joan's physio

Joan had her second physio appointment today. It was a biggie! Lots got done. They pulled in the speech pathologist, and they also made her a brace for her hand. We were there a whopping three hours! But it was good. I got lots of questions answered, and got some straight facts, which was nice.

Joan was extremely shy when we first arrived at the therapy room. She spent a good chunk of the first hour with her face burried in my shirt. Though they did manage to coax her to play with a puzzle. By the end, she was interacting and playing with them, but it was slow going. So the speech pathologist never actually heard her utter a single sound. But she asked a million questions. She feels things are going alright. She has all the building blocks of speech. I'm supposed to pay close attention over the next two weeks to gestures, and note their frequency and purpose. Obviously, gestures are the precurser to speech. We're supposed to try to get her to mimic us more, and make a special point of using lots of gestures, and point things out in the world for her. They're going to hold off on formal testing for the time being, because the pathologist doesn't think it's needed. She may be naturally delayed - genetics plays a role - both mike and john were relatively late speakers, so it may just be how she's designed to be naturally. But just in case, they're ordering a hearing test, similar to the one she had at a few weeks old. But this one is a little more elaborate than a set of headphones. It'll be done in a soundproof booth, and they can test more frequencies now that she's older. She says it's routine for all patients whose parents are concerned about a lack of talking. But she said not to be concerned about words vanishing - that's completely normal. Especially with kids like this - there's often a more extended period between when a word first appears, and when it becomes in common use. In between, it can vanish for a much longer period of time than a normal kid, which is normal for them, but alarming for parents. But she's being watched and assessed by a therapist, which is a very good thing.

The therapists saw good things from our work over the last two weeks - they could notice her progress pretty easily, which was nice. We need to keep plugging on, and they added a few other games and things. They added some things to strengthen the right side of her trunk, because she spends so much time on her left hip. They gave me a few games to strengthen her upper back as well.

As I said, they also made her glove, which was pretty exciting. They made it right while we waited. It took them ages, with fitting after fitting after fitting. After it all, I asked how much. It cost us $1! I howled when they said that. In Hamilton, they warned me that the hand braces are expensive, because they're custom made. But there, they have to bring in someone from the outside. In this place, they have a sewing room, and the OTs make them themselves.

They showed me the pool, too. Yup, they have a pool right inside the hospital! Most of the kids in therapy really enjoy the pool, so they do a fair bit of water therapy, and Joan may be prescribed that too, down the road. Have I mentioned what an amazing place this is?

They also invited me to a parent thing, where other parents with kids in therapy come and talk about the struggles of the diagnosis process, and how they feel about everything. They said it can be really helpful. I think i might just go, though it's not for a few weeks. Thought I may not meet another famly just like us. Joan is a rarity, even for a big hospital like this, they said. They may get a case of two each year of these strokes. They said if we want down the road, they can hook us up with some other parents with Joan's exact condition - they have one on their roster whose son is five right now. Then, we can have someone out there who'se been through what we're going through right now, and it might give us a better idea of what to expect from Joan, and from the hospital experience. Other than that, any group things will be with kids that are similar, but not exactly the same.

One very serious thing came out of this meeting. I'm hesitant to put this here, because I'm concerned how people will react. But I've had a few weeks to let it all sink in, and i feel better about it, now that I've actually gotten some real answers from her therapy team. I think there's value to a certain degree of transparency, so I'm going to put it in. Joan's actual "diagnosis" is cerebral palsy. That term has swirled around her since her initial diagnosis, way back in Hamilton. So I finally came out and asked if that's what she's got, and they said yes. It went unsaid, because they don't generally attach that label until after the kid turns two. Obviously, what society thinks of when they think of cerebral palsy does not even remotely match what Joan is. But in medical terms, it's brain damage caused between conception and two years of age, and manifests itself in the motor skills. It can have a million causes - one happens to be stroke. She has the spastic variety, which means a tightening of the muscles - not the herky jerkies a lot of people might think of - that's a different kind. The reason the label doesn't usually get attached until two is because sometimes, the stroke is so mild, that it's largely just swelling, when it's fresh. Then, over a couple of years, the swelling goes down, leaving the scar. In some cases, there is a miniscule scar, and the motor damage doesn't stay, in which case, the diagnosis isn't made. But it Joan's case, because the damage was extensive, and has affected her motor abilities, even a year and a half later, when most of the swelling is gone, the term, by definition, applies to her.

I was very, very upset when I first put two and two together, and realized she did, in fact, have cerebral palsy. It carries a very serious stigma with it. But I'm starting to come to terms with it, and I hope all of you can, too, at the very least for Joan's sake. It's just a word. They still see bright things in her future. She's not mentally handicapped. She's going to be OK. She's still the giggly little goofball she was yesterday. Her case is very mild. She'll never be catatonic, drooling in a wheel chair. The damage is done - it won't get worse. At the end of the day, it's just a word, and you have to make a choice on what emotional weight you want to grant it.

That said, it is a "disablity". (Oh, how I hate that word!) And because of that, we actualy should qualify for a disability tax credit, because we have a "disabled dependent". It means whomping tax breaks, and a huge increase to our child benefit cheques, once all the paperwork goes through. We haven't started it yet. The therapists said they'd help get us through, but it's got to be done by a doctor - typically a pediatrician. We have a referral to a pediatrician in August, so they said to print out the government form, and take it along when we go. The pediatrician can take it from there, and the therapy team will back it up. It also lets us claim our portion of her braces and walkers, and even tutors, if she needs them down the road, on our taxes. It gives her extra tuition and book tax credits for university. All in all, it's a good thing. I don't like the stigma of it, though. I don't like the labels at all. I don't want her to have that "oh, I can't do it because I'm disabled" crutch, as an excuse to stop trying when things get tough for her. But for the time being, it could come in handy, if we go for it, and the approval goes through. Mike and I have some talking to do about it, obviously. We had decided when we saw the MRI, and realized the full extent of the damage, that we wanted to make her life as normal as possible - to treat her condition as trivial as possible. It may be harder with an official designation like that. So we have some decisions to make, for sure.

Anyway. The natives are getting restless, so I'd better go!