Minnesota!

Wow, just great being home for the holidays. Temperatures ranging from -8C to 1C, snowbanks piled up to five feet high everywhere. Glistening white snow, and all the houses of my friends and families that aren't tweaked in the least for a boy with CP. Wow. I didn't realize just how much Roxy and I have planned everything around Blue and his "situation."
So, to make it a little easier for us, we used a kaboodle of our 'Avion' points to pay for part of the hotel; and here we are on night 3 of 11 in a small, fully furnished hotel. I must say, the things we're learned over the years about food prep, facilitated movement, and communication; it all comes into play now almost somewhat desperately.
It was most interesting to see my nieces stand respectfully around, watching Blue sitting on my lap as if he were some fragile creature. Nobody really loosened up until I began rolling about in the living room a little with Blue. What can a guy do? Last time we visited without Blue,making the impression that we can run, jump, and play about like a typical Aunt or Uncle. This time, we're with Blue; and everyone has to kind of start over again re-learning who he is and how we is with him. Very interesting. I probably shouldn't even be blogging here, because how that process is working out is something I can't really explain yet.
All I know is that it filled me with peace and happiness driving my Dad's mini-van back to the hotel and looking across so many snow-covered yards to see Christmas trees lit up and sparkling in the front windows of so many cozy homes. Just having all three of us there to enjoy it was/is wonderful. Ahhh. Home.

Goldfish Again

Holy smokes, would you ever think your friendly, little, "community" tank would become a place of predation? No. But the goldfish, being the biggest fish in the tank, and hungry all the time, began eating the other littler fish. Ha! Am I surprised? Not a whit. IF the goldfish serves as a metaphor for conductive education (because it survived every other fish as the tank cycled through its various concentrations of biology)then what else would one expect it to do?

Being surrounded by a lot of bureacratic brown-nosers and wimps extraordinaires - the goldfish probably said to itself, "Right. Well, if this is as far they can go, I shall eat them." Seems fair to me. But, what must I do as the keeper of these stupid fish? After three had been eaten, I had to do something, and in true form, there's no way I am going to give over the goldfish. I bought a "divider." The goldfish remains in the same tank with the others, but there is a big plastic, permeable wall keeping it away from the other fish.

Maybe I should follow through and get rid of all the other fancy, wimpy, loser fish and give the whole tank to the goldfish. If it is to serve as an allegory for my journey with CE, that would be the way to do it. On the other fin, if it is to serve as an allegory for this odd world in which I swim, I ought to rename all the other animals after the various 'therapists' involved in my son's life. And sadly, I continue to protect them from the consuming power of conductive education because politics demands no less. Humiliation, separation, and loss: but none of it matters in the end because my boy is sleeping peacefully in my arms during those afternoon naps. My God, if Anne-Christiane wasn't here, I'd go nuts. Truly, round-the-bend, bonkers: nuts.

Gaps

Just like the blue waves rolling in on the shores; there are gaps between waves. For me and my family, we have periods where there isn't much to "report." Blue is doing his thing, we are doing our things, there's nothing of import to pass along. I think maybe that is good news; you know, like the saying, "No news is good news."

No, I can't afford, nor am I going to the big, happy CE conference. There's nothing earth-shaking going on out here, but wait, there are many wonderful small, inroads being made by Anne Wittig, inroads of which I am so proud and happy. The quiet things are happening. The few families, people here and there around our community are shaking off the concrete of hopelessness and basking in Anne's warm smile, her humour, her brilliant curiosity. Yes, it is right and good to say that there is truly some wonderful conductive stuff going on out here now. Anne and I will soon begin laying out the offerings for spring break and for the summer program. Again, in these ventures, I will be busy with other things; but deep deep down I'm just breathing easier and happy to see Anne here and all the other folks whose names - new to me - whom I haven't even met. I couldn't have dreamed it any better than this. She's not busting her ass until the soon-to-return-home airplane trip. She's relaxed, living here, making a splendid work of art; and best of all Chris and I will go play hockey tomorrow night as if nothing out of the ordinary is happening. Gotta love Canada sometimes. I had gotten so tired of the 'excitement' that typically surrounded conductive education.

So, yeah; I think that's a blog entry.

A Blurb for the CP Association of B.C. . . .

