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Globe and Mail Update

Latest comment posted at 9:59 AM EDT 25/03/08

Share your feedback on Ian Brown's story of life with his son Walker ...Read the full article

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  1. linda sepp from toronto, Canada writes: Thank you for sharing your story. What an incredibly difficult journey it is for all of you. It's really difficult to describe what I feel from reading this, so I know it comes nowhere near to what you have been through. I apologize for my clumsiness here.
    When you described how being up north away from it all made a difference, it made me wonder if Walker has ever shown any response or aversion to things like plastics, perfumes or fabric softeners? Sometimes exposures to some of these substances can cause extreme reactions, physically and neurologically.
    I wonder if trying fragrance free products around the house could make him more comfortable?
  2. John Meech from Delta, Canada writes: What a powerful story. My heart goes out to you and your family and to Walker. It is indeed special people who learn to live with this type of affliction in their child. Yet I am sure you do not consider yourselves special, but would rather have a 'normal' life whatever that state may be.

    The strength it takes to cope with your son's problems and then deal with all the other 'problems' that each of us face each and every day is incredible. It puts into sharp perspective that what we consider trouble pales in comparison.

    I will pray for you and Walker tonight.
  3. ash land from Canada writes: I worked in home care for a few years and visited a family with a toddler who was also born with a life altering syndrome. Their day to day life was as you describe, and it was so difficult for them to explain to others how enormously all encompassing and endless the care of their child was. I remember the mom telling me in excruciating detail how she spent the first hour of her day, every day, prepping medicines, syringes, washing feeding tubes, laundry and therapy materials, making breakfast and lunch for family, and so on. I felt a palpable sense of relief when I left their house that day.

    Family and friends did not, or could not, help out very much and the family lived in this lonely, frightened state of feeling that life was passing them, guilt for wishing their child had died at birth and that their elder child was being ignored. We tried to cobble together a plan that gave them some respite but it could never be enough.

    They desperately wanted the life of their child to mean something and that search for meaning is the part in your article that I responded to the most. Thank you Ian Brown and family.
  4. Leslie in Kingston from Canada writes: As ever, I am humbled by the depth and breadth of the human condition; by both the joy and sorrow. Here's hoping the soundproof curtain has been lifted in the telling -- thank you for sharing - I will hug my own children a little tighter tonight.
  5. Kelly Fitzgerald from Sudbury, Ontario, Canada writes: Wow..after reading this touching story I was left with so many emotions, that cannot even begin to compare to what the parents and family of Walker must feel on a daily basis. To have a snapshot into the world of a family that has been left with so many challenges, and the few blessed moments of hope and love for their son, has left me with a lump in my throat..for many of us, after reading this, we can only reflect upon our own lives, our own blessings and the minor challenges that seem so miniscule in comparison. The words of Walker's dad are piercingly honest and heart-felt, with moments of desperation and longing for a better life for them and their son. I look forward to reading more on this amazing boy and his family.
  6. J L from Thunder Bay, Canada writes: Wow is right.What a wonderful heart warming story of a loving father and his son.Broken well I think not.Walkers a human being. loved and cherished. and protected.Thank you Ian,and family and I repeat FAMILY and what a family.
  7. Georgina Maltby from Chico, United States writes: Thank you for your piece in the newspaper. It brought tears to my eyes. I appreciate your honesty and the love that is there really came through when I read your story.
  8. Carolyn Bongiorno from Glenham,NY, United States writes: Thank you for sharing Walker's story with us. The difficulties of rearing him are apparent, but he's fortunate to have two loving parents who are committed to his well being. I do hope that things improve to the point where you can get some uninterrupted sleep. God bless your family.
  9. Zenah Surani from Montreal, Canada writes: As my homepage is set to globeandmail.com, I read this while eating breakfast...it was a truly touching story. Parents are a remarkable gift. I look forward to the next installments of this story.
  10. Derek Miedema from Canada writes: As the twin brother of a man now 35 with the mental capacity of a 3 month old, I found this story reflective of so much of my story. That amidst all the tests, the trials, the gut-wrenching difficulties, my brother to has given glimpses of what it means to be human.

    Thank you, Mr. Brown, for sharing Walker's story, that of your family, and for giving many people a glimpse, not at all tritely, that at the centre of Walter's existence, at the centre of my brother's existence, complex as they are, is a simplicity which makes me the student of my brother's mysteries.
  11. Allan de Vera from Brampton, Canada writes: I have 3 beautiful and healthy little girls and another child on the way. I am truly grateful to Ian sharing this story with us. As I am blessed with healthy children and face different sorts of challenges with mine, I see how others have their challenges and see how I can aspire to be as great parents as Ian and his wife are!

    Walker is a beautiful person who has a wonderful loving family that surrounds him. As we enter this Christmas season, stories like this remind us what this season is about: devotion, unconditional love, and the strength of family. Blessings to this family!!
  12. The Bubble from Canada writes: This takes a lot of courage. It's intriguing the way this child is seduced by the guitar. I take my guitar to play for a blind man I know in Toronto once in a while, he plays the bongo and he couldn't be happier. I have to play American Pie all the time. I wonder if anyone has developed an education program with music at it's core and specific to students with disabilities?
    I also have to give the G&M credit for the technology here. Use this stuff a little more and television won't stand a chance.
    Reading, moving images, sound and slides...
    Excellent job all round, best use of communication technology I have seen.
  13. Christopher Fraser from Iqaluit, Nunavut, Canada writes: Thank you Mr. Brown; your story of you, your family and Walker was the most moving article I have ever sat down to read. I partly feel more understanding of the lives of families like yours, though I understand that what you protrayed was merely the tip of the iceberg. Thank you for showing, expressing and delving into a subject for which I honestly am ignorant. I look forward to your emotional discourse in next week's issue.
  14. g k from Canada writes: I just wanted to say thank you for sharing your family's story. I am sitting here crying (i have been for most of the last two pages), that is how touched I am by your family's devotion to your son.
    All the best.
  15. D. B. from Greater Sask., Canada writes: This is a powerful story that resonates very much with me. So much emotional content, presented powerfully and not a trace of sentimentality.
  16. David Doyle from toronto, Canada writes: I asked my 8-year old son to read Ian Brown's astonishingly insightful article. He finished it and said 'Dad, that boy is very lucky his Dad loves him so much'.

