Tag: cerebral palsy

Bit by Bit

If you follow me on Instagram, perhaps you already saw this picture of C standing briefly. To be fair, I should probably show the whole series, which shows her head going down and her giving her mildly anguished face after a minute or so. She might not love it, but she can do it.

Can stand for a couple of minutes now.

A photo posted by Hil (@imlookingatstars) on

Sometimes things feel like they move at a glacial pace, but it was only a few months ago that C stood for the first time, and for a long time she could not stand really without orthotics (and probably shouldn’t). So she is weight-bearing now, which is amazing. She does not have coordination yet to sit. She can barely roll and can’t really move herself out of a position, so pulling up will be a long time coming. She was very much propped for this photo. But I took a bike ride with her the other day for the first time since August, and I remembered how I used to have to hold her head. The only seat we found that gave decent head support was quite upright, so her little noggin did bob down after a while. By the end of the ride, I’d have one arm behind me propping her up. This time I only had to push her head up once. Slow and steady wins the race. Or maybe it’s not a race at all.

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 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 opts for no special treatment. B is more than ready to smack C 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.

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?

Difficult Questions

A few weeks ago, while we were at C’s physiotherapy session M wrapped her arms around me and said “Why are C and B different?” I couldn’t think of a quick answer, but M is nothing if not persistent. “Why are they different????? WHY???” I can’t remember what I muttered, but I didn’t do a very good job since we were in a session with three therapists, and two cranky babies. When I tried to return to it later that evening she seemed to have forgotten.

I’ve been open with the kids about C’s brain injury. We tell them that part of her brain that helps her move got hurt. It’s possible that her cognition or vision or other things are affected as well, but we don’t know that, and so we haven’t gone there yet. To me she seems as intellectually aware as any other baby, and that’s how I treat her and wish her to be treated. Sometimes I wonder if I am too open, as P happily blathers about it with random strangers. Other times it comes up in a nice way – like we watch a show called Signing Time. I explained to the kids that the lead little girl’s sister also has an “owie” on her brain like C, and that she appears in lots of the segments. M was very pleased by that. Sometimes I wonder if “owie” is an appropriate way to describe it, but it is an injury and I’m not sure it’s useful to get overly technical.

Last night as M was brushing her teeth, and I was putting one of the twins down, I heard her ask “When will C’s owie get better?” Then I overheard a very calm, patient and lovely explanation of neuroplasticity, aimed at a four-year old. The broken part won’t heal over. Other parts of her brain may try to take over what the injured part would have done, but they might not do quite as good a job. P came up from the bath spluttering “NEVER?” “But won’t skin grow over it?” asked M. “How big is the part that’s hurt? Show me on my hands.” The truth is we don’t really know, and J never saw the scans, but I think he went with “thumb.” Probably more, but thumb is good.

“You mean she might never run as fast as I do?” Probably not. “Even whens she’s SIX?” We hope she’ll walk by then, but maybe she’ll need a walker, or even a wheelchair if we’re going far. But she might be very good at other things. Then later, M putting on her pyjamas, she was singing, “But I want a wheelchair. I want to be the one in the wheelchair.”

These are the questions adults don’t ask – but kids get right to the heart of the matter. These are surreal conversations, and they are difficult ones. But they are very healing in their own way.

Jogging Along

A year ago, we were still hoping we’d get out of this whole CP thing, perhaps with it not being too noticeable or too obvious. Based on what we’d been told, we knew that was probably unlikely, but we were still hoping. At that time, the thought of a kid who needed a walker, or a wheelchair, was kind of terrifying. Four months ago I bristled at the idea that we needed supportive seating – I still want her to sit independently, ASAP.

I’m learning patience. I still do want those things to happen – walking and sitting. We still work very hard, several times a day, to get her sitting, rolling, bringing things to her mouth, touching her toes. And we see results from that. Today she grabbed the curtains as I went past, which she could not have done a month ago. But we are getting referred to a centre that will provide us with “equipment.” We are talking about getting her a walker. Except now I’m excited about a walker. I still hope this equipment is a stepping stone in helping her eventually walk and sit independently. But I see how much C wants to sit up and be part of things, and how lately she gets left behind on the living room carpet while the other kids move from room to room. The possibility of equipment is no longer scary. I’m actually relieved that her therapists think she may be capable enough to move with a walker.

And that’s me, jogging along the path of acceptance. I still strive to be like one mother I met who said, without pausing, “I wouldn’t change it.” I can’t say that quite yet. I’d love things to be easier for her. But I do know I can’t change it. I still find I have triggers that bring me back to the NICU and birth and reliving it all over again. There is still a boatload of uncertainty. But I’m learning that instead of suppressing those feelings, I need to just RUN INTO them full force. Let them wash over me like a wave. Then I can take a break and say “Walker, here we come!” At least I hope we’re coming. Like everything in this place there’s a wait list. If it takes as long to get a walker as it did to get someone to give me some advice on feeding, we may be waiting awhile.

11 months

One of the things I like to do with C’s therapist is talk about the small changes we see each week. Because, big picture, development is slow. At 6 months I thought C was close to sitting. At 9 months I was positive she was nearly there. Now, at 11 months (adjusted! I never think in “actual” terms.) we aren’t really that much closer. By focussing on the little changes, we keep momentum.

