Saturday 28 April 2012

A Surprise Reunion

In my book, "The Four Walls of My Freedom", I wrote about the solitary lifestyle of constant caregiving. I wrote about watching, fascinated, a family of birds make their home in our front door lamp:

Outside our front door in Ottawa, we had a black wrought-iron openwork light fixture.  Each spring, a pair of tiny sparrowlike birds called redpolls came to nest in our lamp.  The first year they came, all their bits of straw and string simply fell through the mesh onto the ground.  Annoyed by the mess, we swept up and thought nothing more of it until one day, there on the ground lay two tiny, broken bright blue eggs.  I wept a little, berating myself for not understanding their simple need to have a safe nest for their offspring.  


The next year when we heard their distinctive chirps at the door, Jim cut some bits of cedar and created a floor o the base of the lamp.  Nest building began in earnest, and soon there were four tiny eggs tucked up amongst downy roan feathers.  That year, I watched as the mum kept her eggs warm and the father worried nearby.  The eggs eventually hatched into a noisy quartet of open beaks and soon enough, they were ready to fly.  I sat an entire day, watching in suspenseful anticipation as every redpoll in the area arrived on our pine tree to begin "training" with the youngsters.  By turns, each bird would fly to the top of the lamp, perch there for a second and fly off to the nearby branch.  The young birds had a tricky rite of passage: they had to fly inside the lamp and exit through the a narrow passage at the top of the ironwork.  By dusk, all the birds had left the nest and we could finally turn on the light and resume our life without our temporary tenants.  


These birds, living in my midst, nurtured by us and by the rest of the flock, gave me a certain antidote against loneliness.  I had genuine curiosity about the life in my garden and most certainly, felt "some minute, divine spark inside me."  By this time I had given up on any idea of justice or natural order in the world.  Contained in my garden, I thought, there is transcendence; there is grace.  I began to think that peeling potatoes, raking leaves and mixing cakes were all a sort of prayer.  I began to understand that to be free, I had to have an antidote to despair. (pgs 84-85)


Yesterday morning, we were reading the newspapers when Jim whispered, "Do you hear that?" We stopped and listened.  It was an unusual, but familiar chirp outside our window.  "Could it be?...." I breathed.  We looked into our pine tree and there, among the bushes was a pair of tiny birds - one with a red breast.  We opened the door carefully and there, on the ground, lay a few tiny bits of string along with a few pine needles.  Jim went out onto the lawn in just his dressing gown and slippers - he collected some cedar branches from the hedge and carefully placed them into the lamp.  This time, there would be no broken eggs and hopefully, we would have the privilege of witnessing the birth of a new family at our door.



Nurturing life and helping to create a safe and warm nest IS a powerful antidote to loneliness.  That I know.



Friday 27 April 2012

A Second Trip to Parliament Hill This Week - An Early One!


When Nicholas was about 16, he decided that he was too old to 'trick or treat' on Halloween.  Instead, he wanted to dress in the 'scariest costume he could think of' and hand out sweets to the children at our front door.  "Fine", I said, "I'll get you the costume.  So who is the scariest character you can think of?"

He thought a moment, then answered, "...You, Mum!"  Well, we dressed Nicholas up as me, before my morning coffee.  Now, I hate mornings and I know I look pretty awful before 10am.  So, we put Nick in my dressing gown, a bed-head wig, and we used make-up to put face cream and dark circles under his eyes.  We placed an empty coffee cup on his wheelchair tray and fuzzy slippers on his feet.  He looked almost as good as the Norman Bates' dead mother in 'Psycho'.  Any children who came to our door that night were terrified and many left in a hurry without candy (the more for Nick!).

So this week, when I agreed to attend a breakfast on Parliament Hill beginning at 7:30am, it had to be pretty compelling.  I was not disappointed -  Dr. Janice Keefe was presenting on the future policy directions for Caregiving in the Eldercare of Canadians.  Her talk was part of the Canadian Federation for the Humanities and Social Sciences Big Thinking Lecture Series.  And the basis for Dr. Keefe's remarks was her 2011 Institute for Research on Public Policy report titled "Supporting Caregivers and Caregiving in an Ageing Canada". 



Keefe's research reveals the startling truth about our ageing population:  by 2031, there will be 8.8 million Canadians over the age of 65 and 30% of those will not have children.  Keefe likened family support to the root system of a tree - invisible, but strong and necessary to the life of the whole living entity.   She posed the challenge to governments at all levels to see caregivers as individuals with rights - as 'clients'.  Keefe used demographics to underline the need for a comprehensive policy approach to support caregivers that would span the tax system, immigration policy, national insurance schemes and workplace/employment policy.

