Learning to let go with love and confidence

Thanks to Donna Thomson for this guest blog post in The Caregiver’s Living Room:

My son Kevin is 20 years old. Kevin has Mowat Wilson Syndrome, a condition that involves developmental and medical challenges. He is non-verbal (although he communicates well with his iPad), and he has motor and processing issues. From a physical care perspective, Kevin can do some things on his own, but he requires physical support for many of his daily tasks.

This past Sunday we dropped Kevin off at camp for the week. Now his third time at camp, he walked up to the aisle to the stage when his name was called, showing Kevin’s comfort and sense of belonging there.

It took us many years to be in a position for Kevin to go away overnight. Sure, he had had slept over at his grandparents over the years, but never with people we (he) didn’t know.

When Kevin was quite young, we worked with a behaviour therapist who coached us to introduce nights away for Kevin as soon as we could, preferably no later than 16. New settings would teach Kevin that it was okay – even fun, if we could get that far – for him to be away from us. To this day I hear the therapist’s words, and though we didn’t understand it at the time, this coaching was more about teaching my husband and I to learn to be away from Kevin.

Yet, it still took us many years to be in a position for Kevin to spend the night away. We certainly didn’t seek it out, and sometimes even felt guilty about it. So, when the opportunity came up, saying no wasn’t really an option.

At first, Kevin went away for only one night, and then two the next time, eventually building up to being away for a week of summer camp. A few weeks before Kevin’s first time at camp, the school sent a social story about, “what to expect at camp,” with photographs of the facilities and activities there, to introduce and orient Kevin about was ahead.

When Kevin prepared to go away to school camp for the second time, a year later, he was very excited. This time around, what I learned was unexpected. Kevin brought me his camp social story five times a day, every day, three weeks before the trip. He wanted to look at the photographs and talk about who was going to be there and what they were going to do. Not only did he want to go, I realized he was telling me how much he needed to go, knowing how much fun he would have.

You might wonder what Kevin going to camp has to do with our roles as his caregivers. Here is what I would tell you. Meeting Kevin’s needs each day, although not always easy, is a day that speeds by and is filled with tasks and considerations. Stepping away and letting other people support Kevin is an entirely different exercise. It is odd not to know what he did for a day, let alone an entire week. When he is away I most often fall asleep wondering about his day. I remind myself though that as a mother of a 20-year-old, it is a perfectly typical moment not to know all the details.

Three years later during Kevin’s time at camp, we focus on ourselves and our other two children. We eat out, wake up when we want to, go for walks, see a movie and treat ourselves to a week of doing what we want and when.

Last year, during the early morning two-hour drive to pick up Kevin, I remember asking my husband if he thought Kevin missed us while he was at camp. When we walked into the chapel with the entire camp watching the end-of-camp slide show, I got my answer. The photos showed Kevin, and every other camper and counsellor too, laughing and dancing and swimming and painting shirts, and eating and sleeping and acting silly at the campfire. It is not clear who was having the most fun: the campers and their friends or the counsellors who take a week off work to attend or the therapists who give a week of their four-week summer vacation, or the mom who now helps run the camp as an old-timer who had attended since college, or all the students who are there to help. For this one special week, this group becomes family and they look after each other.

It is the most beautiful form of care I can imagine. Kevin didn’t miss us. He was too busy having fun.

An iPad gave my son with special needs a voice and changed his life

Thanks to The Guardian for telling Kevin’s iPad story:

For most of us, our voices emanate from our own vocal chords. For Kevin, our 20-year-old son with Mowat Wilson Syndrome – a developmental disability – his words are battery-charged, delivered by an app and wrapped protectively in royal blue silicone. And we love his voice.

By the age of two, we knew that Kevin had severe language issues. We held onto the hope that, by age 10 – an important milestone in speech development – he would have words with which to communicate. Perhaps it was naïve on our part; it didn’t happen. When he was 13, we accepted what limited progress he had made, stopped thinking about what he could not do and focused on the everyday things he could achieve.

Kevin always had the desire to be understood. He is driven to connect with people and he always used whatever means he could. Even before the iPad arrived, we had helped him learn sign language and surrounded him with pictures and other visual items that he could use to get his message across. But the results were haphazard at best.