For my family, as we live and love with our child who has cerebral palsy, the mystery has always been how to start learning and working in the area of his abilities. Conductors have shown my family not only WHAT his abilities could be, but HOW to get him actually developing those abilities. It’s very difficult to describe conductive education; but the results are easy to describe. He’s on his feet more. He’s taking part in every decision throughout his day. He’s willing and happy to try to use his hands and arms more. He knows that he has a part to do in every activity. He has more fun doing simple things. He’s involved and learning to do things that his regular team of professionals hasn’t so much as suggested in all his 13 years.

This means he has more belief in himself. I have more belief in myself, him, and my entire family. With CE we’ve moved into new, unexplored areas; and we’re still learning, every day. I love it because everyone in my house is learning, from every little interaction and activity every day. (At least the potential to learn is there, depending on energy levels and such) Because my son knows that this growing and learning and trying is happening all the time, he goes along with it. He always has, because early on we got some effective training through conductors. Come to think of it, it has a lot to do with simply setting the tone; for everyone. I have often felt that tone has been set far too low and far too ‘disabled’ for my boy with his usual workers. As a result, there are some glorious, happy differences; achievable only with the open-minded, smiling, curious approach I have come to know as conductive education. Over the last ten years, I have met a lot of B.C. families equally wonderstruck at the simple efficacy of conductive education; when they had the rare opportunity to try it out. This effective and amazing approach is now no longer a rare beast. There is a conductor here to stay and she needs your support. The whole idea of CE needs support; get involved.

Parents.

Having had my niece and nephew over last night for a "sleepover," it comes home more poignantly tonight how large the effect of a parent is in a child's life. I love my brother and sister, and I am honoured that they'd trust us to have their kids for a night and a day. In the afterglow of their visit, I see how formative a parent's perspective can be. The particular differences between us and the parents of these children became glaringly apparent to the niece and nephew this weekend. They discovered the chasm of contradiction between the contents of our fridge and theirs. These differences are usual; but for a youngster, it's somewhat more revelatory.

What WAS revelatory to me was seeing how an "able-bodied" child can be so inflexible in the mind. "I don't like [insert any normal food here]," . . .

What? My son doesn't even TASTE food, much less EAT it with his mouth! Argh, and here sits a 'normal' child using the mouth to not only deny the existence of every vegetable on the planet, but also TELLING me so. I found new levels of patience I didn't know I had. When we go to the trouble of making home-made waffles, and the kid tells me, "I want pancakes," well holy smokes, I wanted to hand him the yellow pages and say, "Find the local IHOP and call a cab."

Is this how 'real' kids act? Lord, it makes me wonder even more what is going on in my son's head! If nothing else, conductors have taught me to pay attention to the cues from a kid and respond to that; instead of to what I hope they are trying to say. Now that my boy is having a birthday, I feel almost allergic to having any other kids over to celebrate with him. They only gripe about things he never experiences. Drives me bonkers; totally bonkers.

Goldfish. . .

Well, so, we set up an aquarium in Blue's room. During the "cycling" period when all the nitrates, phosphates, lactates, concubites, and Hittites were changing places in the population rankings; 8of 9 goldfish perished. The survivor has become a favorite creature of my better 3/4's and she has refused to allow me to return this hardy individual to the fish store. (They let you bring fish back to trade them in for more fashionable fins.)Apparently, the goldfish were meant to prepare the water for the more socially-beloved fish. Anyway, we have this one left; and he's somewhat of a pig. Eating everything, plants included, and getting bigger by the mouthful.

As an 'aquarist,' one learns that his status as "keeper of the tank" isn't as God-like as it seemed from the start. When everybody dies, and the only thing you can do about it is run back to the fish store and do exactly what they tell you [read 'sell you']; well the truth has come home to roost, baby.

And in similar fashion, the conductor bursts into your life all smiles and with her own unique accent; and we learn again how much we have to learn. Thank goodness! My mental aquarium has lost a few fish to this point. I need someone to toss me a flake!

Then we [Anne & I] meet another 'CP parent' in Seattle the other day ago. She has only recently learned that there is a conductor lurking in her city; so we put them onto each other. Hate to say so, but it's no surprise to hear this parent tell me, "He's learned more from an hour and a half with the conductor than in all of his therapeutic life." How crazy, that a phrase like that is actually old hat. Maybe conductive education is like that last, tough goldfish who stood the test and still stands.

Just a reminder, conductive education is moving again in B.C. Check the link on my blog list for Moving Ahead Conductive Consulting. Zsipp-Zsupp!