I am happy that I got up early yesterday morning to hear some big thinking on the big problem of our ageing population.  I came away thoughtful and encouraged.  I felt encouraged because we have people  who are as smart and compassionate as Janice Keefe working on the file.  She will provide the ideas for policy and then it is our job to advocate.  I will, because my future depends on it.



Thursday 26 April 2012

Eldercare and Surveillance in Nursing Homes

One of my mother-in-law's best friends was a woman called Jean Holden, or "Mrs. Holden", as we always knew her.  Mrs. Holden was a smiley woman with a sing-song laugh and perfect posture.  Mr. Holden, Alec, was always by her side until he passed away, leaving Jean to live out her old age without her beloved spouse to lean on.  The Holdens were natives of Montreal whose children grew up with my husband and his siblings.  The two families were very close.

I knew that the Holdens had a daughter called Janet, but I had never met her.  I knew that Mrs. Holden had tried to live out her old age in Montreal, because for a time she lived in the same seniors residence as my mother.  But residents at my Mum's home must be fully independent and Mrs. Holden's health took a turn for the worse.  So, she moved to London, Ontario to be closer to her daughter Janet.

Occasionally, I receive messages via my website from readers of my book.  A few months ago, I received a message from Janet Holden Brumell, Jean's daughter, and we began a correspondence about Jean's tribulations at the end of her life at a nursing home in London.  Jean had fallen a number of times, a fact denied by administrative at the home and that's when Janet decided to take action.  She placed a hidden camera in her mother's room and began to watch the footage which proved to be alarming.

CTV did a story on Mrs. Holden and Janet's struggle to have closed circuit cameras in Ontario Long Term Care facilities.  I was shocked when I saw this report.  Janet tells me that she continues to fight for the right of patients' families to place cameras in the rooms of their relatives in nursing homes.  Do safety concerns outweigh privacy concerns in the lives of vulnerable people in care?  I think they do.   Should health care professionals be frightened by this level of transparency and scrutiny?  No, I don't think they should.  However, cameras are just one tool for transparency and accountability and in our family, we choose to have a personal support network of friends and family who visit often (most times on a daily basis) and on days we don't visit, we telephone.  I have a good gut feeling about the trust I have in the current arrangements we have for my mother and for my son.  But if I didn't, I would be asking Janet Holden Brumell which brand of camera she recommends.  If families want a camera in the room of their elderly parent in care, I believe they should have one.


Wednesday 25 April 2012

Surveillance for Safety of People With Disabilities - A Good Thing?

Today's Huffington Post reported on a youtube video which has gone viral over the last 12 hours:




When Stuart Chaifetz sent his 10-year-old son to New Jersey's Horace Mann Elementary School wearing a hidden audio recorder, he couldn't have predicted what he would uncover.
The move came in reaction to accusations from the school that his son Akian was having "violent outbursts," including hitting his teacher and teacher's aide -- claims that Chaifetz claims are against his son's "sweet and non-violent" nature.
Akian, who has Autism, returned with a tape containing hours of apparent verbal and emotional abuse from his classroom aide and teacher -- whom Chaifetz identifies as "Jodi" and "Kelly" -- a recording which his father later published on YouTube.
The Feb. 17 recording started with Akian's aide and the teacher, whom Collingswood Patch provides evidence may be Jodi Sgouros and Kelly Altenburg, respectively, based on a previously published online staff directory.
The two engage in inappropriate conversations, like joking about their alcohol abuse and sex lives in front of their students -- all of whom have behavioral conditions and, according to Chaifetz, communication difficulties that prevent them from relaying the conversations to their parents.
At the time of writing this, the facebook link to the story has 109 'likes' and 49 comments.   Every single comment was in favour of the father's actions.  

Parents' gut feelings about something wrong in their child's life are very often borne out after all the evidence is in.  Clearly, it is much more difficult to gather information from a child who is non-speaking or an elderly person with dementia.  But for people who know and love someone with these handicaps,  listening and watching closely offer up clues to what may be awry in caregiving relationships.  

The biggest flag in this story and others I have heard anecdotally in the parent community is a school or other institution that does not welcome unplanned visits from parents.  Open lines of communication and complete transparency should be absolute givens where the care of vulnerable people is concerned. 

In 1995, we lived in London and after two years of intensive conductive education, we were looking for another school for Nicholas.  Carole Greenaway was our educational psychologist and I remember one day visiting a special school with Carole.  We were given a tour of Grove Park and I recall asking about visiting Nick's classroom and about opportunities to volunteer at the school.  On both counts, I was told that parents were unwelcome, but could be accommodated with plenty of prior notice.

