A tribute to Ben Tobias

Canadian violinist Adrian Anantawan contacted me this weekend to ask if we would pay tribute to Ben Tobias (above with sister Katie), a 14-year-old who was bullied before he took his own life in August. Ben was born missing both legs and his right hand.

Just a few weeks before his death, Ben, who lived in Bothell, Wash., spoke with Adrian, an internationally renowned violin soloist in Toronto who is also one-handed, to learn about how a bow could be adapted so that he too could play the violin. "My husband Mike did a search of one-handed violinists and Adrian's name popped up," writes Ben's mother Jan Davidson. "My husband called him and Adrian was very generous with his time, talking to both Mike and Ben."

After Ben's death, Adrian asked Ben's mother to write an essay about her son. She wrote "A mother's sorrow," below, while listening to this video performance of Schindler's List, which Adrian has dedicated to Ben. Following the essay is a commentary from Adrian. As you know, I have my own "Ben," and when I read this story about Ben Tobias, my heart broke for him and his family. And then I was filled with anger and outrage at the bullies.

A mother's sorrow
By Jan Davidson

My child, my child, where are you now?


I wrap my arms around his sweater and smell his sweet mysterious scent.


He is gone from this earth, gone from my arms, far too soon and far too violently.


I cry the tears that only a mother can cry. I did not, I could not, protect him from his pain. I did not see, could not see, the depth of his pain. Ultimately I failed him.


My sorrow is bottomless and I will live with that forever.


There is a pain when a child dies of disease. There is a pain when a child dies accidently. There is, I think, a much greater pain when a child considers his place on earth, finds it unworthy, and takes his own life.


And when that death is caused by an inexplicable meanness, nastiness and hate, a parent is left with overwhelming feelings of anger and revenge. A state of grace and forgiveness does not come easily or naturally.


My son, my beautiful, intelligent and wonderful son, was bullied. Bullied to death. He was 14.


Ben's life was never easy. Born in Arsenyv, Russia, he was rejected at birth by his parents and abandoned in an orphanage to die. Ironically, the reason we adopted him was the reason he was abandoned. He was a triple amputee, missing both legs and his right hand.


We devoted our lives to him, never leaving him with a babysitter. We nursed him back to health, taught him to walk, ride a bike, swim and tie his shoes. He rose above his disabilities and became a friend to all. He inspired respect and awe wherever he went, yet he wore the adulation lightly. He could never understand why people thought he was special.


He may have been born without limbs, but God granted him an extravagant intelligence. He was a genius, a child savant. He was an accomplished writer and artist and was studying the violin. He had been reading at the college level for years. He could have been anything that he wanted to be. He had the capability to change the world.


Yet as he was struggling to make the leap between childhood and manhood, with all of his issues, certain other children were determined to hobble his trajectory, to cut him down to their level. They began to bully him, in person and on the net. Every day brought a new set of humiliations for Ben. He was assaulted by physical abuse, verbal abuse, taunts and jeers. One young girl made it her life's mission to make him as miserable as possible and sought him out in school and on the net to make his life a special hell. Yet he never told us, never mentioned his humiliations, never revealed his tears.


We had no idea.


So on the warm summer evening of August 7 when his father found his lifeless body in his room, we were racked with "why" and "what if?" It wasn't until later that we pieced together the tortured and painful last months of his life.


The pain of losing a child is an unimagined hell.


The pain of losing a child to bullying is an indescribable descent into blackness. Somewhere out there are children who chose my child on whom to heap their load of scorn, to torture and to laugh at. They sleep peacefully while I am left with only pictures and memories.


We struggle to make sense of their actions. What kind of families do they come from? What kind of people are they now and what kind will they turn into? What kind of society are we creating that nurtures this kind of behaviour? Didn't they see the pain they were causing and didn't it give them pause?


There is something seriously wrong with our society when a pack of children cull from their midst the most vulnerable and fragile of their group -- a physically disabled child -- and badger him to death. This is the work of animals, not human beings. I fear for the future of our race.


For the people he has left behind, there is no "new normal." There is only a hole that cannot and will not be filled. I am left to pray only that he is in a better place. I pray that he is happy, and at peace.