There IS conductive education in B.C. - go to Anna's link: open for business!

http://movingaheadconductiveconsulting.blogspot.com/


Anna's here: living in Surrey for the present. She has wheels, a phone, a blog site, and a little brother with CP! She's the best.(And remember, she's German, so it's Anna like the Spanish speaker would say, 'Ana.')

The answer, my friend, is blowing in the wind; . . .

Okay, so I see my boy really interested in a set of buttons. It's a toy for the really young; letters of the alphabet, push A, it says, "A." Simple. Not good enough for his brain. So, I hear about a keyboard that can be adapted for 2 buttons, 4 buttons, 8, and so on. Intellikeys, it's called. I send a message to the folks who have contacts; equipment, therapists, etc. I say, "Do you have one of these I could give a try? Can you tell me where I can buy one?"

What's the answer? Get me a referral, let's do an assessment; see what might work for him. Get the SLP involved, e t e c e t e r a. . .Find out what sort of communication thing-a-ma-bobs would be best for him. If I brought my car in for an oil change,and they told me to go get a referral from a mechanic to see what I really needed; well, you might imagine how that would transpire.

There is a word for this: bureaucrap.

ten long years, and five little days. . .

After a whirlwind visit to the family in Minnesota, and five days playing with 'able-bodied' nieces, the familiar shock of my "CP child" comes as somewhat of a welcome rest. Everything is slower and odd, as usual, but his smile and his laugh and his soldiering on into every little task is inspiring all over again.

The magic-bullet [blender] finally lost its momentum and has to be replaced, so now we're looking into the really 'spensive machine touted as the premier G-tube feeder: the Vita-mix. I had to wrangle them to let me try it before I buy it. They will do so, and not charge me for the shipping; a good sign from a reasonable business.

Blue has six fish in his tank now, and there's room for plenty more. We were sure to get the blue-est one available; a gourami. Now he has, one fish, two fish, pepper fish, blue fish! Now I have to find a way to relocate the aquarium closer to his bed so he can watch them more closely. The original location across the room and on top of the dresser is great for us 'able-bodied', eye-level mutants; but for him the view is less captivating. Hmm,. . 102 litres of water, about 220 pounds? Going to have to get Troy and Jan and Sergio and Fingers involved here.. .

And of course, in other news, Anne-Cristiane Wittig will be arriving by driving from Manitoba this weekend to begin her new career as the Lower Mainland's only resident conductor! Zsipp-Zsupp indeed! Do the British trained conductors use Hungarian much?

Silence is golden, and duct tape is silver!

I'm so excited about the next step here, a conductor actually MOVING to the Lower Mainland (Vancouver area), that I feel somewhat gagged into silence. Over the years, I've learned there are plenty of people and organizations who like to have conductive education velcroed to their names; but once it becomes clear how much work and love is involved, well, fads fade.

I have also found that cerebral palsy (or insert your favorite motor disorder here!) does not fade. (That's my newfound acceptance and awareness and [big yawn] action!) It's like being tied to a railroad car but given the blessed permission to pull it with your arms and legs instead of just your teeth!

I have also learned that researching, talking, marketting, blogging, blah blah blah about conductive education is anti-climactic at best. The real magic happens in that tiny little world between the konductor, the kid, and the kparent. I get little bits of that magic every day as Blue and I continually discover different ways to achieve the same goals. Explaining it matters only to the esoteric few; which is good in some ways. After all, who wants the pressure of the attention of curious consumers of "news" peering into your fishbowl to see if a fish can really use a bicycle? No thanks!!

So, as the blessed moment draws nearer, our very own conductor coming here to stay and pay taxes with us; I find myself having less and less to say. She's going to build something and like my Dad always said: "You want to help? Get out of the way."

the rut thing to say. . .