Even though Kevin learned many adapted signs, most people he wanted to talk to didn’t know his language. Given how restricted his communication was at the time, a little sadness would sometimes creep into our lives. We knew we had a boy with a story to tell and no way to tell it.

Then came the iPad. Life changed slowly at first for Kevin, and then for our entire family. Through the dedication of his school team, every day new icons and words are added to his vocabulary. At more than 1300 words now, the Proloquo2Go app is the home of Kevin’s iPad voice. Built within his app are 35 pages, most with 36 words, represented by animated or real-life picture symbols. Voice output words and phrases are associated with each of the symbols. Kevin navigates these pages to share what’s on his mind – almost always with a stop at the people and activities pages.

This morning, within moments of waking, Kevin flipped to Proloquo2go and browsed the talk buttons. The iPad voice greets my husband and I every morning, too, as Kevin stands at our bedroom door pushing the buttons to tell us his plans for the day – what he will be doing and with whom. A morning ritual, Kevin reminds us he wants to wear a nice shirt – especially on the days of his internships, a detail we would not have known mattered to him before. In the afternoon, Kevin is excited to tell us news of the day.

Any sadness we once had has been replaced with pride and often amusement about some of Kevin’s unexpected interjections. Once, when I was talking about how Kevin uses his iPad at school, Kevin reminded me he uses it for his schedule, helping him manage his day more independently. After speaking on behalf of Kevin for 20 years now, filling in the words we think he wants to say, he now uses his own words to tell us what’s on his mind.

Kevin is the author of his own story every day. With his iPad voice, he is funnier than ever, serious and intent when he needs to be, and sarcastic or “frustrated” as he will tell us if things don’t go his way. For a guy who doesn’t speak a word, this voice is clear.

I remember when we heard Kevin express his very first emotion. This past season, as his brother was loudly lamenting a New York Cyclones hockey team loss, all fussing stopped when we heard Kevin’s iPad voice tell us “I am having a bad day,” on behalf of his brother – a phrase that was programmed into the iPad so Kevin could learn to express how he was feeling. That he could tell us how he thought his brother was feeling went beyond our expectations. (The day was great after that.)

Today, with three years of iPad-speaking under his belt, Kevin is a changed guy. We saw his most profound communication growth at 19 and 20 – something we could have never expected. The changes we see go much beyond the words. Nothing for Kevin has been as energizing or confidence-building as sharing his thoughts.

Kevin can now communicate with strangers, for example, something he could have never done before. The app helps him ask questions to people, like the grocery store clerk, about the location of a favorite food. But it also allows him to share his adventures with friends.

On Monday mornings, we load his weekend photographs to his Instagram account and his Calendar 365 app. It is a very common sight now to see Kevin and a friend looking at photos and videos, sharing a connected moment. His photos and videos of activities, family and friends are precious and let him re-live his favorite moments. As the years go by, Kevin will find photos of a holiday in anticipation of what’s to come. For the rest of us, we might find ourselves humming a song from camp, for example, that Kevin has played so many times. These experiences help us get to know who Kevin wants to be and reminds us of all the things he can do. Down the road, as Kevin and his friends graduate, Instagram and other social networks will be a way to stay in touch, much like how other people his age enjoy the platform.

We are so grateful the iPad helps him stand tall and be heard. People with a “special” someone in their lives know what they have to offer. Others around us and in the general population sometimes get it, but many times they don’t. They tend to associate speech with ability.

These days, when Kevin speaks, people listen.

Italy, the highlights

The Sharmas took to the skies this summer and together we spent 11 days touring Tuscany and Rome. We fell in love with Italy, and, of course, have dreams of returning. The best part of the whole trip, and what I hope is captured in these photos, is how relaxing and revitalizing it was to take time away and spend it together, drinking coffee, sipping wine and (usually) laughing at the day’s adventures.

