Little steps

Cerebral Palsy Awareness day has been and gone again. I wonder if the world is any different. Is every building accessible? Can any adult with CP access meaningful activities/employment? Is positive language being used (I’m looking at you “R” word!)? Have folk stopped staring?

I cannot answer yes to any of these questions (yet). They are all aims to keep striving for but are they a measure of lack of achievement? I think not. I reckon progress can be gauged in smaller increments.

My getting-bigger-by-the-minute girl has two applications pending for some kick a**e technology. One to cruise independently (and add to my grey hair!) in a powered wheelchair. The other will enable her to use her eyes to talk (I know right…amazing)! If there is such a thing as a time to have cerebral palsy, now is it. Amazing technological advances are becoming cheaper and allowing for new levels of involvement and independence right across the disability sector.

Positive role models are more prevalent then ever too. Skilled athletes gave their all at the recent Paralympics shining a light on the “ability” in disability. Kids of all abilities are regularly popping up in chain store advertising. Social media platforms allow many more voices to be heard. My kid doesn’t have to look far to see people like her living life well.

There’s lots of good stuff going on for people with CP (in amongst the crazy everyday juggle) that I can recognise when I pause and reflect.  It may be pertinent to remember that people with cerebral palsy and other disabilities were routinely institutionalised until only 20-30 years ago.   That is a big shift in attitude in my lifetime.  The world is not perfect for my girl and the extra challenges she has but it is perfect-er.

Grin and we might be able to bear it!

Accessibility is important in literally being able to get to school. But it isn’t everything. Access can be tweaked and small steps ramped if the school is willing. That is the key…being willing and accepting of a kid who does things a little differently. Last week we went on a somewhat scary tour of a mainstream high school. We listened to the principal and saw the facilities. We appreciated the ramps but were most impressed by the smiles. Smiles from teenaged students!

I now live with two teenagers and know they sometimes get a bad rap but they are not known for their cheerfulness. And the sunny looks happened not once but several times! In a world where my girl still has people stop in their tracks and stare, I was pleasantly stunned. As we had arrived the reality of transitioning to a whole new school hit hard. I was tempted to get back in the car before even trying. I know my girl so well but it takes a lot of time to teach all of her intricacies to others. And secondary schools can be prickly places for the most confident and able kid.

To succeed at school one needs to be able to communicate. Learning how missy talks takes some time and effort. And, of course, recognising a smart, funny person with a lot to say. Seeing a young  lady not just a wheelchair. In class time much of this will be the responsibility of an aide. But peers are so important to time at school. And these students filled me with hope.  For me, last week (and often) it all begins with a smile.

Around the world and back…and a bit more

DSCF8123The green machine has done it. One hundred thousand kilometres. Apparently it is 40 075 km around the equator so we have circumnavigated the globe nearly two and a half times! That’s a lot of school and hospital runs. It all began one fine morning at playgroup…..{insert hazy, reminiscing fog here}…

The process of travelling anywhere with the toddler girl had become increasingly difficult. Lifting her still small but stiff and deadweight body out of her little wheelchair. Bending and twisting to get her into her car seat. Pulling said wheelchair apart. Placing it into the back of a very small hatch back car tetris-like so it would fit, shutting the back and taking a deep breath. Then we would get where we were going…and do it all again in reverse! I limped into playgroup exhausted before the day was really underway. Friendly faces had looked up in sympathy. “What do you need and how can we help?” By the time we left that day plans were made to have a stall at the kindergarten fete. Friends had volunteered to make playdough and heat packs and pot plants. If friendship and drive had anything to do with it we were destined to have a wheelchair accessible vehicle.

And so a quest was born. It overwhelmed me then, and still does, to think of how many people worked together for us. Well for her really, which helped me to accept the amazing outpouring of generosity of time and spirit. A teenaged friend made cards out of her own photos which she sold at the local post office. This selflessness lead to an article in the local newsletter which generated interest from our local paper. More support…many happy tears. Particularly when opening the mail to find pocket money. Yes, some children sacrificed buying a treat for themselves to help the little girl who needed a car to get to kindy. Awe inspiring to this day. There were several further fundraisers including a raffle, a family day at an open garden and a huge auction night. The news floored me (quite literally, I was laying on the floor at the time in a satisfied stupor) at the auction night. Calculator buttons buzzed. In a matter of months our community had raised enough funds to not only buy an accessible vehicle but cover the $8000 gap payment on missy’s new wheelchair. Stunning! For every ticket bought or donation given I  also saw holes forming in the wall of fear and misunderstanding around disability.

We still feel the warm community hug as we motor. What was difficult then would now be impossible as the girl has grown so much. It is possible for her to be taken to appointments without the cost and uncertainty of a maxi taxi. She is able to visit a café on the weekend to taste a babychino. My girl can live her life more normally because of this generous gift. So five years and 100,000 clicks on I say thank you to all of those who helped get us on the road.

PS…if I have missed waving back at you I apologise.

Oh and PPS…I do hope you squint a little if you see us drive by so as to not notice the car could do with a wash!