Walking back to the car in the parking lot, Carole and I looked at each other and we both made a gesture of thumbs down.  Shaking our heads, we chatted about what bad things could happen to vulnerable children behind closed doors.  

Today, I asked myself whether I would want CCTV surveillance in Nicholas' room.  It didn't take me long to decide that no, we don't need it and we wouldn't want it.  I drop in to visit Nick almost every day.  If I don't visit, I call and Nicholas tells me everything, even though his speech is extremely limited.  My gut tells me that Nick's care is fantastic and every day, I feel grateful.  

But I do not judge people who do want surveillance cameras for their vulnerable loved ones who live in institutional settings.  My next post will be about one woman who tried and failed to get the right to have cameras installed in Ontario nursing homes. 

Tuesday 24 April 2012

Today, Proud to Be Canadian

Today was a special day.  Read my friend and colleague Sherri Torjman's blog from the Caledon Institute of Social Policy to know why....  Sherri, I and other local Ottawa leaders of the disability community helped Senator David Smith celebrate the inclusion of mental and physical disabilities into our Canadian Charter of Rights.  The photo shows me with Senator David Smith and John Archer, the Chair of the Ottawa Rotary Home where Nicholas lives.

Sherri Torjman writes on her blog for the Caledon Institute:


This week marked the celebration of the 30th anniversary of the Charter of Rights and Freedoms in Canada.  It was an especially momentous occasion for Canadians with disabilities. 

A significant turning point in Canada’s awareness of disability issues came in 1981, the International Year of Disabled Persons.  Canada appointed an all-party House of Commons Committee to identify the challenges related to disability and to propose recommendations for change. 

It was the first time in Canada that such an exhaustive inventory had been undertaken on disability.  The Committee produced the Obstacles report, which made recommendations on all major policy issues including human rights, income security, employment, technical aids and devices, transportation and communications. 

One of the most important aspects of 1981 was that it preceded the year in whichCanada repatriated the Constitution.  The British North America Act of 1867 became the Constitution Act of 1982.  The Act was going to embed a Canadian Charter of Rights and Freedoms, which was being drafted.  Several Committee advisors saw the introduction of the Charter as a once-in-a-lifetime opportunity to protect and promote the rights of persons with disabilities. 

The Government of Canada was not keen to include disability protection in theCharter of Rights and Freedoms.  There was no precedent for such a Constitutional inclusion anywhere in the world.  The federal government was worried about being swamped by lawsuits and associated costs − ironically, a fear that demonstrates how much this legislative protection actually was required.

After extensive deliberations, Ottawa made an offer to the Committee.  TheCharter of Rights and Freedoms would include prohibition of discrimination on the basis of physical disability.  Mental disability would not be incorporated in theCharter because the implications were unknown and potentially too great. 

Members of the House of Commons Committee faced a serious crise de conscience.  They knew that this was a unique opportunity to ensure inclusion of disability in the Charter.  How many times in the course of history does a country renew its Constitution?  But they also knew that excluding mental disability from the Charter of Rights and Freedoms would make the Committee guilty of the very discrimination that its members were fighting to overcome.  The acceptance of physical disability alone would have been a hollow victory at best.

The Committee decided to refuse the offer.  The Government was surprised by the response and agreed to back down.  Canada became the first country in the world to include in its Constitution the protection of the rights of persons with physical and mental disabilities.


Monday 23 April 2012

A Video Clip of My Talk at Holland Bloorview

This is a clip of my talk on Amartya Sen's Capability Approach and disability at Holland Bloorview Kids' Rehabilitation Hospital in Toronto on April 10th.  Thanks to Louise Kinross, head of Communications at the Hospital and kudos for her terrific blog BLOOM - a chatroom for all parents of children with disabilities.

Sunday 22 April 2012

Dying With Dignity

I always listen the radio when I'm driving and today was no exception.  I was on my home from visiting Nicholas when I tuned in to a CBC show about life in Quebec called "C'est la vie".  The guests were two provincial parliamentary representatives (MNAs) who had worked for two years on a non-partisan committee on palliative care.  The results of their work was a newly released report called "Dying with Dignity".  

It was interesting listening to these women talk about death and dying.  They had borne witness to so many stories of intractable pain, anger, desperation, joy, release - they admitted crying and sometimes laughing with their constituents.  I had no doubt that these representatives did their best to represent the lessons learned from the hearings and recommend measures that would assist more people have a good death.

In 2005, Nicholas was diagnosed with severe central and obstructive sleep apnea.  His condition was so severe that the medical team suggested Nick might have two months to live, perhaps a little more.  We refused surgery to remove part of the back of his tongue and the placement of a tracheotomy.  We were placed on palliative care.

