sara skates

Next Wednesday, the kids start school again.  They have both met their new teachers, seen this year’s classroom, and are generally ready to go.  On Toby’s playgroup board, someone initiated a poll asking  what after-school activities kids will be involved in starting this fall … and this has prompted serious mulling on my part.

The direct answer to the question:

Hannah:  Diving, soccer, girl scouts.  Swimming in the winter, we missed out on the fall enrollment (it got full before I got there).
Toby:  PT, more PT, and a little more PT for good measure.  Swimming in the winter (ditto).

All the other stuff that percolates in my head:

*We could find another swimming program and start in the fall. 

*Most are suitable for Hannah, few work for Toby.

*The one at my workplace is ideal, as they pair up all kids in the program with a one-on-one swim teacher (a college swim or diving team member generally), and they get a solo lesson. 

*That pool is great – it’s got different areas to it -  waterfalls and buckets of water and open areas and a resistence area. 

*It’s also great because it normalizes the swim class experience for Toby.  He gets one-on-one attention just like all the other kids.

*The local Y program for 6 year olds is group classes – Toby would probably need an additional adult in the pool with him. 

*He gets enough experience of not being like the rest of folks in a group that I don’t like the idea totally.  Yes, it’d get him in the pool.  But he’s starting to verbalize how sad?  frustrating? it is to not be able to do what other kids are doing…so part of me feels it’s unfair to intentionally add more of that.

*There’s an adaptive swim program, which would be fine, but it’d require one of us to be in the pool with him

*There are a number of other adaptive sports/activities programs we could sign Toby up for.  Soccer, horseback riding, gym, crafts, skating, etc.  Most would require assist of one of us.

*We’ve done a few of them in the past.

*Sigh.  I don’t get the brunt of it since I am out of the house at work for more hours, but we’re just plum tired from all the Toby PT management – KWIM?  Generally, the activities that require one of us too just exhaust us.

*For example, Terry flat out refused to add Cub Scouts to Toby’s plate.  If I could do all of it, fine, but I likely won’t be able to.

*He has asked about going back to the swim program at my place of work…dope that I am, I missed the enrollment date, and it fills up quickly.

*I checked, the waiting list is really long.

The bottom line:  It’s really hard to balance outside school activities when there’s a large component of other "stuff" (PT, in our case) to manage.

Toby’s book of the night at bedtime was this though:  Nathan’s Wish:  A Story of Cerebral Palsy.  It’s actually a really sweet story – Nathan thinks of giving an injured owl a chance to be a "foster parent" owl when the owl does not heal from a broken wing.  The owl gets a new sense of purpose in life, as does Nathan…Clearly, the book tells the story better than I (there’s a reason I’m not a children’s book author).  But – the story does a great job at portraying a boy with CP well, portraying the hard parts, but portraying the value of everyone none the less – and finding one’s way in life even though one may wish for something unattainable (flying again; walking without a walker).  It’s really great to see Toby make connections to parts of the story – seeing kids like him reflected in life is pretty rare.  And what’s not to love about connecting with animals. 

I guess that’s the lesson in this:  Parts of this parenting Toby thing are hard.  But ultimately, we do what we can and balance as well as possible and the rest just is what it is.  I tie myself in knots trying to make the experience right for Toby at times…and mostly, I feel badly for having missed the window to sign him up for the activity that works with us. 

In the end, it just means I won’t miss the winter sign-up day, but still.

Edited to say: Thanks for all the great suggestions folks – keep ‘em coming.  I called immediately re the scouting thing (having an older scout volunteer to be his buddy/aide) – which would work starting next year, but not for the "Tiger Cub" level which requires an "adult partner" at every meeting.  My local informant said that meant a parent, but I will check and see if that could be a consistent sitter instead   I have some concerns about Scouts in the long run – but that’s for another post.  The swim thing – I’m resigned to waiting til Winter – it’ll be ok.

While the top-down raglan is in time-out while I decide what kind of collar to morph the assymetric neck slit into*, go see Trey’s efforts to get gay/lesbian marriage equality in California.  And do what you can to force him into knitting lots and LOTS of rows of afghans, which when they’re blankets will be donated to Afghans.

There are tons of grass-roots knitting-blog efforts to raise money and/or benefit those who need it.  One of the things I love about knitting blogs (in all their permutations) is how many different ways folks do stuff like this.

*It won’t be hard to adapt it, I’m just faced with too many choices.  It’s not assymetric enough to leave as is (looking just a little "off kilter" does not make an assymetric design choice), so something is in order.  I also think the torso might be too long, but that’s another issue.

not really done.

I started knitting this sweater a few weeks before the holidays last December.  I finished the body before Christmas, then did one sleeve probably in February, and the other in May maybe.  All I had left to do was to do the bottom edge of "ribbing" (more of a basketweave edge), which I did in June.  Then, all I had to do was cast-off and weave in 6 little ends.  Which I did – a couple of days ago.

So this morning, I wet it and blocked it.  Here is is, lounging on my new blocking board:

I know, it doesn’t look like much, how about a close up:

See anything wrong?  How about here?

