An evaluation

Yesterday we took Janey for an evaluation at a local hospital.  :The road to this evaluation was long.  I had gotten a recommendation from an ABA supervisor at Janey's school.  We were looking for a team that would work well with the Boston schools and Janey's school in particular.  The previous evaluation we had for Janey through our health plan featured a strongly adversarial approach to the schools, with the words "catch them in a mistake and then we've got them" being used.  I really didn't like that.  I love Janey's school.  I am not ready to move her to another school.  I believe in inclusion.  So I wanted to work with professionals who accepted that and would go from there.  My pediatrician took a long time to give me the referral I needed for this evaluation.  I can understand that some.  He is committed to the team their own health network uses, which I think he was part of setting up.  And the hospital we went to yesterday is what was once known as the "city hospital", the hospital of the poor and uninsured.  It still is that, to some extent, but that is not what is important to me.  I wanted a place where public education was embraced, not seen as something to get out of however you could.  Anyway...a long introduction to how we ended up where we were.

Janey has been in a super good mood lately, and yesterday was no exception.  I could tell she was a little nervous being in a totally new place, but she loved all the elevator rides and was happy in the cheerful waiting room.  When we got called in, she eagerly went with us.  The evaluation was done by a developmental pediatrician and a 3rd year or maybe 4th year medical student---whichever is what is called a "fellow", although they were both women!  And they were great.  Right away I got a feeling that they got Janey and us.  They seemed to have a sixth sense about Janey, and saw that she was taking in a lot of what we were saying as we did some background talking.  So often, I find that professionals talk right in front of Janey about big issues, including things like residential care.  They seem to not realize how much more Janey understands than she lets one, but these doctors got it.  They had done a great deal of background reading of all sorts of documents we and the schools gave them, and so we didn't have to repeat a lot.

They started the evaluation with seeing how Janey's academic skills were.  As I would have guessed, Janey didn't show much of any of them.  :She identified a "B", but that was about all---she wouldn't count, or say any other letters, or show that she knew her name written down, or anything.  She was cheery, but not interested.  So they pretty quickly switched to non-verbal stuff.  Janey easily did a shape puzzle, and sorted circles of different sizes and colors into piles, and separated spoons from sticks.  She worked VERY hard at some nesting cups.  The doctor took them apart and asked Janey to put them back in the nesting pile, and Janey kept at it for about 5 minutes and finally did it!  I was impressed with her determination, although I know that's a skill that most 18 month olds can do with ease.  But Janey kept trying---she would get them in all except one, and the one was too big, so she'd take them back apart and try again, sometimes trying to put them in upside-down or trying to push them hard, but she finally got it!  She lost interest in the evaluation after about 15 minutes, and they let it end there.

During the testing, Janey was showing her personality a lot!  She sang bits of several songs, and she did a couple echolalia phrases.  One was from "The Goofy Movie", and said something like "That will create bonding between a father and a son!"  The doctor saw how it tied in a little to things we had been saying about our home life, and was impressed, I think.

After the testing, the doctor said that although the literature says it's possible to accurately test the intelligence of kids with low functioning autism, she doesn't really think it is.  They are not motivated to show what they know in order to impress anyone, and they only will participate if they are interested.  I agree about that.  She said she felt like she had gotten a good sense of who Janey was, and I think she did.  And then she said something that meant a great deal to me.  She said "You know, I really like Janey!  She's a great kid!"  She said it in such a way that it didn't seem like a line, like something she said to everyone.  She said it like she had seen what we see, what people at her school see, that she is a pretty cool girl, an interesting person.  That is what was noticeably absent at other evaluations and medical appointments Janey has had---the sense that she was seen as a person, as a cool person, not just as a case to be figured out or a problem to solve.  I felt like hugging the doctor.

We got back next week to get the feedback about the evaluation (without Janey there).  I am eager for that.  I know basically how Janey stands---I'm not going to be shocked by anything I hear, but the big thing I was going for with switching to this team is having someone to work with for the long haul.  They said at the end of the appointment that they want to follow Janey as she grows up, to help us get the help we need.  And the doctor summed up in a few words what is is we want for help.  We want to be able to have Janey happy, to be able to enjoy her and have her enjoy life, to be able to have a home life that is happy for her AND for us.  That is exactly what we want.  We are not aiming for Janey to learn academics much.  We aren't aiming for her to be able to live on her own, or hold a job, or achieve amazing breakthroughs.  We want her to be happy, to enjoy life, to be a full part of our family.  That seems so simple, but it's so helpful to have pinned down just what we need help with.  And I feel some optimism that with this team and her school and our family working together, we can achieve that happy balance.

The dream

I'm a hard core dreamer---I have dreams every night that I remember. But I don't write about them much, having learned that most people aren't really interested in hearing other people's dreams! Also, for whatever reason, I rarely dream about my kids. It always confuses me as to why, but in my dreams it's usually high school or college or some undefined place or time. Last night, however, I had a dream about Janey, and it has me thinking.

In the dream, I was taking Janey to visit a college. Janey was her same age as now, six. The college was an engineering one. Janey was as she really is, autistic. I had an interview with the president of the college, a woman that while being very polite, let me know that it was quite unusual to take a six year old with autism to seriously visit an exclusive college. I had the boys with me, and she pointedly asked why I wasn't taking THEM to the college, which would make a lot more sense. I had an answer ready for her. I said it was vitally important to have a concrete goal for Janey, so I could make everything I did with her work toward that goal, and my goal was for her to go to college to be an engineer.

I wonder what, if any, meaning the dream had. I don't think Janey will ever go to college. I am not working on that as a goal. But do I need a goal for Janey, a vision of what I want for her, for her future? I don't think that way, usually. I don't have goals for the boys, besides kind of vague ones that they be self-supporting and give me some grandchildren maybe, but I trust them to make their own goals. Janey isn't likely to do that.

So what are my goals, if I were to make some? Well, I'd like her to learn to read. That's a big one for me. I'd like her to learn enough self-help skills that she take basic care of herself, whether she someday lives in a group home or on her own or, most likely, with us. I'd like her to learn to talk well enough to clearly tell us how her life is going, so I won't worry constantly about what happens when she isn't with us. I'd like her to have an interest that makes her happy, whatever that might be---swimming, music, books, art, knitting, collecting some knick-knacks, whatever. And how can I work on those goals? I guess---keep trying to teach pre-reading skills. Keep working on things like dressing and meals (those are her stronger points, which is nice). Work on giving her the words to tell us about her life. Encourage the things she shows an interest in.

But is that what the dream meant? I don't know if dreams are just random, but this one felt like it meant SOMETHING. Maybe a reminder that she is only six, and I don't need to worry about her in the future at a college age right now? Maybe that I should be focusing more on goals for the boys? Maybe (I'm daytime dreaming here) that she has some hidden abilities and some day WILL go to college)? Who knows?

I promise---no more dream blog entries for a year or so!