Our day at Father Serra School (in Toronto!)

While Skye and Gail are working their way across Canada meeting amazing cool communicators (not to mention fighting rain, potholes and junkyard dogs) , Burns and I are in Toronto keeping the home fires burning and providing some of that background support that is inevitably needed.

We are also involved in Kilometres for Communication events that are happening here. The day Gail and Skye left to go west, Burns and I joined in the Mabin School’s wonderful run and walkathon to raise money for Kilometres for Communication. Last week we attended a wonderful AAC demonstration put together by Laurel Robinson of  Holland Bloorview Communication and Writing Aids Service to show teachers and teaching assistants in the TDSB (Toronto District School Board)  the many ways AAC works.

On Friday, Burns and I were honoured to be invited to Piero’s school (Piero’s story is on the Kilometres website) to talk to … not just  his class, not just the teachers, but the WHOLE SCHOOL!  I was invited to talk about AAC, Kilometres for Communication, and my experiences in using AAC. The school, Father Serra Catholic School  in Toronto,  has done an amazing job in raising community awareness and also in raising donations for Kilometres for Communication.  Our special thanks for this goes to Susy Gallucci who did a wonderful job of coordinating it all and making it happen flawlessly.

We had two sessions, one for the younger children and another for the older. Di Bennett, Technology Specialist, started off the session, explained what AAC was about, and  also shared with us what people who use AAC need from the rest of us. Di had a number of specialized AAC devices, and explained how they worked, and had some of the students try them out.

After Di’s talk, it was my turn. I used my Dynavox to explain how I communicate and also what my experience as a person who uses  AAC is like.

It was clear from how the students answered Di’s questions that they already have a high level of awareness about AACommunicators . They were familiar with many alternative ways to communicate. Many of them – we figured about 7 to 8% of them knew someone who either uses, or needs to have AAC support to help them communicate.  Just think –if these numbers were extrapolated to the general population it means there are a lot of people with AAC needs!

We’ve now worked in two schools in Toronto to raise awareness and donations for Kilometres for Communication. Both times, excellent experiences. The energy, effort, understanding and empathy have been powerful. These are students who really get
it, and will spread it to others as they grow up. I certainly wish I had this in my elementary school years

Kerr

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Day 12 – Canyon Hot Springs to Golden, B.C. – 116km

Yesterday was composed of spectacular scenery, long
climbs, winding descents, dark, spooky tunnels where tractor-trailer trucks
could come roaring from behind, wide smooth paved shoulders, and sections of
road with no shoulder and crumbled shale from fallen rock. The first 20km of
the day were up and down. The next 20km composed the gradual climb up to
Roger’s Pass. That was followed by a long descent, into a river valley, which
meant that I had to climb back up, and indeed I did. That was a long climb, but
I didn’t see any elevation markers or signs for ‘passes’, so I likely didn’t go
as high as I did earlier in the day. After that, there was another descent,
some hills, and then 20km of fairly flat riding into Golden.

About 45km before Golden, the time zone changed from
Pacific to Mountain Time, so I lost an hour—I didn’t get into Golden until
about 6pm (Mountain Time). It was already 8:30pm by the time we had gotten
groceries and settled into our campsite to start making dinner. Our campsite is
next to a wide rushing river that slithers out of a Canyon 500m away from our
site. When I look further down the river, I see a large mountain covered in
snow. The air is a cool mist from the river, mixed with the scent of coniferous
trees, and blooming flowers. Last night, feeling rather exhausted, I decided to
go for a walk and stretch next to the river, and procrastinate my writing until
the morning. The stars were quite spectacular—it was a clear night and the
contrast with the mountains seemed to emphasize the stars’ brightness.

So far, my body is holding up quite well. I don’t feel
weak or achy, and I haven’t lost my appetite. I’m curious to see if that stays
the same 2 weeks from now. I hope it does. The Rockies have treated me well so
far, hopefully the Prairies will do the same—that will be left up to the winds.
It’s hard to believe that everywhere I look I see massive mountains, their
summits lofted in the sky, and in another 4 days of cycling (including today),
I won’t even be able to see a trace of a mountain.

I’ll miss the mountains (and all of B.C.), but I’ll also
be ready for the Prairies to appear. It seems as though we’re going to have
some events in some small Saskatchewan towns en route, and it also looks like
I’ll have cyclists joining me in Saskatchewan. We also have an event in the
making for Winnipeg. Also, as of recently, we have been contacted by someone
who is working away at getting an event planned in Thunder Bay. There will be
more info posted about these days a little later on.