Despite the fact that I spend my DAY all day most days working with numbers, I can’t count.  On Row 1 of this sweater, I improperly divided the stitches to set up the neck split…there are more stitches on one side of the split than the other.

So – suggestions?  I’m not adverse to slicing and steeking.  There are two more stitches on one side compared to the other.  Should I cut all the way down, remove two columns of stitches, add a button band and call it a cardigan?  Remove just the two columns of extra stitches for the neck slit, add a border of some kind, and leave it a pullover??

The yarn also biases pretty crazily especially lower on the body, it should show up here upon embiggening
:
The basketweave ribbing goes pretty parallel to the inch ruler, the stockinette does not.  No, it doesn’t block out either.  It’s single ply yarn (I’m blanking on the name of it – I’ll add it later tonight).  Oddly, closer to the sleeves, it doesn’t bias so much, and along the front of the chest (where there are the increases for the raglan shaping), it doesn’t bias at all.

The sweater is for Toby’s PT.  I rarely gift-knit, but she told Terry how much she adored sweaters, and I immediately hit the stash for her.  I thought we’d give it to her at the end of Toby’s next Europeds intensive PT session – in October sometime.  So there’s time, but…I’m not at all decided about what to do.

Suggestions welcome of course.

A buddy of mine knits hats.  Lots of them.  They’re adorable, and she has a skill that my genes were not graced with:  She can knit the same basic pattern over and over again. 

But there’s one little problem.  See those cute girly hats with flowers on them?  Like this one:

They’re cute.  That’s not the problem.

The problem?  She doesn’t crochet, and these hats have crocheted flowers on them.

Which leaves an opportunity for those who do crochet – she’s willing to provide the pattern and the yarn, and she’ll pay per flower. 

Anyone interested?  Contact Jenn through her website, or zip me an email and I’ll connect you both. 

Jenn’s great – we each have kids who were due in the same month back in 2000 – which means we back about 7 years now (we met on a duedate playgroup board).  I utterly vouch for her coolness as a person, and it’s been great watching her business grow.

and pink he shall have.  In his bedroom.  And seeing as I was a peabrain and let him see the vast range of pink choices at Home Depot, it’s screaming Pepto-Bismol (only brighter, if that’s possible) pink.  Not any of the nicer raspberries or watermelons or fushias even.

However, since I know that — given the vagueries of 6 year old preferences — chances are his taste  will change next year month week tomorrow too late he already did, we decided first to paint only one wall of his room pink – it’ll be way easier to re-paint one wall than the whole room. The other walls will be a deep shade of blue-lavendar, and the trim will be green.

As soon as the paint was mixed of course, he decided he wanted a Tinkerbell room, thanks to the marketing powers of Behr, Home Depot and Disney:

Click for the larger to-be-fully-appreciated effect.

SOOOO – we decided to remove the sliding closet doors, and have his mattress jut out from there – and we’d start by painting the closet pink.  And maybe still do one room wall pink.  Since we were NOT exchanging the color scheme at this point in the game.  Despite lengthy and extended Toby protests.

Thank goodness because holy crap is it PINK.  We are *just* doing the closet pink.  All the other walls are the blue/purple, and the window trim will be the green, and we’ll call it a colorful day.  He is lobbying for the Tinkerbelle rug and pillows and all that, but that’s small potatoes compared to the PINK.

It really is Pepto-Bismol pink.  See here – the darker pink in the box advertizing the children’s version.  It is screaming nauseating pink.

Which Toby adores.  Which I find kind of cute.  In a holy-crap kind of way.

Partly, I was subjected to carnation pink rooms for my ENTIRE growing up years – seeing as we moved every few years, and my room was redone in baby pink every time – it was no small potatoes.  In high school we moved again – and a big to-do was made about me picking out my room paint and fabric color – I was going for violet – which was not on the approval list by my mother, so yup, you guessed it, I ended up with pink.  Walls and pink flowery sheets that she sewed with great effort, after I had spent hours picking out fabric I liked.  (She then bought what she liked.)  I hated it.  So to willingly paint any part of my house pink at this point – that’s mama love, pure and simple.

At any rate.  The wall paint and closet paint happened this weekend.  The trim not yet.  The subsequent Tinkerbell touches will undoubtedly take months.  We have a "fairy bower" that Hannah had up in her room for years – that’ll do. 

And it’s really not about Tinkerbell for Tobes – he hasn’t seen Peter Pan and only vaguely knows the concept of her as a fairy.  Which helps in the accessorizing department for sure – anything Tinkerbell-ish will work.

Today in a parking lot I saw this bumper sticker – really, a series of them, each word was it’s own magnet sticker thing on the back of a car.  It said:

WE ARE THE AXELS OF EVIL

So whaddya think – illiterate punk rock group, or goth figure skater???

It was parked in the general vicinity of the only area skate/dance store.  I’m going with the gothic version.  While I don’t find axels particularly evil in the grand scale of jumps, they can be a bugger.

