Tuesday, June 14, 2011

Headwinds and Tailwinds *

I have become quite a fan of a new blog I discovered a few months back.  The name is Kilometres for Communication - you can find it on the sidebar.

What's it all about you ask?
This blog is about communication. It’s about a special kind of communication called AAC. (I personally struggle with this term; it stands for Augmentative and Alternative Communication, which is too much of a mouthful for me. AAC is simply an alternative way to communicate when someone has limited or no speech.) This blog is about disability, and navigation of disability in a society which orients itself towards people who are able-bodied. But this blog is also about ability, diversity, capability, possibility, hope. It is about our humanity, and about our connection–one person to another. It is about community and inclusion, and about how wrong it is for any of us to exclude and to make the decision that someone does not belong because he or she is different. So this blog is also about the importance of accessibility, because accessibility is a key to inclusion, belonging and community.
A family affair - the 17-year-old younger brother of "an artist, educator, social activist, writer, story teller, gardener, community facilitator [who] happens to travel in a wheelchair and communicate with AAC" proposes (family in tow) to cycle across Canada to ... well, how about if I let them tell you?
We would meet with people who speak in creative and diverse ways, and with the help of the media, introduce them to Canadians so that never again could they equate not being able to speak with not having anything to say. We would invite people to wheel, walk, run and cycle with us, and we would invite organizations, small groups of people and individuals to host events across Canada to raise public awareness and funds to empower voices and to make accessibility and inclusion a national priority for the more than 3 million Canadians with disabilities.
Although a lot of people have walked, ran, biked, etc. across Canada to raise money and awareness on issues like cancer and for other "good causes" and the man in motion is back at it (actually I'm not sure he ever really stopped), I've never heard of anybody doing quite this. I've never heard of anyone giving a voice to people who struggle to communicate in our world quite this way.

And, as if that weren't enough, Skye (the main writer of the blog) often amazes with such a beautiful voice for such a young man.

The blog sets out his cycling journey from West to East coast (he is currently in Manitoba) but he ends many of his posts by connecting the logistics of his travels to the point of his journey.  Such as he did on Day 4 - West Vancouver to Mission BC, traveling through the mountains in British Columbia.
We all need to be explored. It’s a tragedy that there are people on this planet whose speechlessly brilliant summit will never be discovered because the people around them don’t realize that the hike is worth it. Remember this: the hike is always worth it. Always assume ability, and listen with the patience, care, and effort that you would want anyone to listen to you. Often, the hike is the best part.
Even though I have friends whose young adult children are non-verbal, the world of AAC (augmentative and alternative communication) remains foreign to me.

And so it is that, as if through a lens, I follow Skye's blog and observe and learn and think more and more about what it must be like to have people assume you have nothing to say simply because you find it difficult to communicate or to have them walk away as you struggle to communicate because they don't realize that's what you're doing (or maybe they just don't care) - I mean, it's a busy, busy world we live in and I can only stand here and wait so long, you know.

Tick. Tock. Tick. Tock.

But today's blog post was written by his mother, Gail, and titled "Headwinds, Tailwinds, Lessons Learned" (* hence the title of this post).  It was these two paragraphs that really caught my attention - and made me reflect on our own life with the Blue Jay.
It is now a number of days after I originally began writing this blog entry. I’m sitting in the RV by the side of the road in Moosomin, Saskatchewan, waiting for Skye to appear on this windy, rainy afternoon. By the time he arrives, he will have pedaled 48 kilometres since we last met. The promised tailwinds that are supposed to assist Skye on his journey have been elusive. Tomorrow, they are supposed to blow tomorrow, just as yesterday, they were supposed to blow today. It’s a mental challenge, waiting for these helpful tailwinds, yet getting back on the bike to pedal in the face of more headwinds.

In so many ways, this is the story and the feel of Kerr’s [Ed. Sky's brother] life—the hope and promise of helpful tailwinds; the disappointment when instead he is met with headwinds: the funding that doesn’t come through, the education that doesn’t happen, the waiting lists that never seem to get shorter, the well-trained assistants that need to move on in their lives. How does Kerr—and how do we with him—get back on the bike and keep pedaling?
Headwinds and tailwinds, indeed ... that would be a good way to describe our current experience with attempting to help our now 18-year-old daughter master that transition from childhood to adulthood, which can be hard enough for any adolescent but so much more challenging when you're ... well, challenged.

I must admit that I have felt somewhat like a bull in a china shop of late as I struggle mightily, furiously (and yet often it seems in vain) to help her access the services she currently so desperately needs.  Transition planning and more work on life skills at school.  And counselling or meds (but why would you choose medication when you have a pretty good hunch that counselling would do the trick, if only she could access it?) in managing her emotions, letting go of obsessive thoughts and learning better social skills.

But she's too high-functioning.  And yet not high-functioning enough.  She is too old.  Or she doesn't qualify because she's mentally challenged.  Or she doesn't meet some other criteria for service to this or that group because ... fill in the blank. I've pretty much heard it all as of late.

And yet, despite the headwinds I seem to battle, on a daily basis, at every turn, every once in a while I will find myself screaming talking to the right professional, a person who can and does seem willing to make that extra effort to find the Blue Jay the help she needs.

Talk, of course, is cheap.  And the proof is (and always will be) in the pudding.

But when I somehow stumble upon those rare individuals who actually seem to hold out hope (of doing baseline testing and setting appropriate work and life goals at school or the elusive referral to the psychiatrist that specializes in adolescents with various challenges or ... is it really too good to be true ...the possibility of a way to access funding for one-on-one counseling), it's like suddenly coming around a bend during a seeminly never-ending uphill climb and unexpectedly finding the headwind you've been battling might just be gone.  And perhaps, just perhaps, the wind might actually be at your back for a change.

I'm hoping Skye will soon find those elusive tailwinds.  And that people will pay attention to his cross-country journey and, more importantly, the reason he is doing what he is doing.

At the same time, I hope this isn't just some trick or sleight of hand and my own headwinds are finally diminishing.  Wish us all luck. We will need it.

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