Still here. . .

Our last blast of CE ended mid-August, and everything seems to have gone so quiet. Being a parent of a kid with CP kind of automatically shuts the whole world out anyway, but I'm holding out for bigger things to happen. Just want to say thanks to Lori-ann, Darcy, Deb, Nicole, and Roxy for reminding me that it's still worth pursuing. We're arranging a small "demo" of CE for a local school board. Even more importantly, there is a small group of parents who are standing up for CE, and they're not ashamed to say it!
I realize now more than ever, that none of us set out to be political; but the situation calls for it. When the professionals never ask about what this CE thing is, and years go by, and you're still wondering who is going to see what you're seeing for your child. Well, I guess we just gotta take it to them, in every sense of the phrase. It's time to set up a BC Conductive Education Association, or the art will never take root here. Parents have to coalesce, just a few to start. I can't do this any longer on my own.

Slap-tember! Turning the other cheek?

September has brought its school system down upon our heads again, and I'm betting I'm not the only parent of a kid with CP, or Autism, or Asperger's who is feeling the silence. We've had so many different types of clients this year. I'm feeling the need to apologize for being so focussed on cerebral palsy! It's what my son and I deal with, but wow; I can't even remember what some of our clients have been dealing with . . .corpus collosum?
It just goes to show that conductive education isn't "therapy," it's EDUCATION, and anyone with motivation and a healthy cheering section can learn in ways that will always surprise. I can't help but think about Annie Sullivan. Her name is forever synonymous with Helen Keller. Why? Neither one of them gave up. Helen was frustrated, Annie was persistent and the teacher never gave up on the child; never accepted that her work was finished because a good teacher is always an active student as well. Education is a pursuit, not a system. It's a game played for its own pleasure, for the discovery.
That's why a conductive classroom is built on that circle of ask, attempt, adjust, appreciate, and so on. . .it's a joy not only for the kids, but equally for the dedicated people who go through the process of expanding their envelope. Do you think Annie Sullivan wasn't practically beside herself with glee when Helen Keller hit her first epiphany? It's an amazing thing, and it shouldn't be a service that is sold at a high cost by some charitable organization. It should be a joyful chase through the everyday classrooms of "disabled" children; making them excited about each new day at school.
It's not like that, yet, in B.C. Imagine a kid running home excited about some new discovery, shoving open the door, and shouting, "Hey Mom! Guess what?" and hearing only silence! That's how a lot of us parents feel after six weeks of conductive education and we take our kids to school and say guess what?
There seems to be little guessing at schools. There are only assessments, and reports, and fear of insurance claims; fear of the raw potential of that child in the wheelchair. I can't even count the number of times I've asked my son's teachers to let him sit at a table with a bar on it for him to hold; their eyes glaze over when I make this request. Take him out of his __________? (insert piece of equipment here; it doesn't matter, each piece has enough straps and buckles to allow him to fall asleep in it.) They're not listening. They can't, and I don't know why.
Well, let me say as a Dad, my fear is that the wheelchair will swallow my son's ability to bear his weight forever. He can still stand and walk now, at age 10; only because a conductor cared enough to show me where his envelope was and how to walk along its edge; not tuck ourselves down inside and head for the lost letter office.
It's a lovely thing to help a child build their repertoire, and for a parent as well, to go on that journey of discovery with them. On the way, we learn more about ourselves.
Now more than ever it's important to not roll over and turn the other cheek; except perhaps to offer a Bronx cheer for those who think changing a diaper is about as good as it gets for our kids. Zsipp Zsupp!

Article in The Province, Sunday, 10 August

John Fuller from The Province was so kind as to publish my letter to him and send out a photographer to Purpose. I was hoping you'd see photos of Kurtis & Lori-ann, Isabel & Deb, and Elizabeth & Darcy; but there's only so much room in the papers I guess.

Here is the link to the article.
http://www.canada.com/theprovince/news/unwind/story.html?id=70853862-6f70-4bb3-a6d7-631b4b90a279&p=1,

Thanks to Andrew Sutton for reminding me how easy and effective it is to use the internet to help people connect.