I love my son with all my heart, and will continue to love him until the day I die. We needed him as much as, or more than, he needed us. We aren't complete without him. This is the painful result of suicide.


Benjamin Michael Roman Tobias, July 30, 1996 to August 7, 2010. Rest in Peace, Sweetheart. We will never forget you.


Love, Mom

From Adrian: I originally came in contact with Ben through his parents, who called me up here in Canada. The interesting thing is that I only spoke to Ben once, a few weeks before his suicide. There was a hope that I could connect him up to my prosthetist at Holland Bloorview to see if we could optimize an adaptation for his violin device, which he had begun using recently. He sounded like a pretty happy kid on the phone, and one who was on the cusp of doing some very special things in his life. There is always a peculiar connection people with disabilities share, and I felt an immediate connection with this young man.

In particular, I was hoping that the violin, and music in general, would become a special part of his life, as it was in mine. Looking back, it was music that helped me survive elementary school bullying, as it was not only an outlet to my emotions, but a way of communicating with my peers on an equal footing.

A few weeks went by, and I was curious if Ben had made any progress, and was about to message him on Facebook, when his father wrote to me about the loss of his son. It was a shock, I remember being particularly emotional. That brief connection we had on the phone was sacred: I feel that every amputee is like an extended brother or sister, as we not only share our struggles, but our hopes as well.

I knew I wanted to do something special for him, although I had no clue about his life and story. It was happenstance that Schindler's List was the perfect choice, as I found out after posting the recording that Ben's family was Jewish, and it was one of their favourite songs. Secondly, the Holocaust is, in a sense, bullying taken to a tragic extreme. The same ignorance that killed seven million Jews was the same ignorance that killed Ben. The piece is an elegy to those who have been lost too soon, and a reminder of the pain that these victims had to endure. It is the most meaningful recording I've played thus far in my career, and I'm happy to do my best to make sure Ben's story reaches as many people as possible.

Beyond that, Ben is an inspiration for my life in general, as he is one of the reasons I'm applying for grad school in education over the coming months. It is sometimes not the children's fault that bullying becomes prevalent in schoolyards. The onus remains on parents and educators to ensure that we send strong messages about social justice and inclusion. These changes have to be systemic, rather than within individual classrooms, and I believe that we can do better.

Ben, dear brother, you are not alone, and for those who are going through similar challenges in life: it gets better!

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Happy Canadian Thanksgiving!

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Snapshots of humanity

Snapshots of humanity

Invisible No More records the lives of Canadian children and adults with intellectual disabilities through 100 photos and 35 stories from renowned social documentary photographer and writer Vincenzo Pietropaolo. Vincenzo spent a year travelling to every Canadian province and territory to meet with individuals with developmental disabilities and their families. He photographed them in everyday places - at school, in the workplace, at home, at the zoo, and on an ice rink. He spent days at a time with them, talking to them and writing about what he saw and experienced. I was moved to hear about what he learned and can't wait to see this book.

BLOOM: How did the idea for this book originate?

Vincenzo Pietropaolo: The Canadian Association for Community Living had its 50th anniversary coming up and they asked if I'd submit an idea for a book. I've done long-term projects on immigrants, refugees, cities and so on - but all with a social dimension. They liked my proposal and did some fundraising to send me across the country.

BLOOM: What kind of experience had you had with disability?

Vincenzo Pietropaolo: I was very ignorant about intellectual disability and had only had superficial contact with people with disabilities. There was a boy in my neighbourhood growing up - but we almost never saw him. All the kids would be playing on the street, and sometimes this kid would come out on his verandah. But then his mom would come and tell him to come in. I wanted to call the book Invisible No More because I felt that all of my life these people had been very much invisible. Families are sometimes ashamed, or society is ashamed, and these people were hidden in homes or in institutions.

BLOOM: What did you learn on your trip?

