sara skates

and the kitchen sink, is how I think this post will end up.

Work seems to be calming down - I am winding down in my current position as an Institutional Researcher, and moving back to the faculty ranks as of June 30th.  Yes, that means a low-key summer.  I am really happy about this decision - while it came about due to a number of majorly stressful and awful work events involving a stolen computer and sensitive data, it’s a good move at this point in my life.  Hannah is screaming towards teen-dom at an alarming rate, and being home more when she’s a teenager?  As near as I can tell, it’s even more important than when they’re toddlers.

We have added an aquarium and fish to our mengagerie.  It started with the gifting of two betta fish, supplied in a teeny tank (divided down the middle so they saw each other but did not fight each other), where they both got progressively more lethargic and seemingly unhappy - as near as I could tell anyway not being any sort of expert about fish states of being.  Last week I started looking at Craigslist for a second-hand set up of a tank larger than an ice cream bowl but not seriously huge - nothing panned out by the end of last week so Saturday I went and got a 10-gallon tank from the fish store.  Before I could get water in it and the fish transferred over etc., Toby’s fish died…very sad timing and Toby was rather distraught.  However it did result in not needing to separate two aggressive fish, and extensive googling on what might fit in there as a community tank with one betta.

The next day, we visited the fish store again and came home with a pleco (which eats algae - it’s the craziest thing, it sucks itself along the glass), a small aquatic Dwarf African frog, and a broad vertical striped platy (a fish about the same size as the betta, which is a smaller female).  While it took a day or two for the fish to settle from the stress of transferring to a new habitat, once the heater heated the water and now that a filter has been added filtering the water - all seem pretty zippy and happy.  The betta got some new food today - she’s a picky betta (damn).  She had been spitting out the little pellets of betta food - but this morning ate about seven freeze-dried mosquito larvae (aka bloodworms, yummy).

I have no pictures yet - the tank doesn’t have a light at the moment, and it’s set in a “well” of a dry sink piece of furniture that we have - leaving it rather dark and unphotographable unless you’d like to see a grey blob of water.

Toby’s emotioanal development has been on my mind lately.  It really deserves it’s own post, and I have pieces of the story saved from various emails etc.  In short, as he nears the end of third grade, he’s struggling with coming to terms with his own reality and “limits” placed upon him with CP.  He apologizes ALL the time for really nothing - often for moments when he needs a little help doing something, often for moments when he perceives someone else’s tiredness or frustration - he takes it on as “his” fault when really 99.9 times out of 100 it has nothing to do with him.

In some ways where he’s at feels so utterly familiar to me - I remember taking on so much as “mine” growing up that really wasn’t mine.  I reacted by moving more internally and not expressing some really pretty basic needs (and it was not helped by the reality of all the moves my family made, resulting in new locations, new languages at school, building new friendships while learning new langauges, etc.).  Toby does not seem to suffer that same internalization - I am so proud of when he advocates for himself and tells us when something is bothering him (and  yes, I tell him so grin).

But the bigger picture is that we’re sussing out finding some help for him.  In many ways - it’s a developmental process - third grade is the right timing for him to be struggling through the issues of differences - he’s cognitively aware enough to process his differences in ways that he couldn’t before this point.  He started some of this “grieving” earlier this year when the school year started, and even if it’s all developmental - it doesn’t mean he needs to go through it without help and support.

We have also spent the better part of the year trying to get a wheelchair for him.  Insurance doesn’t want to pay for it b/c he can walk 20 feet in his walker (or something like that).  He CAN walk in his walker (and canes for shorter distances) but he is slow, and if we want to go to a place that has a lot of distance to walk (this local festival like the Lilac Festival; or mall which ok doesn’t happen much but sometimes you just gotta go; or even the grocery store; or etc.) - more often than not we either don’t go, or he sits on the back of his walker and we push him.  (Which is so not what the walker is designed for - while we turn it into a defacto wheelchair jeeze he just needs a wheelchair already.)  While he’d use it in school for sports and stuff, it’s not really appropriate as a school-funded piece of equipment as he needs it outside of school too.  Medicaid won’t cover it because the right wheelchair for him is an atypical choice - it’s lighter than what they’d pick (as an example).  We’re on it - we’re waiting for the final “Medicaid denial” piece of paper and then a local agency will cover it.  That it has taken SO much effort (including detailed assessments of his functioning in the Medicaid-approved wheelchair vs. the one that suits him better - tracking down a loaner version of that to do so) and that it’s not done yet is just - mind-boggling.