Great job these past six months, Zsuzsanna Balogh. BEST CONDUCTOR EVER, we are going to miss her immensely.

Summer School? Yuck! Or not . . .

As a kid, the concept of "summer school" made me feel waves of nausea. Who in the world would want to be inside 5 days a week doing summer school? Especially with their kid? Essentially, a conductive summer "camp" is summer school. I was at the summer session today, sharing some time with the parents and kids there. It struck me as I was driving home that these parents don't have the haggard, "when is this over?" look on their faces. They looked like people who were content; people who were in the right place. I know the feeling, because the world doesn't go at our pace when there is a disabled child in the family. Nothing, nobody, and nowhere seems to have a clue what is required to build an environment for these kids; but a conductor can and she is doing a fine job of it.

Just watching their faces, I can see that these six trying weeks of conductive education have been worth it. They know the room, the pace, the activities are all custom built for their kids and that is a rare feeling for these parents. I can see it in their faces. I wouldn't say the price was worth it; even though we probably have the lowest cost for summer CE in Canada. No parent should have to pay this much for their kid to be in a productive, effective school setting.

Think I oughta say something. . .

It's been a while, and I feel that I should say something. It seems that word blog itself sounds like something gooey and dripping; therefore it must run on. In short, my own son isn't even enrolled in "my" conductive education program. The reasons for this are multitudinous and I can't go into them here. Perhaps stupidly, I am hoping some version of cosmic justice will play a trump card in the end and make sense out of all of this.
At any rate, Blue and I have learned enough to continue working on things at home; so in a sense I don't feel particularly robbed, though I do miss the group dynamic. Funny thing is, the group is marching on without me and my son anyway. That attests to something; and we shall see if there is more curiosity out there than previously thought as the newspaper is coming this week to take photos. A letter and some photos will be published in early August in the Province newspaper. Watch for it, I have been told it will be in the issue on August 3rd, Sunday.

Welcome to Holland. Yeah, right!

I'm Italian. Well, a great many of us Americans like to say that. Truth be told, I'm half Italian. The rest is 25% Swedish and 25% German; but I don't know a lick of either language. I've been to Italy twice, so I call myself "Italian." Now I'm Canadian, as well as Italian and American etc. To bring it all to glorious fruition, I have a son who is Canadian AND who has cerebral palsy. Since 2000, I've been a bit of a crazed knucklehead about this Hungarian stuff called conductive education; and my Mexican spouse has been incredibly tolerant and supportive of my craziness. Thus, Holland beats the cleats off Italy on the pitch the other day ago, now I don't know where I am.
Now to be honest, Emily Perl Kingsley doesn't sound like an Italian name. I honestly doubt she's ever been to Italy, but I have no doubt whatever that she understands what it is to be a parent of a child with a disability. I have read her essay "Welcome to Holland," and it rings true in many ways; but I can't help myself tonight. I just have to say it. Those Dutch uniforms, the orange ones, are a bit brazen.
I think those classical Italians look just that little bit better in their blue. Gli azzuri? No? Aren't they glorious as they run around LOSING the game? (I can almost hear them begging for the ball.)
In all their classical incompetence, they remind me that it doesn't matter where one ends up: Holland, Venice, Vancouver, Saint Paul. The pitch awaits; and cerebral palsy or not, there's a game to play and someone on your side is eagerly waiting for a pass. A whole crew of teammates are ready to burst into cheers when you score, and if you miss the net altogether; they will still run up and give you a smile and a pat on the back because you gave that ball a good kick.
That's all that matters in the end, really. Kick it. Kick it hard.

Oops! He did it again!