Vincenzo Pietropaolo: I learned that I don't really know what a disability is any longer. Disability is a very loaded word and we're all disabled to a certain extent. When the book came out some people said: "Some of these people don't look like they have a disability. What's your point?" One of the places I photographed was in factories where people were working for pay like everyone else. When I arrived, I couldn't tell who had the 'supposed' disability. Usually the boss had to point the person out and told me: "I wish I had 10 guys like him because they're the best workers: never late, conscientious." Of course sometimes you can tell someone has a disability because of physical attributes, or because they require a lot of care. I learned that people with disabilities have fewer human rights. They are presumed to have disabilities before they are necessarily disabled. They are presumed to be different, or that something is wrong with them. The experience was humbling and transformative for me. I saw that these are human beings who need care or support. But what makes us a great civilization is whether we make enough room for everyone in our society. How can we not do that in Canada, as one of the richest countries in the world?

BLOOM: Were the families you met well-supported or struggling?

Vincenzo Pietropaolo: I saw both, and it reflects class difference. If a family is very poor you have a lot more struggles to overcome. Not just economic, but hurdles of cultural appreciation or acceptance. If you're a bit better off, you can afford certain things - to have an elevator in your house, or a special wheelchair. I also talked to people who had been struggling all their lives - people who were institutionalized wrongly as children, in terrible conditions, and then let out later as if they had been a criminal.

BLOOM: What kind of attitudes about intellectual disability were people facing?

Vincenzo Pietropaolo: They told me they had to always educate their friends and sometimes their family. Sometimes there were problems within families where some family members would say "that's okay," and others just couldn't cope. I heard that when you enter the healthcare system, all of a sudden your kid is less and less your kid, and you're told what to do, and you have fewer rights. I talked to so many mothers. Many said they had to fight the system to educate the health care professionals about their child. In the end, who knows more than the mother I thought?

BLOOM: What kind of impact did these individuals have on their families?

Vincenzo Pietropaolo: I saw tremendous affection and love within the families that I visited. The prevalent feeling I got was that despite parents’ initial trepidation and fear, the child became an integral part of the family and everyone was enriched by it. I remember being in one woman's house and talking about her 11-year-old boy with Down syndrome. She was telling me about all of her fears and difficulties at the beginning. She was very candid. Then this kid burst into the house and jumped into his mother's arms – just like any kid would. This boy is a little different – he has certain physical features that make him look different. But does he have any less love? No.

BLOOM: What were you trying to convey through pictures?

Vincenzo Pietropaolo: I was trying to convey the humanity in each situation. I wasn't trying to create a catalogue of people – but to record moments of humanity that occurred between people and between them and me. Photography is very subjective. As witnesses, every photographer has their own position and subjectivity. With me and my camera, it's important to establish a feeling of trust and rapport. The first step is to be accepted. I'm trying to photograph from within, not from a distance, as an observer. I don't pose people. I ask them to look at me and talk to me. I usually photograph very close – three to four feet away. Eyes are the most important part of a person in terms of a photograph. When you as a viewer look at a picture, those eyes will be looking at you. I also wanted to make it not so romantic. How do you make a mother or father kissing their child warmly less romantic? I don't want to give this rosy picture. But at the same time, I don't want to give a negative picture.

BLOOM: How do you develop trust with the participants?

Vincenzo Pietropaolo: I have to go in disarmed and ready for anything, ready not to take the picture and leave without the picture. I talk to them about what I'm trying to do and people can tell if you're sincere or not. I explain that I don't want them to do anything special. I want to capture ordinary moments: going for a walk, sitting with a coffee, reading a story. Life isn't about drama. It's about ordinary moments that fill everyone's lives. I want to capture that in a picture that resonates beyond just the family involved, to others, across cultures and across time. I went to the Metro Zoo with one mother and her boys. The boy with a disability had adopted a crocodile, so they were visiting his animal. He doesn't talk very much but at the end of the day there was a gift shop and he told his mom he wanted to go in there. He bought a stuffed baby tiger and comes over and says: "That's for you," and gives it to me.

BLOOM: Wow! What impact do you hope the book will have?

Vincenzo Pietropaolo: I hope it will help make people more aware of the humanity that's hidden in our society and that we know very little about. I thought about how I was going to dedicate this book and I walked into an old cemetery that used to belong to a mental institution. The institution is no longer there, but the cemetery is. And I was shocked when I realized that the graves were unmarked. I dedicated the book to the memory of people with intellectual disabilities who died confined inside mental institutions and were buried in unmarked graves, thus stripped of their identity forever. Who were they? We shall never know.

BLOOM: Who published the book?