    David Doyle
    Toronto
  17. Jim Duff from Hudson, Quebec, Canada writes: In 1978, I wrote about the last days of an institution called the Butters Centre in Austin, Quebec, where children like Walker were brought by their parents to live. Quebec was in the process of discovering the budgetary benefits of 'deinstitutionalization.'
    The focus of our story was on how the regional health and social services bureaucracy was preparing to close the Butters Centre down and move the 'clients' into group homes. That was the first step toward 'assisted family care,' a bland bureaucratic euphemism for the incredible burden of looking after a developmentally challenged child. Reading Ian's incredibly moving, loving account leads me to ask whether the Butters Centre wasn't better in the long run.
    Over the past 30 years, I've witnessed the state do less and less in proportion to the psychological cost to families like the Browns.
  18. Marc Callico from ottawa, Canada writes: Ian,
    Wow, where do i start. You have the most courage I have seen in a long time, myself as a parent would of gave up a long time ago. You sir get my most deepest respect for over coming challenges thrown at you everyday and you even have the ability to always look at the bright side when most of us wouldn't.
  19. Catherine Switzer from Canada writes: I have had the intense honour and pleasure of teaching Walker for two years. While the challenges of his life are certainly intense I have to say his smile and laughter will also light up a room.
    To have this glimps into his home life is truely a gift. As educators I think it is often too easy for us to forget or perhaps simply not realize the challenges that are occuring at home after the bus pulls away at the end of the day. Even though I was off for a year on a matrenity leave and have since changed schools, I think of Walker and the other children often. I miss them and wish them all well. I am looking forward to the next two installments!
  20. interested observer from Victoria, Canada writes: Thank you Ian Brown for having the courage to share your powerful family story with us. I believe that it is in facing great adversity that we are able to find our humanity. You have eloquently showed us how you and your family have found yours. Perhaps that is Walkers greatest gift to you.

    I struggle with a disability myself, and this story is a reminder to me that while at times life is difficult, I must also have humility, for there are always others whose struggle is much greater. I thank you for that reminder.
  21. Janice Cooper from West Kootenays, British Columbia, Canada writes: This story is a reminder of how mysterious, magical, and fragile is our tenuous human existence, and how often we take the magic so much for granted. I am moved beyond words by the Brown family's grace and love. Thank you to the author and his family for allowing us to share their story. It was a wake-up call for me and, I suspect, many others, about what is truly important.
  22. Edmund S from Canada writes: Your story is a wonderful testament to the strength of a parent’s love for their child. Thank you for having the heart and courage to share it. The grace with which you relish the connection you’ve made with Walker in your clicking language is a sublime revelation for most parents. As a father of two autistic children I understand how even minor advances are cherished as the most precious thing on earth. This may be an unfair observation, but in my conversations with parents of “normal” children I detect a whiff of indifference to their child’s ‘minor’ achievements owing to an obsession with how they are stacking up to the larger expectations they’ve set upon them. The little things from which you derive great joy in your son are a touching rejoinder to this sort of thinking. I am ashamed to admit that when my children were first diagnosed as autistic I was driven to bouts of self-pity by thoughts like ‘can I ever aspire for my son to go to Harvard? To be a doctor? To give me grandchildren?’. Accepting that my future ambitions for my children were totally irrelevant in relation to their significant needs today was liberating. It is much easier to attend to the emotional and physical aspirations of my children than it is to try and impose my own. It is also oddly comforting to know that the added time I must spend focusing on their special needs prevents me from squandering this precious time on career or other distractions which are trivial by comparison. The immense emotional and physical demands of child-rearing you have shared in your article puts any grievances I may have in their proper perspective. Your story is inspirational to me as a parent and for that I am eternally grateful. I sense that your love and devotion to Walker’s needs will bear fruit, come what may.
  23. Ian Dallas from Victoria, Canada writes: Ian Brown's description of his family's journey with Walker touched our hearts and our minds. Brown's writing skill has never been better. It should be required reading for every parent and anyone who has parents. Painful, poignant and powerful. Thank you for publishing it.
    Ian and Linda
  24. Bob Smith from Vancouver, Canada writes: Award winning journalism.

    Before birth, my child was diagnosed with a genetic disorder and I was fully expecting a life like yours. But the diagnosis was totally wrong - my child is healthy, happy and, in fact, a high achiever.

    But the dark nights of the soul I suffered as I prepared for a life as the parent of a severely disabled child make you and your wife - and the parents of all such children - heroes in my book. I hope your marriage has survived. I shall look forward to your next installments.
  25. D. B. from Greater Sask., Canada writes: I went to a family concert tonight with some beautiful piano music by Ravel, Schubert and Dvorak. I saw a six-year old girl on her mother's lap. She was very quiet and happy. She was kicking her legs out in every direction. My heart sank when I juxtaposed this scene with Mr. Brown's article about his son.
  26. Corine Green from Nobel, Canada writes: Your story rendered me completely teary eyed and speechless this morning. My husband and children looked at me with concern, wanting to know why I was crying, but to open my mouth and vocalize my thoughts was completely impossible. I was choked up and overwhelmed with the raw emotions coming through in both the video and the article. I still can't properly say what I want to say about your love and devotion to this child who needs so much of you and who simultaneously brings you so much joy and so much pain.

    I am so grateful to the Globe and Mail for publishing eye opening stories like this about truly astonishing people who make this world a better place. To Mr. and Mrs. Brown and all the parents like them who work so hard at the things that are so easy for the rest of us. And to Walker, who reminds me be more grateful for the little things in life.