Like any dork who thinks he knows his stuff, I have found myself becoming stale. It's gotten so repetitive with my boy, that I have little motivation to try new things. I am forgetting to speak more to him; to ask him to vocalize. I notice when we're 'struggling' to make a transfer in or out of the van that I am doing too much work again, and he's relying on me to do it. Usually all it takes is one-deep breath and a moment's concentration to see what it is I must say to him. Like "put your foot down", "stand up", or "just relax". A touch, a word, a smile; very little does the trick, but I've become so entrenched in the repetitions, the maintenance, that it begins to look like a life's unchanging routine. This is not good.
Hence, with a little input, and I do mean a little; one can 'freshen' up a great many tasks. (So here we go . .) If one had access to a conductor on a more regular, and less intense, basis than say, a summer 'camp;' well, there'd be a lot more humanity to it I say. Participating in a summer session of six to eight weeks was really great the first and second times; but holy smokes, can I be honest?! Who in the world is happy to give up their summer ( a precious and wonderful time in B.C.) for a 5-hour learning workshop, Monday to Friday? Parents, of course, and let me add, dissatisfied parents; hopeless parents; desperate parents. Well, now that a bevy of us curious folks have had the curiousity somewhat attended to, it's time to stop acting like novices entering some weird monastery; hiding our secret methods from a misunderstanding public. Bollocks. (Of course, bollocks is hardly a Canadian term; but it sounds so much less offensive than well, you know.)
Therefore, I think, organizations that focus on starting a somewhat exclusive program, apart from already established institutions are not necessarily serving the families who need conductive education. For a time, for a cost, and in a proprietary way, they are definitely serving them; but my list of non-returning families is a lot longer than my list of steady clients. Why? Cost, of course, and this "magical-mystery" garbage that often makes practitioners of CE act like 'nobody wuvs me.' I cry, alas. Give me a break.
If it's going to work, it has to not only work; it has to FIT. It should start in the home, then seep into the normal, everyday school life. Working from the inside; where it's already a given that we're all here for the kids, and oh guess what? The kids are here too. Hmm, I rather like that.

Out of the goldfish bowl indeed. . .

Mr. Sutton is right. Talking of CE outside of CE circles is rather important. I used to blather about it like a 'natural' when I first became involved with it. Now I don't even mention it until the conversation has moved along to a point where it might seem logical to explain "where I learned this stuff." 'This stuff' is utterly useless to me as a parent if it's not translatable, applicable, USEFUL in the real world. Because the things Blue and I have learned from CE are pragmatic and helpful in our family life, well, because of that I have kept up what I can. I wouldn't be "blogging" about it these ten years later if it hadn't somehow become useful and worthwhile.

Even today Blue and I were at the Sunnyhill Centre for Children in Vancouver. We were there to see Nicole, who for years has been seeing to his wheelchair and such gear; that it fits, works, functions. She casually remarked that I "handle him so well." This really made my day. There was no need to blather on and on about CE; though I did mention that British Columbia's 2nd resident conductor ever is coming at the end of the summer. Nicole smiled and enjoyed this news with me. It was no big deal, and we moved on to other topics; but it showed me that it's not always a battle. People see the sense in something and simple as that, they don't mind its presence.

Conductive education has always had that immediate sort of "curb appeal." Families who are confused, desperate, scared, and weary of hearing bad news are buoyed up by CE; not because it's CE, but because it hits home and matters right away in their every day lives. At least, for a great many it does.

Setting something straight. . .

Andrew's latest blog has me thinking, and Rony's ideas too. In British Columbia, the most beautiful place on Earth, the home of the 2010 Winter Olympics, the great, wet coast, etc. . . . well, there isn't really much conductive education at present. What there is, is a few families. I know them. I won't name names, but what we have is NOTHING AT PRESENT. I am not offering a service from which I make a living. It's not my business; it's my 'hobby.' (I think obsession is more likely the truth.)

For several years, I have had families contacting me to inquire about our CE program. Goodness! There's only a CE program for 3 reasons:
- a few of us choose to kitty up for it,
- a splendid, community-oriented, non-profit society (Purpose, in New Westminster) has supported our efforts,
- we've been able to pay the occasional conductor for short-term contracts.

All this is changing now, because the conductor coming will be living here and building a business. Do you think this is going to be some sort of magical, easy service that will be ready for those with loads of money? I know that people don't have a lot of cash for this. I also know that EDUCATION shouldn't be reserved for those with money. I also know that it's an insult to sell CE to people who want it at high prices, after school and on holidays.

There are a lot of wonderful things happening, but we need to hear from people. I would bet that the Purpose CE program has been the most cost-efficient CE program in the world. Nonetheless, that isn't satisfactory. It needs to be happening through schools too. That will not happen without the voice, the request, and the action of families and individuals looking for that something different.

Speak up.

