I’ve probably written about this before, but being out with a child in a wheelchair can attract a lot of attention from strangers. Sometimes it’s fine – I realise it’s hard not to take a second look when you see a child in a chair. I realise you can’t stop your child from shouting “there’s a baby in a wheelchair!” Some of it is less welcome – once someone bought my meal for no reason. A well-meaning gesture, but awkward and unnecessary. Also, there are people who want to stop and tell you about some other child with a disability they know, or how a dozen years ago they cared for a child with a disability which, as it turns out is completely dissimilar from my child’s. I used to babysit a few kids with disabilities when I was in university too, but I don’t feel obliged to talk about it all the time. I’m sort of an introvert, and having a child with a disability does not make me more inclined to engage with strangers. The over the top offers of assistance are an irritant too. Holding the door is fine, lovely even. Making space is great. Giving up a wheelchair accessible table because you realise we can’t sit at the bar stools is nice too. But when a stranger just wanders up and says “Do you need help?” when we’re just living our life, it’s invasive. Or stepping in to wipe my child’s face (yes this happens!) or assuring me “Oh look! She likes that!” as if I’m not capable of knowing, or she’s not capable of showing me that, or as if it’s a surprise that a child with a highly visible disability could be capable of emoting. I’ve always been fairly thick-skinned when it comes to parenting, and unsolicited advice, but this stuff gets under my skin.
I never know exactly what to say when a child sees with my child in a wheelchair and ask me questions like “Why is she like that?”
I have a nice answer for “Why is she in a wheelchair?” (Usually something along the lines of “She needs it to move,” or “She can’t walk, yet.”) But I still get thrown by questions that imply deficiency, like “What’s wrong with her?” I usually say “Nothing.” Children are undeterred and will ask again but I like to think to think it helps them reframe their question.
Every now and then, I’m just not in the mood to answer, particularly if it’s a child I don’t know and I’m in the middle of something else, and I’ll pretend not to hear. Other times I welcome the attention and try to engage them: “Are you interested in her chair? Don’t you like the wheels?”
I have no difficulty explaining she has CP, or that her muscles don’t work like theirs, but some day she may reach an age where she doesn’t feel the need to make her medical condition public, no matter how visible it is.
Soon I suppose I’ll be able to deflect the questions to her. I wonder what answer she’ll prefer. I suppose that like me, it might depend on the day.
Well hello there! It’s been awhile, hasn’t it? Almost a year, I’m embarrassed to admit. And it’s been several months since I promised myself that I would start coming back here more often.
Part of the reason I feel I should is that there are so many blogs that deal with children with CP soon after diagnosis, and so few that keep going. As a parent, I remember finding them, and wondering what happened?
C is almost four years old. In fact, it must have been about four years ago, almost to the date, that my water broke and I began the crazy journey to bring them into the world.
What can I say that doesn’t simply reduce her to a diagnosis? She’s a delight. She’s a very calm, and even-keeled child. She does have an extremely stubborn streak in her, and can become quite fixated on certain things. She has a great sense of humour. She speaks – her words are not always easy to understand but she has a great vocabulary. She uses the potty – she actually has amazing self control. She goes to preschool, where she has quite a few friends. She has an aide, who assists her so she can do things like grab pencils, sit to read a story, eat a snack or maneuver her chair. She and her twin could not be more different – one is quiet and stubborn, the other never stops moving or talking, at least at home.
Gosh, I keep meaning to come back to this blog and post more regularly, and then it becomes a daunting task. But I will dive in, even if it’s just with a brief update.
Where are we now – C is walking in her walker, albeit very resistantly. She is talking and speaking in a way that’s amazing me. Certainly her speech is slower than her sister’s, and easier for “familiar listeners” to understand. But she can tell me about her day (I scratched my face, Nanny put on my pajamas) and ask me for things (Sit down! I want up! I want to play with puppy! I want my own bike!)