    Thank you.
  27. Tim Callan from Guelph, Canada writes: Thanks for sharing your story...I was reading the paper this morning, in between watching my girlfriends son (age 11) play basketball...I was very moved, and it caused me great reflection about children, and our role as caregivers...Walker has much to be thankful for; he has a family that loves him; a family that is imperfect like many others; a family with the courage to share their personal story - to help others understand and see the world around us a little better...it's so important to share experiences - we learn a great deal about ourselves. Thanks again.
  28. Cheri Allen from Elora, Canada writes: Thank-you Ian for sharing your very personal life and intimate feelings with us. It was a privilege to be invited into your home. I have a 13-year old son with a mild learning disablility (CAPD) and who worries my terribly at times. He wants to be a gym teacher when he grows up. I get very tearful when I think about the possiblility that he simply may not have the intellectual ability to fullfil his dream. I dread the day when he may need to come to this realization. I was so touched by your wife's comment that, for everyone's sake, she would trade Walker in for an ordinary boy who get's C's in school. At this point, my son is still getting B's in some subjects. Thank-you so much for giving me perspective. I have so much to be thankful for and shouldn't forget it. I very much look forward to your next article.
  29. Alana Ronald from Canada writes: I wept when reading Ian Brown's account of his life with Walker.
    Whatever this little guy understands, he must feel the love and devotion of both his parents. I wondered how more disadvantaged parents of children with this syndrome cope?
    Walker is a lucky little guy. I wish continued strength and courage for both his parents, and, I dare add, prayers for all their futures.
  30. Diane Langabeer from Picton, Ontario, Canada, Korea, Dem. People's Rep. of writes: Ian, your story of your son Walker and daughter Haley with your wife Johanna is the most amazing articulated story about life with Walker I have ever read in my entire time on this Earth. Thank you for sharing your life's journey with this remarkable young fellow by the name of Walker. They say, our eyes are the windows to one's soul...I believe, from your pictures of Walker in your story, you have reached the very soul of your little boy. You have painted images of your day with Walker so well, in the way in which you have told his story from birth. I feel as though you have allowed all of us in your days and nights as you journey through every step of his life. Thank you Ian for being the writer you are, as you have allowed us to enter your life with Walker with such unconditional love for him, your patience, your ever so truthful frustrations, your milestones with him you celebrated and will continue to celebrate. I was very moved by your story and will look forward to your next article describing your loving life although frustrating at times, I appreciate your honesty, your wit, your humor you find in the days you have yourself wrapped around this little boy. Walker truly is a gift...the gifts he has given you can never be measured or be given to you from anyone. People like Walker are truly the teachers in our lives. Thank you for sharing your lives together from the time you wake up, until you finally fall asleep. For sharing his milestones, his own frustrating days and how you all come together. His sister truly is his real world as you and Johanna are too and without that constant and honest love, Walker would not be the little boy he is today. Again, thank you for sharing the most honest story I have ever read from any newspaper or read about anyone's life. You truly are an inspiration to all those who have read this and finished your story with a lump in our throats. Diane Langabeer
  31. carol Rogers from Gananoque ON, Canada writes: Ian and family You touched my heart with your moving account of loving Walker.I am a constantly humbled social worker working with families and children living with disabilities.I am in awe of the lessons the children give us every moment and their families' courage.This week with a colleague,I am giving a workshop to professionals on Looking through the Window of families with special needs kids.Your account so well describes this.I think I'll just stand by and show your video which says it all beautifully,with love and the pain too.
    Thank you, Carol Rogers,social worker,The Child Development Centre,Kingston
  32. Shelley Aubrey-Young from Ontario, Canada writes: Ian Brown THANK YOU for sharing Walker's story. We are the surviving family of a beautiful child who was also born with a rare genetic disorder called Lissencephaly. He passed away at the age of 2 1/2. Reading your article this morning was like stepping back in time to our life. I could not finish the article without shedding tears as I felt your family's joy and pain as well as the empathy I feel for Walker and his daily struggle just to 'be'. Our son was our first child, diagnosed at 4 months of age, our lives were irrevocably changed. He was severly developmentally delayed, never even able to hold his own head. He suffered daily with seizures that never were controlled despite a full roster of anti seizure meds. His brain had no sleep cycle and so I empathize with with the sleep deprivation and have also used all the meds. I also felt that same relief when he was asleep, the only time he was at peace. I too have heard many families with children such as ours say they would not trade them, but my husband and I feel very much as your wife does...I would have traded our son's compromised, difficult and often painful life for him to be average any day. That being said we love him endlessly and looked for every blessing we could in his life. The life lessons we learned from him were profound and because of him we are better parents to our children, better spouses to each and other and everyday we aspire to make a difference as better human beings. The lessons are worthy but the cost to our son was far too high. Walker now has a place in my heart where I cherish all the beautiful children who have touched my life in the same profound way. I wish you all peace, especially Walker. Again, thank you for being brave enough to share Walker's life with the nation, his is a story that needed to be told.
  33. Roslyn Ritz from Montreal, Canada writes: Mr. & Mrs. Brown: All I can do is cry. May you have only good luck for the rest of your days and your family, with God's help, thrive and bring you nachos. (blesssings)
  34. Lynne Jubenville from Sarnia, Canada writes: Your story touches me in a very deep and personal place. We had a child who was medically fragile, and profoundly handicapped. I know about feeding teams, physiotherapists, neurologists, orthopedic surgeons, developmental specialists, g-tubes, projectile vomiting, no sleep, and profound heartache. Permagrief, I called it.

    I can't tell you how many times in reading the story, I wept, and thought, 'I know - I remember thinking that.'

    I also looked for long term care for my son, but the fact is, it is practically non-existent. People would congratulate me for keeping him at home, but the only way not to would have been to give him to children's aid. Or to pay tens of thousands of dollars (exceeding my income) for private care. Even then, it would not have solved the real problem, which was that he had no life. It is beyond most people's realm of imagination what it is like to witness the suffering of your child day after day and, in spite of everyone's best efforts, not to be able to fix it. I think it would be odd not to want more for your child. I am beside you in wishing things were different.

    I could go on and on, but you don't need that. Thank you for sharing your story. I wanted you to know that I 'get it'. I wish I didn't. I wish no one had to go through this type of pain.
  35. Joe Recupero from Toronto, Canada writes:
    I have always been a huge fan of Ian Brown's writing and broadcasting and in the spring of 2002 I was Producing a documentary on the 50th Anniversary of Hockey Night in Canada for CBC TV Network Sports. I wanted Ian Brown to be the host of the show , since I also admired his work on TVO's documentary series 'The View From Here ' .
    We spoke a couple times and I tried to convince him to do the show and he unfortunately turned me down. He was beginning his stint as a features writer for The Globe and Mail at the time and he said 'it was an incredibly busy time for him.' Little did I know all that was going on in the background of his family's life ....His brilliant piece of writing about his son Walker struck such a chord with me and it makes me realize yet again how little we all know about what is going on in the day to day lives of people we come into contact with on a casual basis , but even more so , probably those we think we know so well. His writing is so raw and honest and gives such an unguarded and unapologetic view of the frustrations and joy found in a difficult circumstance.
    A powerful piece of writing and I can't wait to follow the rest of the series or anything else he writes .