C has made enormous progress in many ways. Months ago I wasn’t sure if she’d ever use her fingers and hands as her arms were often just pinned to her side. Now she can move them, spread her fingers, and she works very hard to guide things to her mouth. Months ago she used to lay on the carpet, barely moving (but always smiling at everyone!) Now she wiggles up on her side, rolls from tummy to back, kicks her legs and arms, reaches for things, and can sit for a little while with just a little support. On your lap she will wriggle and move.

C can prop herself on a tray for quite a long period. Propping on the floor is much harder for her. Her hands still fist in this position as most of her energy is working on keeping up her head.

Working on Sitting

This is what she looks like when she gets tired. She’ll start to lay her head down.

Untitled

Oh, and I had a crazy idea recently. A family friend pointed me toward some research on kids with CP and getting them moving earlier in modified toy cars. I see how B is learning to navigate her space – to move around chairs or crawl over items. C, being immobile, doesn’t get that education. I was trying to think how we could encourage her to do a crawling movement. I think I had seen a video of a child on a scooter board crawling around somewhere. So I ordered one and tried her on it. We’ve only tried it a few times and she wasn’t too impressed, but an added advantage is that it gets her propped up into a sort of “hands and knees” position and encourages her to lift her head. You can see here how her left arm is more involved than her right. The right one, which is less prone to spasticity, is relaxed at her side. Her left arm is fisted and twisted with the wrist facing out slightly.

Scooter

And then she’s tired of being man-handled.

Tired of it

B is always ready to help. Or steal a toy.

B ready to help

Miss B needs an update too. She is army-crawling around right now, dragging herself very quickly. She is starting to bring herself to knees, but hasn’t quite got the true crawling down yet. She hates to bear weight on her feet. She also has five words, which is crazy for a tiny thing. My others didn’t talk until past one.

Today

Since the girls’ first birthday I am a lot more at ease with C’s diagnosis, and a lot less emotional about it. A series of things came together – first I met a mother whose (older) child presented in a very similar way, and that little girl is doing great. Her mother was a lot further down the path of acceptance, and that was inspiring to see. Then I went back to work, which has been a surprisingly smooth transition, at least as of now. And also, we passed that big year milestone. I’m not thinking “A year ago, I was pregnant. What could I have done differently to stop them coming so soon?” A year ago they were here and we were already on this journey. They are so entrenched in our lives, that I cannot imagine where we’d be without them. Time heals many things.

That isn’t to say it’s not still hard at times. I wonder about milestones. I get frustrated when we get wait listed for another services that we needed yesterday. I worry about a lot of bridges we still have to cross. But I worry less, and life just keeps moving.

The positives have stopped being “silver linings” and just been positive. One wonderful aspect is the people who have been so supportive of us. It started when our girls were in the hospital and people emerged from the woodwork with meals and kind words. And I keep meeting people through the twins, people who want to help, or just have a soft spot for a kid with some extra needs. I love that.

D-Day

A few days ago, Cora was diagnosed with cerebral palsy. We’ve known since a few days after she was born that this would most likely be the case, though no one ever used that term. We have also known since she was four months that more than likely it would affect all four of her limbs. But because it’s hard to tell if a tiny infant has a movement disorder, it is typically not diagnosed until they are a bit older and are exhibiting delays. She is now eight months adjusted, and the tightness in her limbs, and the difficulty she has in moving is apparent to a more trained eye. Nothing has actually changed, it’s just that now a doctor is willing to affirm that yes, the brain bleeds have affected affected her motor skills. They still cannot tell us what it means exactly. Will she walk? Hold a pencil? Play piano? No one will say for sure. What J and I have read is that parental expectations are a huge determining factor, so we continue to assume that she will be running on the playground some day.

Before I get too far ahead of myself, you may be wondering what is CP? It is just an umbrella term for someone who had a brain injury before, during or shortly after birth which has affected their motor skills. In C’s case, it happened after birth as a result of her trials in the NICU. It affects approximately 1 in 400 people. For some people it might mean something as subtle as a limp. For others, it might be almost entirely incapacitating. The brain is a very complex organ and can compensate in very unexpected ways. It was once believed that it was a static condition, but it is now known that in some cases the brain can reorganize itself around areas of damage, so therapy can help a lot. It is very difficult to predict what it will look like early on, although we know it will not be at the very extreme end of the spectrum. But beyond that, we don’t really know what it will look like in Cora and no one will, or should prognosticate.

Even though I knew this was coming, both J and I have had an unexpectedly emotional reaction. I am so proud of the gains she is making, learning to use her muscles and working so hard to do what is easy for others. She is my little warrior. And I know that to be the best mother I can be to her, I need to keep moving on the path to acceptance. But… I’m not there yet. I still feel sad. And angry. And guilty. At the same time I’m so grateful, so proud of her, and feel so, so lucky to have her in my life. She makes my life better because of who she is, just like my other little ones do.

The diagnosis doesn’t actually change much in C’s life. She is already getting regular therapy, and she will continue to get it. We keep working with her, helping her learn to relax and use her arms and legs. We keep working with Beatrice too, who is apparently slightly delayed as well.

J sometimes says “Well it won’t get any harder than this.” And maybe it will or maybe it won’t. In the meantime, life continues, messy, beautiful, fun, ridiculous, mundane, absurd, with the occasional struggle but also lots of joy.