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.
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.
There are many things I feel that C misses out on by being one of four. If I had fewer kids, I’d have more time and energy to devote to doing her physiotherapy exercises. I’d be less tired at the end of the day and I’d have five more minutes to put her in the gait trainer. She’d spend less time sitting her in her high chair doing nothing while I nagged P to do his home reading or dealt with B’s endless demands for “uppa.” I might be able to afford to work less and focus on her more. I could get her in the pool more than once a week.
But one area where I feel like it’s a huge boon to her is language. She hears people talking all day long. Recently our speech therapist suggested that we really focus on repeating words. She had a term for it that I’ve forgotten. But, for example, you’re playing blocks and you say “Look at the block! Are you hitting the block? Should I get another block? Did you like that block?” Eventually she’ll clue into what a block is and try to approximate the word. It can feel a little weird and artificial, but when you have a typical two-year old, she does that for you. B is talking more than C, but she still talks mostly in single words – like “yuck”, “eat”, “baba (bottle)”, “want more”. With her limited vocabulary she repeats those words or short phrases many, many, many times a day, and eventually C picks them up too. A few months ago it felt like B was eons ahead with language, but now I’d say that C can say a good portion of the words that B does. She doesn’t use them as frequently or as fluidly – she has less control over her mouth, and the lack of trunk controls makes her a bit breathy. But she says them. She even has a few of her own like “walker” and “stuck”.
A few nights ago we were realising what leaps and bounds C has made with talking recently, and we were feeling so lucky about it. Which is funny because if two years ago you’d have told me I was feeling lucky about anything to do with CP, I probably wouldn’t have believed you. But over time, perspectives change – a lot.
One of the biggest things going on around here is C’s new Scooot. I’ll start by saying that I paid full (gulp!) price for the thing and this is a totally unsolicited review. (I always wonder that when I read reviews, don’t you?)
The Scooot is a special needs device aimed at kids two to six. Basically, it’s a little triangle on wheels, that has different attachments that can allow a child, depending on their strength, to “crawl” while on their tummy, or to “scoot” while sitting. It also has add on wheels that make it look sort of like a pre-wheelchair. (Unlike a wheelchair however, it is for indoor use and if your child is as involved as C, is not something she would be able to travel very far in.)
Before it arrived, I was most excited about the chair mode, particularly as we had tried the ZipZac chair and liked it – C even tried to push the wheels. Unfortunately our funding request for the ZipZac was denied, and while I am still hoping for a reversal of that decision, I thought the Scooot might be an alternative – it’s just slightly less expensive than ZipZac.
As it turns out, for us it doesn’t meet the same need as the ZipZac as it is considerably less supportive and C doesn’t have the trunk strength to sit on it in chair mode. However, we have gotten so much use out of the tummy-time mode.
Tummy time is a mega-challenge for C because her arms are very high-tone (i.e. spastic). She also has very low tone in the trunk. That means that when she’s on her tummy, she has great difficulty getting her arms forward to push off the floor, which in turn means she doesn’t develop core strength that we need to do so many other things. For some reason I feel like tummy time was easier for her when she was younger, but perhaps I just took pictures when she did it for a second, and now I assume she could do it for longer.
Anyway, the Scooot brings her arms forward for her and lets her get into that Cobra pose position that is so important for trunk strength, and shoulder and arm strength. When she’s on this thing, we can roll a ball to her and she can bat it to us. Or she can stare at trains. Or investigate the straps on her highchair.
Within a week of it arriving, C had figured out how to move around on it. I’ve talked before about the glacial pace of CP, so that was nothing sort of a miracle. She even chased the cat! Moving independently is a whole new thing for her. I optimistically call her gait trainer a walker, but the truth is the “walking” only happens with a whole lot of coaxing and assistance. The scooting (scoooting??) is totally on her own. Unfortunately, she soon developed blisters on her feet from pushing off and hasn’t been as keen to move around, but I’m sure once her feet are better, she’ll be at it again. Both the independence, and the reciprocal movement of her feet, should help her with the walker too. Maybe even with sitting… but we weren’t going to talk about that, were we?