    Joe Recupero
    Producer , CBC TV Network Sports
  36. lorraine angelopoulos from Canada writes: Reading Ian Brown's article stirred so many feelings. My 26-year-old son, Paul, has cerebral palsy. It seems that parents who have handicapped children speak a special language. They have common thoughts and feelings beginning with the long process of accepting a chronic irreversible condition that imposes upon them a chronically different lifestyle. That lifestyle is not without joy, but it is also full of stress about the immediate and the distant future for them and their child. As Ian says, 'Will I be changing him when he's 20 and I'm 60?' Parents of handicapped children also live in a constant state of schizophrenia: loving the child as they love their other children, yet wishing for God to take the child. Certainly every parent I've talked to has wished that the child die before them - a wholly unnatural feeling. Mr. Brown mentions trying to quantify how old Walker is intellectually. People feel if they know that then they will be able to understand. How can I explain that my son who cannot talk, feed himself, or go to the bathroom is also a maturing young man. Whatever his IQ or mental age is, he is definitely not a baby. There are other things about him that are definitely adult: he does not cry anymore if he hurts himself, he roars and yells to fend people off if he feels vulnerable, he has matured sexually, he can be affectionate and loving if he feels like it.
    Overnight and then for the rest of the child's days, your lives become medicalized, dependant on specialists, social workers, homecare workers. The family privacy is completely compromised because you cannot manage without the help. You cannot go to the mall and be inconspicuous. And yet there are joys. My son's three brothers love him, each in his own way, and that is a lovely thing to watch. Paul is like a big teddy bear, nice and warm for cuddling into. I love it when I ask if there are any kisses on the go and he reaches for me.
    I look forward to Mr. Brown's next article.
  37. Jim Dolmage from toronto, Canada writes: I've been where Ian has been but especially since my own son died I am thankful that I never went where Ian has gone. There is a great deal of negative language rationalized as being 'brutally honest' about Walker. Why then describe Walker as residing in a 'special community ?' Continue with the frankness and describe honestly where Walker now is living - an institution that is a dumping ground for unwanted children. What is sad about this story is that Ian doesn't recognize that those times on Georgian Bay were happy for Walker not because Walker changed - but because that was the only time that this family acted like a real family - no nanny and no professionals telling them how they should behave.
  38. Debra Wingrove from Edmonton, Canada writes: This is a couragous piece of writing and you are a couragous family. I appreciate your wonderment regarding what it is like for Walker to be inside of himself. I strongly suspect he is a wise and high functioning being inside of his limiting body. You may find the book 'The Children Of Now' by Dr Meg Blackburn Losey helpful as you explore this line of thinking further.
    Bllessings
    Debra Wingrove
    Edmonton
  39. D. B. from Greater Sask., Canada writes: I was glad to read the comments by Ms. Switzer, a former teacher of Walker who spoke about how his smile and laughter brightened the room.

    On another note- most of us find that a lot of life involves 'coping.' Ian Brown's story resonates with me on one level because I have a sister who is schizophrenic. She is 56 and took pills for the past 25 years. I have countless photos of her as a young girl. Sometimes I say to myself, her life ended with her childhood. Her happiness pretty much came to a halt in any event. She just went off her pills. Maybe the fact that she is older will make the 'transition' easier for her.

    Walker's condition is genetic and surely there is no way to say that it is associated with the malaise in our society today. But so many of us are reduced to 'coping' and I think that has a lot to do with what our society has become. I'm not 100 percent sure that schizophrenia is not related to that malaise.
  40. Daniel Rumbolt from Stephenville, Canada writes: Ian Brown...I have read and listened to you over the years and have always admired your talent to write and speak so well. This latest project on your son and family is the best I have ever seen. Your ability to portray the pain and joy of your situation is incredible.Thank you so very much for having the courage to use your talents in this way...a very touching and educational piece .I hope you and your family have a great Christmas.
  41. Susan Darling from Sudbury, Canada writes: A remarkable story worthy of a documentary. I was tremendously moved and filled with admiration and compassion for Ian and his family. One particular quote struck me: 'We spend a million dollars to save them...but then when they're discharged, we ignore them.' How much are we doing for the families of severely handicapped children? One can't imagine that most cope as well as the Brown's have. As indicated, their numbers don't generate politcal clout yet their need is so very great. It is reassuring to learn of the Dr. Norman Saunders Iniative in Complex Care at the Hospital for Sick Children in Toronto.
  42. Elaine Dale from Woodstock, Canada writes: Ian, I have been a fan for awhile and noted your references to Walker long ago. I was hypnotized by Part One on Saturday. I work on the paper/stats end of things with a developmental services agency in Southwestern Ontario and have forwarded the link to all our staff. '

    Ian, thank you for the beautiful articulation of Walker's story from your perspective.
  43. Annis Karpenko from Canada writes: Ian's telling and Peter's images of Walker's story is a masterpiece in every sense. Thank you.
  44. Christopher Lake from Randolph, New Hampshire, writes: My heart goes out to you; Ian, Johanna, Hayley and Walker.
    Thank you for sharing your stories.
  45. German Shepard from toronto, Canada writes: Mr. Brown's story writing is gripping. He asks all the questions we all would ask, quietly, to our selves. Sometimes, there are no answers. It just 'is'...it just is.
  46. kathryn lagroix from Canada writes: Johanna, you are right, real life is dramatic enough. Real life stories do not need to be artificially embellished to impact us in the most profound ways. Walker's story took me through a vast range of emotions including joy and sorrow, despair and hope, empathy and admiration. Thank you, Ian, for the beautiful telling of your story and for sharing it with us.
  47. My eyes are open, Are yours? from Canada writes: I was also touched by this story. However, I have a few suggestions that might make it easier. These may not work, but if it helps, here they are:

    Is it possible to move to a single level home, so you don't have to carry Walker climing the stairs?

    Make up the formula during the day, in case you need it in the night. Maybe get a bar fridge and a microwave for his room, and do everything there.

    Get some night-vision goggles, so you can see what you're doing in the dark.

