sara skates

Toby participated in a sled hockey clinic this weekend:

He had a total blast.  Though when he got off he exclaimed “Mom!  Those professionals make it look SOOO easy!”

He fell over a bunch of times (usually quickly followed by “I’m ok!” in his little voice) – but yanno?  Ice is slippery.  Afterwards the US National Paralympic team played Canada’s team – they are gearing up for the winter games this spring.  They’re awesome to watch – the captain of the team stopped to talk with Toby for a bit while Toby was getting his helmet on – he was awesome with Tobes.  The whole team is very inspiring – amazing athletes and way more ok with slamming into each other at high speeds than I would wanna subject myself to…

A local team is starting up for Nov and Dec – Toby is signing up.  The beauty of the sport is that it works for anyone who has arm control – folks with physical disabilities and folks without can all use the sleds and play together.  If they have a spare sled – I may get out there with them – although instead I may end up being the one to upright kids like Toby when needed.

Elias walks

Go give his mama a big hooray – it’s very awesome news.

Tags: CP, Elias

As Toby grows, I gain little windows into his thought and growth processes re growing up with CP.  When he was a little younger, it didn’t come up often – and much of what came up was his version of his “story” – his mommy got sick when he was in her belly, and the doctors took him out early, and he has CP which means that his brain doesn’t talk to all of his muscles very well so he needs help with walking but he likes chocolate ice cream and Blues Clues and to play with his Nintendo.

In the last few months (half a year maybe?) it has changed.  He still tells his story when it comes up, though his list of likes has changed (presently, he likes playing Monopoly and figuring out how to earn money and playing the Wii).  He is “struggling” more however with his difference.

Partly, he has been in somewhat of a “self-blaming” phase – he apologizes at the drop of a hat – for “being a bother”, for “making a little trouble mama” – honestly?  It breaks my heart.  Partly, as I *so* recognize the impulse of being in the way – it’s familiar to me at the cellular level – it brings this level of memory of how I felt growing up to the forefront.  In hindsight, I can see that in so many ways I had unmet needs as a child – my introverted self was pushed to do things fundamentally mis-matched with that trait – often and vastly.  I survived, and gained some strengths on the way – but it’s interesting in a difficult kind of way to see Toby struggling with similar feelings.  While it’s in some ways different (he’s not quite the introvert that I was, although he does not have such a high need for social interaction as his sister does), and I don’t think we push him into social situations that he’s uncomfortable with – he does end up being pushed to work at a lot of phsycial tasks that are just hard for him.  It’s not a leap to me to see how he might feel similarly.

Yes, we counter these sorries with a variety of responses that I hope will instill in him that really, it’s ok to need and ask for help (everyone does); and while yes, his CP creates some situations where most others don’t need help – CP just is part of him, and we’re so lucky to have him and honestly I wouldn’t change him; and yes, parts are really hard it’s not fair is it?  I can only hope that it’s enough – it’s one of those areas where I feel fundamentally unable to give a kid all that he needs.

His questions lately center more on the whys of why he has CP – sometimes very specifically about why him in particular.  Lately, he asked asked for more facts about pregnancy and gestation and birth – I pulled out my pregnancy books (and a biology book) and showed him the pictures of gestational development – fetus to baby drawings inside a belly.    He’s at a point where I could also talk about some of the theories of why pre-eclampsia happens – while the cause of it isn’t really known, the theory that makes most sense to me is the one that focuses on some malformation of the umbilical cord or the blood supply system in the placenta – such that there’s decreased blood flow to the baby, and the body kicks into overdrive (high blood pressure) to fix that.  With the line drawings, we were able to talk about these various parts and his belly button etc. – it’s entirely awesome to see him able to grasp these new levels of information.