So yes, I’m pleased. I bought it with the knowledge that there is a fairly decent return period, but I can say for sure we will be holding onto this thing despite the hefty price tag. In future I hope C will get use out of the other modes too. I must say, while it’s not particularly difficult to change the modes, it does involve bolts, and washers and several Allen keys, so we’ll probably stick to tummy mode for quite a while.
C also has some other very cool devices to get more moving, like her new toy car. We’re using that outside though as our house is not large enough for it but if you check me out on Instagram you can see pictures of that too. I didn’t get it on film, but my favourite moment so far was when she totally ignored us telling her to stop. Every toddler should have that prerogative!
I’ve been busy lately, hence the little blog pause. Partly it’s because I’ve been waking up really early to go for runs before the kids wake up. After totally ignoring my New Year’s resolution to exercise for all of January, I decided that February was better late than never. I am amazed how much better my mood is when I get some cardio in. But it also means I’m kind of done in the evening and can’t wait to crawl into bed.
We got this report today in the mail about C. Usually I dread these reports, and I even called to complain last time because I felt blind-sided by their evaluations. Basically the report purported to assess C’s cognitive skills according to whether she could do a bunch of things that would require her to have typical motor skills. I was mad.
They seem to have taken it to heart because in this report, I could tell they saw the child and not just the disability. “C is a sociable young lady who was very calm and interactive… C has an inquisitive outgoing manner… C is a resilient youngster with a can-do, cheerful attitude.” That may seem like filler but I think it’s important for parents to read positive things about their child. These kinds of assessments can be incredibly stressful for parents and can have a massive effect on their expectations. And parental expectations matter. When couched in positive language, statements like “it is too early to predict her stages of function” don’t become scary – they become positive!
I am a bit of a mama bear when it comes to my C.
I don’t go backward on this blog very often – that is I don’t read old posts about where I hoped C would be by now. I think if I told myself last spring that by this time C would not be sitting yet, would not be crawling yet, and would not yet be able to hold a bottle, last-spring me would have been very disappointed. And yet, this-year me is much more at peace with it all.
For one thing, that’s because I know the things she can do. Like she can talk! Yesterday, it was the sweet sound of “Mama, mama” in the morning. There’s also baba (bottle), go, uppa (pick me up), no, mo’ (more), huggy (hug), and a handful of others. I mean, a year ago, yes I hoped she’d be sitting but I also didn’t know if she’d be verbal. As it turns out, by the “standardized test” she is more or less on track for language. One thing I should admit, is that I choose to believe standardized tests mainly when they are favourable. When they are not, I dismiss them. She is a bit behind because she has less coordination over her mouth, but she said enough, or nodded enough, or looked at the right picture in the book enough, that they scored her as typical both receptively and expressively.
CP is a condition with a huge spectrum from “independent in every way” to “dependent in every way.” Last year we did not know where on that spectrum she would be. Last-year-me thought that was the cruel thing about a CP, because you had NO idea. But this-year-me thinks that maybe it’s a good thing because you have a little time to come to terms with it all. We still don’t exactly know where on the spectrum she is, but it seems to matter less.
One interesting thing about her language, which is different from EVERY other toddler I know, is that she is far more likely to say “yes” (she nods) than “no.” But I guess no one says “no” to C. No one says “NO! Don’t touch that oven door!” or “NO! Don’t wear the cereal bowl full of milk as a hat” or “No… you can’t have the cellphone.” B hears “No” dozens of times a day, and she reciprocates. C rarely hears it, and when she does her lip buckles because she’s so astonished you’d ever refuse her.
And since I talk about her talking, here she is. If you told me last week that she’d be stringing syllables together like this, I wouldnt have believed it.
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.
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.
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.
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.
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.
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.
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?