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.
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.
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.
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.
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?
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.
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. . .