Category: Stuff I Like

Scooot

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

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.

Investigating

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?

Untitled

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!

Expectations

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.

Toys for a child with cerebral palsy

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.

2. Magformers

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.

Magformers.

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.

Fishing 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.

5. Balls!

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.

Summer Days

Yikes, sometimes I have so much to say I have to schedule posts and then a week or two goes by and nothing, nada, zip.

We just got back from vacation, which was lovely. We stayed on a farm, in an old log homestead. I was thankful again, that despite C’s CP, she has been very healthy. She got a fever on Day 6, and if she’d had a shunt, we’d have had to race to a hospital to make sure it wasn’t malfunctioning. Thank goodness, she seemed to just have a virus, and I just dealt with it the way we do with the others. But she was so sad and so much weaker. She couldn’t even tolerate holding her head up in her high chair. Thankfully she’s on the mend and she is back giving her patented Coco smiles.

I knit a lot, but didn’t count on no web service, so I couldn’t access my Ravelry patterns. That means, I just did about 20 more Pop Blanket Squares, but I won’t bore you with pictures. Instead I’ll bore you pictures of the kids.

Coco on Hols

Bea

Beets!

I also read two books. The first was Four Walls of My Freedom, by the mother of a now-adult child with CP. It was a good read – first just because it’s interesting to read the perspective of someone looking back on the early years. With the benefit of hindsight, she questions whether all the more intense therapies or medical treatment was worth it in the long run. The balance between “fixing” and “accepting” is a constant moral dilemma I have. It’s sobering too, as she explains some of the trials they’ve gone through, such as when she thought the doctors were finally understanding the pain her child was in, and instead she was investigated for giving her child too much pain killers. It’s more than a memoir though, as she makes some interesting arguments about the way we value people with disabilities, offering a sort of a primer on some of the philosophical thinking in this area. She discusses controversial figures like Peter Singer, who has argued that infanticide may be warranted in the case of children born with severe disabilities. The prejudice and stigma faced by people with disabilities is very real – perhaps one of the last areas in which it is socially acceptable to make that kind of argument. She proposes a very different approach, based on the thinking of Amartya Sen, which values experiences and relationships as measures of well-being. She works with someone to develop an index of well-being that applies to her family.

I also started, and am mostly through, Andrew Salomon‘s Far From the Tree. At first I was puzzled by this book, which deals with a concept he calls horizontal identity – children who are different from their parents due to deafness, dwarfism, severe disability, or even things like being born of rape. I wasn’t sure what it all had in common, or whether I should be insulted by the idea that having a disabled child was similar to having a child who commits mass murder. Anyway, I put it aside and read it and accepted perhaps we shouldn’t place these experiences in a hierarchy. Each chapter stands alone and simply recounts the experiences of families dealing with these “differences.” He tends to the extreme – his examples on disability were all families of kids with multiple severe disability, and I found his chapter on autism particularly bleak. But he resists easy, pat summaries – discussing the controversial Ashley Treatment with sensitivity and compassion to both sides of the debate. His strength is that he lets the stories speak for themselves, and they in turn speak to the larger human experience. I felt profound empathy for what they were going through, even in stories where parents walked away and said “Sorry, I can’t do this.”

Steve from Blue’s Clues

I’ve always had a soft spot for Steve from Blue’s Clues – the lovable, friendly guy who appears in the first few seasons of the kid’s show. Even before I had a baby, I remember thinking, this is the kind of show I’d let my kids watch. Maybe it’s because Steve reminds me a little of my older brother.

Steve has left the show, but I was listening to one of my favorite podcasts, The Moth, and I was so excited when I realized he was about to be on. If you’ve never heard The Moth, it’s a podcast of personal stories, with a different speaker every week, sort of a spoken-word memoir. The stories are 10 or 15 minutes in length on any topic – some are funny and some are tragic. Steve’s is wonderful, especially if you’ve ever wondered what its like to be one of those always peppy, happy children,s show hosts. He talks about the “fameishness” that came with being on such a popular kids show, and it’s pretty funny if you’ve ever seen the show. I think my favorite line was when he’s on a date and overhears someone saying “I think that’s Steve from Blue’s Clue’s… and he’s with an escort…”. Take a listen.

First post

It’s really liberating to start a blog, fresh and new.  I’ve had a few web presences over the year, wedding blogs, garden blogs, crafting blogs, website design blogs, none of them updated very frequently.  It’s somewhat exhausting to think about how much content I’ve spewed about myself online.  Suddenly it occured to me – instead of three or four rarely updated blog, why not just have ONE?  So simple. But I took a big step and deleted every one a few days ago.  So here we are!  Still figuring out the menus and so on, but stay tuned!