Expectations

This American Life had a story recently about how people’s expectations can actually significantly affect behaviours. For example, if you are told that an animal is of low intelligence, that animal will actually perform more poorly on seemingly objective tests than an animal you think is smart. The same sorts of effects have been shown on humans. Another mother has done an excellent summary of the podcast, though I do recommend you listen to it.

The idea that people’s expectations affect you is actually a terrifying prospect when you have a child with a highly visible disability. But I have seen this in action with C. C is assessed by quite a few medical professionals, and often when she’s being “tested” she’ll often blink passively and smile. On the other hand, when she’s with the therapists who actually have expectations and goals, who sometimes think she’s capable of more than I do, she can perform. When we’re with friends who know her social little personality, they interact with her and she calls out “Hi!” and respond with a nod or a “Naaah” to questions. When we meet new people, many of them seem to assume that since she is quite physically involved, she is not very aware. And she reflects that back – or rather, she reflects nothing back.

I realised too that the way that I interact with C is very different than her siblings. When she does something, it’s a marvellous feat with many cheers. When B does something, I’m more restrained, because it’s expected of a typical child. I’ve been trying to tone this down – instead of cheering like I’m at the Olympics, I’m experimenting with being a bit more directive, and just a bit more… normal. “C’mon, pick up the spoon.” “Help me put on your shoes.” Sometimes these aren’t even things I think she can do – and she surprises me. Today I put a drink in front of her and said “Here you go.” She grabbed the mug and brought it to her mouth. Not much got in, but it’s a start. And I noticed that after encouraging her to help with her shoes a few times, she now reaches for the straps without prompting.

This idea about expectations also makes you question many other assumptions about disability. For example, as CP parents we are often told that by age five or so, CP is “decided.” If you’re considered moderately or highly involved you don’t get better.  If anything it gets worse. The brain is less plastic. And yet, there are many anecdotal stories of people experiencing improvements from brain injuries even in adulthood. The same reporters who did the story on This American Life have a new podcast, and one of the first episodes is about a boy who, after an illness, went into a coma-like state. His parents were told he had the intelligence of a three-month old. And yet, after years of living like that, he emerged and made a tremendous recovery. The common factor in these apparent miracles is that the individual met someone who didn’t have preconceived notions of what they could achieve.

Toys for a child with cerebral palsy

When you have a typical child, you get them toys, and you don’t really think about how much learning they do through play. You don’t realise that the blocks are teaching spatial awareness, that those annoying toys with 100 buttons are teaching cause-and-effect, and the shape sorter is teaching object permanence. But when your child can’t play with those toys, you notice.

I thought I’d do a little round-up of some toys that have worked well for C, whose arms and hands are fairly “involved.” At a year and a half, things like passing a toy from one hand to another, bringing her hands to midline, or even releasing something from her grasp are skills she has not yet mastered. All of these are my personal suggestions and there are no affiliate links.

1. Pen and paper:

I might not have thought to try this except that her sisters love drawing. With some assistance to get it in her hand, and a little coaxing, she got the idea of dragging it across paper and making a mark.  We bought giant crayons at a local art store, but turns out she prefers the regular markers.  We tape her paper down with painter’s tape to keep them in place. When summer comes and we can be outside, and the girls can hang out in their diapers and wash off in the kids pool, I’ll probably experiment with paints too. The idea of cleaning up that mess in winter is restraining me for the time being.

2. Magformers

Anything magnetic is great for C. These little tiles are fun because she can pull them apart and together and they sort of make things without too much effort. They also encourage her to bring her hands together as they make a satisfying sound when they clack together. The ones we have are called Magformers, but I’m also familiar with Magnatiles which are great toys too.

Magformers.

3. Fishing toys

There’s a magnet theme here. She can hold on to this rod, and with some assistance, get the satisfaction of “catching” a fish. We have a lovely Djeco brand one, which has a very pretty, and sturdy, box and is nice in its simplicity. But there are zillions of variations on this toy.

Fishing toy

4. Drums, xylophones and musical toys

Our occupational therapist brought a drum over once for C, and we immediately ran out and got one as it was one of the very first toys that got her moving her arm. It’s a bit awkward to place in front of her unless you are sitting with her, but smaller xylophones and musical toys can be left on her tray. Anything that makes a noise is hugely satisfying.
She also love little toy pianos with many keys.

5. Balls!

Balls have always been hugely motivating for C. She can rest on them, roll them, and lately even pick them up with two arms – a huge achievement for someone who finds two-handed play to be a challenge. I also have a stuffed square block which she can pick up and which rolls a bit, but not so much that it falls off her tray.