Milestones, well they move slowly. We still work on that elusive sitting. We worry about hips and bones and see more specialists now than I can count. I have some thoughts on the medical system, and the siloed nature of specialties, which I may come back to at some time. The reality is that helping C achieve her maximum physical potential requires daily labour, and it’s not something that can be fixed with a pill or a surgery, although those things may be tools along the way. So her core treatment remains therapy, mostly implemented by us, her caregivers.
I struggle sometimes with the battle of it. Things like going to preschool, parking at the hospital, having place to play, not being stared at, getting the right funding for her equipment in a timely way – all of those things require a lot of emotional energy. Sometimes it’s just mentally exhausting having to beg and plead for dollars. That is the biggest challenge, more so than the fact that we spend half an hour each night rolling on the floor and laughing and reading books and calling it therapy.
It feels like a long time since I blogged, probably because it has been. Also because the novelty and emotions that come with having a special needs child start to be less novel and so I have less to report on. These days are beautifully ordinary.
C is talking more, even in the past few weeks. I feel like I can ask her questions and have a short conversation. “I do it!” “Mine!” Beautifully ordinary two-year old phrases.
B was sick recently with a cold and cough. She had the “work of breathing” signs I now recognize well, and I took her up to the ER. It was almost her longest stay yet – two night and three full days, rather than being released in the morning. She was unhappy, pleading with me to remove her sat probe and tearing her nasal prongs off at one point. She will be on preventative steroids from now on and we hope we can avoid another ER visit.
I am enjoying a weekend away, running my third half this year. It’s been a great foray back into exercise after a few years and pregnancies. And of course I’m knitting… Socks.
I can’t believe summer is more than half over. Here we are in August.
I’m sure I’ve posted about this before, but one of the things I struggle with, having four, is that I never feel like I have enough time. I’m also kind of a social introvert. I made that up by the way. But basically, it means I love being around people, but I also really need time to myself to recharge.
Anyway, there is never enough time to carry B as much as she wants, to talk things over with M, to find out what P’s reading, or to make sure C’s getting all she needs. On the flip side, those one-on-one moments are really memorable. P is out tonight, and M doesn’t like to be alone in her (their) room. So, I lay down with her to put her to sleep. I could smell her sweet hair, and she dozed off while I was there. Because I don’t get to do that very often, it felt really special.
Also, their siblings are good for them. C has always been quite passive about being “engaged” with the kids – she’s okay to watch. But recently, that’s changing. I was painting a second hand high chair in the front yard recently (actually one I hope to adapt for C), and M was helping me sand and prep. Oh my goodness, C screamed bloody murder when the other girls went outside and she didn’t. I finish work a little early on Fridays, so our nanny was still here, and she was trying to comfort her, but nothing would calm the screams until I offered to take her outside. I’m glad she’s getting interested in the world, and wanting to do what her sisters do, even if the high chair prep was a little insane with three “helpers.”
I sewed something!
Remember the old days when this was a blog about sewing?Â Well, I actually sewed something this week!Â I bought this book last year I think, intending to make these sweet little tanks, reminiscent of the sets by Redfish Kids.Â I cut out two for each twin, and two pairs of bottoms each too.Â If one is good, then four must be better, right?
Maybe I’ll even get all crazy and sew Miss M a back to school dress. I was just looking at all those things I sewed two years ago and wondering where some of them are…
Post Traumatic Growth
I was reading somewhere about this thing, it’s like the opposite of post-traumatic stress. It’s when people, following some sort of traumatic event, their lives actually get better, perhaps because they find meaning in the trauma, or gain a new perspective.
Anyway, I was thinking about that this weekend as I ran my half-marathon in support of the CP Association of B.C. I remember for awhile after C was born I felt guilty when I ran, or even went on a long walk, wondering if she would ever be able to do the same. I still don’t know if she will, but I have no excuse. So this weekend I did just that, running a half-marathon, raising close to $2000 for charity, and I had a lot of fun doing it. It was not a textbook-perfect race – I started to fade in the last quarter and walked a good bit of it. But I had these profound moments – there were tears running down my face watching the elites race past so elegantly and seemingly effortlessly. Another time when I was walking a girl shouted out “we got this to me!” And I was able to run the last few hundred metres because of her.