B.C. conductive education services starting up again soon, check the Purpose website

Since, October 2000, I have been organizing bits and pieces of CE in B.C. through the Purpose Society. Here is the link to our webpage:

http://www.purposesociety.org/conductive/conded.html

If anyone is interested in setting up some CE time, be it privately, in a group, or in one of our longer programs, or in the school, or anywhere or anyone you'd like to meet and work with the conductor; let me know.


I look forward to hearing from folks. Let's build this program!

You're soaking in it.

No, I didn't relieve myself in my Dickies; though I remember it being really nice and warm for the first minute or so. Crassitude aside, I also remember there was a cheesy advertisement (is there any other kind) on the TV years ago for a dish soap: palmolive. One of the traits of the soap they were selling was the notion that it was so wonderful that a manicurist might dare to soak her clients' hands in it before she got down to the dirty work. After suggesting to her thoroughly unsuspecting television hand-soakers that they might do something so preposterous, "Madge" gently shattered their universes with the horrid news that: yes, you're soaking in it! Aha, what to do but accept this daring foray into unorthodoxy?

Well, the other day ago, I had that annual event in my house occur where the PT and OT and any other T who has T time in her (aren't they all women?) agenda come visit our little home to see how kosher we can be with therapeutical interactive conjunctivitis mechano-troublesome-equipment stuff. Well as a 'devotee' of conductive education, I tend to be allergic to the accoutrements and more rabidly fascinated in the organic machinery that arrived with Blue: namely him.
So, anyways, I showed 'em how we stand up, walk with Dad in front and in back, use large rice-filled denim legs for positioning and such, how to use the you-walk-I-steer method and what not; and before the time was T'd up everyone seemed happy and that was that. I didn't say the "C" word once, nor the "E" word either. Why bother? Nobody wants to make a wheel when there are already so many people trying to reinvent the square. So, I squared up with them, but I took a page from Madge and soaked them in it.

now the only complaint would be . . .

that I have nothing to complain about! After so many years of "voice in the wilderness," or "pissing into the wind" this new mindset of GET BUSY is fantastic.
On principle, I stopped organizing little fly-in sessions about 5 years ago. I'd been burned once (by a very well-known Canadian charitable service organization, which I won't name here; oh, modesty prevents it) and one gets very tired of watching conductors leave and families all wondering when is next. So, I had stopped altogther.
Then Zsuzsi sent me an e-mail. A real-live conductor living in Seattle?! So close! And she was what? Working as a nanny? HOly smokes, talk about hiring an electrician to change a light bulb! So, she was available to actually take up my half-time job offer spread liberally over six months. It went very well, and just like that we were somewhat re-ignited. A local school board took interest. Proposals were begun, but nothing really happened because I am still waiting on the proposal and Zsuzsi got married and settled down in the Seattle area. Hmph. This was all still hopes and prayers until the conductor who we won't name yet decided to just come out here and go for it him/herself; knowing that I and all "my families" are behind him / her. Every possible family/client into the future is there for him/her as well.
This blog then is to somehow say that I don't really know what else to blog about now; but I will think of something.

OH Boy, Oh boy, Oh boyo boy, OH BOY!!!

Conductor's coming! To stay! There IS a God in heaven. Thank you thank you thank you to Andrew, Norman, Susie and all the great folks who cared enough to give me a kick in the butt and a pat on the back when I needed it. Had we not been blogging; this wouldn't be happening. I feel like a kid at Christmas time!

Time to start planning CE sessions! (And a host of other plans and ideas.)

food: not just for eating anymore. . .

golly, but that corner sitting stuff has been useful, but try holding your kid in the bloody corner for 10 minutes at a time. Your, well, MY wrists are starting to hurt. (It's likely just the beginnings of a little arthritis in my late 40's)
So, what is to be done? Well, go to the supermarket and drop 50 bucks on two bags of rice; round or about 18 kilograms each. Then go to your local 2nd-hand clothing store and buy 3 pair of jeans without holes in the legs. Then go to your kid's grandad who has an upholstery sewing machine. (Come to think of it, you could probably go to any local upholsterer. Be sure to bring your adorable kid in her/his wheelchair to elicit the maximum amount of co-operation. Sympathy is okay too, I suppose. If neither appears, PAY the upholsterer to sew the jeans closed.) Anyway, ya gotta cut the legs off the pants first. Bring the rice with you. After one end is sewed closed, add the rice; then ask the nice upholstery expert to fold and sew the other end closed. You help them hold it as it goes through the sewing machine. Now, when you sit your beautiful child in the corner to give their hamstrings a more co-operative relationship with the rest of the legs, you can read a book for them or dance a jig while they sit comfy and stable in the corner; hopefully laughing at you.