Today is a short ride—about 60km, but it’s mostly, if not
all, uphill. Tonight we’ll be in Field, British Columbia. We likely won’t have
internet, and there’s a high likelihood that we won’t have cell reception
either. The day after that, we’ll be stopping in either Banff or Canmore,
Alberta, depending on where we can camp. Ok that’s it for now. I should start
pedaling soon.

More to come!

-Skye

Camped by the rapids of the Kicking Horse River

May 30, 2011

We’re camped in Golden, B.C. , by the rapids of the Kicking Horse River surrounded by mountains, many of which are snow-capped.  Each night we are in awe of our surroundings.  Skye had vigorous climbs today, and again we played leapfrog.  He started off cycling.  I finished tasks in the campground, and then drove until I passed him and pulled over so he could get water and food before cycling again.  I tried to catch up with emails and other tasks as I waited for Skye, parked in one scenic spot after another, surrounded by mountains,  across the road from waterfalls, beside rushing streams and rivers in the presence of towering coniferous trees.

Right now the question is if we are going to be within range of cell phone and internet.  This is our connection to Kerr and Burns, to our cross-country network, as well as my connection to my clients in Toronto.  For those who don’t know me, I’m a psychotherapist, and it has been quite difficult for some of the people I usually see that I have left Toronto for three months.  I have agreed to do sessions as possible over the phone, but it has been more challenging than I had anticipated with the three-hour time difference, with Skye’s schedule and needs, with events and media.  The unpredictability of cell phone and internet complicates matters, and all appointments are conditional on the availability of cell phone reception.  It’s by no means ideal.

The uncertainty I feel about whether I am going to be able to reach the people I need to communicate with makes me very aware of the uncertainty Kerr and others who communicate with AAC must feel on a regular basis as they go out into the world.  Will there be communication and connection?  Will there be acceptance and understanding?  Will there be patience?  Will there be attunement?  Will there be success or disappointment?

I had an experience when I was a child which I’ve been remembering  lately.  In my childhood excitement over a school party, I was doing some over-zealous ballet leaps in my bedroom one morning.  I crash-landed with a bad bump of my head, which resulted in an acute headache.  I was determined to go to the school party, so I didn’t let my parents know, but when I tried to put on my coat and boots, my hand-eye coordination was totally askew—I couldn’t get my arms into my jacket sleeves or my feet into my boots.  Soon afterwards, my speech became completely garbled.  I have a vivid recollection of lying on my parents’ bed, being very clear-headed, knowing exactly what I wanted to say, but hearing my own gibberish every time I tried to speak.  The people around me were panicking, and I had no way to tell them  I could think and understand in the same way as usual.  My experience only lasted for a number of hours, but it was profound and isolating.

Years ago I met a middle-aged woman who had had a stroke when she was in her early 20s.  She talked about lying in bed for about a year, having no way to speak at the time, but understanding everything, including the conversations among the people who came into her room and talked about what a shame it was that she was ”a vegetable”.  No one thought to offer her an alternative way to communicate.

And what about alternative ways to listen?  We’re hearing about the frustrations with AAC  technology from many of the people we’re meeting.  Some are able to speak,  but not in a way that can be easily understood by others, although they often  cannot understand why this is, because to them, their speech is completely understandable.  To them the AAC technology is slow and tedious in comparison to their speech.  Others use their own personal sign language and don’t understand why those who have known them for awhile haven’t learned that personal sign language. We certainly have a number of friends who communicate without language, and the challenge they pose to those of us around them is how to listen when what is said is without words.  The questions I am asking on this journey are not only about the many ways to communicate, but also about the many ways to listen.

Gail

From the Mid-Island Cool Communicators

The mid-island Cool Communicators with Skye iin Nanaimo on May 20th

The city of Nanaimo and the mid-island Cool Communicators were ready, on a bright sunny day to welcome Skye as he ended his day’s journey north from Victoria over Malahat mountain to Nanaimo. The Cool Communicators welcomed him with colourful CC-made, motivating posters and the city provided a visiting cruise ship and the Pacific fleet in the harbour! What more could a cyclist ask?