Each day is remembered by where we ate gelato, the kinds we each had, and who scored the best pasta of the day. A few days in, everyone’s favourites became clear: for Vikas I think it was driving the switchbacks of Tuscan roads; Sarah loved the regional wines and finding great restaurants each place we visited; Kevin, surrounded by his crew, ate more pasta than he could have ever imagined; and Scott was thrilled to ride a bike all over the grounds at La Campagna and win the Yaniv card tournament (beating his sister by one game) we played each night. Although my cappuccinos were near the top of the list, my very favourite moments came wherever we happened to be, and I could hear my children and husband laughing out loud at whatever seemed to be funny.

Waiting for the restaurant to open one evening, we sat in this quiet nook, looking down on a Tuscan valley, listening to Vikas contemplate the local traffic, as the Italian nonnas came out to cool down and have an evening visit.

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Spectacular scenery aside, Kevin is happiest when he has his crew.IMG_0432

A bench setting seems to makes us smile. Didn’t think of it until now, but somehow it supports the family trend.IMG_0448

Same place, different bench showing off three pretty grown-up children we are lucky to call our own.IMG_0424

After many nights of a beautiful day’s end, I wondered if the locals ever tire of the view. Somehow, I think not.IMG_0451

Thanks Hither and Thither for your recommendation to visit Osteri il Grattaciello in Siena. Probably our most authentic Italian meal, Sarah knew it was the perfect place to enjoy a local lunch.IMG_0355

With the sparkle in his eye, I think that Vikas learned that every vacation should include wine at lunch!IMG_0353

Rome will be remembered for its beautiful fountains and photo settings, enjoyed by us as backdrops for photographs and to refill our water bottles (and the occasional splashing at the less busy spots); exactly what was needed in the 39 degree heat.IMG_0842

In my mind, Italy should be filled with colourful geraniums, and it lived up to my expectations.IMG_0245

The historical Rome became known fondly as the “Mr. Russell trip,” Scott’s history teacher who inspired in him a love of learning about days long past. Caught here is Scott’s pure joy as he experiences the Pantheon for the first time.

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To say that I loved the the wrought iron window covers and balconies is a bit of an understatement.IMG_0242Hot chocolate here as a change of pace from the days of having your very first grown-up cappuccinos.IMG_0741

We had to ask. Tourists seem to love it: the granita or Italian equivalent of whipped cream for breakfast, I mean iced coffee.IMG_0825

Sibling love, day after day, I’m not sure I could ever get enough of it, here…IMG_0237

and here…IMG_0819

and here!IMG_0881

Thanks Italy!

A Laughing Party

Last Thursday Kevin turned 18…a milestone.

Kevin anticipates his birthday like no one else I know. He blows out pretend candles for an entire week before the day, wakes up several hours earlier for many days ahead, plays the birthday song on his iPad in case we might forget, and hauls out every photo he can find to check out who he will see.

Maybe it is the fatigue from the hype and the preparations that set in, but for me there is usually  a “what if”part of the day. It can catch me off guard because I don’t tend to think in “what if” terms about Kevin, but on his birthday I wonder. What if Kevin could talk, could read, could write? If he had gone away to school this fall like many other kids his age, where would he go, what would he study, how would he act?  Would he play hockey or basketball or ride the horses that he loves so much?

Eighteen brings about a whole new category of wondering and thinking about how to plan for the future, so much so that I felt like Kevin turning 18 would mean many mixed emotions for me.

The lead up to the big day started with a celebration at the cottage. Kevin entertained us all with his belly laugh as he was surrounded by his favorites: grandparents, aunts and uncles and cousins; horse magazines, chips and dip, tomato sauce and pasta; good food and cake with lots of candles that you blow out four or five times.

The New York celebration began at a school with a classroom party with cupcakes baked at school from Cafe Rebecca. The weekend party had us all scavenging through Carl Schurz Park counting the park benches, visiting Peter Pan, and finding the jogger who would kindly pose for a photograph so we could check that last box on the list. More cake and more candles were blown out with the help of friends and family.

Attending the Autism-friendly performance of the Lion King on Sunday was a perfect end to the weekend. Kevin loved the rhino, elephants and birds as they walked down the aisles. I loved that he could share the occasion of a theatre production with his brother, cousins and Grandma.

Thomas, a friend of Kevin’s, often remarks in the middle of a gathering that we are having a LAUGHING PARTY. It has become a favorite expression because it tells me that not all parties are laughing ones and they should be. From such simple words, I am reminded to enjoy the simple pleasures of a laughing party.