During our posting in London, our palliative care physician came from a local hospice called St. John's and St. Elizabeth's.  Dr. Chris Farnham was a tall, gangly man who was somehow all smiley and sad-in-his-eyes all at once.  His voice was gentle and his humour sweet.  This was a kind man, but one of strength - Chris was a man of character.  As the years passed and Chris made home visits, prescribing different versions of oral morphine and muscle relaxants, I began to understand the differences between palliative and curative medicine.  The palliative physician medicates, the mind, body and soul.  They do this in the comfort of home or hospice.  Everything is done with comfort in mind.  Time moves slowly in palliative medicine, there is time for message, for chats, for home visits.

Nicholas hasn't died yet and I suspect that he has no plans to do so anytime soon.  But palliative medicine suits us very well.  Now in Ottawa, we have a wonderful doctor who is very like Chris.  His name is Dr. Robert Eaton - a GP with all the qualities of a gentle, knowledgeable caretaker and one who would go to battle for us and win.  He is a personal and a community hero.

The recommendations of the Quebec report "Dying With Dignity" include greater access to palliative care and protection for physicians who medicate their dying patients in order to assist them to die without pain.  Two physicians have to sign their consent for a terminally ill patient who requests assistance to die without pain, even if this speeds their demise.

Some might say that any assisted death is euthanasia and that it is wrong.  I suggest that those people read "Dying With Dignity" and listen to the sadness and wisdom in the voices of the parliamentarians who worked for two years listening to stories of dying - some good and some appalling.

Death is a difficult subject to talk about, personally and publicly.  But it is a necessary conversation and I for one, am glad that some politicians are working on protecting me from a terrible death.  "Dying With Dignity" is a public validation of best practice in palliative care - and palliative care means protecting life with all available resources, and then easing a transition to death as painlessly and peacefully as possible.  I have argued elsewhere many times against euthanasia because I believe it is a slippery slope for people with complex and severe disabilities, but I believe that "Dying With Dignity" is an honest effort to come to grips with some guidelines for helping all concerned have a long life and a good death.

Friday 20 April 2012

Twitter - A Parents' Story-Telling Tool

This is our family....

And this is Canadian Conservative MP Mike Lake - he's looking at his son Jaden, 16, who has autism and is non-speaking.

In today's Ottawa Citizen, my husband Jim pointed out an op-ed piece about Mike Lake and his son Jaden.  What prompted the article was a tweet from Lake that read, "Jaden a bit anxious this AM - heart racing, shaky.  Non-verbal = he can't explain.  20 minutes snuggling w/Dad & smiles back. #autismchallenges."

Not every parent will agree with Lake's conservative politics, but every parent will stop in a moment of breath-held recognition at this glimpse into the poignancy of family life with a non-speaking child.  I am glad that we have ambassadors for our families in all political parties and Mike Lake is particularly powerful in this role.  His remarkable speech to Parliament on World Autism Day, April 2, 2012 is a moving testimony to the love families have for their children with disabilities and how that is sacred to civil society.


Thursday 19 April 2012

Our Family/Our Computer - We Innovate!

Yesterday I wrote about how Facebook can make lonely people lonelier.  But what is the flip side of all this doom and gloom about social media and how can these online tools help people who give or receive care?  Does social media contribute to my wellbeing?

The resounding answer to the last question is Yes!  I am part of a generation that can well remember life before the internet.  In the old days, I subscribed to a magazine called "Exceptional Parent".  On the first pages was a letter column where people would write in about their son or daughter's mysterious symptoms or undiagnosed condition.  Parents like me would devour those letters, scanning for recognition or familiarity that would make us feel less alone.  It was the first bulletin board about children like Nicholas where I would discover the power and comfort of shared experience.

Now, I use Facebook, Twitter, LinkedIn, Blogger, GooglePlus, Pinterest, and email - just to name a few information sharing tools.  I blog and automatically share each entry on Facebook and a host of other linking sites.  I copy and paste my blog entries to neurology websites such as Braintalk Communities and Disabled World.  Braintalk is an old friend and there, in the Child Neurology Forum, everyone knows that Nick had a chest infection last week and that the antibiotics upset his stomach, just as I know about the daily challenges faced by their children.  Facebook allows me to think out loud about my everyday life, but also to share my more political thoughts about caregiving in the 21st century.  Each of these social media sites has a slightly different role to play.  I feel comfortable with Facebook because it allows me to share both personal and political ideas and experiences.  On my home page, you will find links to the new Victoria and Albert Museum ballgown exhibition, but also a personal note of concern to a friend in Iowa who's daughter is ill with the complications of a genetic disorder.

