Saturday, November 6, 2010

Realism and respect

Last week we had an ARD for John. That stands for Admission, Review, and Dismissal meeting, and it's the Texas way to say "IEP meeting." (And before we continue any further, no, I neither speak nor write in a Texas accent.) There have been several ARDs before, but this was the most significant, most substantial, and coincidentally the most successful one so far.

There's one small thing sticking in my craw after this meeting. It's not the placement or program, not the evaluations, not the goals. It's not how I was thinking they really weren't going to eat the cookies, until at meeting's end everyone suddenly launched themselves cookieward. It's an offhand comment made by one of the team members. Perhaps I even heard it wrong, or perhaps she was just lacking information. But it was one of those things that gives you a strange feeling when you hear it–a strange feeling that is unidentified until hours later. 

First, let me say this: I could never be a teacher or a school therapist. I find it hard enough to get up at 5:30 and still get my kids to school 15 minutes late. I couldn't have the strength to get up at the same time, get my own kids to before-care, and set up my classroom at 7 am, teach or go to meetings all day, and then be working again at night. To work with kids in diapers, multiple information-gathering requirements, administration, other teachers, NCLB, FAPE, ELLs, RTI, get the picture. So maybe in wishing for understanding in this area I'm not considering the demands of the jobs. But I'll still tell the story.

In late August it was decided (by a county official) what public school and aftercare program John, now 5, would attend. There was no time for evaluation, and even the first ARD was after the first day of school. We made a guess at placement, and the team started on their 60 days for evaluations.

With the 60 days now up, we were back at ARD in November with a total of 3 therapists, 3 teachers, 2 parents, 1 principal, 2 district staff members and 1 state support program rep squeezed into an office that was intimate, but nicely equipped with network computers hooked to an overhead projector. There were five evaluators who took a turn to speak and present their results. They have all been professional and communicative and more or less receptive, and they all seem to enjoy John. This one person took her turn and in saying how impressed she was with John's progress in the first two months of combined PPCD with kindergarten, she said it is amazing how he can write his name now given that he hasn't had exposure to that before.


I still can't put my finger on why I get angry every time I think about this. The story of when John came home a few weeks ago and independently wrote his name for the first time was so happy, and so beautiful. HE did it–the accomplishment belongs to him. And also, HE did it after literally years of work on his part, supported by family members and therapists. Somehow having someone assume that this happened in a few weeks without prior exposure is like being kicked in the back of the knee.

Inside me I have memories of all those things that we did, that John did, to lead up to the moment of writing his name. They rush back to me, out of order, vivid and textured by mother-love.

I remember when he was an infant, stuck straight like a board from CP, who more than anything enjoyed sitting in a bouncy seat with a weighted grocery bag strategically placed near him so that he could scratch the side of the bag for fun, since he couldn't grasp toys well. I remember working with him to hold things in his hands over years: first anything at all, then more difficult things, then things with purposes. Taking him across the country, by trainsometimes with him biting me or throwing up on the train!–many times to watch folks work on everything that would lead to that.

I remember that he wasn't interested in any writing utensils: not the crayons his sister was crazy for, not markers, not paint or chalk. I remember when I realized that driving a small truck through paint or rice would be similar to writing. And how many, many cookie sheets of paint and rice I made up, day after day, for him to do that.

I remember when we took him to one particular sitter/tutor/college student at the age of three, and in a single week she had him try chalk, markers, and paint happily.

I remember sitting with him at the kitchen table and over and over and over writing "John," "Mom," "Dad," and his sister's name and the dog's name. I remember writing it hand-over-hand. In marker, because crayon was too light for him to see with 20/200 vision and because crayon was too hard for him to push down on the paper. And writing huge outline-letter words for him to color in with the colors of his choice. And drawing pictures that he dictated to me; having him choose some of his favorite words for me to write for him.

I remember sitting on the bed with multiple pre-planned short tasks for John. One of them was large-print flashcards of common sight words, with large photos on the opposite side. At 3, he had memorized a few of the sight words.

I remember taking him to the city for OT and watching them work on holding the marker, making a circle, drawing straight lines.

I remember searching out phonics toys that would have large enough letters for him to see and easy enough buttons for his hands to work. Being thrilled to find the one Leapfrog discontinued toy that had 3 inch high puzzle letters to create words - and as a bonus, the letters each had Braille on them.

I remember buying another talking phonics toy and using clay to adhere a large Braille tile over each letter, and using the toy for many weeks and months.

I remember working with shapes: cut-out shapes, 3-D shapes, drawing shapes myself and hand-over-hand with him. And colors. And the alphabet.

I remember how he thought books were just for stimming with, by using his thumb to flip the pages fast and putting his face close to them to feel the rush of air. I remember having to choose a simple, rhyming book that I could sing the text of and thump the floor in rhythm to, to stop him from grabbing to page-flip and instead accept the rhythm and rhyming and thumping as enjoyable stimulation. That opened up a world where we could read stories to him and he would pay attention and even turn the pages at the right time.

I remember hearing that after our separation, his dad was reading bedtime stories on daddy days. I remember week after week of public library visits where I would search through books for stories John could see the pictures of, or even actually pay attention to.

I remember planning out a multi-year stepwise program with his caseworker from the Division of Assistive and Rehabilitative Services to transition him through different levels of being with non-parent adults, with other children, and with more and more structured situations, so that he would be prepared to accept instruction in a public school setting.

And, I remember John himself explaining how the teaching assistant wrote his name in dots, for him to trace. Knowing that it was the product of successful collaboration on the parts of three different team members and being thrilled. And knowing that this happened only a week after he announced that during language arts time one day he had been only willing to "scribble-scrabble" while the other students were practicing letters. (His great-grandma might say he was being a little stinker.)

Then, one day, he was drawing with chalk on the front porch. I came outside when he was finished. He had already crawled into the apartment and I looked down. That's strange, I thought, someone wrote J  o  h  n on the porch. His sister wasn't outside, so who could have done that?

I came inside and John insisted that he sit at the kitchen table and be provided with markers and paper. He took the first sheet. "I'm going to write my name." And he did. With a big J and little ohn. Sister and I were soooo happy for him!

Then he took another paper. "Now... I'm going to write the date."

I thought I might faint if he wrote the date as well. He didn't, but he announced the intention with such authority that I knew it would be only a matter of time.

Next John announced that he needed his own desk to do his homework. I shopped on Craigslist and the next time he came home after school, there was a 5-year-old size used writing table in the living room for him. He went to it and wrote continuously until bedtime. No bath, no story. He was serious about his desk. It's okay; he didn't stay at it every night, and it was so nice to see him on a writing binge.

The point is, John has worked long and hard to get where he is in every area. And we have all worked hard with him. If you are only just getting to know him, don't assume that the success you see him enjoying is due to a few weeks of effort in something he was never exposed to before. That's not realistic, and it's not respectful. 

And both John and Sister sometimes remind me and each other, being disrespectful may lead to the speaker's, as John says, having "to sit in the thinking chair!" Or at least getting a color card change.




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