Category: Preemie Stuff

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.

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?

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.

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.

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

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.

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

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

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.

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.