6. Books, books, books

Every child should have books, but especially a child with poor motor skills. She may not be able to access lots of toys, but you can reach the whole world through books. Board books are also sturdy and stay put, and the pages don’t require much coordination to bat open.

Some Finished Objects

I’ve been a little remiss in documenting some of my finished knitting, just in case it seems like I knit all the time without ever actually completing anything. (It does feel that way sometime!)

In no particular order, let’s start with Miss C in her Abate sweater. I made it in Rain City Knits Yarn, which is this fabulous neon coloured yarn. This particular one has been discontinued, though I still, happily, have another skein. The colour way, “Graffiti” (still available in other Rain City yarns, I think!) makes me think of candies and cupcakes. It was hard to get the colour right on that photo – the green tub and neon yarn seemed to confuse the white balance settings on my camera. I made this with B in mind, although they mostly share clothes. But B was not in a modelling mood.

C wearing her Abate sweater

Next up, an Owl I knit for P, as owls are a bit of theme at P’s school. There was also a Bunny for M, but the photo was blurry, so we’ll save that for another time. Both were made in Cascade 220 and used less than a skein. The patterns (free on Purl Soho’s site) were designed for bulky wool but they worked out nicely in a smaller weight. The Owl was made with leftovers from my Frosted Alpine Hat actually, which was yet to be properly photographed. Hopefully Miss M didn’t lose it before I could take a proper picture.

Owl

And last, but not least, Coda! I finished this sweater before Christmas and have been wearing it quite a lot. Brooklyn Tweed seems a bit scratchy when you work with it, but I find it very soft and wearable next to the skin. I love this colour (Camper) too.

Coda

Stares

Do you ever catch yourself staring at a child who looks a little different than you do? Maybe they are moving in a strange way, or there’s something unusual about their features. I know I do, which is why I shouldn’t hold it against anyone. But all the same, it is uncomfortable to be on the receiving end.

I think the stares started a few months ago when we had the girls in swimming lessons. C could barely lift her head when she was lying on those floating mats. Other toddlers in the class were balancing on them and doing flips. We still take her swimming frequently, and while keeping her head up is not such an issue, we still get stared at as we coach her with unusual enthusiasm to do mundane things like reach for a ball.

Interestingly, the only time we do not get stared at is when people are using the accessible shower. I have never once gotten to use the accessible shower stall, which has an extra bench, a hand shower and a little more space. The bench would be very useful for washing C, who is quite heavy, and cannot sit or be propped on the hip as easily as her sister. Whenever I’m waiting, that shower is invariably being used by someone who is washing every part of her body, leaving the conditioner in for the allotted six minutes, and possibly even laundering her swimsuit. It’s guaranteed that this person will never once make eye contact or notice that your child is a little different. I did confront someone on this once, but confronting someone in a shower stall is never a pleasant experience, so I’ve mostly sent C to shower with J who finds her easier to maneuvre in the cramped little non-accessible stalls.

The other week I was at a local coffee shop and C was grinning away at someone. He waved at her and asked her to wave, which of course she did not. Then he asked me if she could wave and I said she could not. Since just answering “No” feels a little abrupt, I said it was because of cerebral palsy and smiled in a way to make sure he knew that I was not bothered by it. And then he politely asked me what cerebral palsy was, and waved a few times more and went on his merry way.

Probably a week later I was there again (I drink a lot of coffee. I have four children.) There was a starer. She was not a waver. She just stared. At C, and her orthotics and then at her again. And when I stared back she’d look away for a moment and then continue to stare. I considered confrontation but she was also taking pictures of Garfield cartoons in the newspaper with her phone, and I was not sure I wanted to confront a lover of Garfield. As we left, I noticed that she had a cane tucked under the table. She was not of an age where one would typically use a cane – she was younger than I am. And so perhaps she has what C has? Some milder version? Then again, it still doesn’t give her the right to stare, does it?

A little late, but a wreath

Did I ever show you this wreath that I made? It’s a little late now but it’s the only piece of Christmas decor I’ve kept up. Since it’s white I feel like it can pass for Winter decor and I might just keep it up until the thaw.

It’s from a Purl Soho kit, like the advent calendar I made last year, and was not that hard to put together. I found the instructions assumed a little more knowledge than the advent calendar did, but still nothing a novice couldn’t handle.

