Time well spent.

Experimenting with lights and switches in the play room, Dec 2009.

I started thinking about this post at Sick Kids Hospital, waiting for one of the specialists to see Mr.NiceGuy.

Four months later I am finally writing something, however, it's different...not derived from my original inspiration (the hospital experience). Since I am always weary of exposing others I'll be be safe and overly gracious by referring to the boys I work with by nicknames.
Just to put myself at ease...

It has been one year since I started working with 11yr old Mr.NiceGuy and his family as a caregiver/support worker. A month ago I was given the opportunity to work with another boy as well, 16yr old Mr.StarWars, while he is recovering from major hip surgery at Bloorview Kids Rehab.

*That is what I 'do' to help support my family. Interestingly, Mark has far more experience in this area than me. *
So, in both of these environments I rely on sign language (ASL), gesturing, eye contact, and a whole lot of love to communicate. This aspect of my job has has expanded my bubble of reality – changed my way of thinking, and gradually provided new insight...even new desires.

At the moment I only have 25-30 words in my sign 'vocabulary'. Other than that I spell things out signing with the alphabet, which makes Mr.NiceGuy laugh and makes Mr.StarWars look at me like I'm an idiot. I knew I needed to practice more with Mark and my housemate/amazing friend/teacher, Sallyanne. Especially now that Adelaide is catching on...she knows and uses about 5 or 6 signs without being prompted. Thing is, I didn't really make time to practice until recently. I met a few more beautiful children at Bloorview, during lunch hour. It was beyond frustrating that I could not talk to them. I almost felt like I was rejecting them ...somehow.
I hate having barriers in the way of communication. Sure, everyone does. It just pushes my buttons, because I so long to relate to people. In Toronto you kind of learn to live with it as there is always always someone at the bus stop or the grocery store who doesn't speak a word of English. It is the nature of this city, right?

I didn't grow up with anyone in the deaf community. Did you? I am embarrassed to say how shocked I was when in a book I was reading provided statistics about deaf populations around the world. The sheer number of people with severe hearing impediments was new to me. Learning that two thirds of these people live in the Third World and reading some personal stories left me really wanting to know more...it left me wondering how to engage with this community here in Toronto more.

I only just realized how much time I have spent with Mr.NiceGuy. I have seen more of him this past year than most, if not all of my friends, really. Sure, I am getting paid...but still. There is commitment and connection there, you know?

And now the seasons have come full circle. We are back to where we started – the bright beginnings of summer. It is exciting as the heat makes a lot of outings more accessible, changing and freshening up our general routine. The Science Centre, movie theatre, and mall will all continue to be good air-conditioned plans, while Centre Island, Riverdale Farm, and the wading pool at the local park will be great locations to catch the sun and see one of his favourite species...dogs. It is also exciting, having gone through the winter pushing his chair through the snow or coping with staying indoors all day whilst keeping him entertained and essentially, alive. What a bizzarre sense of accomplishment...

One year later and I feel (slightly) more prepared for the unkown, more spontaneous/flexible, more comfortable as a caregiver, and more able to actually 'help' in my role.Finally, I think...well, I hope that I am more aware of the many societal barriers that children with disabilities (and their families) deal with everyday...fall, winter, spring and summer alike. I mean, I had an idea before, but now having been in situations (subways in rush hour, outdoor pools full of other kids and families, etc), and having been STARED at aaaaaaaall the time in public (especially whilst administering meds and stuff like that). Could I be starting to “get it”?

Although I am emerging from this year with not as much sign language as I would have wanted, I have a much stronger desire to learn than at the start. This is partly because my understanding and idea of communication has been transformed, partly because I am meeting children with severe and multiple special needs a lot more now, too.

But mostly because my love for these guys has grown.