Tooth Brushing. . . .

Yeah, right whatever, so your kid is NOT disabled. So take them to soccer/football practice while I explain a few things. Okay, so brushing teeth: what a headache! Holding the kid who stands intermittently at the sink. That works: intermittently, until he does the half crumple and bangs his knees on that splendid vanity with the splendid marble. The stupid driveway is equally splendid for the task at hand.

Here's what we've arrived at. . . (see picture) We help Blue to kneel at the lip of the shower, and then he bears his weight on his knees and his chest; allowing us to relax and have a good brushing. This has added a great deal of pleasure and time to a task that was becoming something that it seemed we ought to stop for its precarious possibilities. Roxy thinks I'm a little nuts, but she's in there like a dirty shirt helping to brush.

Pigs

Thank God for conductive education because, without it,this morning's preparations for school would have been impossible. Why? My back, of course! That little muscle attacked me again; the one about kidney level. It tweaks, tightens, and tries to lay me out on the floor for the day. Roxy almost didn't go to work because I was so pathetically bound up.

ANYWAY, some good, hard, back-pain drugs and a few stretches later; I was mobile enough to at least get up and move around. But then there's Blue; waiting for me to help him get up, hit the bathroom, be fed, dressed, loaded into the van and make the trip to school some 14 km distant. That seemed a daunting task today; but it went off well, only because Blue is accustomed to using his legs, sitting and standing with a modicum of assistance, and carrying his own weight in walking.

I gladly admit that these skills would have never occurred as something to be taken for granted if he & I hadn't started learning it in 2000. That only happened because a splendid Hungarian woman, Gyongyi Schweigert, moved to Kelowna, B.C. when she did. We couldn't have afforded to bring my son to a CE program somewhere else. The proximity of the conductor, that simple thing we know as "availability" was the only requirement.

I sadly admit that not one of Blue's B.C. professionals have suggested, even once in 12 years, that the kid should actually learn to walk. Keep that bar nice and low, otherwise some kid with CP is going to trip over it.

ONE RESIDENT CONDUCTOR in the Lower Mainland (the suburban Vancouver area) will do amazing things. This I know. We just need one here to live, work, and build on what a handful of families have garnered from temporary programs.

My boy hasn't been enrolled in a formal CE program since 2003; but the time we had with a conductor up to that point was all we needed to lay out a useful foundation. Here it is, seven years later, saving my bacon. Well, technically, Blue saved my bacon; because he was able to help himself. Of course, that would be Canadian bacon; but I'm sure pigs are pigs the world round.

Still here, just want to say that. . .

And still waiting for the next step of our project to lurch into life. Dr. Frankenstein had it easier than he thought. And my boy, my Bluetiful boy awaits for some play time. See ya!

Speleen test

My son is 'integrated' into his school classroom. Hmmm, sounds rather like a piece of equipment; bolted onto a machine. It's old news that he is 'integrated' into his school; but every once in a while it just hits me again how bloody low the bar is set for him. His little log book from the classroom aide reports that his task at school today was to give the spelling words to the other kids for a spelling test. THis means that someone else recorded the words into a computer, he hits his head on the button (I think, or maybe they held his hand and hit the button with his hand) and the word is blurted out for the OTHER STUDENTS to do their chores. Holy smokes, is that what my boy is worth in the classroom? He helps the other kids practice spelling, yet noone is asking him to try to speak, or use his hands? Only conductors have touched that path with him. Sigh. I could just pull my hair out, but then my hair wouldn't be 'integrated' with my scalp anymore. And my goodness, what would the ears and forehead think? Scandalous. Just plane skandullis.

The Mighty Mighty Bosstones

http://www.youtube.com/watch?v=Xol2MM_PCTU Sometimes, modern music hits it on the head; I guess they do so for everyone now and then. These guys from Boston, the "Bosstones" the Mighty Mighty Bosstones wrote this number, "The Impression that I Get" and it hits me right there. Great song. Just the impression that I get.

Think I missed a moment. . .