    HOpe this helps.
  48. David Jannard from Calgary, Canada writes: Thank you Mr. Brown for inviting us into your home, and sharing with such immediacy and intimacy the dynamics of your family life. I was deeply touched and moved by your story, beyond my capacity to tell you. Every mother and father reading about your family's daily trials and triumphs has some understanding of what you face. I have admired your writing for many years - for its honesty, its unabashed emotion, and its celebration of the humour and randomness of Life. This piece moved me to tears and compelled me to share it immediately with those I cherish. Ian - you are a better dad than you are a writer...and you are one of this country's very best writers.
    I am having a rum and egg nog for you tonite.
  49. Mira Jelic from Canada writes: Thank you for sharing Walker's story. I am touched by your honesty and bravery.
  50. David Richinger from Zurich, Switzerland writes: Growing up in Yellowknife with only 1 radio station and a CBC-fanatic mother, the radio personalities were like family members. Ian Brown was my favourite and I would arrange my Sunday mornings so that I was doing something appropriate to listen. After all this years, listening and reading this in New York, I am grateful for and to him again.
  51. Cindy Armstrong from Richmond, Canada writes: Your story is very touching and powerful. I can relate to the pain, joy, frustration and other emotions you describe as we have a 14 yr old son with a rare genetic condition and have lived through much of what you talk about. Like your wife, if I could take his PWS away from him, I would do it in a second. Although our son has taught us so much and he is a real character who lives a happy life, I would love for him to live a life with opportunity and freedom like his sister has. But I can't do that so we work hard to help him be the best he can be and celebrate his accomplishments. Only parents living this life can truly understand the range of emotions that happen in a day. Stay strong, keep the family unit strong and know that through your story others are learning. Thank you for sharing.
  52. Lynda Arbour from Toronto, Canada writes: This achingly poignant love story of the struggle of Joanna, Ian and Hayley to improve the quality of Walker's life, with so little medical assistance, is compelling reading. I do not believe that God creates damaged children,but that these gifts of God are part of the randomness of evolutionary creation, and that they have their purpose. I believe Ian Brown is being called to speak for these children and their families. No one else could do this more effectively.
    The character of these families is tested in ways that most of us could never imagine.
    It would be useful to let us know if there is some way that strangers can contribute their support.
  53. Laird Cowell from Sault Ste. Marie, Canada writes: Ian's relationship with his son resonates with anyone who loves his/her disabled son or daughter. The poignant phrase... 'My sweet, sweet lost and broken boy' is a window into Ian's private life that he so generously shares with us. I respect his honesty and courage.
  54. JANET M from KINGSTON, Canada writes: The terse but powerful prose, the black and white but meaningful photos and the courage to take us along on this journey all resonated with me. A soft and gentle story but a story of courage as well. Many lives are lived in struggle...that much more poignant to meet Walter. A gentle testiment to the human condition. Thank you Ian and family for honoring us with this.
  55. D. B. from Greater Sask., Canada writes: There are 2 posts and maybe more that do full justice to Ian Brown's article. I am thinking of the posts by Shelley Aubrey-Young and Lorraine Angelopoulos.

    Shelley wrote about her son who died before he was 3:

    'The life lessons we learned from him were profound and because of him we are better parents to our children, better spouses to each and other and everyday we aspire to make a difference as better human beings. The lessons are worthy but the cost to our son was far too high.'
  56. Karl Rainer from Nanaimo, Canada writes: Every so often I come across a piece of writing which terrifies me, challenges me, and awes me at the same time. This is one of those missives. I have no suggestions, for Mr. Brown (how could I presume!) but I have many thanks. Thanks for being candid, for showing us the essence of true humanity in all the individuals in your family. And thanks for showing us Walker, and in some way, for allowing Walker to speak to us in his own way.
  57. Jim Dolmage from Canada writes: The unstated question underlying some of Walker's story might be how can this young person have some control over his own life. He may not be given even simple choices like what food to eat or what clothes to wear. The really important issues such as who will be allowed to touch him in intimate ways may be decided by others. Ironically, he is the only person who knows who he trusts and feels safe with.
    We know that behaviour - smiling or screaming is communication. The mystery is to discover the meaning. This is key to allowing Walker to make choices of his own. Much of his life will continue to be controlled by others so giving him every opportunity to make his own decisions is essential to his safety and happiness.

    http://www.gentleteaching.com/feelingathome.pdf

    The teachings of John McGee can be found at this website. It is especially relevant for parents and care givers. It might be a starting point to understand how power can be given to the seemingly powerless.
  58. Marshal McLernon from Canada writes: Too often we are afraid to say what's in our minds and hearts when dealing with special needs family members. Bravo, Brown family, for being so candid.

    My family adopted a 3 year old physically challenged and developmentally delayed child when I was 13. He was not supposed to live beyond a few years, but 20 years later, he is still here and still going strong. My siblings and I watch my parents struggle to continue with his care, and we are working to establish ways that we can help from our different cities and different daily realities. The fact is that nobody but the parents and immediate family of a special needs person can fully understand the daily trials and tribulations of this kind of life. But Ian has made it more comprehensible, I think.

    Suffice it to say that Ian Brown's story is compelling for the masses, but most likely more so for those of us who have a connection to someone experiencing the same struggles, challenges, and victories.

    I am moved beyond belief by Ian's honesty, and look forward to reading more. If it were possible, I'd be sending big hugs to the Brown family as only the smallest token of my support and understanding.
  59. Nina F. from Petawawa, Canada writes: Thank you, Ian Brown, for telling us your story. It is moving and humbling. I've admired your reading for years and I admire you for your courage. I will keep Walker, Hayley, Johanna and you in my prayers.
  60. tessa Pinkus from Gabriola, BC, Canada writes: Yup. Thank you for writing this. I find that people are really interested in the raising of a handicapped child because no one knows about it. And it's not something one really volunteers when someone says, 'Hi, how's it going?' Ian, I think you received really nice comments, too. People do want to know and they do care. So you please keep up the good public education work, cause I can't begin.
    Tessa
  61. DM Paramskas from Guelph, Canada writes: I can only second everything that has been already said about the impact of the article, about the Brown family and about Ian Brown's consistently remarkable talents on both CBC and the Globe and Mail. I can only add a literary footnote from John Donne: 'No man is an island, entire of itself [...] because I am involved in mankind'

    Those of us who unlike so many of the responders do not have to deal with the challenges involved with developmentally handicapped children can only admire the parents who do have to deal with them, and who do so with grace, honesty, and such a tremendous generosity both to the children and in reporting back to the rest of us.

    It must be so hard... not only in terms of daily coping, but also in terms of looking at the future for the child. I can only say bravo! and hope that whatever happens in the future will not find the parents dealing with too much guilt.

    One is dealt a certain hand in terms of genetics. Can't be changed. But maybe - just maybe - some kind of resolution can be found eventually, on the personal level.

    My best wishes to the Brown family, and may Walker - against all odds - eventually develop to the point that he can relate to his family.