Kevin’s month-long birthday was a laughing party beginning to end. I wondered about none of the things I expected. Instead, I thought of where we’d be without Kevin’s goofy sense of humor and his love-of-life laugh. I felt thankful for the support we count on from family and friends and his team that challenges him at school. As it often does, what crossed my mind is when I came to realize that from this world of disabilities emerges a group of people with amazing spirit, determination, perseverance and ability. With many more actions than words, Kevin draws us all in because there are many more very important laughing parties to plan.

Happy Birthday Kevin!

A New York Kinda Day

Today was the day I felt a bit like a New Yorker. Living in a city filled with tourists, there is a clear distinction between those who live here and people who visit. For most of our first year, I felt more like a visitor than a dweller: more things in day were new to me than were familiar. So much so, some of my first year’s memories are captured on the days I felt could navigate and blend in to this crazy magnificent city.

It is the everyday, most mundane tasks that help me feel like I’m starting to have a better sense of the flow of the city. Not being a lifer, and coming from another country at that, means I am more in-tune with the subtle shift as I’m upgrading to residence status, yet my newness lets me see the humor and uniqueness in these distinct NYC  moments.

Today, my particular sense of accomplishment comes from a lineup of very simple events. Navigating NYC is its own very particular type of exercise, so much so that I usually feel that I’ve done well to accomplish one task at a time. In practical terms, this means I can go from point A to point B and back, but adding an unexpected point C or even a point D is unlikely, if not impossible. In other words, it has taken me a long time to connect the dots and amalgamate the different bits and pieces of the city.

I connected the dots today. The day began with me needing to go to the Social Security Office  to apply for my card, a place I’d been before and one I knew I could get to by taking the 2nd Avenue bus. The bus didn’t come for a very long time. The comic relief was provided by a disgusted older man who would flip the bird at the Express buses as they drove right by (three times)  and from another guy who was weirdly smiling at everyone (my NYC friends laugh at me when I smile at people too much). When I finally got to where I was supposed to go (and the exact place I had been about a month ago), the office had changed location to Fulton Street, almost as far downtown as possible.

So, I gave up temporarily, took another bus to Kevin’s school and then walked the last two blocks to a meeting there. After the meeting, I walked to Union Square with a friend, got on the train to go to Fulton Street. Got off the train in search of Williams Street and the Social Security Office only to be greeted by the craziness of the Financial District with police and construction everywhere and the chanting of the Occupy Wall Street protesters. I went to the Office, got my card, took the train home, walked to meet Scott at school, jumped in our car, picked up a team-mate, this time without driving in circles for 20 minutes in an attempt to drive in the right direction down the one-way street.

In between, the most stunning moment of the day came as I was headed down Fulton Street in full view of the new World Trade Centre. From this perspective, its magnitude and sheer presence was almost overwhelming. I could see how it towers over the financial district and the 9-11 memorial in the most protective, “I’m here” way. Not yet completed, it is already stunning.

All that “knowing how to get where I needed to go” later, I can’t say I’ll be walking down the street eating a slice anytime soon and I’m probably still going to wave thank you after I cut someone off in traffic (a Canadian thing). I still have many moments when I shake my head and realize that I actually live it New York City and I’m beginning to get what that means. By the way, one of the most puffed-out moments of the day came as I wrote most of this blog post on the train. home. Ohhh yaaeh! That’s what I’m talkin’ about!

More than a Walk in the Park!

I walked more miles (kilometers), covering more ground in Central Park in the last 10 days than the entire last year. I’d say easily, but my tired legs at the end of the day told me that my walk-til-you drop NY leg muscles were not what they were before I went on summer holidays.

Central Park is one of my favorite places in all of New York City. You can feel its elegance and playfulness as the sun rises first thing in the morning, shines brightly in the middle of the day, and glows magnificently with city lights as dusk turns to darkness.

No two visits feel the same.