So there we were yesterday at church. Blue and I were returning to Roxy and our wooden bench. Out in the hallway area, I was scooting along in front of him on my custom-made 'scooter stool.' He was stepping nicely. I was helping him shift his weight. Lo and behold, here comes a group of children from their mini-service on their way back to their parents. Well, as is usual, all the children stared, silent, at Blue and I making our way. I have come to learn to ignore these stares. Not much I can do about it, and I have to concentrate on Blue anyway. But this time, one of the church ladies had the smarts to say, "He's practicing walking. Good job. You're doing great."

This so confused me that I didn't look or say anything, but for the first time in years it seemed that someone broke the silence with music. It was a prime opportunity to say at least thanks, or something; but the callous in my brain is too thick.

I'm going to have to find that lady and say something. I didn't even think to look at Blue's face to see if he was proud or happy about the remark. I was just watching his legs and torso as always: step, straighten, shift. Step, straighten, sheesh!

Islands.

There are certain groups of folks whose status never changes in my life: old friends, family of course, and my fellow CE parents. It doesn't matter how long it's been; we can always understand each other. I recently had the great pleasure of inviting one of my CE friends to come play hockey with my Saturday night hockey crowd. He was available, and he came to score a whole bunch of goals as we looked on enviously.

Of course, afterward is the best time; and we discovered that neither of us has given up an inch (or a centimetre as it were, in Canada) in the battle to keep conductivity alive for our boys. There's a tonne of respect in that exchange in that stinky room with hockey equipment piled in the bags and a cold barley sandwich shared among friends.

Sure, the olympics are starting next week; but we're always thinking conductive education. Oh, Canada. . . we'll just see.

To blog or to pee, that is the drizzle of my drift.

There is so little happening out here for CE (at least in my world) that I don't know what in the heck to say sometimes. Is 'blogging worth it? I think yes, when I read Susie Mallet's story of the "Littlie" in the washroom. Andrew has a pretty good story somewhat approximating the washroom as well. Hey, now there's an idea. Perhaps blogging about the washroom is just the thing to do. How about this. There is a large .... aww, nevermind. The thought was completely lost because my son (who I thought was having a nap) called to me, and I discovered that he needed to go "have a whiz." Thus ends my bathroom story for the day. Next, he wants to go to his ladder and do 'stand-uppies.' (Or at least he smiled at the suggestion to do so.) 'Stand-uppies' are very specialized activities only understood by specialists who specialize in specialities. They are impossible to explain here.

Last night's entertainment...

Along the lines of reinvent and reuse, I had the fun job last night of rearranging a few straps, buckles, and solid metal braces in my boy's specially-adapted van. The objective was to make space for his comfy car seat and a few other accoutrements as well as having the ramp opened up for the wheelchair. Now Blue has the option to walk up the ramp himself and climb into his car seat; his wheelchair being rolled in after, empty. I find it's more and more interesting as the years go by; reason being that it's not simply a new idea, but rather an old habit being reworked and brought forward into the new elements of Blue's day-to-day life.
He will have to see again that there are several ways to get into his van. He will be invited to choose the way he wants. Roxy and I (and Jesusa, his "worker") all have the opportunity now to enjoy sharing this learning and choosing with him. Keeping him on his feet, encouraging him to exercise and participate; it's not our job as caregivers. It's a family venture shared by ALL of us as learners and inventors. Children playing a new game each day.

Haiti, Lizzie, and Darcy.

I have a little photo on my blog here, captioned,"Lizzie on the up and up." The conductor is Zsuzsanna Balogh of Hungary; the lady on the other side of the ladder is a B.C. resident, from Saskatchewan that glorious prairie province that creates Canada's heartiest folks. Darcy Schille is a Canadian-trained nurse who adopted Lizzie from an orphanage in Haiti. That's right, Haiti. And this amazing woman sought out CE for Lizzie after Lizzie joined her family in Canada. Turns out Lizzie was part of an organization called "God's Littlest Angels" in Haiti. That is where Roxy and I are going to donate some cash toward Haiti's rebuilding. Darcy, Lizzie and a bunch of other stupendous persons I have had the honour of meeting keep the fires burning for me out here on the rainy west coast.

Crawl spaces and other such crap.

