Coda

Hm, I love Brooklyn Tweed wool and stocked up at Knit City. I’m knitting myself a pink sweater and it makes me very happy.

Coda

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Where did my baby go?

Tonight, for the first time in many weeks, he let me read him a bedtime story.

Where did my little boy go?

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Quality of Life

There’s a new post on Love That Max, which is one of the more well-known special needs/CP blogs. She posts about a study in the Lancet which reports that adolescents with cerebral palsy self-report similar levels of quality of life as “able-bodied” kids. Obviously, the study only included children who were able to report. But it’s interesting.

What does that mean? It means I worry a lot for nothing. It means that many kids with cerebral palsy are enjoying life just as much as their siblings, cousins, uncles etc. who don’t have CP. The only area where they didn’t report similar quality of life? Friendships and socialization.

I always think about how much stigma there is associated with disability. We live in a world where there’s are people who believe that children would be better off dead than disabled. That prejudice is, if this study is in indication, so far off the mark. It’s based on unsubstantiated stereotypes about what quality of life means. I wonder if we’ll ever reach a day where a diagnosis of disability like CP won’t be that big a deal. I don’t expect anyone to jump for joy on finding their child has had a stroke or a brain hemorrhage. But I hope we reach a time when it isn’t met with dark somber talks and an immediate listing of everything possible secondary diagnosis that might happen now that your child has a brain injury. Maybe instead doctors will say: “You know, I won’t lie, this is going to a be a lot of work, a road less travelled, and very hard at times. But check out this study from the Lancet! Things will probably be okay!” I expect many other serious, and sometimes debilitating, diagnoses are met that way, because they don’t carry the stigma of physical and possibly intellectual disability (ranging from mild learning disabilities to significant delays) associated with CP. Parents should be told that these children, at least the ones who can tell us, are happy with their lives. But not in some sort of platitudinous way about how they’re always happy. That’s not what the study says. But they’re about as happy as most other kids.

If we lived in a world where there was less stigma associated with disability, maybe the friendship pieces and socialization would fall into place. How often have my able-bodied children approached kids with disabilities and reached out to them? Not often enough. And it’s not something as a parent, that I have encouraged enough. I have some work to do there, and so do all of us. My child is lucky – she will have her siblings. Her twin is more than ready to smack her over the head with a block when she reaches out to paw a toy B is playing with. But she’ll need more than that, in the long run.

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Knit City

It was Knit City this weekend. And wow, the weather was amazing. Sat outside in the sunshine eating a caramel crepe and feeling overheated in my sweater. And bought Brooklyn Tweed Yarn, which I can’t get here. I want to make their beautiful pattern Coda.

I also took a sock class with knit designer Kate Atherley and am working on a pair of custom socks. Remember when I planned to make 12 pairs of socks one year and then made, um, one? Well I’m not committing again. But I would like to get this pair done in October, and to knit more socks in general.

My other favourite yarn is Rain City. The colours are amazing, and I couldn’t resist adding a little more to my stash, though I had PROMISED not to buy any more yarn on spec. But it’s so pretty.

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Equipment!

Today I am a happy camper. After struggling for months to fit C into a newborn bath ramp she had long outgrown, and then giving up on it entirely and having to bathe with her so she didn’t get stuck in an involuntarily reflexive movement she often reverts to when stressed, we finally have a safe bath seat. She can sit up in it and play. Now, I’m told that she didn’t actually love being in it during bath time. I was out doing something selfish, er, I mean, doing “self-care”, at the tennis court. But she’ll get there.

We also borrowed a walker. It’s an old walker – I’m going with the description “vintage” – but it works for now. In the meantime we’ll wait for the interminable bureaucratic processes to occur so that the funding agency can confirm our child is indeed disabled enough to qualify for funding so we can buy a different one that will grow with her to preschool age at least. So things are moving!

I’d put up a video of her using the walker we’re going to get, except she was wailing, and I was frantically singing “Itsy-Bitsy Spider” to calm her down. She did eventually settle into it, but of course she has no idea that it IS a walker, which will allow her mobility and independence. To her it’s just an annoying thing mum put her down in, when she really wanted to be held. For a child who can’t move independently, being held is far more comforting than sitting somewhere where you might end up slumped in a position you don’t want to be in, and won’t be able to get out of. But I’m optimistic that will change.

