The View From Here

Skye and Kerr at Rick Hansen's 25th Anniversary Relay

It feels so good to be home, and to be reunited with Kerr and Burns. For a short time it was wonderful to have the whole family together before Skye went back to the University of Waterloo in early September. We’re looking forward to his return for the holidays.

I have committed to pacing myself. The three months on the road were wonderful, but demanding and exhausting, and they followed two years of preparation for Kilometres for Communication, in addition to a hectic work schedule, our human rights case, and the ongoing challenges that sleep deprivation, Kerr’s ongoing seizures, and the sudden unavailability of attendant care presented.

After months in an RV, home feels luxurious with interior space to move around in, with water we can drink out of the faucet, with phones and internet that are predictable, without worries about how full the gray water and black water tanks are, and how empty the propane tank is. Home, Sweet Home!

The three months on the road have given us plenty to reflect upon. Of all the experiences we had, I’m not exactly sure why I want to start with one in Nova Scotia when we were parked in a campsite with a beautiful view of distant ocean. I was looking out at the water as I worked at the computer when a big pick-up truck backed up from its spot a few campsites over and parked directly across the road from our RV, completely blocking our view. The pick-up truck owner then proceeded to build a fire in close proximity to the spot where his truck originally had been parked, and sprawled out his legs as he comfortably lounged in a lawn chair that was now parked where his truck had been. He obviously was enjoying the view which Skye and I could no longer see.

I meandered over to this sprawling, lounging camper, smiled, said a friendly hello, and asked him if he would mind moving his pick-up. He responded in an equally friendly way, and said with genuine surprise, “Oh, it never occurred to me that my truck might be blocking someone’s view. Sure, I’ll move it!” Hmmm…it had never occurred to me that it might not have occurred to him that his truck was blocking our view.

I’ve been thinking about how often I’ve been surprised by what has never occurred to people about Kerr: that he has feelings, and they can be hurt; that he wants to be accepted, understood, engaged and respected (like anyone else); that he needs to be addressed directly; that he is extremely sensitive to people’s feelings and when someone who meets him or is getting to know him feels uncomfortable, that Kerr responds with equal or greater discomfort; and when that happens, his most common coping strategy is to withdraw. I have come to the conclusion that sometimes—not always—people’s exclusion of Kerr arises purely out of a lack of awareness and experience.

I keep reminding myself of what I didn’t know before Kerr came into my life. What is obvious to me in 2011, once was frustrating and mysterious. Now that Kerr has AAC (augmentative and alternative communication), he is able to do a great job of informing and educating people who take the time to get to know him. There are many situations, though, where there is so much going on—conversation, ambient sound, other environmental factors—that Kerr becomes overwhelmed and withdrawn. It is helpful and wonderful when people are comfortable talking to Kerr, and they are sincerely engaged in conversation with him. I realize, though, that this can be challenging when people just don’t know how. Often, when I’ve tried to make suggestions, it creates social awkwardness. At other times, the conversation is flowing, Kerr is overwhelmed, withdrawn—and excluded. I always feel badly when this happens, and I feel even worse if I haven’t done anything to assist him and to assist others in understanding him when he’s not in a position to do so for himself. I’ve often caught myself absorbed in conversation with a group of friends, but aware that Kerr has slipped deep inside himself because we have not included him. If it’s a small group of people who know Kerr, we can work together to correct the situation, but if it’s a larger group of people who are not particularly sensitized to Kerr, I feel like I’m swimming upstream. After everyone has returned home, I’m left feeling conflicted—pleased about the flow of conversation, but sad and guilty that Kerr has once again been left out.

I love it when people really want to know Kerr and how he communicates, or when they feel unsure, they ask us, so we can help. It is especially wonderful when they realize that Kerr is truly like the rest of us in all of the most important ways. When others talk from the comfort and knowledge of that perspective, Kerr feels and knows it, and it makes a big difference.

Knowing Kerr keeps widening our perspective, and there is so much more to see and understand when the view is panoramic.

Gail

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Catching up in Hope, B.C.

May 23, 2011
It is hard to believe that it is only 17 days since we left Toronto, and 14 days since we began our drive across the country for Kilometres for Communication.  Having come down with a wicked cold which quickly turned to bronchitis, I’ve had to conserve my energy as much as possible, while at the same time driving about 700 kilometres a day on the journey out west, learning how to drive and operate a recreational vehicle (hmmm-black water, gray water, fresh water, propane—and how wide is that one-lane bridge, will my mirrors be clipping those pedestrians, and where can I park this monster?), dealing with the vagaries of unpredictable cell phone reception and internet, while taking care of many other daily tasks, all with my energy on low volume.

It has been wonderful, exhausting and exhilarating.  I feel honoured to be Skye’s and Kerr’s mother, and grateful and in awe of the generosity of the many people who have already made Kilometres for Communication a moving and successful campaign.  While this is a public education and fundraising campaign, it is also a campaign about human connection, synergy, and inspiration. There are people all over Canada putting their hearts into awareness, education and fundraising events.

We are also hearing from many families who have been inspired by Kilometres for Communication. It can get very lonely, not just for the individual who speaks in different ways, but it can also be isolating and painful for families who experience their family members being misunderstood, segregated and excluded in so many ways and in so many circumstances. There have been many times when we’ve spent an evening with friends, and I feel sad because in the hurry and flurry of socializing and entertaining, we haven’t been able to ensure Kerr’s full inclusion and participation if he’s without a communication assistant.  Conversation is moving rapidly, and Kerr gets left out if there are more than a few other people involved and we are the only ones paying attention to what Kerr thinks, feels and wants to say. It’s wonderful when everyone makes Kerr’s participation important. All of us slow down, and there’s a different feeling to the whole experience. So I imagine families are inspired by Kilometres for Communication because it brings hope—for more understanding, for more possibility for communication, for more inclusion, and for networking among “Cool Communicators”  (I think this is a wonderful way to describe people who communicate in different ways) and among families.

Before we left Toronto, Barbara Collier of Augmentative Communication Community Partnerships Canada (ACCPC), asked me to spread the word about their “Proposed Communication Bill of Rights for People who have Speech and/or Language Disabilities” (http://www.accpc.ca/BillofRights.htm).  Please take a look, and tell ACCPC what you think about it before July 8, 2011.

I’m not sure I’ll ever catch up with all there is to do, but as I am writing this, I am sitting in our rented RV, surrounded by snow-covered mountains, glad to be on this journey.

Gail