    Dana
  62. Fiona Fisher from Dunfermline, Scotland, United Kingdom writes: Hi Ian, substitute CFC with a similarly rare and complex disorder called Lowe Syndrome and our stories are mirrors of each other. I am mum and full time unpaid family carer to my 13 year old son Jonathan ( aka the Dark Destroyer, JF, chuffin prawn, bonny jonny, Joff etc ) who has Lowe's, a genetic disorder passed (mostly) from carrier mum to affected sons only. It broadly affects the eyes, brain and kidneys but like many paed. disorders has many bells and whistles attached. Joff is registered blind after bilateral cataract surgery at 10 days old, non verbal, hypotonic, doubly incontinent, profound learning disabilities, epileptic, Fanconi syndrome in his kidneys, da da da da da da. He began to walk when he was 5 and a half. Learned MGS sign at around 8. Likes to use more and finished best. Waves goodbye with his palm faced inward like some form of royalty ;) I am particularly struck by the meditative qualities our sons lives have evoked, what I wouldn't give to live inside J's head for even 5 minutes! What life would *I* have lived had he not been endowed with a single point mutation? Indeed, the rest of our family - my husband and two girls, one older - a recently diagnosed carrier of Lowe's and one younger. Jonathan has recently begun a mini click akin to the onomatopoeic sound of a kangaroo(!!) when he wants contact on his terms, he deigns to grant you a brief hug, to let *you* entertain *him* with whistles. Walker's clicking was doubly emotional for me for that reason. Two differences are that Jonathan *appears* content with his life, with only small but intense periods of self injurious behaviours, and the other is that he genuinely appears not to need people, form relationships - yet to a person, everyone loves him. Thank you so much for sharing your family's story and I will look in next week for the next installment. Wishing the Brown family all you wish yourselves, regards from Scotland. Fiona
  63. Diane Tilley from Bobcaygeon, Ontario, Canada writes: Kauai, Hawaii: As I read this story on line I am moved to tears. Ian Brown is a powerful writer and has alluded to Walker in the past. How thankful I am for being allowed into the life of this family. What a wonderful family it is - and I think Olga is a part of it. I will be sending this to my friends here, and I look forward to the next few weeks. Aloha. Diane Tilley
  64. louise livingstone from Stirling, Canada writes: The E-journalism students at Loyalist College, Belleville are working on a project on aging parents with disabled children. You can check their videos, audios and blogs.

    http://pioneerplus.ejournalism.ca/?q=node/1679
    http://pioneerplus.ejournalism.ca
  65. Christopher Cecol from United States writes: “Weeping may endure for a night, but joy cometh in the morning. (Psalms 30:5)”
  66. pat grandstaff from wichita, United States writes: my grandson, owen is 3 1/2 and is also a cfc baby. our problem here is that my daughter cannot find a dr. who is familiar with the symptoms and treatment of cfc. how on earth does one find a capable physician to treat these children? owen has episodes of self mutilation, biting himself to the point where he has made himself bleed and the only response we get from the drs is that we should re-direct him. how on earth does one re-direct a child like this in this situation. any advice or suggestions would be greatly appreciated. i was wondering if perhaps this is somehow enviromentally connected? has anyone done research on this? thanks
  67. North America from United States writes: Thank you for allowing me to spend some time getting to know Walker and the Brown family.
  68. pam wilkinson from peterborough, Canada writes: I can't get this story out of my head after reading last weekend's Globe. The courage and humour are what resonate.

    The frank approach to Walker's appearance and behaviours is done so lovingly it is really unlike any other article of its kind in recent memory.

    As a parent who has gone through some tough health issues with two of my three children, I applaud you for opening the door to the way 'different' families get through their days.

    As a young mother I used to look at it as 'them' and 'us', the former those golden families with healthy children untouched by that fickle finger. If I'd been able to read stories like yours, I wouldn't have felt so lonely.

    Thank you.

    Pam Wilkinson
  69. Claire Kerr from Toronto, Canada writes: For those who are interested in learning more about the Dr. Norman Saunders Initiative in Complex Care (The Hospital for Sick Children) or who would like to make a donation to the fund, you can visit this web page:

    http://www.sickkidsfoundation.com/saunders
  70. Terry Kelly from Kingston, Canada writes: Brilliant and inspirational. Beautifully written and expressed. An army for a boy for sure and you, Johanna and Hayley, the leaders. Thank you Ian.
  71. Lynda Leopold from Harrow, Ontario, Canada writes: Thank you, Thank you. I do not possess the grace necessary to express my gratitude appropriately. Although you may not agree, you-Hayley, Johanna, Ian, and Walker-are an exceptional example of a family. To have been able to see your beautiful son laugh with unabashed joy or to see him contemplate some thing with such wonderment is a gift you have shared with the rest of us and I will cherish it for some time to come. I would like to especially comment upon the love and compassion demonstrated by Hayley, who has accepted, with wisdom apparently beyond her 14 years, her role as big sister and special person to Walker. I was moved-as so many of us were-fundamentally.
    I can only hope to have the chance to offer in person the metaphorical hug I am sending you all today.

  72. Mary Bradshaw from london, Canada writes: Thank you for sharing your story with us. You have a gift and you use it well. Through you we have all had the chance to see into a life we have no clue about. I wish you and your family more of the strengh and love you seem to be filled with. I look forward to next weeks installment.
  73. deb halldorson from edmonton, Canada writes: A friend of mine just directed me to your site. I have a fifteen year old daughter with global developmental delay. We are in the process of moving her into a full time group home to live, because, we're worn out with caring for her. We love her but we're worn out. It sounds like you felt the same way about your son and it's nice to know I'm not the only one. If you're interested you can read my blog at
    tiredmummy.blogspot.com
  74. Susan __ from Toronto, Canada writes: As so many posters have said, this is such a moving story, and Ian Brown's honesty in telling it is breathtaking. I hope I won't seem callous if I focus for a moment on the calibre of the writing rather than the story itself. This is stunning work. It is the best feature I have read in the 15 years that I have been reading the Globe and Mail, and is one of the most artfully told stories I have ever read, anywhere. Thank you for it.
  75. Joeph Mac from Canada writes: I was totally confused by this story, which led readers to believe, for thousands and thousands of words, that Walker was at home being cared for by his family.
  76. paul sischy from Montreal, Canada writes: Thank You, Ian.
  77. Cecilia Cormier from Cocagne, Canada writes: Some people and their life story will take hold of your soul and hang on tight. Ian Brown and his family are such people and their story is such a story.

    I struggle to comprehend the excruciating pain and frustration and fleeting moment of exquisite joy that are part of sharing one's life with a little boy whose needs are so deep, incomprehensible and immediate. The only time I come close to some understanding is when I recall his father saying that all his questioning ends up turning into questions about his own self.

    In sharing his family's story with us with such insight, humility and honesty, Ian Brown has done so many of us a great service. Whether Walker is a shaman, an elder or simply a CFC child is irrelevant -- he has been put on this Earth to teach us how to regain our humanity, one person at a time. And by sharing his story, Ian Brown is sharing this boy's grace with us.