Related to all of that - I have an article ‘published’ up on the Exceptional Parent website - about some of our advocacy efforts in building an atypical slate of services for Toby while he was in EI (Early Intervention, from birth to age 3) and during his early elementary school years.  For now, the story is here - their “top story”.  Shortly, it’ll be moved to this url (in the “Family and Community” section of their website).  I’m pleased to finally have the story out somewhere - it’s a good story and an important one to share with other families working with designing services for their children.

I have been spinning up a storm lately.  I need to upload pictures to Flickr to get them here - but I’ve taken the pictures which really is half the battle. Knitting has taken a backseat for the moment - for now, it’s all about adding twist.  Or more likely, unwinding my own tension and putting it to good use.

Courtesy of this blog post on some work-related “larger issues” (we’re sorting though “business intelligence” decisions - at a glacier pace), I found this picture - whereupon my institutional research and fibery worlds collide:

data/sheep = story/knitting

1.  Toby funny from a few days ago:  He typically crawls down to my bed for a good-morning cuddle when he wakes up.  A few days ago, he slept in later than usual, so I was up and downstairs when he did - though I heard him so I went upstairs.  I popped him up onto the bed and jumped up myself - though, we were sorta sideways on the mattress rather than stretched out with our heads on the pillows.

Toby’s quiet for a minute and then I hear:  “Mama, how come we are in landscape mode?”

The kid entirely cracks me up!

2.  Skating competition season is upon us - I’m off to Eastern Adult Sectionals tomorrow.  I skate in one of the first events on Saturday morning - which has the bonus of being relaxed through the rest of the competition!  I only signed up for Freestyle at Sectionals - I don’t have an interp program this year, and I’ll do Solo Dance too at Adult Nationals.

Skating is going pretty well all things considered.  I have some boot issues that continue to plague me, with the added bonus of my blade “chassis” breaking a week or two ago (story on that below).  My annual winter cold-air-induced (after a cold virus) asthma has been pretty fierce this year although a new round of meds seems to be helping (Advair plus a rescue inhaler).  I’m pretty happy with where my program is at - it needs improvements but it’s getting there.

3.  My blades.  I have Jackson Ultima Matrix blades - which were recently discontinued.  In short, they have a “chassis” (part that screws to the boot, and into which you bolt the runner of hte blade), and a “runner” - the part you skate on.  I have two sets of runners as I swap them out and mail them off to be sharpened.  I noticed about a week ago - while drying my blades off - that the chassis of one skate had snapped - right in the middle, if I were to take the chassis off the boot without the runner attached?  it’d come off in two pieces.  Since this model of blades was just discontinued - Jackson scrambled a bit to find a pair to send me (they have no more, my skate shop dealt with them and they got a pair from another skate shop), they’re on their way.  The alternative would have been to wait for the new Matrix II blades - which will be on the market in a few months - BUT they’re a very different model as they don’t have the interchangable runners and I’d lose my mail-to-sharpen plan.  I am thrilled to have a new pair of chassis coming my way - Kudos to Jackson and the Figure Skating Boutique for such excellent customer service.

4.  My blog.  I think I finally decided that really?  If I only blog once a month?  That’s ok.  It’s really not worth feeling guilty about yanno?

5.  Hannah is awesome.  She has recently discovered social computing for the pre-teen set - Warriors roleplay forums.  Cats and social stuff - what’s not to like?

She has also really picked up the ball and started doing some household chores - folding laundry and doing the dishwasher - without a lot of complaining. I thank her daily - it’s entirely awesome.

6.  Knitting.  I have about a sleeve and a half left on a sweater, I have started 3 or 4 new pairs of socks, I’m working on a pair of mittens (I think rather than socks this summer?  I’m knitting mittens.  It gets cold here in the winter), and a scarf.  NO doubt there are other hibernating projects around the house.

7. That concludes this random edition!

This video was linked in Toby’s online playgroup board (a group of women who were all due the same month/year - 8.5 years later, the group persists - which is pretty awesome in it’s own right).  I think it’s a really nice way to start the year - looking at seasonal changes.  This guy took a picture every day for a year - at the same spot - and then put the stills all together into a 40 second “video”.

I tried but failed to embed the video - here’s a link:  Eirik Solheim

I have much to write, and was hoping to write some of it this week while on break.  Unfortunately, much *much* computer time was spent getting rid of a virus on the home desktop.  What a total PITA.  What finally worked was using a PrevX product - a malware scanner and removing tool.  I had been using McAfee antivirus software, but it got compromised with the virus and it was loading upon startup, but getting disabled within seconds and not allowing me to re-enable it.  I removed it and installed AVG antivirus software - which was not compromised - and it found a few trojans and viruses that McAfee hadn’t found.  I googled some of the names of the trojans, and came across the Prevx site.  I was initially intrigued by their graphic showing how much “more” they found than various other antivirus packages, and by some of the technical details explaining that it works differently than most antivirus software - rather than responding to specific named malware, it focuses on virusey behavior and thus targets the malware often before it’s even “named” and recognized.  Long story short (sorta, I have already gone on at great length), it identified over 35 additional viruses/trojans/malware and disabled them in short order.  The free download identifies what’s on your system; the $25-$30 fee gets you the removal tool.  It’s entirely worth it in my opinion.