This is my new watch:

(the black one)

("Red Tango" is the name brand)

The cat’s grimace about sums up my day …

Day three – there were multiple requests for potty breaks *while* stationed at the computer, and many valiant attempts to do more than pee in the potty – and NO, count ‘em, zero oopses today.  Which has happened before, but the novel new development is Toby’s verbalization of needing to go.  It’s all good folks – Toby’s on his way.  The dramatic difference seen today was (a) initiation on his own part rather than relying on us to see the signs, (b) doing so for both peeing and pooping, (c) trying, just trying.  He did great. 

He was a little worried at bedtime because he didn’t actually poop in the potty, but there was much jubilation over his attempts — because as MamaCate affirmed tonight via the cell support system, it’s the effort that one wants.  Who cares if they mess up if they’re trying folks.  I was freaking slightly over the fact that he now seemed scared to poop at all – and the last thing we want is a stuck system. 

But hey – there was no crying at lost priviledges – yeah.

Nuff potty talk.  I successfully worked from home today – not as efficiently as at work, and there was a notably high quotient of Toby Media Time, but I did get done what I needed to get done.  Hannah was suitably entertained by the two friends who spent the day here – I didn’t see much of her.  I do have some things yet to figure out on the tablet PC in tablet mode – like how the heck does one do CNTL-ALT-DEL with the pen and no keyboard.  I’m sure one of the buttons does it, but I couldn’t tell you which one.  Some things are definitely easier in keyboard mode (logging into email for one), but some things are pretty cool in tablet mode.  I did make a pretty funny "typo" when I didn’t check the handwriting-to-typed conversion thing – I was telling a friend of mine about something that some folks "loved" (a brand of skate, I think), and the tablet thought I wrote "oil".  Allrighty then, let’s all oil those skates…

Hannah’s growing up.  She’s starting to branch out and think of having things like SALAD at dinner.  Tonight I had a strawberry spinach salad at Uno’s, and after dinner Hannah thought maybe she’d order that next time.  She had to clarify that it wasn’t cooked spinach, but she may well do it.  I never thought I’d see the day.  Someone tell her to stop growing, will you??

Non-obsession over 6-year-old bodily functions to resume shortly.  Phew. 

The new camera arrived.  I need a card for it – the internal memory holds exactly 4 photos.  I do have three cute ones of the three new kitties all staring at some kitty news out the back of the newly screened back door.  Up til last night, it had a wonderful dog-sized access porthole.  Used by kitties when available – since we prefer indoor kitties it really meant we never used the screen door (but instead the full glass door).  Very funny – we weren’t sure they were entranced at the access to fresh air, or annoyed at the lack of access to the outside.  The 4th photo is of Toby’s proud product of a stint with the Easy Bake Oven today.  Let it be known that I’m sometimes tolerant of such parental torture.

Photos, therefore, to resume shortly too.

I promise, the blog won’t become one big Toby Potty blog….but an update/comment-response is in order.  Toby wet his pants today so he again lost media priviledges – apparently there was much crying again.  While I’m not positive he has the bowel control yet, I know he has the bladder control, so we’ll keep it up.  I’m willing to continue on both fronts for a few days and see how it goes.

It’d be a lot easier if there were such a thing as side-snap undies though.  To negate the need for total undressing….I could sew them but maaaaan, he’d need quite a stash of them, and it’d take me months.  I’ve thought of adapting store-bought ones, but the’d be too snug in the thigh I’m pretty sure – once slicing and losing the snap-hem.

I have a new computer at work (edited to say, yes, it’s a Tablet, I think I have linked the correct one) – I brought it home and will work from home tomorrow, I have spent the evening learning how to use the "pen" in tablet mode.  So far, using the pen is not a quick mode for me – but I’m looking forward to – yes, mapping with it.

Terry’s horse is doing well – apparently, it’s a good jumper.  It’s name is Dozer (I believe because it’s as large as a bulldozer, not because it suffers from narcolepsy).  It’s  thoroughbred Percheron (perch her on???), much like a giant shetland pony, according to Terry.  I wanna know what she perches on.  I’m pretty sure Terry is perched on the horse given the size differential.

Knitting continues.  I’m on the second orange Fleece Artist sock, and for some reason I keep dropping stitches for one row and not noticing until about an inch later.  I’m also making progress on my Clapotis, started eons ago after Rhinebeck.  I have finished one 2 ounce skein of yarn, and have a total of three to work with – two will give me a scarf that hangs to the right length but without any neck-wrapping ability.

I had fun working on incorporating some toe footwork and an opposite-direction weenie jump into my footwork on ice today.  Let me tell you, I spend LOTS of time avoiding my toe picks – to intentionally do toe stuff is bizarre.

We got news that one of Toby’s former PTs (who adopted two beautiful toddler twins from Ghana about a year ago) had a seizure a bit ago, they found a brain tumor, and she went through surgery to excise as much as possible.  She’s doing well, we are reminded of how easy it is to forget to appreciate what’s really worth appreciating in life, and we wish her and her family the best in recovery.  Another college friend has also recently narrowly avoided a heart-stopping clogged artery…Scary stuff, I tell you.  Not reserved for the elderly either.  That, or I’m older than I thought…

That’s it for this random edition.

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?  !!!