Vincenzo Pietropaolo: It's published by Rutgers University Press. We couldn't get a Canadian publisher, though I made proposals to a number of them.

BLOOM: That’s a surprise given that the subjects are all Canadian.

Vincenzo Pietropaolo: Canadians have an inferiority complex about their culture. I'm very upset about it. I think there are two things at play with Canadian publishers. Publishing is a business and they think this book will be too hard to promote -- it won't make a lot of money. And the issue of intellectual disability is one that people don't want to talk about. It makes people uneasy.

BLOOM: When is it being launched?

Vincenzo Pietropaolo: The Canadian Association for Community Living has a conference next week in Whistler, B.C. and it's being launched there. There's a book launch in early December in Toronto and then we're trying to work out a cross-Canada tour in major cities.

BLOOM: Have you kept in touch with any of the people?

Vincenzo Pietropaolo: With a few, yes. I talk in the book about someone inviting you into their home and breaking bread with them literally – and sometimes only spiritually – and you can't help but be affected by that. These people are showing you their innermost feelings.

BLOOM: How did adults with intellectual disabilities feel about their lives?

Vincenzo Pietropaolo: Sometimes they weren't very expressive about that, but I could tell from observing them. I didn't ask them if they were happy or sad. Sometimes I'd spend an entire day with them. You don't take that many pictures, you go for a walk. You realize that they're just like anyone else. They're warm. You see personality traits that keep coming out when you spend enough time with a person. I would go in thinking “How will I talk to this guy?” And then you sit down and start talking and you just keep going. I remember meeting a woman who was working in a bakery. She told me she makes cupcakes and I asked how many she made that day. Most people would have responded “About 100.” But she turned around and counted every single one and said “87.” You have to respect that.

BLOOM: Did you find certain parts of Canada more inclusive than others?

Vincenzo Pietropaolo: I remember one Hutterite family where the question of their child being treated different than others never came up. He did everything everyone else did. He was playing hockey and he wasn't as fast as the others, but he was the one who came up with the idea to build the impromptu skating rink. It was just accepted in that community that you look after your family. So everyone contributed in their own way.

BLOOM: Were there other places?

Vincenzo Pietropaolo: There was Powell River, a small mill town in British Columbia, about four-and-a-half hours from Vancouver. They were a very progressive community in terms of support services and a high level of acceptance. It all boils down to individuals who are involved in running their communities. In the end, if you have half a dozen really committed individuals, they can make a big difference. There was a radio station in Powell River that interviewed me and every time they have a show, they have a person with a disability who co-hosts the program. Sometimes the person doesn't talk very much, but the main host includes him or her in the conversation. They're a part of it. I remember a school in Dartmouth, Nova Scotia where a child with a disability attends regular classes. I watched the other children and I realized they were learning as much from him as he’s learning from them.

Invisible No More is a 160-page hard-cover book with 100 photos and is available at all major bookstores. To purchase a signed copy, please contact Vincenzo at vpietropaolo@gmail.com.

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Inclusion: The dream

A number of stories about inclusion have crossed my desk recently.

Filmmaker Dan Habib contacted me about his documentary Including Samuel. It's a beautiful account of how Dan's family strives to have his son Samuel, who has cerebral palsy, included in a regular classroom and community activities. We also meet other children and adults to hear about their experiences with neighbourhood and "special" or segregated schooling. Dan has agreed to do an interview with us about what he's learned as Filmmaker in Residence at the Institute on Disability at the University of New Hampshire.

Including Samuel was hard for me to watch because it reminded me of all of the dreams I once held for having my son Ben (centre above) included in a school that was a mix of kids with and without disabilities. Over the years, we've had experience with a school for kids with physical disability, a self-contained classroom in a regular school, inclusion in an alternative school with mixed-grade classes, a school for the deaf, and now a high school for students with mild intellectual disability.

In Ben's early years, inclusion was promoted but wasn't backed up with the resources needed to allow a child to be a true participant in the class. Once we reached middle school, school board staff didn't even "pretend" that inclusion existed for kids with developmental or multiple disabilities. In a meeting to discuss my son's high-school placement I asked why all efforts for inclusion puttered out after elementary school. "So is Ben going to sit through a regular high school physics class?" I was asked.