Other news that I’ll touch on for the moment - in no particular order.

The holidays were good - it’s been great to have 2 weeks home with the kids.  Presents were numerous, the kids are happy, Hannah had many playdates; Toby had some; plus he and I did a lot of cooking.  I have embarked on a “minor” home reno plan - removing a hall closet, installing a boot bench and coat hooks instead for storage, and widening the doorway from the hallway to the den so that Toby can fit through with his walker.  Of course I thought I’d finish it while off on winter break.  Of course it’s taking way longer than that.  By removing the closet walls, there were “holes” in the floor tiling - I decided to remove the closet floor tiles add a border as a transition, and then matching new tiles.  Removing the closet tiles was a piece of cake - they popped right up with minimal effort.  Three tiles from the hallway need to be removed or at least cut down - to make room for the border - rather than being shaped to surround the former walls.  It took me two hours to get one of the three removed today - and involved eventually using a sledgehammer.  I may try using a circular saw with a tile blade on it - a messy somewhat dangerous job with flying shards of porceline - but, there are two freaking tiles to cut down (or remove) and however fun it is to get out some anger and aggression with a sledgehammer?  I don’t wanna.

Skating is gearing up for Adult Sectionals and Nationals again.  Sectionals are in North Carolina at my friend Amy’s rink - I’m very excited about returning there and spending some time with her.  The last time it was there was my first Sectionals experience - and I skated at the Silver level at that time (I have since moved up a level).  Moreover, it’s a great rink and one of my favorite coaches in the world is there - so I’ll stay an extra day or two and work with her.

Work persists at being pretty stressful, and upon return (break is over as of tomorrow) I need to have some difficult conversations and initiate some changes.  More details as they unfold - suffice it to say I am not happy with how things have unfolded due to the computer security issues from earlier this fall.

Home life is ok, the kids continue to sort through issues of their moms separating, while still all mostly living together (for lots of reasons).  It’s confusing and conflicting at times, it works much of the time, it’s difficult (muchly) some of the time.  Ultimately their needs continue to drive most of my decisions which is exactly how it should be.

Knitting has been happening at great speed.  Hannah has a new dragon scarf, Jill has a new scarf from yarn she designed at http://yarniapdx.com/in Portland (OR), I have a new sweater and another more than halfway done; I also have a new hat; I have a stranded mitten that turned out too small for even Hannah so I need to rip and restart it; and a pair of socks on the way.  No doubt I have left out a project or two.  As usual, knitting helps in so many ways - I partially feel like I’m knitting myself back together lately

Happy new year to all - and honestly?  I think my only resolution is to come to terms with how to continue to post sporadically but yet meaningfully.  Well, there are some other goals for the year - mostly related to things I have summarized above

I spent much of this weekend tossing the stash and cataloguing what was in the wool closet on Ravelry (my Rav name:  saraskates, duh).  I haven’t gotten to much of the sock yarn yet but ahem, I have a lot of wool.

I knit my way through a slew of socks this summer.  I think this next year I’ll try to make a dent in the stash by knitting lots of sweaters.  They use up way more yarn in terms of volume than socks do.

Toby fell the other night - out of his dining room chair.  He has slid out of it before - but this time he wacked his back on a piece of wood and it hurt - two days later, he’s still sore.  He was crying and I was cuddling him and comforting him.  He had started to calm down and just “be” in the cuddle - when he said:

“Mama, you know what would made me feel a little better?  A trip to the spa.”

I answered in the affirmative and came up with a slew of suggestions about things we could do - nice smelling stuff in the shower, a massage, yummy lotion, etc.  He then asked:

“And can I have the pickles on my eyes???”

Oh. My. Gosh.  Too funny.  It took me a second but then I queried did he mean cucumbers?  Yes, absolutely that’s what he meant.

And I’m thinking a spa experience is on our agenda for some weekend

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

It’s difficult, but every now and then my two passions meet.

From this designer, we have:

I adore the coy skating position!

Awesome, eh?

The dust is still settling, but welcome to my new blog home.  I have plans - including setting up a page of information about the nearly-lost art of figure skating school figures and creative figures.

Did you vote today?  If not, get thee to your polling station.  If so, yay.

Manon the sweater is on the blocking board - pictures of an FO when it’s dry!