Monday, January 29, 2007

Was looking over some pictures I took at the zoo. She looks very Downsie in them. I don't like those pictures. Perhaps I should get used to it. Perhaps she'll look more "Downsie" as she grows older. My favourite pictures of her show what's inside-- glee, curiosity, delight. I wonder what people who wander by when she's looking Downsie think? It's so recognizable, and it makes for easy classification-- gone is the excited/angry/affectionate child, and left is the down syndrome child-- who is happy, easy-going and loves music, etc. It's like the down-syndrome child is a changeling for my delightful Ellie girl. So I don't publish those pictures-- they're not of Ellie, they're of someone else.

It's funny that it's only through the camera that I see Ellie with down syndrome. She's so engaged, so fluid, that I rarely look at her and think about DS. The camera reminds me. And I'd rather not be reminded.

I think we celebrate her achievements more because of DS. Every word, and proto-word is held up for examination, and as proof that she'll be ok, she'll be high-functioning. Little changes in movement patterns that other parents might miss in their crawling/walking/running/jumping children get lots of attention, analysis -- did she really do that? Will she do it again? Is it a step forward, or something we need to discourage? Perhaps I'm imagining it?

We can't take her development for granted, so we pay it lots of attention.

Today at the shopping centre Ellie and I were having coffee and we saw an intellectually disabled older woman. She was very big, broad shouldered, with a sister or helper or someone. She'd done her shopping and was talking about it to the other woman. She seemed relatively independent, but was obviously looking for encouragement, assurance. So perhaps although she could do the task, she wasn't at all confident, or self-directed?. Anyway, this isn't what I want for ellie. I want her to have goals and be interested in doing things. I'd rather she was forgetful, impulsive, and not great at planning ahead than she needed other people to give her goals. It will be more fun for her that way.

We also saw a couple of younger people with DS, probably coming home from work (wherever that would be?) They were moseying along, just like all the other commuters. Seemed to be doing well. That one was close behind the other would indicate they were coming from the same place, which might be a sheltered workshop or something, which doesn't sound that great. But I don't know, having never been near one.

Not having any experience with older people with DS is hard-- I don't know what is realistic to hope for Ellie, and I can't really imagine what she'll be like when she's older. Or I can, but I've no faith in my imaginings. No parent knows what's going to happen, but most they have parameters in which to dream.

Tuesday, January 23, 2007

What I like about being the homemaker
  • knowing what stage different activities are at
  • not running out of stuff, cause I maintain the shopping list when something is near to finishing
  • walking in the park
  • hanging up laundry
  • picking ellie up after she wakes
  • stacking the dishwasher my way
  • having a bit of time to reflect and write
  • planning the day, and mostly being able to achieve the plan
  • shopping with ellie
  • bathing ellie
  • vaccuuming the living room
  • not having to do much that I don't like
  • cooking new things

What I don't like
  • answering the stupid phone (mostly cause it's telemarketing)
  • not much variation in the routine
  • not having uninterrupted time for my own pursuits
  • getting up in the middle of the night (doesn't happen often)
  • screwups to my system (Ellie not going to sleep when I expect her too, not being told we're out of something, finding half done chores that I didn't start)
I've got some Wiggles songs on my phone that I play for her when she's going to sleep. She's always been interested in the phone-- she turns it round and round, and holds it up to her ears, and shakes it, and waves it about. I think she likes that music comes out of it-- more than one of her rattles, say.

We've invented a new game with the phone. She puts it down the neck of my t-shirt, and smacks it around until she can get it out of the bottom of my shirt. I pop it down her shirt sometimes too. She giggles a lot-- I don't really get the joke, but I'm happy to play along. It's interesting-- she often loses track of where it is, even though the music is still playing, and I would have thought she could use the sound to find it. I guess that's something else that's learned. Also, she doesn't discriminate between the hard phone and the soft me when she's banging at me, trying to get it to drop down to where she can pick it up.

I've been feeling very flat recently, very low energy. So on top of not having much energy, I feel quite guilty that I'm not putting in the energy that she deserves. I play with her sort of tiredly, abstractedly. I'm not present with her. And I notice a big difference when mama comes home and has stacks of energy for her-- much more interesting play, and Ellie laughs and giggles a lot. I think it was the other way round when I was working and J was home. Though J is hardly ever flat and low energy.

I really feel that I have to snap myself out of it, cause it's not about just me any more.

Thursday, January 18, 2007

Last night we played a guess which hand has the grape game. She caught on reasonably well, and giggled a lot.

She got a new Wiggles DVD, and held it till we got to the cashier, looking at it-- obviously recognising it, and excited. She knows when things are for her-- Xmas was nice in that way.

Dancing to the wiggles is really good for her. She stands up for almost a whole movie (40 mins), and moves around, lifting her legs up, and leaning on the table to free her hands for some of the actions. A very visual learner? She certainly loves movement. Maybe we'll put her in dance classes when she's three.

Friday, January 12, 2007

One of the most amazing things about little babies is their person-ality. I've been organising some of our photos, and Ellie's personality just shines through. I think, though I can't be sure, that this is something that's really only apparent to people who're close to the child. Other people's babies are annoying, or boring, but every small change in our baby is indicative of a rich inner life. She seems much more like a little person who can't talk than a baby-blob, and she always has.

Thursday, January 11, 2007

Ellie has changed her style of typing on the laptop. She used to bang on the keys with her fists, now she moves her hands over the keyboard quite gently-- not even depressing the keys. Probably a better imitation of what she sees us doing.

She has a pink hat that she really likes. [pic] She'll put it on by herself, and even straighten it. It takes a few tries-- she still tries to put it on upside down sometimes, but this frustrates her and she screams at it-- so she knows it's wrong. She has her father's limited patience with misbehaving tools.

She's climbing to stand all the time now, at the coffee table or the sofa, or on the sofa back so that she can peek over. She tries to stand without help, but it doesn't work yet. She's getting stronger though-- she's begun cruising along the furniture, and she shifts her weight from foot to foot to dance along to the Wiggles.

J. and I are amazed at how she learns from the wiggles. She watches the dances, and imitates the movements. We knew she loved music, but we're surprised how quickly she learns the actions. They're rough of course, but they're there. She can watch them for hours-- she perches on the coffee table with the laptop (safely) in the middle, and does actions one hand at a time, holding on with the other. It's probably really helping to strengthen her legs, because she stands up for 20 minutes or a half hour at a time, if not longer. She'll sit down briefly, then be up again.

You can just tell she's longing to be walking. She so obviously wants to be like us-- she doesn't want to be dependent, she wants to feed herself, with the same sort of food that we're eating, she wants to be able to walk around, she wants to read the big people books.

A lot of stuff seems to be coming together for her right now, it's quite lovely to be a part of her growing up.

The other day, we were over at J's cousins, and her cousin fell asleep. Ellie thought this was very funny-- she pointed, did the sleep action (she'd learned from the Wiggles' "Rock-a-bye your bear"), and laughed.

Monday, January 01, 2007

Today Ellie stood up by herself. I missed it (my partner told me), but it should soon happen again.

I often play mp3s from my cell phone to put her to sleep. Today she really wanted to hold it, so I let her. She held it up to her ear, and settled down. I turned the volume down a bit. She had quite a grip on it. Very cute.