All these tools enrich my life, but do they actually help me and my family in the wellbeing department?  Well, maybe not in a clinical sense, but there IS one social media tool that is essential to Nick's health and social care.  It's called Tyze.  Tyze is an online social media platform that is completely private - it even has a vault to securely store sensitive medical documents.  It's a kind of highly specialized version of Facebook, but with a purpose of serving a vulnerable person at its centre.  The most unique aspect of Tyze is that it bridges formal supports (doctors, therapists) with informal supports (family, close friends).  On Nicholas' Tyze site, we organize his schedule of appointments and ensure that they don't conflict with important sports events in his life.  His GP can correspond with his nurses or me about side effects of a new anti-seizure medication.  When Jim and I took a holiday to the Bahamas a few months ago, we checked Tyze every day to for a glimpse into Nick's medical profile as well as his leisure activities.  Last year, Nick posted his Christmas wish-list on Tyze and family or friends 'claimed' gifts to ensure that no duplicate presents were purchased.  We use Tyze as a tool to coordinate medical care, but many others Tyze users employ it to help their vulnerable relative to be more involved in their community, either through social clubs, churches or informal visits.  Therapeutic goals can be monitored, tasks assigned, schedules made and information shared with loved ones and professionals alike.  Tyze is a Godsend for anyone giving or receiving care and that's a fact.

Social media sites are tools.  Ultimately, they are in someone's hand and how they are wielded will depend entirely on the individual.  I am fascinated by the possibilities information technology has to open our communications with people near and far.  I pay attention to my online friends and work at my relationships with them.  Very rarely do I lazily click 'like' on their post when I can make a thoughtful comment.  My internet friends ARE my real friends.  For me, I look forward to more, not less, innovation in allowing me to communicate with people I care about.  I have managed to create a safe, caring neighbourhood in my online communities because I work at it.  I guess I am just one of those people who is not lonely online or off - I'm happy and I'm grateful for my laptop.

Wednesday 18 April 2012

Facebook - Good or Bad?

Stephen Marche's article "Is Facebook Making Us Lonely" in the May issue of The Atlantic pokes a sharp stick at social media and its effect on our sense of social fulfilment. Marche asserts, "What Facebook has revealed about human nature—and this is not a minor revelation—is that a connection is not the same thing as a bond, and that instant and total connection is no salvation, no ticket to a happier, better world or a more liberated version of humanity."

 Caregivers know a lot about the difference between loneliness and solitude. Solitude feels delicious - it's when someone you love and trust takes charge of your loved one and brings him or her somewhere fun, somewhere safe. You, as caregiver, can have a long bath or read a magazine. Solitude is your chance to drink the tonic of silence with no one calling for your help. But giving and receiving care can be lonely because the lifestyle is, by its nature, one of isolation. One mother I know from the parent bulletin boards has not been out to dinner since 1997. She and her husband look after their 42 year old son in a home hospital setting. Their older son, also affected by the same genetic disease, passed away at the age of 38 four years ago. I feel that I really know this woman, even though I have never met her. To me, she is a real friend. Perhaps that is because our online relationship is not driven by narcissism, but rather a shared experience of caring for our sons with disabilities. When we talk online, we discuss the perils of severe constipation or the side effects of anti-seizure medications. For my online friend and me, the internet gives us a bridge for conversation about our unique, shared experience.

 But there are limitations to Facebook and other social media sites too. For people moving to a new city or country, Facebook and Skype can sometimes hinder settlement. One friend, an expat in England, wrote "I found that using Facebook made me very homesick when I moved here. I have seen several young people spend all their free time on Facebook only to get super discouraged and move home without truly making a go at being in a new city..."

 Last summer, my daughter Natalie worked as a research assistant to Daniel Miller (author of "Tales From Facebook", amongst other fascinating works exploring the effects of social media on our real time relations). For his newer research project, Dr. Miller was investigating whether Skype helped or hindered the settlement process of new immigrants. That research is still ongoing. One thing is for certain - lonely people will not be less lonely if they use Facebook. People who are not lonely and who use Facebook or other social media sites to enhance their real time relationships report high satisfaction levels with both their online and their real life friendships.

 But the inadequacy of Facebook as a tool for intimate communication is starkly illuminated when serious problems befall the real lives of people.  When a friend in London was diagnosed with cervical cancer, she reported that Facebook and Skype were too painful to use with her closest family and friends back home. Nothing short of an embrace would heal her frightened heart, so she closed her online accounts and told her children that she needed them to visit.

 So, what kinds of social media can be truly helpful to people who give and receive care? That's the subject of tomorrow's post.

