barbel type thing "by herself". She does love the water as do all of us. The boys swim like fishes now. They look so graceful in the water.

Janey is singing more again. She sings all the words of Black Sabbath songs that William plays, and sings show tunes I play, and most any songs she's ever heard. She might not answer to her name, but the girl sure can sing.