    Thank you. You have done us all a great service.
  78. Georgina Harris from London, Canada writes: Forty five years ago our son, Robin, was born in Northern Quebec. He did not breathe at first, help was not at hand, and the result was severe brain damage. He was finally diagnosed when we were living in France a year later and was faling to meet normal milestones. A wonderful man, Dr. Maury, ran an institute for chldren with cerebral palsy in Fontainebleau. He was a blessing to us after seeing several army doctors who advised 'putting him away and forgetting about him'. Dr. Maury's approach was to work gently at the things that could be worked on and accept him as he was. Children seen at this institute had to be living at home. We had heard about a place in Philadelphia that claimed to work wonders for severely handicapped children so, after returning to Canada three years later, we went there to discover very quickly that they were charlatans who were out to make money from people's desperation. This turned out to be the best lesson we ever had. As Johanna said, we had to realize no one was helping us because no one could. From that point, we went back to Dr. Maury's approach, and gave up wasting precious energy and time looking for something that doesn't exist. Robin still lives at home and goes to a day program where he has friends and enjoys things like singing in a Karaoke group and watching a cooking class, occasionally getting his hands in the cookie dough. It's enough and he's usually happy. At times though, he cries, and I think, as you do, that he is realizing his difference and that's heart breaking for us all. Your beautiful essay brings me to tears and I have reread it many times. The film clip where you tell Walker that you've got him is especially painful, a dagger, yet warms me as I watch. How often have we said that to Robin? I couldn't count. But it comforts us all. Thank you for your honesty and most important of all, saying in so many ways how you love him. Sincerely, Georgina Roxburgh Harris
  79. Chris T from Canada writes: I have never been more moved by a newspaper article.
  80. Jim Young from Burlington, Canada writes: I have followed the trials and sorrows of The Latimer Family since 1993. . I have also been moved and enlightened by Ian Brown’s account of similar trials & occasional moments of joy raising of their severely handicapped son, Walker. Those whose parole refusal has sentenced Robert Latimer to life in prison are the same people who would have sentenced his daughter Tracy to a life of pain and suffering. The Latimer family in either event, would have, endured a cruel and unusual punishment, meted out by those who believe that their insight and moral judgment is somehow superior to Mr. Latimer’s or to that of Justice Noble. Before we deign to judge Mr. Latimer we should be forcedto walk a mile in his shoes. Before we decide if he is a cold killer or a loving and merciful father we should have walked a mile in Tracy’s shoes. Only from such insight should we be allowed to cast our opinion. While The Brown Family is a completely different case with completely different characters, I am drawn to the parallels between the two. Mr. & Ms. Brown have traveled a similar mile to that of Mr. & Ms. Latimer. They, have the insight that our Police, Courts, Judiciary, Parole Boards and interested public such as myself lack. I do not wish to put Mr. Brown in the position of having to speak for another, but as a journalist he puts himself there. I think that Robert Latimer did a brave, compassionate and loving thing for his daughter. A thing I can only hope to have the fortitude to do if my circumstances were similar. I, and, I am sure, many of you readers who have been touched by Mr. Brown’s writings and have been conflicted by Mr. Latimer’s action and the response to it, would be grateful for Mr. Brown’s insight and opinion on Mr. Latimer’s actions and subsequent treatment by our justice system.
  81. Aasa Reidak from Toronto, Canada writes: This may be difficult to do for Walker, as he is receiving his food via tube, but I would suggest stopping any gluten and casein containing foods. Many children with autistic spectrum disorders and others with various gut ailments, even people experiencing seizures, have experienced relief after they stopped ingesting these proteins. A change in 'diet' may not solve all of Walker's problems, but it may help put an end to some of his self-injurious behaviours. More information about various diets can be found at www.nourishinghope.com and at www.breakingtheviciouscycle.info/ . May God be with Walker and his family, as they are going through something which most of us can barely even imagine!
  82. steven threndyle from kelowna, Canada writes: Ian and Joanna,
    I'm a pediatric speech language pathologist and parent who is deeply moved by your story. We do have an 11 year old boy who gets c- marks, but he also is able to talk to us. As an S-LP a couple of things you mentioned, Ian, brought up a few questions for me. I know the Macarthur Developmental Inventory well. If, Walker understands over 100 words, he likely has enough of a receptive language base that expressive communication (in some form) is possible (in addition to clicks, I mean). I also read with interest your description of the other children with CFC. My understanding was that these kids not only were not self-abusive, but also had fairly effective expressive language systems. Perhaps Walker's hitting may truly be related to his inability to express himself. A vast array of augmentative devices are available now that could give Walker the control and output he craves.Finally, I understand that Walker has been tube fed for most of his life. It's no wonder he is not pronouncing many consonants, yet. His mouth is still very immature. Walker has not had the necessary oral experiences required for speech. Perhaps oral motor exercises (which can be very interactive and fun) would be a next step. I plan on presenting your moving documentary to our school district Student Support Services meeting later this month. Don't be surprised if you receive many more comments. I have so much respect for the four of you!
    Sheila Threndyle, M.A, S-LP(c), CCC,
    Registered Speech-Language Pathologist
  83. Laura Ludwig from Belleville, United States writes: Thank you for sharing your story. My son, Jacob, is 4 1/2 years old and he has an undiagnosed syndrome. He has microcephaly, GERD, bilateral clubfeet, bilateral undescended testes (corrected), right kidney small due to cysts on upper 20% that turned into scar tissue (low functioning kidney), left kidney is enlarged due to Grade 3 reflux, low muscle tone, non-verbal, global developmental delays, etc, etc. Altough our children have different medical issues, I can relate to so many things you wrote about. It's hard having a child with special needs. However, I must admit that I am a better person for having Jacob. He has taught me so many life lessons that I would have never learned without him. I don't waste time getting upset over little things nor do I take simple things for granted.

    I'm thanful for your story as I think it's important for those with special needs children to know that they are not alone and certain thoughts, feelings, etc. are normal. Thanks again for sharing your story.
  84. Chris Jones from Toronto, Canada writes: Just a brilliant, touching, and unexpectedly funny piece. I missed part 1 last week, so I've read both this weekend. Walker's story fills me with a special presence that pushes everything else to the margins.

    This is the work of a great writer and fine human being. Thanks Ian Brown for writing about something in your life that probably wasn't easy to write about. I hope the act of writing somehow helped you process it all.

