The Big IEP Meeting

I should write about today's IEP meeting while it's fresh in my mind, as it was an important meeting, one that will affect the course of Janey's life and ours for years to come.

There really weren't any big surprises at the meeting.  First we heard from everyone who works with Janey about how she is doing---the regular ed. teacher in her room, the special ed. teacher also in her room, the speech, OT, PT and music therapists, and the ABA instructor and her supervisor.  It's always amazing to me to see what a big and caring and wonderful team Janey has---all thoughtfully relating Janey's progress and non-progress.  Basically, she is making progress, and doing things that she couldn't do in the past---matching objects, sorting objects, taking turns at times, using PECS communication more and more and writing her name with ease (which she will never do at home!)  However, everyone agreed that her moods and her difficult behaviors very much impede her progress.  She often will do something one day, but then refuse to do it again.  On bad days, when she is biting herself and lashing out at others and screaming, it's very hard for her to learn at all.

So, at about the middle of the meeting, there was a big pause, as everyone in the room I think knew what was then going to be said---that Janey needs a new type of classroom.  She needs to be in what is called a substantially separate classroom, and because her current school is an inclusion school, she needs to move.  She will move to a school with a large autism program, a program that has existed for a long time---at least 18 years that I know of, which is an eternity in the world of autism.  It's the school I visited, and I was determined at that time not to want Janey to be in.  I've come around since then, and I do feel it's the right decision to move Janey.  We owe it to her to give her a shot at learning more, and being in an environment made for children with autism.  I was impressed with the ratio of children to adults there, with the kindness and patience of the teachers and therapists and aides, with the progress the kids appeared to be making.  I am hopeful Janey will do well at the school, and once the IEP is signed, we will start transitioning her there.

All that being said, there was a lot of crying at the meeting---not just mine.  The principal sat in on part of the meeting, and tears were in her eyes a lot of the time, as well as in almost everyone else's.  As the principal said, the Henderson School is Janey's home.  It has been for years and years.  She first set foot there when she was 2 weeks old (or earlier, if you count my pregnancy).  I have had a child there for 14 years now.  I love the school.  I truly, truly love it.  But what I love, and what I am comfortable with, is not what is most important.  Janey's needs are.

We will stay in touch with the Henderson.  Janey may still go to after-school there.  We will take her to the spring dance.  We will visit.  And some day, we will bring her back.  The Henderson now is going to be a K-12 school, and at some point, when Janey is ready, it will be her school again.  That is my hope, anyway, and the hope of the staff there.

So, for now, I am going to just try to enjoy these next weeks.  I'm trying hard to stay positive, because I know there is a lot to be positive about.  It's a positive thing to have a whole room full of people working to help Janey, to have a school full of people that love her, and a new school to go to that I do hope will love her too.  We are all hopeful that Janey will be able to progress well at her new school.  But, I do admit, the tears keep sneaking out here and there.  I guess any big change feels scary, and one involving a child like Janey, doubly so.  But we are not going through this alone---we are very lucky to have many others helping us, and I thank all of them for their past, current and future love of my precious girl.

Sally Cat and Regression

Sally Cat showed up today.  She does, now and then, I guess when I am in need of a good cry.  She is a pink stuffed cat that meows when you push on her.  She was bought when Janey was 2, on a trip to the Gap.  Janey asked for her, and although she needed a new stuffed animal not at all, I could tell it would be a battle not to get her, so I gave in.  One of the many things about Sally that makes me cry is that that was probably the last time Janey ever asked for a toy in a store.  I wish I had bought her with enthusiasm.

Janey loved Sally, for a brief period---probably about four months.  She named her herself, when I asked her the name.  I don't know where she came up with Sally, but at the time, I didn't wonder that much, as you know two year old---going through that language explosion and saying all kinds of things.  We took Sally everywhere we went, and she was part of the family, as kids that age get with a favorite toy animal.  Then came the summer of 2007, and the horrible regression.  By the end of the summer, Janey no longer had any interest in Sally.  She couldn't say her name, or much of anything else.

I showed Sally to Janey today, and kind of hoped for a miracle.  I don't do that a lot.  And I didn't get one.  Janey did her not-look looking at her and tossed her aside.  I said "This is Sally!  You used to love Sally!"  No answer, no recognition that she had heard me.  Par for the course.

I don't think much about Janey's first 3 years.  I can't.  I just can't.  If I do, it's too hard.  I tend to remember only the early signs something was wrong, and not the little girl who talked well, when she wanted to.  I think, though, sometimes, about the last visit from the PT who saw Janey in Early Intervention, before they discharged her, saying she no longer needed services.  The PT was great.  She said "Please always stay in touch with me.  Janey is so bright and talks so much!  I can't wait to see how she does at school!"  I never called her.  I never could bring myself to.  I didn't want to see or hear her shock.  It's easier sometimes to pretend that Janey never existed.  It makes acceptance easier, and I do accept Janey as she is now.  Of course, she is the same person she was then, but sometimes, somehow, it's easier to almost pretend she isn't.  I have heard that the notion of changelings might come from autistic kids in the past that regressed, and I can see why.  It's like someone came and took one Janey and replaced her with another, identical looking Janey.