The welcoming Nanaimo harbour

The Cool Communicators met as a larger group the next week and had some thoughts:
“It is great to see you doing this! Thank you.”  Cory Fisher (Comox)
“This is an awesome thing you and your mom are doing with your brother.”  Ashleigh Dukoff (Victoria),
“It is good to know you are making people think about SGDs and the people who use them, like me.”  Kelly Ferris (Nanaimo)

Nanaimo, May 20th

“Thank you for being supportive to our needs.”  Haylie Graham, (Nanaimo)
“I had fun making posters for you.”  Lauren Tipping (Cedar)
“Thanks for having Nanaimo as part of your trip!”  Genevieve Johnson-Coy (Black Creek)
“Thanks Skye.  It was great to meet you at Transfer Beach in Ladysmith.  I’m glad that you are letting people know about using switches to communicate.   I think it would be great to travel all across the country like you are.”  Joy Potts (Ladysmith)

Nanaimo, May 20th

We talked about what this group would like you to tell folks about people who use Speech Generating Devices:
Since meeting you Haylie has had the chance to talk to a small girl about CP and Speech Generating Devices.  Haylie shared that the girl thought that she was sick and that is why she was in a chair.  Haylie took the time to educate her about CP and the way she moves and talks.  She felt proud.
Ashleigh wants people who speak typically to remember to take the time to listen to those of us who it takes longer.  Ashleigh Dukoff (Victoria)
Cory Fisher brought up that he does not like it when people talk to his workers and not to him.  Our group all agreed that this was a big peeve!  Cory Fisher (Comox)

Nanaimo, May 20th

Kelly wants to thank you for the idea about a sign on the tray.  He told us that he is going to hang a sign on the front of his chair so people will know to ask him questions and not just stare.  Kelly Ferris (Nanaimo)
Sydney thinks you are Sweet!  Sydney Hodgson (Port Alberni)
I think it is great that you travelled over mountains and through rain and storms to do this.  Rick Peters (Duncan)

Day 11 – Sicamous to Canyon Hot Springs, B.C. – 105km

The threat of thundershowers never materialized—so far it’s been a gorgeous day. I got on the road early this morning because I was expecting a thundershower at some point today. Although the thunder never came, I’m glad I got on the road when I did. The morning light on the mountains made it worth leaving bed early. I can say with certainty that I am in the mountains again. There were lots of rushing streams, which I would have loved to have spent a day lounging by. Whenever there was a bridge, the paved shoulder ended. The bridges were only as wide as two lanes exactly—if two over-sized vehicles travelling opposite directions met each other at exactly the point of one of these bridges, bad news would happen. I had to stop, wait until I saw no cars, and then cycle as quickly as I could across these bridges. Today was mostly gradual and manageable climbing with a few quick descents. I’m actually starting to get frustrated when I descend. “No! I don’t want to go down now! I’ll just have to go back up. Can’t I please just keep the altitude I gained?” That’s not how the mountains work. You go up, you go down, and then you go up a little further than before. For the most part, the Trans-Canada Highway follows the river valleys through the Rockies, which means the road is slowly climbing until Banff. The road usually isn’t at the bottom of the valley. Typically it is cut into the grade of a mountain  bordering the valley. There are lakes, rivers, gorges, railroads, cliffs and sometimes no valley. Frequently, the highway climbs the side of a mountain to go to a flatter part of the mountain, or because it simply must go higher to pass an obstacle. The cycling is slow, but that is compensated by the spectacular scenery.

About 20km east of Revelstoke

We don’t have any events or press scheduled for the next couple of days, so it will be nice to get into a nice relaxed rhythm—although it may be a bit boring in comparison to the bustling days we’ve had in the last week. In less than a week, I’ll be presenting with Gail via Skype to the Breaking the ICE Conference back east, so I’ll be preparing for that.

Right now my mind is failing me (don’t get too concerned), so I think it’s time for a pre-dinner nap. I haven’t rested since I got off my bike, and that was several hours ago. I got some more helmet cam video today…still waiting for some fast Wi-Fi. Today was a short post, but I assure you there’s more to come.