How could I respond other than "no."

At that time we visited a self-contained class -- a model program, we were told -- for students with developmental disabilities in a local high school.

It was a windowless room in the basement, accessed from outside through the janitor's room. When we got lost finding it, none of the regular teachers we asked knew it existed. The high school was a noisy arts school in an old building with terrible accoustics, even though some of the kids in the self-contained class had hearing loss. I left seething at the injustice of these students being hidden away in a dark basement.

Yesterday, Lianna, at Life with Gabriel, posted a fascinating video about inclusion for people with developmental disabilities in Alberta's colleges and universities. I haven't had a chance to watch all of it, but it appears that all of the students are able to communicate verbally. I wonder about the opportunities for students with more complex disabilities.

Last year I interviewed Richard Ellenson, a New York ad executive who brought a voice device to market because he was so frustrated with the technology available to his son Tom. Richard and his family were the focus of a 2004 New York Times Magazine article – The Lessons of Classroom 506 – about inclusion.

"The thing I find most tragic is that we as a society have been unable to find effective inclusionary environments," Richard told me. "We haven't found an appropriate teaching model for children of different abilities, so students with special needs are often excluded from a general curriculum and put in a separate environment. Yet in every high school, one kid is going to go to Harvard and one is going to comunity college. Their experience is not so different from that of people who are typical or have special needs and yet we don't make that distinction."

Yesterday I saw this article in the New York Times about an investigation that's revealed 238 deaths of children with intellectual disabilities in state-run homes in Bulgaria over the last 10 years. Three-fourths of them were ruled avoidable. They include 84 from physical deterioration caused by neglect; 36 from exposure to cold or long-term immobility; 31 from malnutrition; 13 from infections caused by poor hygiene; and six from accidents.

"It's allowed to happen because these people don't count as people," said Judith Klein, director of the Open Society Mental Health Initiative in Budapest. "The government policy toward these children has been criminal," said Deputy Minister Valentina Simeonova, of the Ministry of Labor and Social Policy that oversees the homes.

And then I can't help looking at the photo of Ben at camp above this summer, and wondering: If inclusion can happen there, why not elsewhere?

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Canadian helps disabled speak through music

The AFP news agency posted this story about Stefanie Blain's research yesterday. Stefanie recently completed her doctoral studies in biomedical engineering at Holland Bloorview and is now a postdoctoral fellow at the University of Michigan. I just bumped into Krystal Char (with clowns above) and her father Fred and Fred tells me that when Krystal visits with our therapeutic clowns, her physiological signals are translated into a song which produces an enormous smile. "My wife says it's amazing." 

Canadian helps disabled speak through music

MONTREAL, Canada — Children immured within their severely disabled bodies may soon be able to communicate thanks to a newly unveiled device that translates physiological signals into music.

Stefanie Blain studied for five years the interactions of children with severe disabilities and their parents, as part of her doctoral studies at Canada's largest children's rehabilitation hospital, Holland Bloorview, in Toronto.

"They can 'read' their children by observing minuscule movements of their lips, or changes in their breathing," she told a Technology, Entertainment, Design (TEDx) conference in Montreal.

By measuring those tiny physiological signals, Blain was able to show that Max, a 15-year-old adolescent who was seemingly in a vegetative state, became animated when he spotted his favorite toy.

Even completely paralyzed, the body continues to react by changes in body temperature and sweat levels, as well as heart and breathing rates, she explained.

Blain initially created a graphic translation of these physiological arousals.

"But my curves and 3D simulations didn't speak to anyone," she said with a smile. So, being a musician, she wrote algorithms to convert them into sounds," she said.

"Another child, whom we believed was always sleeping, started to emit a 'biological song' whenever clowns entered his room. It was the first time that his parents and hospital staff realized that he was conscious of the world around him," she said.

The software she created deciphers physiological signals and translates them into a range of tonalities, from soft low-pitched sounds when an individual is calm to high-pitched and more complicated tunes when they are thinking of pleasant things.

"Each 'song' is unique," she said.

"Imagine that when I arrived at the hospital, the hallways were quiet leading to the rooms of children who could neither move, nor speak, and not even make facial expressions," she said.