Sunday 15 April 2012

Part 2 - The Healing Power of the Arts - This is Music!

http://www.youtube.com/watch?v=NKDXuCE7LeQ

Watch this clip to understand how music can heal, can inspire and should be encouraged at every level of society.

We know we are alive through the arts and find a way to share our experiences of pain and joy. Let's make sure that we pass that message along!

What Makes Me Furious - and it's Not Disability

What makes me really, really angry are people who commit a sin against the noble pursuit of beauty and engagement in public spaces. Last week, there was an article in my local Ottawa newspaper that caught my eye. "Flower Power Struggle" was the title. Apparently, an Ottawa couple who own a flower shop regularly decorate the sidewalk adjacent to the store with rose petals, in an effort to attract customers and beautify the street. Residents have been enjoying a small trail of fresh petals to the doorway since the shop opened ten years ago. But last month, the owners of Bloomfields Flowers received a 'cease and desist order' from the City of Ottawa. Apparently, someone complained about the 'debris' on the sidewalk and bylaw officers agreed with the Scrooge-like complainer. "What is the matter with some people!", I raged to my unsuspecting husband.

But my spouse knows that I really care about streets, beauty, conversation, inclusion and the idea of neighbourhoods. When we lived in London, I had the pleasure and privilege of being a director of the London International Festival of Theatre (LIFT). LIFT is a festival of contemporary theatre work and often, it doesn't look like theatre at all. One show that I remember with a poignant mix of memory, intimacy, and kindness was an 'experience' called "Beloved" by an American artist called Nicole Blackman. The artist had taken over a slightly derelict, but still beautiful National Trust home called Rainham Hall on the outskirts of London. After a long train journey to the very eastern edge of the city, I found my way to a stately home. The path leading from the street was strewn with blue rose petals and a sign beckoned me to enter silently, following the trail of roses. Another sign instructed me to pick up a stone from the flower bed and put it my pocket - apparently I would need it later. I entered the great house alone and followed the arrows and petals to the first room. There, a man stood alone and gestured to me to join him. He began to crank an old Victrola record player and gently put the needle down on the spinning disc. He extended his arms in an invitation to dance. We danced and after a few minutes, I was not embarrassed or nervous. I remembered all the dances in my life, especially a father-daughter dance in high school. Next, I entered a room where the artist's own old family photos hung from invisible wire from the ceiling. Each print had a description on the back for me to examine alone - something like "Aunt Dorothy always brought a picnic for everyone to the park". Every room in "Beloved" had something to say about kindness, the love of family, silence, gentleness and intimacy. It wasn't a person who guided the one-at-a-time visitors to this exhibition, it was blue rose petals. When I had experienced all the rooms, I went outside. A little sign instructed me to write the name of someone I had loved and lost with chalk on the stone that still lay in my pocket. I wrote the name of my father on the stone and placed it with others back in the garden.

Art, beauty and thoughtful public engagement is the 'other' great passion in my life. If I could meet the philistine who complained about rose petals in my neighbourhood, I would make him or her experience "Beloved". But maybe they have no loving memories that would spring to life. Perhaps they would have nothing to write on their stone.

Saturday 14 April 2012

Then and Now, Remembering When Nick Was Small

Last week I had the pleasure of speaking to parents at the Holland Bloorview Kids' Rehabilitation Hospital in Toronto. The building is new with a welcoming, light and homey feel to it - certainly very different from the old Hugh MacMillan Rehab Centre that used to stand in its place. Nicholas and I went to Toronto when he was three and four years old. There, we had his first psychology assessment, seating clinics (we received his first wheelchair) and inpatient stays for gastro consultations that came through Sick Kids' Hospital. I walked in to the new centre and was met immediately by a delighted squeal of recognition - it was the doyenne of all community connectors, Louise Kinross, chief of communications for the hospital and editor of "Bloom", a parent magazine about all things disability. Louise and I had been emailing each other for months and we felt like fast friends, but we'd never met in person. We hugged and began to tour me around the facility. My eyes fell upon a bench, placed in front of a window to allow parents to view their children having aqua therapy in the pool below. All the parents were leaning forward, pointing and chatting quietly. I listened for a moment as they compared challenges and triumphs. I was flooded with memories.

It's been a while since we did therapy with Nicholas. We haven't given up hope for change in his abilities, but we accept who he is and we no longer feel the urgency of that desperate love of parents for their young children - children who hold so much potential for improvement. We are in the middle age of our parenting. But seeing the other families and hearing their stories at my talk, I wondered whether we should be more hopeful for change in Nicholas. I looked at the weary faces of parents, young and old and I thought about our life. There, at Holland Bloorview, there was so much help - so much hope for change. Had I given up on all that?