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Sitting Redux

I was very excited in the past few days because C has been consistently sitting for about a minute. Prop-sitting – meaning she uses her arms, but still a minute! Then, while reading over some old posts from a few months ago, I stumbled upon one from July in which I celebrated her sitting… for about a minute. That is the glacial pace of CP, or at least of C’s particular and unique version of CP. Now I will say there are significant differences between then and now. At the time she did it once and then did not repeat it for some time. She has gotten stronger and can now consistently sit for periods of about a minute several times a day, sometimes a few times in an hour. She can also get herself out of sitting (but not into it). She won’t necessarily wind up where she wants to be, but she can roll out.

I guess now that I think about it, I assumed that like a “typical” baby, one day C would just go from not-sitting to sitting. And now I realize that in this crazy CP-world, sitting is relative. Sitting independently might mean you can do it for a few seconds, or a few minutes, and a few months later, maybe even for 10 minutes.

Why is sitting such a recurring theme on this blog? I guess it’s symbolic in some ways – the ability to sit is often seen as a predictor of how affected a child will be by her CP. But practically speaking, it’s difficult having a child who can’t sit – who you can’t just plop on the floor at a friend’s, or who needs to be held or placed in equipment if she doesn’t want to lie on the ground. So for a while I was very focussed on sitting. And then I sort of stopped worrying about it, and we stopped practising or trying to get her to sit, but just did other things – swimming, more tummy time, rolling. She is undoubtedly stronger and more coordinated even if, at first glance, her sitting doesn’t seem all that different.

Redesign

Over the past year and a half the focus of this blog has changed quite a bit. So I’ve done a bit of a redesign. You may have to clear the cache on your browser to see it properly – I know I did. I’ve dropped “lawyer by day” tag line since this blog has never really been about law and doesn’t promise to be. I’m also not in private practice anymore, so while I’m still a lawyer it doesn’t feel as unusual to be working as a lawyer and, you know, having other things to write about.

I’ve thought about adding some more pictures, but for now I’m enjoying the clean and free design. Maybe that will change. I’ve also got to reorganise the categories I think, but I’ll work on that later. I hope you enjoy it!

2014

It feels like the time of year when I’m supposed to do a 2014 recap post. In 2014 I started a new job. My babies turned into toddlers and started uttering their first words. C was formally diagnosed with C.P. P won a race at his school and turned into a voracious reader. M stopped having quite so many tantrums and showed me dozens of yoga poses she learned at preschool.

Although it had its challenges, it’s actually been a happy year. I’m looking forward to 2015. I feel like I should make some predictions about where we’ll be next year, but it’s dangerous to wish for things that I can’t control – like for C to sit for longer, or for B to avoid a hospitalization, or for M to take to kindergarten like a fish takes to water. I had in my head that C would be sitting at Christmas, but she was sick and miserable in the weeks leading up to it and sitting seemed further than ever. At Christmas Eve dinner she couldn’t hold herself up in a highchair for more than a few minutes. But then maybe she can sit? She can do it for 10 or 15 seconds. She is starting to balance herself and right herself, and then roll out of it when she’s done. Her sitting may never look like B’s sitting, so maybe I did get my wish?

So instead I’ll make resolutions, even though I know the track record for maintaining resolutions is fairly low. But I’m going to commit to doing these things for at least 10 weeks – that seems doable and habit forming. I’m going to work out twice a week. I’m going to try a new recipe at least once a week. I’m going to get C to the pool about once a week. We’ve been at least four or five times over the holidays and it’s so wonderful for her, as she can kick and move her arms freely and get exercise, which is a little tricky when you don’t have the coordination to crawl or move around. It’s gotten her to the point where she sometimes freely agrees to tummy time and looks forward to it. Also… more baths, for me. Because they’re nice.

That feels like about enough for now – I don’t want to get ahead of myself.

Coda

Coda is done! Sorry, no pictures yet, still blocking, but I tried it on unblocked and it felt great. I was a little worried about how it would all go together as the two pieces didn’t look like they fit quite perfectly, but with a little stretching and some locking stitch markers I pinned them and it worked. I’m not the best at mattress stitch, but it worked.

I am taking the liberating step of not trying to knit anything madly for Christmas. Though I am very tempted by the Purl Soho hedgehogs. But instead, I’m working a hat next…

Next up, a hat

I’ve been reading the Tanis blog a lot lately as I’ve frequently used her yarns – it’s one of my go-to worsteds. I got enamoured with a hat pattern she posted, and since Miss M requested a hat, I figured I’d give it a go. Ironically, I didn’t use Tanis Yarns this time – went for the workhorse Cascade 220.