-Skye

Day 10 – Vernon to Sicamous, B.C. – 75km

Today was a pleasant and relaxed 75km cycle from Vernon to Sicamous; with the exception of a major adrenaline boost over a 100m stretch. I’ll get to that in a bit. It was partly cloudy most of today and a little cool; perfect for pedaling. Highway 97A from Vernon gradually goes up hill to Sicamous, and there were wide paved shoulders for the most part. The only exception to the continuous stretch of decent shoulders was about 2km near Armstrong where construction had absolutely butchered the shoulder, and rock, pebbles, mud and everything were on the road that I had to share with all the other traffic. That was a downhill stretch, so it went quickly. There was a dramatic change in the terrain today. Near Vernon, there are lots of foothills, grass, shrubbier types of trees (although there are coniferous forests on some of the higher hills, or ‘mountains’ if you’re from anywhere east of Alberta). As I travelled north, there was less desert terrain, and more greenery. I began to see some lush farmland. At one point today, I passed a herd of cattle huddled in their field close to the road. They were watching me from a distance. As I approached, they spaced out and then they clumsily ran beside me—or tried to—for about 50m. They aren’t the most graceful of animals.

A little further north, the road came onto the rocky shore of Mara Lake. It was on this stretch of pavement that I got my first major adrenaline rush of the trip. I don’t know whether to call it a close call or not—but I was scared. I came around a corner. There was a property on a hill, a bit above the road. This property belonged to Mr. German Shepherd, the enforcer—the guard dog. Apparently the shoulder of the highway was his property as well. This canine bolted down his little hill barking ominously and tore after me. I wasn’t going that fast—probably between 25 and 30 km/hr. He was faster than I was at this speed. He was only a couple feet away from me.  At one point near the beginning of the chase, he was close enough to take a chunk out of my leg; he probably didn’t know what to do because I was on a bike. Anyways, I hauled out of there and that nasty critter ate my dust. Maybe it was just a great game for him that he plays in cycling season. Lots of trans-B.C. and trans-Canada cyclists follow that route.

Look to the right of the photo to see the beast who viciously booked after me...and then got dusted.

At an Esso station in Sicamous, I met up with the support vehicle. My mom and I then tried to find the campground that Google Maps
indicated, but to no avail. We found one, but it had a bold sign, saying that they did not take reservations for single night over-camps. We stopped at a tourist info centre and Gail went inside. She was a little while, so I could tell she had gotten into a conversation. It turns out that she had entered a conversation about Kilometres for Communication with the lady working in the office. The woman who Gail had met was quite interested in the campaign—she had a friend entering the early stages of dementia. We’ve talked to many people about this campaign—many of them initially strangers. It strikes me that a vast majority of the people we’ve talked to know someone (a friend, relative, family member, colleague, or team mate) who has been, is beginning to, or will be faced with the challenge of communicating with limited or no speech.

Policies, funding, and attitudes vary in each province. So far, compared to what Kerr’s experienced in Ontario, and what we’ve heard from others in different parts of the country, British Columbia seems to be close to having it right. To us, one  big positive British Columbia has over Ontario is the inclusive education. They don’t have schools where only students with disabilities attend. They have schools where everybody goes, and those who need a unique education will attend a special education class for a couple hours a day and attend other classes with everyone. As well, the funding in British Columbia is significantly better than in many other provinces. British Columbia has got a lot right, but I don’t want to sing my praises too loudly. There’s always room for improvement—waiting lists for communication devices and services  are still about a  year, and without the gritty advocacy of some individuals, families, and organizations out here, AAC funding would not be what it is and by no means is the tough part over. Lois and Robert, who we met yesterday in Vernon said, “[It’s a cycle,] we ask, they say ‘no’, we say ‘no isn’t good enough’”. Lois and Robert are married and live in Penticton. Robert lost most of his speech in a work place accident many years ago, which resulted in brain injury.

Hopefully, through a collective effort, Kilometres for Communication can raise more awareness about the changes needed in the provincial policies affecting funding for AAC services, supports and technology as well as those affecting education and inclusion.  Sometimes, a flawed policy is based on misinformation and misunderstanding.  My brother Kerr didn’t even have to go to Tribunal to change the funding policy in Ontario for communication device leases for people on social assistance. Policy makers simply didn’t understand the many reasons that people wanted to lease communication devices from the Centralized Equipment Pool (CEP) instead of paying the full purchase price, often $8000 or more. (CEP takes care of repairs, provides new devices and or software as a person’s needs change and as the technology changes.) Once the policy makers understood the advantages of leasing communication devices, they were quite willing to change the policy. One of the first steps in effecting positive change is ensuring that the policy makers have comprehensive knowledge about the issues, and that they understand the profound effects of their policies on people’s lives.