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Summer Days

Yikes, sometimes I have so much to say I have to schedule posts and then a week or two goes by and nothing, nada, zip.

We just got back from vacation, which was lovely. We stayed on a farm, in an old log homestead. I was thankful again, that despite C’s CP, she has been very healthy. She got a fever on Day 6, and if she’d had a shunt, we’d have had to race to a hospital to make sure it wasn’t malfunctioning. Thank goodness, she seemed to just have a virus, and I just dealt with it the way we do with the others. But she was so sad and so much weaker. She couldn’t even tolerate holding her head up in her high chair. Thankfully she’s on the mend and she is back giving her patented Coco smiles.

I knit a lot, but didn’t count on no web service, so I couldn’t access my Ravelry patterns. That means, I just did about 20 more Pop Blanket Squares, but I won’t bore you with pictures. Instead I’ll bore you pictures of the kids.

Coco on Hols

Bea

Beets!

I also read two books. The first was Four Walls of My Freedom, by the mother of a now-adult child with CP. It was a good read – first just because it’s interesting to read the perspective of someone looking back on the early years. With the benefit of hindsight, she questions whether all the more intense therapies or medical treatment was worth it in the long run. The balance between “fixing” and “accepting” is a constant moral dilemma I have. It’s sobering too, as she explains some of the trials they’ve gone through, such as when she thought the doctors were finally understanding the pain her child was in, and instead she was investigated for giving her child too much pain killers. It’s more than a memoir though, as she makes some interesting arguments about the way we value people with disabilities, offering a sort of a primer on some of the philosophical thinking in this area. She discusses controversial figures like Peter Singer, who has argued that infanticide may be warranted in the case of children born with severe disabilities. The prejudice and stigma faced by people with disabilities is very real – perhaps one of the last areas in which it is socially acceptable to make that kind of argument. She proposes a very different approach, based on the thinking of Amartya Sen, which values experiences and relationships as measures of well-being. She works with someone to develop an index of well-being that applies to her family.

I also started, and am mostly through, Andrew Salomon‘s Far From the Tree. At first I was puzzled by this book, which deals with a concept he calls horizontal identity – children who are different from their parents due to deafness, dwarfism, severe disability, or even things like being born of rape. I wasn’t sure what it all had in common, or whether I should be insulted by the idea that having a disabled child was similar to having a child who commits mass murder. Anyway, I put it aside and read it and accepted perhaps we shouldn’t place these experiences in a hierarchy. Each chapter stands alone and simply recounts the experiences of families dealing with these “differences.” He tends to the extreme – his examples on disability were all families of kids with multiple severe disability, and I found his chapter on autism particularly bleak. But he resists easy, pat summaries – discussing the controversial Ashley Treatment with sensitivity and compassion to both sides of the debate. His strength is that he lets the stories speak for themselves, and they in turn speak to the larger human experience. I felt profound empathy for what they were going through, even in stories where parents walked away and said “Sorry, I can’t do this.”

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Abate

I fell in love with this yarn at Knit City last year, and with another Knit City pending, I realized I better work my way through what I bought last year! I just love the crazy neons and how you can get a single stitch in one colour. It kind of reminds me of the crazy variegated acrylics you can get, but this is hand-painted loveliness. I hate knitting with acrylic, so this is as close as I’d ever get.

I started to knit a Purl Soho placket sweater. (Must add that I’m not convinced the pictures currently featured on Ravelry do it justice – it’s a very cute pattern and when I made it, the collar didn’t flare) But I had been a bit too casual about swatching it, and it turned out much larger than expected. Miss M announced she did not want another sweater, so I tore it out to make it for some more willing creature. The yarn, a Blue Leicester DK, knits up more like a worsted. I inadvertently blocked part of it by leaving it under the sprinkler, so I can confirm it puffs up nicely too. Anyway, I chose a worsted pattern instead, Abate, which has been in my favourites for ages. I bought three skeins so I am hoping I have enough left over to make some socks or a hat for ME.

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Is it Just Me?