The morning that I packed and prepared for my drive back to Ottawa, Louise met me and said, "Before you go, I want you to meet Dr. Tom Chau. He's the Director of Research here. Have you heard of him?" I answered that yes, I had heard of his amazing work in using movement and music to facilitate communication in children with very severe impairments. Louise guided me up to the fourth floor and knocked gently on Dr. Chau's office door. A good looking, slim and well-dressed Asian man introduced himself and Louise left us to chat about communication technology. The doctor explained about some of his new inventions and asked about Nicholas. I hesitated a little - did I want to enter this territory of hope, therapy and worry again? I breathed and began to tell Nick's communication story of computer switches, auditory scanning, coded verbal and non-verbal messaging that is his way of talking. Dr. Chau nodded and I made a decision. "Can you help Nicholas?" I asked. "Of course, he is 23 years old and you work with children", I added perhaps too quickly. "Of course we can help Nicholas", the doctor said. We work with all ages when we are researching new technologies." Then he showed me a video of a young man, very like Nicholas, who used his voice to hum in order to prompt the computer to speak his chosen words. A kind of necklace called "The Hummer" sensed the tonal vocalizations of the young man and turned these sounds into computer messages. My eyes widened and I said quietly, "Could Nick wear that and use it in bed and in his wheelchair?" I asked. "Yes, sure", Dr. Chau replied. I began to feel the old excitement of potential and positive change. "I'll write to you and we are definitely interested. Thank you so much!"

I went to Holland Bloorview to tell our family story. People came to hear me and to learn. But it was me who learned from the families there - I tasted hope and remembered.

Sunday 8 April 2012

Blessed Are You - Easter Lessons

Blessed are you who take the time To listen to difficult speech,
For you help me to know that If I persevere, I can be understood.  
Blessed are you who never bid me to "Hurry Up" 
Or take my tasks from me And do them for me, 
For I often need time rather than help.  
Blessed are you who stand beside me 
As I enter new and untried ventures, 
For my failures will be outweighed 
By the times I surprise myself and you.  
Blessed are you who asked for my help, 
For my greatest need is to be needed.  
To put my thoughts into words.
Blessed are you who understand that 
It is difficult for me 
Blessed are you who with a smile,  
Encourage me to try once more.  
Blessed are you who never remind me 
That today I asked the same question twice.  
Blessed are you who respect me 
And love me just as I am  
Amen 
(Anon.)
Happy Easter, Everyone

Saturday 7 April 2012

Come one, Come All - This Tuesday Evening, April 10

I am excited to be packing for Toronto. I'll be speaking at Holland Bloorview Kids Rehabilitation Centre on Tuesday evening, April from 7 to 9pm. The address is: 150 Kilgour Ave., Toronto, M4G 1R8. Thank you to Louise Kinross and her BLOOM blog and magazine for hosting me! All are welcome!

I also have meetings with Mammalian Diving Reflex, a terrific contemporary theatre company that is producing a show about sex and disability called "The Best Sex I Never Had". And then of course, a meeting with my colleagues at PLAN Toronto.

But that is all incidental to hanging out with my daughter, Natalie. She's finishing up her third year at Trinity College, UofT. It's been too long since I've put my arms around her.

Friday 6 April 2012

SEIZURES THEN AND NOW - THE PENNY DROPPED!

When Nick was a baby, he was a terrible sleeper. He would doze off and suddenly, his arms would fling themselves outward, his legs extending and he would scream. We called this his 'startle' reflex and put it down to Nick being Nick. When he was tiny, we found it helped to keep him swaddled tightly, so that the jerks were contained.... I remember that at the cottage, we put a sign on the hallway door, "Quiet, Baby sleeping...lightly!" Any tiny sound would result in a startle and then a scream. It never occurred to any of us that his behaviour might actually be a seizure disorder.

Then, when Nick was about 7, he had his first orthopaedic surgery. It was a lengthening of his heel cords and adductor muscles. The doctor in London suggested casting him afterwards in a 'broomstick' style paster, with both legs open wide and a pole wedged in between to keep the position stable. His feet were cast as well, with his feet at 45 degrees in order to allow the heel cords to maintain their stretch. When Nicholas came home after that surgery, he began to have terrible symptoms, but only during sleep. He would be sleeping peacefully when, suddenly, his casted legs would jerk up into the air and he would scream terribly until we turned on the light and firmly woke him up. During the worst times, this would repeat itself every 3 to 5 minutes. Only during waking hours was he somehow free from these terrible episodes. Finally, Nick became so exhausted and ill that he was readmitted to hospital for telemetry tests. A camera was put on Nick and when the neurologist viewed it, she diagnosed frontal lobe seizures. The surgeon recommended removing the cast two weeks early. When the cast came off, pressure sores down to the bone were revealed on both his heels. Poor Nick, his heels looked like white jelly. We were transferred to Great Ormond St. Hospital and the overnight test was repeated, but no seizure activity was seen on the tracing. Everyone was mystified by the events and we were sent home to have daily nursing visits for almost a year in order to fully heal the pressure sores on Nick's feet.