Wow, a somewhat, (although usual) exhausting weekend; trying to make sure my blond-eyed-blue-haired number one son had plenty of opportunity to stretch, stand on, step with, and just plain USE his legs. It was a lot of clumsy attempts at trying to do what the conductor suggested; assist him in walking from the front. Easier said than done, I've always said. Nonetheless, half-sideways and sometimes in front, somehow we did manage to get some of this follow me thing going on instead of the usual "I'll push forward, you push back!"
It was all generously laced with deliberate, watchful attempts to slow down, get control, and put that left foot down; followed by the ol' "Good! Now stand on it!"
Tentatively, then purposefully, he did it; loading his non-bulk of 52 pounds onto that foot as we moved on to "shift, and step." Over and over, though I know it's really not much time. It's the quality of the practice that matters equally with the quantity. When he feels the weight shift, and he hears the word shift, and he knows he's not going to topple over; something goes click in his brain. I didn't hear it, but I saw the results.
It's truly another Carlyle moment, coming at just the right end of what seemed to be a redundant circle pattern of wet hair, lather, rinse, repeat.
Then, kapowie, last minute on his way to his other world he goes plunk plunk plunk, plunkitty plunk plunk; and we have a sequence of 20 or so measured, even, alternating steps. You can't tell me practice doesn't help. Fortune favours the brave, baby. Go for it.

Carlyle, Cameras, and Clips. . . .call me!

Thomas Carlyle said it best. "Go as far as you can see; when you get there you'll be able to see farther." I'm guessing, but I think Peto himself would slap Carlyle on the back wholeheartedly at this remark. It's probably the closest thing I can find to explain why I try to do conductively educational activities with my son.
Of course, he has cerebral palsy. Of course, I wish we could play hockey together, have conversations, make and eat food together; one could go on and on and plunge deep into that chasm of self-pity, and sympathy, that seems to come free with a disability. When Blue and I are working together to find a way to share the task in some small, normal day to day event, these little Carlyle moments come up all the time.
Because he arrives at these tiny, but noticeable landmarks, I become interested all over again and again at how he's doing what he does; and we seem to start again, again. Undoubtedly, it looks and feels like a lot of work at my less co-operative points, but when Blue is feeling it, and trying, we definitely "see farther." What we see is hard to explain, because all the therapists and teachers in his life haven't gone the same way we have. They don't see farther for him holding the bar as he pushes up onto his feet, because they haven't (in 6 years of schooling) put a bar on his table and asked him to hold it. The people in the parking lot at the side of the highway only smile and nod at your description of the waterfall tumbling from one glacier-fed lake to the next.
It seems that people only see what they look at; so no amount of talking is going to "sell" conductive education in British Columbia. It's the pictures, the video that does it. With this in mind, we're actively collecting video clips to put pictures to the words of the kids, Moms, Dads, and people who practice conductive education in B.C. Some of them register with the Purpose program, some hire conductors privately in their homes, some travel to attend "camps" and some do all three. At any rate, the story needs to be told and to be shown.
If you live in B.C. and conductive education has become a significant learning event for you and yours, let me know. We have an expert fundraiser consulting with us now to raise awareness and funds in B.C. for conductive education. Upon her advice, I am documenting moments and thoughts from BC families. Give me a call, or an email if you want to add your experience to this movement. www.purposesociety.org (click on programs, and then conductive education.)

World -wide conductive community?

Weird. We've got our conductor here now, for a 15-week interim session. She's working part-time (3 days a week) until July 5, when the full-time summer session kicks into high gear. IN the interest of keeping our budget above water, the conductor has booted off on a 3 week camping trip in Central America. (I want her job!!) Even with her absence, we have had more continuous conductive ed than ever because it was a week straight and she's been here every week since; at least part time. People are making connections, doors are beginning to open up, and goals are coming into a clearer focus and progress is beginning. It's great, but at the same time, one must admit that for the most part doors are closed; financially and chronologically.
Most parents who I know, who want this for their kids are squeezing it in edgewise. Simultaneously, they are squeezing the dollars for it somehow out of their budgets. I am feeling the squeeze too, as an unpaid volunteer director. I want to build a program, but I don't know how. I want to raise funds for it, but I'm no expert at that either and I don't have all the connections or know how around it. How can I connect with the world-wide conductive community?