If you’ve read this blog before you might remember that I have a pet peeve about articles written in the second person, particularly parenting ones. (See how I just did that? Used the second person?) “If your child won’t sleep through the night you should…” “You know you’re a twin mom when…” It attempts to universalize experiences that are, in most ways, pretty individual. The most recent manifestation of this phenomenon that I have noticed is on pages or in groups aimed at “special needs” parents. It’s the ubiquitous special needs inspirational post. (This blogger did a send-up of this issue recently.)

These listicles or memes are posted frequently in some of the groups I check. There was one I saw recently, and I realized I could not relate to anything on the list. I’m not saying these emotions are invalid, or wrong or that some “special needs” parents don’t feel them, but it certainly not a feeling we all share.

One was: We are good at keeping secrets. Um, no. I have a blog about my daughter’s disability. A PUBLIC blog. Shortly after the girls got home, I was chatting with a young guy at my local coffee shop, and before I knew it I was launching into my daughter’s brain injury. I cried with mothers at my son’s school whom I barely knew at the time. I find it comes up occasionally at the lunch table over work, because, guess what, I spend a fair amount of my home life dealing with it. So I am not a secret-keeper. Not that there’s anything wrong with that, but I’ve never been able to keep much in for long. What can I say – I like to talk about myself.

Another was: We are jealous of other families. Again, NO. Before I had a daughter with CP, I probably assumed people in my position did feel this way. Do I sometimes wish my kid didn’t have to deal with her disability? Yes. Do I sometimes wish I could change that rocky first few days when this all happened? Of course. Do I feel jealous of other people’s family? Wish I had some other snotty-nosed kid who could walk instead of my delightful gal? Wish I had YOUR kid? No. I will, someday, get to the point where I stop wishing this hadn’t happened. Because it has.

Another meme you see a lot is that special kids choose special parents. Having spent quite a bit of time in the Neonatal Intensive Care Unit watching many desperately ill children and their parents, I can say that, sadly, that’s not true. As one of the nurses said though, a lot of them just rise to the occasion. I do feel like I am a good parent and a good advocate for her. Not perfect though. Not born for this. Just dealing with it because, well, I have to.

While I’m complaining, I’m also not in love with the term special needs. I feel like it’s just so broad. People with gifted children are calling themselves special needs parents. Do they face challenges? Sure. Do they deal with the stuff we do? No. Should we get inspiration from the same insipid quotes? Probably not. I do love reading special need parent blogs and I learn a lot from *some* of them. But I don’t even necessarily relate to parents of other kids with CP, as in some cases their CP might only affect a few very minor things, whereas C is classified as “quad.” And even among people with four limbs affected, there is a huge range. So wouldn’t it be fitting to embrace the diversity and stop trying to assume we all have the same feelings?

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Milestones

At 14 months (er, 16.5 adjusted – is it strange that I NEVER think of them in terms of their actual age?):

Bumbo
I can play my keyboard, pick up a spoon and chew on it, and sit with support (though I do find it tiring after a few minutes)

AFOs
I can also roll from front to back (and probably from front to back, except I hate to), pout when my therapist comes, and laugh at my brother’s silly jokes. I can stand if my waist is supported. In my AFOs I can also stand if you are just holding my hands.

Toy Car
I can also ride in a toy car (but make sure you lock that door!) kick in the swimming pool and I am starting to babble lots more.

Bubbles
As for me, I can sit independently, climb stairs, crawl (though I prefer the bunny hop), say Mama, Dada, Mah-go (Margot) (a few other words too) and sing along to Roly-poly

Ride on Toy
I can also have tantrums, pull apart my mother’s purse and scream louder than anyone in the house

Swing
Oh, and I can steal my sister’s toys or sit on her play tray, but I also give her lots of zerberts and pats.

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Sweet Little Shrug

Okay, this is a bit of a cheat, because I knit this months ago when I was on maternity leave, but I finally got around to sewing buttons on, and I don’t think I ever posted it, so here you go! A sweet little short-sleeved cardigan.

Shrug

This was a super easy knit, basically made because I wanted to use up some Cascade I had kicking around from my aborted attempt at a blanket. But it’s a practical little item, and I think it would even fit Miss M as a little shrug over a dress. Oh, and without sleeves it knits up so quickly!

C in her baby shrug

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