Fast forward to this year. We now have a diagnosis of nocturnal seizures and we know that Nick's arm jerks during sleep are, in fact, seizure activity. Last night, the nurse reported 16 or more jerky movements AND Nick being disturbed by any small sound or movement.

Sometimes it takes a lifetime of staring at someone you love to understand what is happening to them, especially if that person is medically complex and non-speaking. I can't help but wonder how our lives would be different if we had known to medicate Nick's seizures when he was young. So much of what Jim and I battled was sleep deprivation.... I know that hindsight is 20/20 and that we did our best, but it is bittersweet to wonder.

Thursday 5 April 2012

Have You Ever Lost Something You Loved?

"Have you ever lost something you loved?" was the question that appeared on my computer screen. I was sitting in a caravan outside the National Theatre in London, England. This ersatz internet cafe was in fact an interactive theatre performance of "Live Streaming", a show by Dutch director, Dries Verhoeven, produced by the London Intl. Festival of Theatre (LIFT). The 'experience' was designed to explore the after-effects of the devastating tsunami and the ensuing outpouring of sympathy and money from the developed world. I was matched with 'Natalie' a thirty-something actress on a beach, live and sitting on the beach in her native Sri Lanka. We texted and she asked me about loss. "Yes, I have lost something I loved", I responded, thinking of my father who is gone and my grandmother. "Do you have insurance?" Natalie asked. "Yes", I responded. She wrote, "Here, only foreigners have insurance". The unbearable loss of everything and possibly everyone for this young woman hung like a terrible inference between us. The session ended when she wrote, "if there was another tsunami and you saw people being swept away in the sea, would you look for me?" "Yes!" I wrote, shocked and humbled by the space, time and experience separating us.

Can we ever have insurance against the tsunamis, the human tragedies and just the bad luck in life? Can we insure ourselves and the people we love against illness or disability? Well, I suppose we can in a way - there is the incredibly wonderful Registered Disability Savings Plan here in Canada, and there are different types of incapacity insurance. Most people have home owners insurance and car insurance, and its easy to buy online. In my family, we hold on to these and gratefully pay the premiums. Of course, nothing can prevent us losing something we love - loss is part of life. But having something in the way of insurance makes me feel safe. And somehow, telling Natalie that I would look for her and meaning it perhaps gave her a tiny sense of insurance, because the best insurance is the company of others who care.
PS: In my last post, I omitted a rather critical piece of background information - that my day was planned WITHOUT a visit to Nicholas, in order to 'get things done'. Mercury being retrograde, I forgot to write the title properly and didn't accomplish anything on my 'to-do' list. No insurance against days like that!

Tuesday 3 April 2012

My Day

Today I said NO to visiting Nick so that I could get important things done. Here's what happened:


6am: Woken by a bad dream about wading through alligator infested swamp to get to my kids.
6-9am: Drink a pot of coffee and read paper. Check emails, facebook and blog frequently.
9am: Call Nick's residence to get overnight seizure update. Look at emails and work on a presentation for next week at Holland Bloorview Rehab Parent group in Toronto.
Noon: Give up on emails and presentation - call Nicholas' nurse and recommended an enema in an effort to ease recent nausea.
12:30: Call to speak to Nick and explain about enema.
12:45: Doctor calls to give seizure drug blood results. They are OK.
1pm: I call girlfriends in London because I miss them and I am putting off working on a magazine article due next week for Canadian disability Journal "Abilities"
2pm: I send a draft of the magazine article to husband Jim and daughter Natalie to read/edit.
3pm: Call Nick to see if he's OK and hear that enema has good results. Nick is playing with the new puppy of one of his workers.
3:30: Receive edits of magazine article from Jim and Natalie. Decide article needs major revisions. Eat lunch including as many oatmeal raisin cookies as I can fit in my mouth.
4pm: Change for zumba dance class and think about revisions.
5-6pm: Dance class, no worries, yay! Followed by grocery shopping while worrying.
7pm: Revise Holland Bloorview presentation paper. Call mother in Montreal to check in.
7:30: Open bottle of good red.
7:31: Realize very little was accomplished today, but vow to make tomorrow better.