Last night, while I was clearing out my tool room; I finally decided that I was probably not going to begin using the expensive, plastic commode chair that was ceremoniously foisted upon me by a well-meaning therapist last Autumn. The particular therapist who had the commode delivered to our house was so intent upon providing us with this wondrous piece of helpfulness that she even arranged the financing and payment.
So,the thing was delivered; several years after Blue has been toilet-trained in my household. I tried it, but the "footrest" is a flimsy plastic ledge that will not hold his weight. Thereby, he cannot step up into the thing. The straps and all their velcro take longer to put in place than the reason he is being strapped in in the first place. And the best part is that the thing won't fit in my washroom over the toilet. Thus, something that requires a ceiling-mounted lift, and a renovation in the house; has gone the way of no-thanks.
I understand very well that many persons with CP cannot bear their weight. I also understand that the parents of these people (like me) aren't getting any younger; but my particular son can still bear his weight and step around the house. Why would I, or ANY parent of a boy like him, begin using machines to do one of the few things he can do for himself? Because I have a plastic contraption with velcro straps onto which I can winch him, I suppose. Not on my watch.
That`s what conductive education did for my family. It taught my son and me and Roxy how to function in a normal house. So, last night I opened the trap door on my back deck and wrestled the commode into the dry, dusty crawl space. And that is something about which neither I nor my son give a crap.

kind of weird; but I suppose I should be accustomed to it.

One thing the conductors never told me was that a great number of professionals would be ignoring things I do with my son because they had no idea that he could perform some tasks without their cumbersome expensive equipment.
Just this year, it was - behold - finally time to start toilet-training Blue. Some of his therapists happily delivered a shiny, new, plastic commode to my home. Thanks to the absurdly unsystematic appearance of CE in our life nine years ago Blue and I began learning how to use the toilet; which, incidentally included the use of his hands, his legs, his brain, and something to hold if such a thing was available.
Is it time for a garage sale?

impatience, irreverence, and indestructibility?

I've been hoping, grinding, grumping, and whining for conductive education out here in the dampness since 2000. I've gone through many phases: nominal success, outright enthusiasm, serious hopefulness, abject despair, "back burnering", and tonnes of looking into the heavens as professionals roll their eyes and smile as they look through me. The only thing that has kept me going is meeting a handful of parents who, like me, have been encouraged by the few things they learn and continue to do only because of conductive education.
I'm at the place today where, despite myself and a thousands reasons to give it up, conductive education is still the only thing I can say is eminently useful for my son and me. It kind of pisses me off, that this one thing, this ONE THING is the only thing that seems impossible to get started out here. Maybe it's because I'm just a dorky Dad who has no time, and no expertise to do it myself. Maybe it's because the system is all locked up and resistant. Lord, some days I feel just rotten about it all. I ask myself, "Why bother?" Then I go to my boy, my gorgeous Bambo boy; and he grins and I ask him to stand up. I help him lean forward, and he's on his feet with that look on his face like he's going somewhere whether I'm ready or not. I see him happy to be stepping, looking over his shoulder as he stands at his wall ladder making sure that I'm looking; making sure that I see what we've gotten him into. . .and I know there's some sort of current under it all that seems to move this barge along.
It's not my boat. I just tried to bring one here. Heck, I've even had a school-board tell me they want to get it going in their system. So, I stumble and flop and wait by the muddy shore; trying to shove the barge into the water.
My little blog here is somewhat of a dream. There is no conductive education in B.C. beyond the private hours in the homes of families who can pay for the precious time. I'm quietly terrified that some well-organized body will come along and begin selling it like some magical answer at a great price, at ridiculous hours, in a proprietary platform made of bullshards.
I'm just a Dad at the bottom of it all. I have been privileged to have the support of the Purpose Society to arrange 11 CE sessions in the last 10 years. Granted, that's not much, but for a program that has no budget, a volunteer director, and no source of funding; it's not shabby. But who in the heck is satisfied with that? Ask the parents I know who are really pumped and impressed with what they have learned with their kids. It's only a taste. We need the steak. It's time for the potatoes, and I'll be damned if someone is going to turn it into some fancy gourmet dish. Just had to say that, I did.

Esta mañana regresé de México. .. .

A handicapped parking spot doesn't mean anything in México. I think I'd lose my mind if I lived there with my son. In this last week that I spent in Acapulco, I saw about 5 disabled folks in public. Three were begging, one was walking with an obvious situation of cerebral palsy; though well-dressed and very confident and on his way somewhere. The fifth was in her wheelchair and with her family. Just gets me thinking. . .