Turning Two

I can’t believe my “babies” are on the verge of two. When I look back at this picture, I still remember the smells of the Neonatal Intensive Care Unit so clearly. There was the soap, and iodine and hand sanitizer. That hand sanitizer always sends me right back to 2013. And then there was the plasticky smell of the breathing masks. There was the smell of the harsh chemical wipes we used to sanitize those big pleather chairs, which we shared. Sometimes there were no big comfy chairs, and you had to wait, hoping some other mother would leave her baby so you could settle in for a snuggle. Then there was the smell of the rubber gloves we wore when handling the wipes to sanitize those chairs. There was the comforting smell of those freshly-laundered yellow towels. The nurses often warmed them up in the microwave to keep us toasty. Somewhere under it all, there was tiny baby smell, buried under cotton hats and masques and Pampers that went up to their armpits.

Flashback

I think they were both on CPAP by the time this was taken, and I can still hear the burbling noise of the Bubble CPAP machines. There was the feel of little squirmy baby limbs, which I should have been feeling somewhere on the inside instead of out, and the little foamy mouths from the CPAP. There was the hum of the feeding machines with a big syringe of yellow milk. For B that machine would compress that syringe over two hours or 90 minutes, as her tiny tummy could not handle it any faster. This picture sends me right back there. I can’t believe they’re two.

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!

Resolutions

I thought I’d revisit my New Year’s resolutions, since it’s been, what, a full season now? A brief check-up, if you will.

#1. I said I’d work out twice a week for at least 10 weeks.

Okay, well I didn’t start with this one until February, but for the last six weeks I have indeed been working out twice a week, running.

#2 I said I’m going to try a new recipe at least once a week.

Hm – I think I have actually done this.  Probably not every week, but sometimes I’ve done two in a week. I’ve started doing a little meal prep on Sundays for the rest of the week, and so I’m more ambitious early in the week.  By Thursday, we’re back to rice and beans. But rice and beans are good!

#3 I said I’m going to get C to the pool about once a week

We haven’t been in a few weeks.  But we’ve been doing lots of other things – getting her in her walker, taking her to the park and having her stand, doing lots of tummy time and having her roll the ball to us. So I feel like we’ve lived up to the spirit of it by ensuring she gets exercise – no easy thing when you have no way to crawl, sit etc.

#4 Also… more baths, for me.

Yeah, no, not really.  Where does the time go?

Sorry, not the most thrilling post, but there you have it.

Resilient

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.

Finished Objects Sunday

Okay, so round-up of the recently finished projects.

I actually finished my Ginny’s Cardigan a couple of weeks ago and have been wearing it, but I finally got around to adding the buttons. I chose an assortment of vintage glass buttons I bought at a local button-only store.  They have that sort of magical feeling that one might expect from a Harry Potter-inspired knit with an owl-motif on the back.

Ginny's Cardigan

Ginny's Cardigan

Next up, a pair of socks, also finished some time ago.  I started these in November when I was in San Francisco and I used the instructions I got in Kate Atherley‘s custom sock class.  I wasn’t thrilled with the yarn – the colours “pooled” a bit on the leg.  But I was really happy with the fit!

Socks

And last, but definitely not least, I whipped up this project in about a week, and even improvised my own pattern for it! I wanted to showcase my Rain City knits rainbow pack that I bought a few months ago.  I hope the full-length-now, three-quarter-length-later sleeves means the twins will get some longer-term use out of this.

Rainbow Sweater

And just for fun, both the twins in Rain City knits sweaters. Don’t hate me, but we had a crazy (for March) sunny day yesterday. It’s cool and grey again today if that makes you East Coasters feel better.

Two Little Girls in Rain City Knits

Four Kids

Sometimes people ask me what it’s like to have four kids, and all I can say is that it is completely insane. The kind of person who should have four kids should thrive on chaos and also be completely organized. I am not sure I am that person.

P does not know any other children who have three siblings. He actually could not think of a friend at his school who had more than one sibling. I am sure there are swaths of the country where four or more kids is no big deal, but in my urban neighbourhood the cheese stands alone.

My oldest two are very self-sufficient, which makes things easier. I remember thinking my oldest child was a tough toddler. He was a colicky baby, but now that I’ve had the experience of three more, I realise he was a breeze. My second child is a fairly intense child and has multiple tantrums a day, sometimes over very innocuous things like “you smiled” or “you didn’t remember where that photograph was taken” or “you can’t tell me the plot of a film that I saw with someone else and that you’ve never seen.” She is also very sweet and loving and creative. She thrives one-on-one, so we try to carve those opportunities for her – but they are mostly snatched – a grocery trip here or a coffee date there.

B is a more intense version of her older sister. She is the kind of toddler who needs to keep busy and who is always asking for her coat and shoes to be put on in the hopes you will get her outside. She is also much more physical and adventurous than either of her older siblings were, which is very cute but also frightening. She is very demanding. Perhaps that’s not a personality trait, but just a survival instinct when you have three siblings.

C and B could not be more different, as C is super easy-going. She has a huge smile for everyone she knows, unlike her twin who is invariably suspicious. But C is also very physically dependent and has a limited tolerance for her various seating/walking/standing contraptions and an even more limited tolerance for hanging on the floor, so she spends a lot of time in our arms. Which then, understandably, makes B annoyed and more demanding.

I have no idea what the point of this post is, except that I feel like a lot of people, when they ask if you have four children, expect you to say that it’s fantastic in every way. It is fantastic in many ways. It is also very hard at times. There are many, many things I enjoyed doing before I had children which I have no time to do. I started exercising again recently and I realized the only way to do it is to set my alarm before my kids get up, and they get up early! It won’t always be this hard. I’m sure once we get a few years further along it will be much easier. But there are a crazy few years before you get there, and we are right in the thick of them. I guess it’s all relative though – I thought have two kids was hard. And it was at the time.

Thinking Back

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.

Talking

Vacation

If you follow me on Instagram you might have noticed that we’re away this week. Traveling with four children is a bit insane but we have an extra grown up on hand to help out. We’re staying in Maui, which somehow felt manageable with four kids. We’re not on the ocean — most beach hotels become unaffordable with four kids — but we have a very sweet little rental in a cute town and we’ve been exploring the beaches, towns and forests. And we can hear the surf through the windows of this little old plantation style home.

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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.