Last week, Kevin and I met his friends at the boathouse. Anywhere near the boathouse, you can’t help but watch the people rowing the boats in the pond, somehow the ones who seem not to have ever rowed a boat before based on their attempts to coordinate the oars. On the way to a must stop a the carousel, we came across the bubble man. With some sticks, string and a bottle of dish soap, the bubble man quietly entertains those who care to linger with bubbles of all shapes and sizes, colors and hues.

Off to the carousel to experience that iconic twirl on the merry-go-round, as the kids scheme to pick the perfect painted horse, wait for that special music to begin and hope that this up and down around and around is the longest one of the day. Our ride always seems longer than the last one, part of the magic I think of being the lucky ones to ride with Kevin and his friends.

Our path takes us to an obligatory stop at one of many playgrounds in the park, where we were welcomed with the loudest buzz of children swinging and sliding and not wanting to leave. We stopped at the big swings, which led to a long swing for Kevin and his friends and even a quick swing for the moms, symbolic of our own youthful park days.

No Central Park kid’s tour is complete without a nod to the zoo. A quick visit to the Children’s zoo (where the nice bathrooms are) confirms that cow, goats, and ducks are all well. Stopping to see whether Martie and his Madagascar crew are back will wait for another day, as will the need of my children to repeat the movie’s most famous line (at least at our house), “if you’ve got poop, fling it now!”

My adult-only days in the park that followed the next week were completely different adventures. They merit their own tribute another day. For now, I smile as I think of some of my own memories of the days as a kid in the park and at having created some new ones at the grand-daddy park of them all — Central Park. It’s a Sharmed Life!

Out the Back Door

The odd red maple tree branch peeking out of the trees at the cottage tells me that summer is almost over. Today is the last day. Despite a last summer project that involved painting the Canadian flag on the floating dock, there is no denying the fact that today is clean-up day. Our summer this year has been full of cottage time, New York parks and adventures, visitors and family, and making the most of having Sarah and Matt with us for three months that came and went so quickly.

At the cottage, one of the constant sounds is the endless slap, slap, SLAP of the screen door as each of us go in and out at least 50 times a day. When we lived in Manor Park, the in-and-out pattern was no different. Now that we live in an apartment in New York, I realize popping out the back door is a way of life for us and probably for most Canadians.
Besides summer’s end, this post marks the end of our first year living in New York City. If I was to think back on some of my observations about it, I would comment that certain ways of life for New Yorkers hit me out of the blue. As I try to take in this unique way of living, there are certain “I get in now” moments.

Working at home for the past year, I often get up from my desk to stretch and look out one of the windows of our apartment. What I usually see on our block is doormen hailing cabs, and people walking their dogs, taking kids to the park, carrying takeout to eat lunch at the park, with chairs, towels and books. It all looks completely effortless, so much so that I finally realized that the ease of this activity comes with it being a way of life. For New Yorkers, going to the park is our equivalent of popping out the back door. Because most New Yorkers, including us, live in apartments, all the beautiful parks around the city become everyone’s back yard. These parks are enjoyed by millions in a way I wouldn’t have understood before living there.

With Sarah and Matt, Kevin and Scott, we spent our fair share of time in the park this summer. Nobody logs more hours in our “own” backyard, Carl Schurz park, as Kevin. Besides loving to see the tug boats, the kids and dogs playing, this summer he enjoyed arts and crafts and music programs. While we missed the outdoor movie (one of my defining New York scenes from a movie), I liked hearing the big band and our friends commented on the hearing the jazz ensemble as they headed out one day.

Our Central Park memories include walking through the park and around the reservoir, talking a break on the Great Lawn while watching a random baseball game and Sarah and Matt in running races. Around us sat a group of teens hanging out and what seemed like thousands of people throwing balls and frisbees and having picnics. A blast from the past one day included a stop at an ad-hoc roller derby rink on a very hot day, where some of the moves were impressive and others were just part of the fun.

Another nice memory came on the day we all walked over the Brooklyn Bridge and then relaxed in the park on the other side. After the mandatory lounge on the soft green grass under the bridge, Kevin and Scott had a ride on the carousel and we all loved the ferry back to Manhattan.

As we trek back to NYC tomorrow after we drop Sarah off in Kingston, the happy summer 2012 memories  and photos will have to last us until next time. It’s a Sharmed life…!