Sunday, September 19, 2010
It’s an educational thing!
Friday, we (James Forliti and I) went to the Cerebral Palsy Association AGM to make some contacts. This went relatively well, even though I have rediscovered that I am not the mingling kind, but I am working on it.
There were about 30 people in the beginning and approximately 4 new faces (a professional who gave a speech, family of the grant recipient from last year and me). To be honest, I was rather surprised to see mainly adults with CP or parents who now cared for adults with CP; and except for James, no parents of young children with CP.
After listening to what was going on throughout the year and how the money of the charity was spent, I was no longer surprised. There was hardly any real support that charity was able to fund. Except for socializing during the board meeting, awareness sessions in isolated groups, providing information to some interested parties and an annual post-secondary grant to high-school students with CP, there was not much more they could offer.
The number of the membership intake indicated that there only 25 active members; 25 people in the whole province of British Columbia, crazy. The conversation about how to raise public awareness and getting heard by the wider public sounded all too familiar to me. And strangely the vicious circle was obvious to spot from the outside. To get more members you need a wider range of services, which costs money; to get a wider range of services you need members who bring money and contacts in.
Another thing that fascinated me was the presentation of a doctor who introduced her new Spasticity clinic. Fascinating not because I learned something particularly new about spasticity, but moreso I learned why CE would not work in a clinic like this. There are all sorts of professionals at the clinic who all look at the client at the same time and have a meeting about their collaborative treatment plan. This clinic claims to have a holistic service. Yes, holistic it is, but only when looking at spasticity and neglecting the rest of the person.
I always knew that Conductive Education doesn’t look at the person from a medical point of view like most professionals do (even schools with all those policies do this !) but from an educational perspective. I never realized until today what it means for the parents and caregivers. Yes, I am generalizing and I might get slaughtered for it but I also might just have a point.
So if you have a child with CP and you are new to this, you turn to professionals who know better. Those professionals can help you quite accurately about all kinds of medical issues. Now your child sits probably, receives the right kind of stretches, gets the equipment which gets both of you by, you get told how many calories your child should have and how to get this in the fastest way and more, but something seems to be missing. I observed the aftermath and what I saw is a child who is well cared-for and loved to pieces, but does not know how to have an active part in his life; how to have fun. The parents can see that, but do not know how to help their kid to be active, to be interested in things, how to strengthen his self-esteem so he’s more willing to try, to maintain attention in a toy for while, to share emotions, to interact to have fun; to play. All those areas are usually not covered by other professionals or brought in connection with the physical disability. And that’s where Conductive Upbringing comes in:
Today the same child was taken to the local computer store to check out if the Ipad might help to play and eventually learn to communicate. After an initial blink of interest, the child turned passive as soon as he was asked to take part in touching it. Looking at the situation the child did receive the right kind of physical help, the set-up enabled him to reach, there was even a spark of interest, but nothing more. It is important to know that the same behavior was observed when the child was asked to play a game. The child chose the game, was excited to play it, but as soon as the child had it, he would refuse total interest and cooperation.
The Ipad is still a great idea to eventually buy and play with, but right now that seems to be a step to far. The child is motivated to play, so now he needs to learn how to actively take part in a game. The game had to be simple and the child needed to be set up for success, in order to encourage the will to try as well as strengthen his self-esteem and motivation. So the child was set up with a ball and stacked up tins (the tins would create an immediate effect) that he was supposed to push over. It was explained to the child what to do and after he had some interest, he was left one his own (this was necessary to avoid someone else helping him and taking the success away from the child). It took the child an hour with encouraging shouts from far away. Remarkably, the child showed excitement for a long time, as the child would hysterically laugh every time the shouts of encouragement reached him. About an hour later a crash was heard and the parents ran to the child to share his success and award him with attention and cuddles. Needless to say the next round was much faster and the child showed a great deal pf perseverance to get that done. I think it was a great lesson learned by the child and parents and now leaves room for more things to do and work on.