But I won't write about that any more right now.  Even writing about it is too hard.  I put Sally away, where I won't see her for a while.  I would never get rid of her.  She's a keepsake of a time that I do accept isn't coming back.  Sometimes, when I see parents in stores exasperated at their kids for asking for every toy they see, I almost want to tell them the story of Sally, and tell them---buy the toys.  Buy them, because you never know.

It's not a race

If you have spent much time around little kids around age 4 or 5, you are probably familiar with the stage they go through where everything is a race.  You give a couple of them a glass of milk, and you are sure to hear someone say "I won!  I drank it quicker!"  And you are sure to hear yourself saying that classic line "It's not a race!"

That line was in my mind a lot after our meeting with the developmental pediatrician.  The more I think about the things she said, the less I agree with her.  She first tells me how poorly Janey did on the intelligence tests, which was not the problem.  I expected that.  But then her advice, which is all centered around school---more specifically, feeling that Janey is not making the maximum possible "progress" in her current "placement".  Janey is not learning as quickly or as much as she possibly could.  She grudgingly heard what I said---that I was extremely happy with Janey's school, that I would not consider moving her, that I loved the people who worked with Janey---and then went back to saying basically that she was not getting "all she needed"  Janey should have a one-on-one aide, she felt.  She should be in a separate classroom.  She should be being taught intensely.

And I have been thinking ever since then---WHY?  It's not a race.  We know Janey doesn't learn in a typical way.  She doesn't learn in steady lines.  She learns in an unusual way, and she learns slowly.  Janey is not going to college.  She is not going to get a high school diploma.  She is not going to hold a job.  I am fairly at peace with those facts.  And so why in the world would be it even something I'd consider to move her from a school where she is loved, cared for, taught by people who understand her and are interested in her, where she is surrounded by kids who are kind and compassionate and have grown up with Janey, where people know not just Janey but our whole family?  Why?  So she could show a little steeper rise on some chart of progress?

Janey's IEP meeting was a few days ago, and I left it feeling as I usually do after such meetings---extremely happy.  Teary-eyed at being in a room full of people who love Janey, who get her, who are fascinated by her, who see her clearly---not as a statistic, but as a little girl---an unusual little girl, a little girl with behaviors that can sometimes be very tough to deal with but other times can be incredibly touching.  And people who are giving Janey exactly what she needs---not just in terms of love but also in terms of therapy---speech, OT, PT, music therapy and ABA (which they increased, without me asking).  

I've started a book called "Far From The Tree" by Andrew Solomon.  It's a huge book, and I think I'll be writing about it a lot more.  It's about the relationship between parents and children when the children are very different than the parents, by means of having a disability or other difference.  I love it so far.  One early fact related struck me as relevant to my recent thoughts.  It spoke of how fewer than one in ten professionals (which I am taking to mean psychiatrists, pediatricians, etc, and not teachers or therapists, although they are certainly professional also) found meaning in the struggle to raise children with special needs.  Most of them see it as a tragedy---see the lives as a tragedy.  If that is the case, I can see why they would think that even small improvements in the "outcome" would be worth making drastic changes in the child's life.  I'm sure this is not always the case, but I can see that it sometimes is.  

One gift that having Janey gives us is the gift of time, of not having to rush.  With the boys, there are grades to be completed, tests to take for college, deadlines, must learn now subjects.  With Janey, there is her whole life ahead to learn.  She doesn't need to hurry.  She isn't going anyplace soon.  She will be here, with Tony and me, for a long time.  She can take her time.  She can enjoy her life.  It's not a race.

Reports and questions

I got reports from Janey's 3 specialists today. The speech one was mixed---fairly positive, saying a lot that Janey was talking more in the last few weeks, which is true. But it's hard to measure and quantify her speech issues. They said she talks in an average of 5 word utterances, which is probably true, but those 5 words often make very little sense, or do in such a cryptic way you have to be a mind reader to understand them. They said she is starting to greet known adults by name and with a wave, which is once in a while true, but not consistantly at all. I love the speech therapist, it's not that I don't like what she says, more that it's just so hard to put on paper what is so off about Janey's talking. A good example today was her yelling out "I made a big Itsy bitsy Spider". I turned and saw she had wrapped yarn around her feet and was all tangled up, like a spider web. It's that round about way she often expresses herself. She also wanted her little cloth chair off her crib today, so just kept saying "Everybody sit in their seats" without motioning at all to the chair, I just figured it out by chance. It's like the connection that allow people to say things in a straightfoward way just aren't there.

The OT had a more discouraging report. Basically it said all Janey wants to do at OT is play with shaving cream, and she has little attention span for anything else, shows no pre-writing skills or drawing skills, etc. It made me want to say...put the damn shaving cream away for good, what does she need it for? She's not tactilely defensive, she is FINE with touching anything. I have never met the OT and hear only wonderful things about her, and I'm not trying to put her down, this is just frustration talking.

The PT was very positive and I agree there. I've seen so much progress in that area.

Janey says "I'm stuck" a million times a day. I think it's her description of how her mind feels when she gets upset--like the words are stuck, she's stuck in a feeling she doesn't want to have, a tune is stuck in her head, she is just stuck. Then she usually says "Body help me" (somebody help me). I wish I could do so better.