Travelling with family

As those in the know know, having a child with a motor-disorder launches one into a new universe with a one-way non-refundable ticket. At least one gets to travel with family. The odd part is that the child tends to be the tour guide, showing the ostensible adult a great number of awesome and vast expanses that are virtually unknown to the publishers of life's little tour guide. We're off the map.
Being off the map means what? Well, for starters it means everyone else's map isn't really of much help. One has to make his own map, and the best point of reference for making this map is the child in one's lap; who, for all technical definitions, is often described as not knowing where he is or where he is going. Just let me say, this is a lie.
The child, (even the "non-verbal" type, especially the non-verbal type) knows where he is and where he wants to go. Figuring out where that is can be a challenge; a monstrous one. My whole point of raving here in this blog is to say over and over that the only thing that has gotten me started in earnest into the this territory called "My Sonland" is conductive education. Without the confidence and support of the conductors, I would have never begun to ask my boy to do so many things we now take for granted. Getting him out of the wheelchair and onto his feet? A notion all the traditional therapists never suggested. Stretching his legs properly? Nope. Asking him to use his hands? They still don't. What's happened is that my son's life at my house is completely different from his life in the hands of others.

Hand over Hand?

I often have parents tell me that I'm doing a good job; and to hear that from parents of kids with CP is the highest compliment I could imagine. The thing that really baffles me though, is to see how so much work, to bring one conductor here for a while, produces next to nothing in the way of curious professionals. It's like the school system and all the therapists have eaten our kids alive and we can't have them back until the children are eighteen.
I am not excited, to say the least about waiting to see what horrible things happen to my son's joints, muscles, and motivation as all these professionals vampire their wages off him and write little reports. I think it was said best by a parent I know, who recently told me: "My son's SEA has very nice handwriting. She sends me a lot of her artwork." I too have a lot of "schoolwork" my son "did" that I keep in a large box in his closet. I just can't bring myself to put "his" work on the wall, or the fridge, or anywhere. It just doesn't look like his work. I guess they call it "hand over hand." That's how Canadian teaching assistants and therapists name the practice of making my son write what they want him to put on the paper. I think they should call it "hand over mouth."
I also suppose I shouldn't take it to the system so hard, but this is my blog; I have to say it somewhere. Seven years ago, I tried to give a videotape to my son's teachers. It showed him sitting at a table, holding onto a bar with no assistance, no belts, no buckles; for half an hour. The tape ran out of space before Blue (yes, his name is Blue) stopped holding; and that's accounting for him letting go with one hand a couple times and coming back to grip it again.
I might as well have eaten that videotape. That would have made more sense to them. My no-longer -repeated requests to the teachers about this odd, holding-on phenomenon that my son purportedly did once upon a time have ceased. I have learned my place, and it seems to be nowhere.

Inside looking out. . .

Here we are, out on the great wet coast of Western Canada, where every child with CP has 5 therapists who visit him/her at school; and remarkably a whole lot of nothing changes. My son represents money to the school system, he is work, jobs. Sadly, the only learning that stuck for both him and I was in the conductive classroom I was able to set up at my work; because my employer is a non-profit agency with the insight and flexibility to allow a desperate father to try something "new."
My son is still in his school, inside looking out at the conductor on his off times, and in my home when we can.
Due to the support of my workplace, I have had the fortunate accident happen that a conductor called me from Seattle, of all places, and we worked out a contract for her to come here until mid-August. Now, as much as I'm happy to have her here, the money has to be found to bring her back some more. British Columbia is a sad story when it comes to conductive education; though I could tell a number of awesome tales about individual families and what they've seen happen after just an insultingly small amount of conductive education. To be honest, I also have to admit that there have been a lot of families who tried it and haven't come back since; but there is no blame to be laid for this. We all have our kids to raise, and our particular circumstances within which to do it.
As for me, if 1 child is happier, and more involved, more engaged, more functioning; it's worth it.