He also brings up how hard it is at times – and how frustrated he gets.  I inwardly cheer at this – as it  means that he’s able to vocalize when he’s not happy with how some issue is being addressed.  The latest example is how kids at school were lobbying for the chance to be the one who got to push his wheelchair behind him as he went from one classroom to another.  He doesn’t use the wheelchair – but they have had it follow him in case there’s a need for evacuation.   Toby was uncomfortable with the fuss that kids were making and how it was a big “issue” about who got to do it – in his words, he said he didn’t like the kids fighting over who got to push his wheelchair.   Once we identified the problem – various parties sprang into action pretty quickly – especially because he had voiced this not only to us but also to a few of his providers at school.  Immediately, they implemented a different plan to decide on which kid it was (they draw a stick and rotate through the class every – one kid does it for 3 days then they rotate), AND all the providers put their heads together.  Toby really keeps up with the class in his walker – and in the case of a need for evacuation?  He’ll never be that far from an exit door, and they think the wheelchair is probably not necessary.  It has been punted, and now it’s left down in the gym which is where he actually uses it.  Score one for yet one less “thing” for him to need to make his life work.  And score an extra big one for his developing advocacy skills.
He has come up with ways to go through all the normal “tantrum” things that kids this age do.  Hannah used to (and still does at times) stomp upstairs and go into her room and shut the door and put signs on it saying “Do Not Enter!” or “No MOMS allowed” with various adorable mis-spellings.  While Toby does not and cannot stomp upstairs, he gets himself into the downstairs bathroom, closes the bifold doors on the little alcove entry way to it, closes the bathroom door, and writes and tapes a sign to the door “Keep Out” – when he needs a little privacy to cry and feel like moms are very unfair and mean and all

All in all, he’s doing pretty well with this new level of sorting out his CP challenges on a cognitive level.  He’s doing great at school, something popped this year and he’s right up to speed with everyone and everything academic.  He complains about homework but that has zero to do with struggling to do it LOL – and everything to do with the plethora of other things he’d rather be doing.  I have my worries about him, but then, I have my worries about Hannah too – they’re just different.

Hannah – by the way – has become a knitter overnight   It’s worthy of its own blog post though

Tags: CP, disability, parenting

Thanks to The Gimp Parade for the link – (admittedly it was from an older blog post – way back on 8/1, oops).

But check out these photos from the 16th anniversary celebration of the ADA in New York City.  The event was organized by the group Disabled in Action of Metro NY. 

Seeing a scad of crips all in one place at once is pretty empowering.  I have lots more to say, but work is calling at the moment….

What’s it mean when the BIGGEST wish you have for your mobility-impaired child with CP is that he would just start pooping in the damn potty???!!!

I shouldn’t complain.  He has been doing really well – he sleeps all night without a pullup and waits to pee until about an hour after he gets up in the morning, he goes most days without wetting his pants (although it still requires vigilence on our part watching for "the potty dance"), he has about one accident a week at school/summer camp.  It’s so clearly a case of he CAN but chooses not to verbalize when he has to go.  I mean, he has bladder control, really he does.  Whether he exercises the option of going to the bathroom is another issue.  We’ve done the gamut of responses – child-led, rewards, much cheering upon little successes, major disappointed sad-face reactions, treating it like "nada" and "ok, well, let’s clean this up buddy"; none of it has worked.

So officially, today, we’re treating it as a power struggle, one mamas are going to be "alpha" over to boot.  He was warned repeatedly today that he’d be losing computer/Nintendo/TV priviledges if he peed on the rug or pooped in his pants.  He was fine all day, Terry biked him over to the playground and back and he went to the bathroom upon return.  Ten minutes later, he needed help getting into the computer chair – with a poopy-full pair of undies.  Thus – privileges were removed – with much crying and sobbing ensuing.

He’s a really easy kid to discipline in most cases – he’s hyper-responsive to "looks" and to slightly raised voices.  In this one arena though, he’s trying to pull 6-year-old rank – and we’ve about had it   I KNOW part of it has to do with the fact that he needs grown-up help to go to the bathroom – he can’t undress and stand without help.  And it takes a certain amount of time – so it’s a significant break from whatever fun he’s having.  But too bad – we’re just tired of cleaning poopy pants.

So – I’m thinking that’s all it means – we’re damn tired and frustrated – and it’s really time to move on to another phase of parenting Toby’s bodily functions.  In the long run – he’s not going to college in pull-ups – we know that – and he’ll be a happily well-adjusted grownup who is loved and employed and all that good stuff.  For now, we just want him to use the flipping bathroom, not his pants   Like, 99% of the time, not just 90% of the time.

We don’t want much, do we?  !!!