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Saturday, November 2, 2013

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.


Sophie's Trains said...

Awesome! You know I think Janey is a great kid too! I also think it is very difficult to gauge exactly the "intelligence quotient" of our girls. Sophie doesn't have many quantifiable skills (except her pecs now, which has been charted and documented on clipboards and binders). But because she can't "point to the cat" in the picture- does that means she doesn't understand the concept of a cat? Doesn't understand the term "point to"? Doesn't feel like it at the moment? Is preoccupied with other thoughts/sensations? It's impossible to say. Of course to someone observing it might be a simple "can't point to cat at 3, globally delayed, cognitive ability of an 8 month old". Well I just can't see it that simply :) I'm glad the doctors loked at the "whole picture" of Janey. Also agree with not talking about her as if she isn't there.

Suzanne said...

That's exactly on with the "point to the cat"! And strangely that was one of the tests they asked, exactly, that she couldn't do! I KNOW she knows what a cat is, I know she knows what pointing means, but there would be no way on earth to prove either of those through her actions at that moment. In reality, I know that any evaluation would show that Janey was developmentally disabled (which is I guess what they switch to from globally delayed after a child turns 8, because they figure it's not going to change) but being around her, as I imagine very much being around Sophie is like, doesn't feel like being around someone who matches those words. In fact, being around almost any child I've ever been around who has a label of what used to be called retarded, once you get to know them, doesn't feel that way. Every child has strengths and cool things about them and understanding that goes beyond labels. I used to read something like that and think "well, of course that mother has to tell herself that to not get all depressed" but that was a thought of someone who had not been around enough children like ours!

Antti said...

Exactly! Give Ville an iPad and it seems that he almost doesn't get it at all.But if you tape his III-V fingers so that they are out of the way, his performance improves significantly and many abilities are revealed. The brain is a very complicated thing and easily makes mockery of those who too readily confuse explanations with descriptions.

Anonymous said...

I gotta tell you...this made me so happy I teared up. Good for you guys, Suzy. I would love to meet Janey someday and spend time with you all. Lexi and I have been watching her grow up over the past few years. <3

Freeyoke said...

My daughter has an evaluation at the Marcus Autism Center this week in Atlanta but I'm not really sure why we are going to shell out a few hundred dollars out-of-pocket for single visit. Ok, I've got money left on my HSA account but still it's our money My wife will spare no expense on any advice while we have $5.84 in the checking account for the next few days. IEP evaluators recommended continued speech and occupational therapy as if the nearly $3000 spent in the last 9 months was chicken feed. You're a bad parent if you use your calculator which may explain the soaring health care costs in this country. Most people don't question costs because they are aren't paying or the insurance coverage is supposed to be such a bargain. I'm not quite sure what this part means: "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've read some parents take schools to task because they want to maximize whatever benefits they can get for their kid. That's understandable but I know there are financial limitations and I'd push for it if I really thought there was some form of education would help enough to worth the time and effort. That sentiment runs deep in my family as my Mom had a Do Not Resuscitate order as one of her final wishes before she died. I don't mean to sound crass but it's my family with a backdrop of a current national debate on healthcare costs and insurance coverage. Lastly, if you're under the impression that autism research is a top research priority, you'd be mistaken. For FY 2012, the feds spent $192 million researching autism. It was 102nd out of 235 Research/Disease Areas.