Wednesday, June 17, 2009

Thinking about Zizi. And Mr. Rogers.

After watching James and I hold hands while "rowing" the boat this afternoon, Isabel let me do the same with her. It is the first time since she was a tiny baby that she was willing to have me hold her hands, without her feeling that she was losing her independence. She and James did quiet screams, and small, smiling, roars. It is such an amazement to me how quiet they both are. They can be loud, and Isabel can be very loud, but their general temperament is so calm and easy-going. I've been watching a long documentary on Fred Rogers rather slowly, and I find his way of talking about things is slipping into mine. I'm remembering now the song about how the very same people who are sometimes wet, are sometimes dry, and how the very same people who are sometimes noisy, are sometimes quiet. It makes me think, too, of what a friend said recently, that there is no one at all in the world who is always in control. Mr. Rogers said that feeling out of control is the scariest feeling in the world, and I think, you know, that he must be right. And so "What do you do with the mad that you feel?" comes to mind. I remember that I used to do a few of the things he mentioned--play angrily on the piano, and run as fast as I could. I wonder what I do now, now that we aren't allowed to have a piano, and running as fast as I can is too fast for the two children who are always with me. I'm not quite sure what I do with it.

I teach a class of girls from eight to eleven years old, and I happened to mention Mr. Rogers this evening, and no one had heard of him. I could feel my face fall as I thought of this. I tried to explain to them what he was like, and what the show was like. He is on DVD at our local library now. There is something about him which seems to affect me now as much as then, and, I can't help thinking, maybe even more than when I was a child. There is so much background to what he is saying now, that what he says fills in more experience than it used to do. I daresay this is more Mr. Rogers than you're used to hearing about from anyone these days, but it really has been quite astonishing to go back to him again. "It's you I like" has made me a better person the last few days, more than any goals I have made for myself have done. He says, that, too, now that I think about it--that it is hard to grow, unless you can be accepted for who you are right now. That simple idea helps me with myself, and with other people, too.

Isabel has some delays in receptive and expressive speech, which seem to be lessening lately. I'm encouraged by this, but confused about how much to worry, or to do. I know that if she had been my first child, I would have patiently waited and done nothing, and been sure it was the correct course. I am not so sure this is the correct course now, but neither am I sure I want to jump into evaluations and therapy, as helpful as I know they can be. I can't help feeling, in the back of my mind, that this, this way Isabel is "doing" language, is the way she has done everything else. She was watched, and studied, and she has done these two things for a long time, and then she has done it, all of the sudden. And I see a kinship there, with liking to read the manual of a camera from front to back before I turn it on, with the almost unconquerable desire to "start at the beginning", no matter how ridiculously far back that may be, and no matter how repetitive it may be, rather than to jump in the middle. But, I might be wrong. And she might need help. So we're easing our way into the pool, and I'm almost thankful for the wait list and endless backlogs before we can see the audiologist, and the developmental pediatrician, the speech therapist, and possibly the regional center. I'm hoping to somehow travel both paths, I suppose. Wait, and not wait.

In the meantime, I'm enjoying who she is. This evening, after James went to bed, Isabel and I looked at "Row, Row, Row Your Boat" and "Colors". She smiled and roared quietly some more, but it was the "Colors" book that piqued her interest. She turns to the yellow page, and says, "ba: ba: ba:" for the duck, then turns to the blue page, and signs "butterfly" with her hands apart, with many flappings. On the orange page she says "shhhh" for "fish". We talked about strawberries on the red page, and I signed "strawberry" a few times. She liked putting my hands together to make the sign.

Isabel also likes "What Does the Baby Say?", by Karen Katz. She gives her own version of most of what the baby says. Most of her versions are imitations of the rhythm and intonation, rather than the words. James is this way, too. Isabel's "talking" reminds me of the saxophone in Disney's "Fun with Music" saying, "well, what do you know about that?" in notes. I like how surprising her little musical outbursts are, and how shy and smiling. She is so very pleased with little things. I like that about her. James likes that, too. It is easy to make her laugh, and she likes to be caught when James chases after her. I love her serious face and bouncing curls, and the sudden outpouring of dust and bark all over her clothes when she dumps the bucket of tanbark all over herself with delight. And I like it when she says, over and over, "zizi. zizi. zizi." I love you, Zizi.

Wednesday, June 3, 2009

Another epiphany at the park

James, Isabel, and I were at the park at midday yesterday, and it was sunny and full of kids. James and Isabel had moved on from the smaller structure to the big one, and James was climbing up the arch, and sliding down the big slide. A bigger boy was playing with a little girl, and gently encouraging her up the ladder, step by step, and waiting for her to go down the slide with him. James was fascinated by this pair, and began following them, doing exactly as they did. Sometimes he would catch up, and sometimes he would be far behind. Sometimes he would just wait, halfway there, and watch them go down the slide, a smile on his face. When the boy started coaxing the girl up the arch, step by step, James, at first, followed to do the same.

Halfway up, he changed his mind--he wanted to come down, but the little girl was right behind him, and she didn't seem to know how to back up. He was losing his grip as he hung on, scared of a drop twice his height, and I plucked him out and put him down. He stood smiling, watching her go the rest of the way. It was then he seemed to decide on a new course of action. He waited at the bottom of the slide for the two to appear, and he'd smile at them. Then he'd accompany them to the base of the ladder or the arch, smiling up at the two children, and walk slowly towards the slide, his gaze never leaving them until they reached the bottom again, and he would laugh. At first I loved this, and then, quite suddenly, I worried, why doesn't he follow them anymore? Why did he give up?

I'm happy now that I had read, many months since, an experience by a fellow mother with a son with Down syndrome. She had seen him playing tag with friends, and it seemed, that though he was smiling and having fun, that he was always "it". This dampened her enjoyment in their game until she felt she had to say something. The children were embarrassed, and she quickly realized that she had spoken as if her feelings were her son's, which, she saw suddenly very clearly, they were not. He liked being "it". He loved being the center of the game!

And so it was this that immediately came to mind, and it brushed away the worry in one clean stroke. James loved watching them, and he loved his own small part. They smiled when they saw him peeking over the tunnel slide, every time they came down. He was a part of the game, without interfering, and his delighted appraisal of their every move seemed to make the already wonderful little pair a little brighter, a little more worthy of admiration.

Isabel, meanwhile, was happily sucking on tanbark.