And then I came home and J told me that C had spent a good long time picking up toys and moving them out of her toy boat. The child has such limited fine motor skills that you might have told me she had just flew to the moon. He was elated. Then she and I sat and did it again, first with one hand, and then the other.
I remember another mom saying to me that she wouldn’t change her daughter’s CP, and at the time I was not there. I’m not sure I’ll ever be there, but I think about it less. Another mom the other day whispered to me conspiratorily as she watched her son in a power chair – “You know, life is still just as happy, isn’t it?” No, it’s not any less happy. Quite the opposite.
She’s not tired
At least four or five times this weekend someone commented on how “tired” C looked. In some cases it was well-meaning: a woman who told us it was “so adorable how she is falling asleep!” In another case a man came up and stared and said rudely “She looks REALLY tired” as we entered the change room, implying we should take her home for a nap.
The thing is, she is not tired. In fact it’s past 9 and I’m sitting in the dark by her crib waiting for her to fall asleep. She doesn’t have the greatest head control so if you’re holding her she nestles in. Her head droops so she might seem drowsy.
I don’t correct people. “She’s not tired, she has a disability” is not a good conversation starter.
Her disability is more obvious now, as her twin climbs up the play structure and she needs support to be sitting. I find people have two reactions – either they stare as they try to compute what’s going on. Or they very obviously don’t stare – averting their gaze and avoiding eye contact.
How lovely when the odd person just sits down and starts to talk, addressing her like any other child, ignoring the elephant in the room, or acknowledging it in a simple way, like “Those AFOs are so cute these days with the patterns.” We go to our local pool so often the lifeguard recognized us and said “She’s grown so much since I saw her last!” I’m sure she remembers us partly because we have the kid with the disability, but she remembered the kid before the disability.
I’ve stared at people before, for many different reasons, and I try not care about those who do. But here’s a hint: if you get “caught” staring, smile.
Don’t Call Me Mum
As I was standing at the hospital blood clinic today with one of my kids, the lab technician tut-tutted me for not having signed in properly.Â “Didn’t you go to registration, Mum?”Â It occurred to me that since my kids started having more contact with the health care system, I have been called “Mum” by receptionists, clinicians, specialists, nurses, and therapists. I’ve been called “Mum” by people wielding needles, ultrasound wands, lunch trays, pulse-oxometers, and even people strapping my children into restraints for chest x-rays. In short, I am being called “mum” by many people who never spent time in my uterus and have no other legal or moral claim on my maternal affections.
It doesn’t always bother me.Â Frankly, when I am being called “Mum” by these folks, I often have bigger things to worry about.Â But I found it particularly irritating today.Â What does it say to me?
It says “I can’t be bothered to glance at the portion of your child’s chart that contains your name. ”
It say “I’m not going to bother asking your name and then trying to remember it for the duration of this conversation. I will probably forget your child’s name, and all about your child, a minute after you leave.”
It says “I’m going to talk to you the way your child talks to you rather than speak to you as though we’re on the same level and partners in this care.”
In some cases I am having serious conversations about my child’s respiratory rate, or her oxygen levels, or the amount of spasticity in her body, and in those cases I really hate being called “Mum.” Don’t prognosticate on my child’s future and then fail to ask my name.
I’m not always offended by it.Â Some NICU nurses called me “Mum” as they brought blankets, or helped me find a bath to wash a tiny four-pounder. They may have been someone walking by and helping out, not someone who spent a shift caring one-on-two for my girls.Â And I think they were using the word to remind me that, despite all the tubes and the fact that I had to ask where diapers or towels were, I was the mother.
But there should be a rule – if you will be having a conversation that’s important, and that includes almost any conversation in the medical realm, ask my name. If you’re having an informal exchange, or scolding me because I didn’t register, or didn’t understand, don’t condescend to me and call me “Mum.”Â And if you’re not sure, don’t do it.