Today was a slight climb and a fairly easy ride. Tomorrow will be a little more difficult as I am finishing east of Revelstoke (well into the mountains). As well, I also had my helmet cam rolling when my encounter with K9 occurred, so I’m hoping to get that posted next time I have some swift Wi-Fi. Right now I’m operating via smart-phone, so it would likely take the rest of the trip to upload a 4-minute long video. Ok…maybe not that long, but Bell would be thrilled to charge me for that extra internet usage.

Until next time,

Skye

Day 9 – Rest/Event Day in Vernon, British Columbia

I’m writing the first part of this blog sitting in our RV—hoisted up inside a garage for an oil change.  I woke up with full energy today, which is always a positive. We attended a wonderful event earlier today at the Schubert Centre in Vernon, B.C.  For the first time ever, the adult AAC speakers of the B.C. interior met each other today, and us.

Gail and I did a short 10-minute talk about Kilometres for Communication and our cross-Canada journey. Next on the agenda was an ice-breaker meeting game—AAC Jeopardy. Everyone was given 3 different questions on a card. An example of a question would be “Are you finishing writing a book?” Each person had to find the mystery people in the room who held the answers to their questions.

I met some phenomenal people today. By no means will the following stubby paragraphs do these people justice, but I’ll try my best.

I met a fellow named Bill whose form of communication astounded me. Bill has sensors on his head rest; one on each side of his head. Using these sensors, Bill taps out Morris Code with his head to spell what he wants to say. His computer translates his code out and can say it out loud for others to hear. From what I overheard in AAC Jeopardy, Bill is a local journalist.

Michelle is a writer and an artist; she is finishing a book and is planning her second trip to Australia. She has her own website: www.michellebritton.ca. On her site, you can view her art, read her blogs, and learn a bit more about her.  Check it out. Michelle communicates using a thumb trackball (if you’ve ever seen an ergonomic mouse with the trackball on the side) and an index finger clicker to operate her communication device.

Melissa has a lot of style. I could tell that by her tasteful knee-high boots and the vine of hearts tattoo on her arm. She is a leader and advocate for AAC funding in British Columbia. When the minister responsible for allocating funding was uncertain of future funding, she helped
put him in the awkward, bright spotlight through a social networking campaign. The funding was allocated in the end. Melissa maintained a 4.0 GPA in high school and is continuing to put the effort into whatever she does. She has educated many (including professionals), about how communication devices such as hers work. Her next goal is to get the momentum rolling behind her own non-profit awareness organization that strives for independence for everyone everywhere. She comes across as a connector—someone who knows a lot of people and has  a contagious personality. There’s more to come in the future on our website and blog about Melissa and her campaign for independence.

Kelly and her mom Colleen were both quite sweet. They showed us the Kilometres for Communication newspaper article that was in today’s
Vernon Morning Star. Kelly has a tracking dot positioned just above her nose. Her computer tracks the dot’s movement, and she is able to navigate her communication device’s screen (placed in front of her) by moving her head. I got a sense that Kelly had a good appreciation for humour. Leanne Love and Tim Johnson were the organizers of this great event. At one point, when Leanne was just in earshot,
and not talking to anyone else, Kelly said: “Hello, Leanne” with the computer-generated voice of her device. Leanne responded with the typical answer: “Hello, Kelly”. Then Kelly said “Hello, Leanne” several more times. I don’t know if this was intended, or if Kelly was simply stuck on a phrase as can sometimes happen on communication devices. Leanne replied, “I can just picture you waking me in the middle of the night: ‘Hello Leanne…Hello Leanne…’”. Kelly thought this was a riot (I thought it was quite comical too). She stopped saying hello to Leanne
after that moment.

I wish I could write about everyone I met today, but I need to share this computer, other campaign tasks need to be done, and both Gail and I need to get to sleep at a reasonable time—unlike what we’ve been doing. We’re still on that Pacific Time, so we better get our late sleeping habits corrected before we lose another hour to Mountain Time; yes, we’re that far already.

Huge thanks to Leanne Love and Tim Johnson for organizing today’s gathering. No photos today, but shortly we’ll have some photos from
today’s event up for all to see.

Tomorrow we’re off to Sicamous, the gateway to the Rockies.

Lots more to come,

-Skye