We stayed in a quaint campground at Campbell Cove, which is about 15km away from where I finished cycling at East Point, P.E.I., yesterday. I would have loved to have spent a couple days at this spot, looking out onto the Atlantic from the north shore of the island. Our camp spot was about 25m from the water.
Normally I don’t like waking up early after cycling close to 8 hours the night before, but on this morning I didn’t mind. We were driving into Charlottetown to meet a family, or at least three quarters of a family; 13-year-old Brett, his older sister Jade, and their mom, Lynn. Brett speaks with a communication device operated by a head switch. If he’s asked a closed question that can be answered with a yes or a no, Brett can communicate quickly by either looking up to his side to say ‘yes’, or by shaking his head to say ‘no’.
My mom and I met Brett, Jade, and Lynn at the Merchant Pub in downtown Charlottetown at 9:30am, where Lynn works. We met before opening, so it was quiet. One of the first things Brett did when I met was he showed me his ‘yes’ and his ‘no’. Jade asked Brett, “can you show your ‘yes’”…Brett lifted his head so he was looking up to the ceiling on his side… “and show your ‘no’”… Brett shook his head. I appreciated this. My brother blinks for yes, so I’m familiar with phrasing questions to be answered by a yes or a no. However, without this introduction, it would have taken me a while to realize that Brett says yes by looking up to his side. If you ever meet someone who doesn’t have speech, and you feel unsure of how to communicate with them, ask them: “if you have a ‘yes’, could you please show me”. Ask the same for no. Look to see what body parts they are consistently moving.
There were several things that I respected about this family. I would say some of these things astounded me.
For starters, Brett has an amazing ability to tell you what day of the week any day of the year is. He told me my birthday, which was on the 3rd of July, fell on a Sunday. He didn’t hesitate. He just knew. Ok, that was pretty fast Brett, but that was still quite recent. Lynn then asked my mom what her birthday was. “January 27,” she replied. Lynn turned to Brett: “Sunday? Monday? Tuesday?…” Brett kept his head fairly still, giving the slightest shake. “Wednesday? Thursday?” Brett smiled and looked up to his side. Thursday. He was right.
Two: Jade and Brett have a sweet relationship. Although Jade has moved out and there’s an age gap between them, they seem to gain energy from each other like best friends do. There’s an instinctive smoothness to their communication.
Three: I have a lot of respect for any parent of a child who has special needs, who strives for inclusion and their child’s independence. I admire Lynn’s thoroughness of thinking through decisions that Brett and the family have had to make. At one point, professionals had proposed the idea of Brett using eye gazing technology to spell. I’ve met a couple people who use this technology. It is remarkable. However what I did not consider when these people were spelling with their eyes in front of me, was the lack of human connection. The screen which tracks the pupil’s movement is inches away from the face. The person using the device can’t look away in the midst of a sentence; otherwise the machine will have to recalibrate to track the pupil again. Imagine having a screen inches from your face. You wouldn’t be able to see your teacher, or look up when you’re talking to someone. I understand why Brett and his family decided not to go with eye gazing. I’m surprised that I haven’t heard anyone talk about this before. Eye gazing is brilliant technology (which I’m sure is great for some people), and someone who becomes proficient and practised can use it efficiently; however the lack of human connection is a huge trade-off.
Four: Jade raised over a thousand dollars to go towards Kilometres for Communication. There was a fundraising breakfast, a coat check at a college dance (the one Brett went to), and a free concert at the where the performers spoke about alternative communication in between songs. From what I gather, at the fundraising breakfast, all the seats had tips about communicating with people who speak in other ways. An educational breakfast is a better way of putting it. Jade, I am so thankful for the initiative you took and the effort you would have had to put into making those events happen. It takes a heap of charisma and creativity to get people on board to make such events a success.
Five: I was totally shocked to learn that Brett receives his communication services from the Holland Bloorview Centre in Toronto, where Kerr (my brother), used to receive his services from. Once a week Brett and Lynn Skype with staff at Bloorview (including Laurel Robinson, who initiated the Kilometres for Communication Holland Bloorview event) who give support and programming assistance. Brett ended up receiving his services from Holland Bloorview because what Brett needed wasn’t offered by any program or centre in PEI. The island only has a population of 141,000 people, so it’s not a huge surprise that its AAC services are dismal. Using his yes and no, Brett wrote a letter with his family to the folks in Toronto at Holland Bloorview, explaining his situation and requesting their help. They were touched by his letter, and approved his request. Brett was very lucky to receive this out-of-province assistance. There are many people who live in areas with little or no services, who aren’t as fortunate.
Jade had to leave our breakfast to go to work. Brett, Lynn, my mom and I had a little walk around downtown Charlottetown. A lot of people seemed to know Lynn and Brett. I couldn’t tell if it was the friendliness of the area, or if I was strolling with popular people. Perhaps it was a bit of both. We ended up back at the RV, which my mom and I left parked at the Charlottetown Yacht Club. Brett thought it was really cool.
I’ve mentioned this many times before. Our RV is a rental. It is covered in goofy photos. I despise these photos, especially the children peering curiously out of a fake window. Brett thought it was a riot. I think he found it amusing that we were driving around in that thing.
We got a photo together in front of the gas-guzzling beast.
The rest of the day was driving to the campground near the Confederation Bridge and working to catch up on about 9 days of blogs.
It was a hot muggy day. I wouldn’t have minded cycling today, but there was still tons to catch up on. I slept in; sort of. My tent got too hot to stay in at about 10am. That’s an ok sleep considering I got to bed at 3am.
I spent the rest of the day uploading photos, editing, doing emails, and reorganizing and tidying the RV after 2 weeks of a hectic schedule.
In the evening, I went for a walk when the tide was low. I saw lots snails and crabs. I had 10 minutes of amusement watching them. I didn’t go too far out. Every time I took a step, the clay suctioned my flip flop, so the walking was slow.
This was the second of two rest days in a row after getting ahead of schedule. I’ll be in Truro tomorrow and Halifax the day after. I don’t have any flexibility in my schedule about when I have to be where, so I cashed in my rest days. The extra rest was much needed. Most importantly, I’m finally on top of my blogs.
More to come! The next three days will be quite eventful.