Cerebral Palsy, Our Son, Therapy, Toronto, Transportation

Too many things Tuesday

It kind of all comes at me at once. Rather, I feel it raining down on me in buckets, even if it’s been sprinking a little each day.

Let’s start with riding on the subway or walking around town. It was easy to ignore Egyptian mothers who thought they knew what was best for Sebastian while I was pushing him down the street in the stroller, they spoke Arabic, a language which I did not understand. In Toronto? Not so much. They mainly speak English here, at least to me. And everyone has something to say. This is new for me. I’ve read about other cp moms experiencing it. But up until now, I have not.

I must start by mentioning that everyone has been very friendly and kind, always with a smile. Well, the ones that speak to me at least. I did have one woman on the subway last week who would not stop flashing her disapproving looks my way as Sebastian cried in discomfort from an air bubble or at the screaching halt and start of each train. I was thisclose to asking her what her problem was, but I bit my tongue until I thought it would bleed. When I travel on the subway alone, I use the baby carrier. I sing songs quietly to Sebastian or talk to him about things going on around us. This works for the first six or so stops, but for the last half, not so much. He starts to wiggle and push back and I wonder if people think I am being cruel by keeping him in that place, attached to my front. But I only wonder for a moment because I do not have time to worry about what they think, I have to get back to entertaining Sebastian. So I do.

People are really friendly here. Sometimes women will sit down next to me and strike up a conversation about my kid or their kid, as long as Sebastian is happy. And he’s actually happier when people around us are talking. And if it’s kids talking, he’s very happy. But for those of you who have travelled on public transport, you will know it’s a very quiet place, aside from the sounds of the moving transport. Which is why entertainment is mainly up to me.

Today I had a young woman who spent most of her time across from us trying to sleep. But when she got up to get off the train, she decided that she needed to let me know that perhaps Sebastian’s foot was uncomfortable the way it was sitting in-between my leg and the window. Because that must be why he was crying. I’m waiting for someone to ask me if he’s breathing ok because his stridor really seems to kick in when we are underground.

Above ground we get some tips from strangers too. Last week we decided to stop for a snack at a cafe, well it was getting late so we decided to have dinner. Sebastian had an air bubble that we could not get out, and he was crying and very uncomfortable so after taking turns attempting to help Seb’s bubble and quickly stuffing our faces, we were approached by an older woman who said ‘You know you wouldn’t be laughed at or thought ill of if you took him down to Sick Kids (hospital), he’s absolutely exhausted.’ Right. I smiled and said thanks, he has cerebral palsy, he will be ok, just an air bubble. And then she went on to tell me about her experience with her sisters nine kids, one of them being partially disabled. As soon as we left the cafe Sebastian let out a large belch and was pretty content during the street car (tram) ride home. Do I know my kid, or what?

I had one woman stop me at the market this past weekend over Sebastian’s glasses. She just thought he was the cutest and then blurted, ‘Is he cross eyed?’ I said well kind of, his left eye goes in when he’s trying to focus on something up close. Obviously she doesn’t know that the ‘current’ term is Strabismus. She also told me her son had glasses for the same reason from such a young age and at eleven he stopped wearing glasses and was suddenly fine. And my son reminds her of her son and even her friend thought so. Awesome. Maybe Sebastian will stop wearing glasses too.

Sigh. The reason I’m most upset today isn’t the kindness or the awkwardness or the bluntness or even the rudeness of strangers. It’s going to a private therapeutic facility and paying $625 for an OPT (feeding test), which will not be covered by insurance, only to have the therapist show up late, leave early, and NOT HAVE SUPPORTIVE SEATING. Yes, I am shouting this because it is RIDICULOUS. How can you do a feeding test on a child with cerebral palsy that cannot sit up on his own? And why wouldn’t I expect it? We are in Canada. Even in Egypt they had a highchair, even if it wasn’t the best, it still worked.

Today she wanted me to hold him. How can I see what she is doing? How can I help feed him? How can he focus on moving his jaw and his tongue and his lips when he is worried about his arms flailing, his trunk shrinking down, his legs straigtening out? We started out with him in my lap and then I set him on in a big chair with my bag as a support. He kept sliding down, so I held him up. He was very tired. But he was also great. He did as best he could, but he also bit down when he usually wouldn’t have. Because he was not supported. And he was not comfortable. But he was happy. Because he is Sebastian. And he’s a pretty happy kiddo.

I feel a little bit better now. Thanks.

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7 thoughts on “Too many things Tuesday”

  1. Kara, my friend – thank you for sharing the frustration. On a small scale, I get that… “Why is she so small?” “Why is she not walking?” “Have you had her go to any therapies to help with…” “Have you tried feeding her [blank]? She might really like [blank]”
    So, though it is not nearly as abruptly awkward or rude, i know how the mama bear, yes-i’m this child’s mother and i DO actually know what is best for him, comes out.
    Also – the therapist?? What. A. Jerk. Definitely report this individual – and DEFINITELY complain about the lack of basic accommodation for Seb. Ridiculous.

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  2. Oh Kara, I really feel for you and the stupid comments but more so the costly exercise that did not really help you guys. It does get easier, I think when cooper was in his walker and then wheelchair it’s more in your face and you have less ignorance and a little more understanding. You are right though focus on Seb and only enter into coverstaion with people who you might see often. xo

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  3. Welcome to Canada. I am sorry about the ignorant Canadians you have had to meet. Good to hear you are at Blue Balloon, Simona is great we attribute Elizabeth’s first steps to her hard work and CME excercises.
    Hopefully Sebastian does not get too upset at PT, it is hard work.
    You are very brave to be taking the subways, I am a bit of a scaredy cat so I drive when we come downtown.
    Send me an e-mail and maybe I can inform you of better options for therapy etc. The feeding study sounds insane, I would ask for a refund.

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  4. I had to laugh at all the comments to you – I’m getting so cranky and non tolerant as I get older. I just bite back now. As much as the first wheelchair sucks – it does tone down the well meaning advice. As for the therapist – time to ask for a refund!

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  5. AAArrrrggghhh!! I hear your every word. If it brings any comfort I’ve also had plenty of strangers try to give advice to me about my able bodied kids as well. But I definitely agree that there’s a lot more words of ‘wisdom'(ha!) out there for our boys. Bloody drives me nuts. And I know the worst part is that they ARE nice. They aren’t, for the most part deliberately being offensive. But yep, like Jacqui, I am more cranky these days too.

    And as for the therapist. Appalling. Have you paid yet? If not, DON’T. There must be some sort of body you can complain too. At the very least (not that you’d want to go back to her), she should redo the test under preferred conditions. Try to get something in writing from someone in Seb’s therapy/medical team that verifies that this was indeed not the right way to perform the test.

    And I know, you probably don’t have to time to do that. Nor should you have to. It’s the worst thing when people who are supposed to be helping find solutions become part of the problem :-(.

    Hope things have improved since then xo

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