Lost for words...or maybe not...

I haven’t blogged for awhile. It’s been hectic but life is good. Every so often though, when things are going relatively smoothly, something jumps out and bites you in the butt. I’ve blogged before about our bright and shiny grandson and the struggle he has to keep up with the back of the pack. But he does his best, and he does it without tears or complaining – we should all be gifted with his patience and perseverance. He even received an award at school last year based on those very qualities.

But alas, it’s a new year and anyone who works with kids, let alone special ed kids, knows that the key to peace and tranquility is finding the “buttons”, both the ones that create motivation, joy and enthusiasm which you push often, and the ones that can set a child into a tailspin of anger, hurt and bad behaviour, which, if you’re doing your job for the right reasons, you avoid at all cost. There are always those who, for either perverse or ignorant reasons, think that if you push the “bad reaction buttons” often enough and hard enough, the child will give in, comply, become “normal”, and basically won’t cause any problems. Anyone with any experience, wisdom and compassion knows that likely the opposite will happen. The bad button pushers have to win at all cost and the price paid by the children in their trust is high.

It took this grandson awhile to adjust to kindergarten but by last June he loved school, trusted his wonderful teacher and assistant, and was excited to start grade one. His success, as always, has been due to his mom’s bear-like advocacy and tenacity – picture dragging a camel through the eye of a needle – it can be done. Hard work, the sharing of knowledge, strategies, joys and tears, and the excellent team relationship between home and school provided a fabulous start for a small boy with health issues and huge potential.

The goal is to move forward, right? Team planning, transition meetings, a file an inch thick with test results and recommendations from experts at ACH should provide some insight on how to keep this child motivated and learning. Said child has difficulty focusing for long periods due to his seizure disorder and the medication that successfully controls it. His coordination and body strength are low and he tires easily. However he is intelligent, friendly, generous, and has a heart as big as a mountain. A great number of people have worked very hard to encourage his strengths while making unobtrusive allowances for his weaknesses and have been inspired by this quiet, determined, happy little boy.

So, off goes grandson to grade one. He’s excited as can be. Now, barely a month into the school year, it’s obvious to those who love him that we’re losing him both mentally and physically. He is no longer allowed to be independent. Someone holds his elbow whenever he moves, whether it’s the adult in charge or any one of a group of other grade one students recruited to “take care of” our boy. He no longer plays freely on the playground at recess. He refuses to put his shoes on by himself because, in his own words, “someone else will do it for me.” I can only imagine how much has been taken away as he proceeds through his day. He has become tearful and shy; he is no longer very happy. Rather quickly, this little guy is being turned into an invalid, not capable of action or thought on his own.

Then, to complicate matters, there is a call home. One of the specialists involved in our boy’s program recommends that for his own safety, it will be necessary to tie our boy into his chair and secure him in case he has a tonic clonic seizure and falls and hurts himself. This person wants mom’s permission to do so and it seems, is governed by the idea that it’s better to seek forgiveness than permission because according to our boy, the experience has already happened. There is so much wrong with this I’m not going to go into it here but it’ll probably end up in another blog. It should be noted though, that the type of seizure that staff seem desperately afraid of, are thankfully controlled by his medication. He hasn’t had one in over a year, but hey, just in case he does, tie him to a chair? Really?

Or is the seizure disorder an excuse. Is it a matter of wanting to control a small body that sometimes needs to get up and stretch and wander? Is it to impose restrictions on a small boy who thinks and learns and thrives better when in motion? Is it because someone, or a whole team of people, value conformity over individuality in any degree? Regardless, there is no acceptable reason for tying a child to his seat.

I have always been an advocate of public education. I’ve always said, “There’s a real world out there, filled with real people and real problems. Public school is how a child learns to cope as a well informed and well adjusted adult.” However, as our society becomes more and more competitive the survival of the fittest is becoming more and more acceptable. There seems to be less room for patience, for understanding, for leniency, and for value placed on the individual. It is starting at the elementary school level, and it is happening in our boy’s grade 1 classroom.