    I won't be able to see you in the same way on the Human Edge. I wish you and your family all the best this Christmas.
  85. Anne Shirley from Toronto, Canada writes: Dear Ian,
    Your courage in sharing your story is incredible. You are able to so accurately depict what life is like for so many of us. One thing about your story stood out to me, Walker's love of music. My daughter Sarah is handicapped and non-communicative, but shares the same joy at the sound of a melody. Through SickKids I was introduced to a music therapist on the Palliative Care Team, (paediatric.palliativecare@sickkids.ca) and I encourage you to do the same both for Walker and for yourself and your wife. Music can reach children who people think cannot be reached, and music has changed the life of my family forever. Music therapy helped Sarah with expressing herself, and I think it might be able to help Walker express himself so he doesn't have to hurt himself. Being able to hit a drum during a music therapy session can be quite stress relieveing. My apologies for rambling, it is late at night and I am once again a sleepless mother! Perhaps it is my inner motherly instincts that are reaching out to Walker; call it a 'gut reaction' if you may, but when I read your passage about Walker's fascination with music and saw the picture of him with the guitar a veritable chill went down my spine. My own Sarah seemed to have the same rapt look of fascination upon her the first time that she heard someone play the guitar, and words can't even begin to describe her reaction to having her hands on a cello while it was being played! And with that I must bid you adieu, Sarah's cries are calling me back to my motherly duties. Once again, thank you so much for sharing your story with the world and calling awareness upon these issues that seem to so often get passed off to the sidelines.
    Best wishes
  86. Mike Ross from Fredericton nb, Canada writes: I appreciate the empathy shared for the families who have been profiled in the stories and I work for a small organization in Fredericton which helps families facing similar challenges. OPAL Family Services was created 24 years ago in response to a need with one particular family in crisis. The Mom and Dad were at a breaking point and needed a break. They needed regular respite. Our family responded to a call in our church bulletin in 1984 to help out J & B, parents of 'Ryan' That first Saturday in December 1984 was the first time in 5 years J&B were able to go Christmas shopping as a couple! Something most of us take for granted. Thus began a 22 year relationship with our OPAL boy 'Ryan' as we provided much needed VOLUNTEER respite to his parents. One weekend a month, total care Ryan came to our home. He needed to be changed, his food blended, diapers changed and medications administered, and rolled over during the night so he wouldnt get bed sores or have his lungs fill up. We lugged him everywhere our family went. He became a family member. Our three kids (ages 6, 5, and 2) helped lots and after every visit when Ryan went home at 6pm we went out for a cooperation supper to 'the arches' as everyone had to cooperate to pull this volunteer effort off. After 22 years, the hardest thing I think I have ever had to do was to write and deliver Ryan's eulogy. It was like saying goodbye to a son. Ryan taught our family a great deal about concern, compassion,caring and committment. Every community needs an OPAL to help families cope. Sure it is hard work but we always reminded ourselves that we only did 48 hours a month while J&B did 696! Anyone wishing to find out more about our OPAL program need only contact us. As parents hit their senior years, providing care becomes a lot more difficult. Empathy is great. Being a volunteer respite provider is greater. OPAL's goal is to help parents keep their child at home by giving them the respite they need. Mike Ross, ED
  87. K M from Toronto, Canada writes: I am learning so much from Walker. Thank you Ian for bringing him into my life.
  88. Marlyn Macdonald from Toronto, Canada writes: A truly incredible story, and very well put together. My congratulations to Ian Brown. My heart goes out to you and your family and know that I will never complain about silly little things ever again!
    Marlyn Macdonald
  89. Claude Limoges from Windsor - Tecumseh, Canada writes: Thank you to the Brown Family for sharing this story. A friend forwarded this to me with a note, 'it hurts to read... way too close to home' . She was right. Impossible to read without shedding a tear. My wife and I have two wonderful boys. Our second son age 19 is severely handicapped, C.P., quad, non verbal, in diapers...... I will not attempt tell our story, the Brown's have done / are doing a tremendous job . One reader writes “It would be useful to know if there is some way that strangers can contribute their support' There is. Write your MPP. Send them the link to this article in case they have missed it. Based on the responses to this article the public support is there. Not hard to find your MPP, Google their name. Ask them to bring it up to the Minister of Community and Social services. Email the Minister so she has ammunition to bring to the next budget fight. It will sound harsh but Provincial Money will help. When my son turns 21, I turn 50. He will be out of the modified program at school. Home full time. As he gets older, the job gets bigger. I get older the job becomes impossible. The waiting list for a group home opening is a lifetime long. It is my understanding that a family has to be in crisis before an opening is made for them. It is a harsh reality that I must give up my Son's care. But it should be done while we are still here to help and monitor it. Take him on outings, visit the family.... Just try to keep my wife from being involved in his care! But it is about money and very expensive care. Ask any family in this situation about the cost to the house hold Finances. Careers left behind, customized homes, vans with lifts....... if you are lucky enough to somehow afford it. The Brown's storey, so well written, is the same thing only different in thousands of your Provincial neighbour’s Homes. We are good at saving the children, let's not abandon the families. Write your MPP. Write the Minister. Thank you
  90. nancy rother from Canada writes: I found it very sad that Ian Brown thinks that in institutionalizing his little boy that he gave him a great gift in the 'giving him up'. Being a vulnerable 10 year old, being sent to live away from family and being prevented from seeing family for 2 weeks afterwards I would suggest is not a gift to any child. Brown went in search of 'Walker's place' because quite clearly that place was not where one would want to find a boy of 10 - home with his family. On one point I would agree with Ian Brown - I think he is right to feel ashamed when people ask why they don't see Walker anymore and further he should feel more so ashamed that he so honestly reports that he brings him home for the purposes of his research for his book. Throughout the piece of writing, this week and last's, Brown presents his son as an other, a different 'human strain', broken, belonging to others. It is interesting that although his journey to find families and children with CVC resulted in the finding of families who have shared the struggle but whom also have much to say about the gifts and abilities of their child. Brown seems more interested in cataloguing their features, mannerisms and behaviors that reinforce his representation of them still as other. I hold my breath now until next Saturday as I will no doubt read of Mr. Brown's return to a life with less sacrifice - something he mentioned that he desired - and that he will define Walker's behavior now as being happier to be away from his family and being more where he belongs. But in case there is time, I would encourage Mr. Brown to try and add a bit more of a journalistic slant in his version of personal journalism and so present more of a balanced and researched piece that might benefit families who anguish - as I recognize did the Brown family - over how to care for their children under the most challenging situations and whose response to that has been to seek, create, and access services and supports so that a child can stay home.
  91. Jennifer Szerb from Halifax, Canada writes: Dear Brown Family.

    You have opened up your world and helped us understand what it might be like even for a second to walk in your shoes. As an anesthetist I have looked after severely disabled children, and as I looked into the parents faces I wonder how they coped. You have explained that to me even further.
    What I found profoundly moving was your desire to hear your son speak. This Christmas I am compiling a CD, transferring old audiotapes of my kids, so that they will not deteriorate any further. Listening to their voices, explaining their Christmas wishes, singing carols and telling stories has been so wonderful. It is the inner voice, the fears and hopes that convey their humanity.
    Your story can only serve to sp