"Imagine these hallways now (full of music), imagine parents who can really get to know their children."

Currently, the research team lead by Tom Chau is seeking to expand the technology to make it possible for severely disabled children to answer yes or no when prompted, and use a computer.

Copyright © 2010 AFP. All rights reserved.

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Outside the lines

Ben had a rough start back to school.

He missed April, May and June in hospital post-surgery, then he had to stay home the first week because of bronchitis. A week later, he got a bad cold and missed a couple more days.

He's still hobbling around and one of the reasons is that his operated-on leg is now one-inch shorter than the other leg. This is apparently a common result of the kind of hip surgery he had, though we didn't know about it in advance. We're hoping a lift in his shoe may help.

When Ben was in hospital for so long we had a bit of a reprieve from worrying about his learning; our attention was focused on his physical and emotional care. We wanted him to survive the body-cast ordeal and weren't sure if he would walk again. That was about all we could focus on.

Now the never-ending question of how to help Ben learn is again front and centre.

The other day I had a call from the school to let me know that Ben had refused to do his “art” work and had broken the teacher’s ruler in protest. Ben isn’t able to do conventional art because his hands are so weak, small and uncoordinated (though I thought it was quite impressive that he had the strength to break a ruler!). For the same reason, he can’t write functionally. In order for Ben to be successful at an art project, it has to be adapted in some way.

I was told he would be bringing home any work he didn’t do in class from now on.

So he came home with a sheet of paper where he had to colour in some squares on a grid using pencil crayons. I sat with him while he scribbled outside the lines, because he simply doesn’t have the dexterity with pencil crayons to colour neatly inside the lines.

I couldn’t understand why Ben had been given this task, knowing it was something he couldn’t physically do. He knows he can’t do it, and he knows he can’t be successful at it.

Now that Ben is home again, I have time to see all of the gaps in his understanding and communication, but it’s hard to know where or how to address them.

In the small amount of time we have every night, do I try to teach him some new signs, do simple math, work on his reading, or encourage him to practise his keyboarding? How do I work on his reading when he can only show he knows a word by signing it, but we haven’t taught him (because we don’t know) all the signs? I ordered a math workbook but we’ve had great challenges teaching Ben math before. Is it because of the approach we’re using? Or, like the art, am I asking him to do something that he just can’t be successful at?

Ben’s intelligence can be seen when he navigates a computer to find a movie on Youtube he wants to see, or to complete a mission with Indiana Jones or Batman on his Nintendo DS. But he can’t express that intelligence in traditional ways – through speaking or writing.

And he’s so frustrated and anxious now. Anxious, I’m sure, that he’s going to be asked to do something that he can’t.

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Follow the leader

Follow the leader
By David Sexton


When my son was first diagnosed with cerebral palsy, and we had an MRI performed and learned the scope of the stroke, I had a hard time concentrating on what the doctor was telling us. I sat in his office holding my wife’s hand and balancing my son on my knee and I tried to focus. My head was a whirlwind though, and it was all I could do not to shut down and stop listening.


“You’ve got to listen and ask, you’ve got to listen and ask,” I kept saying to myself. “For your son, you’ve got to listen and stay cogent.”


I willed myself to attention and watched the doctor’s face the way I sometimes scan the face of an attendant on an airline flight when there’s turbulence; I looked for the signs of trouble that words might not convey.


While I listened, in that hour or so that the neurologist gave us, I heard him say three distinct things:


“This is permanent. This is not degenerative. We don’t know what the long-term impact will be.”


When I heard “...not degenerative,” I think I calmed a little, like I had caught the side of a boat after heavy swimming. I clung to that understanding. I was relieved that, whatever it was that had happened to my son, it was over. Later tests and blood work reinforced this understanding. There was no underlying condition that could make a second stroke likely; there were no accompanying conditions that would make his prognosis worse.


I took great comfort from those words and we set about doing everything we could to assist my son to recover physically.


I suppose at the time, my unequal weighing of the doctor’s message created a set of incompatible beliefs in my head. I somehow felt that the “not degenerative” part of the doctor’s message negated the “permanent” part. That his words would act like self-cancelling components to an algebraic equation. And like I often did in math class in high school, I ignored the “we don’t know” part of the equation all together. It didn’t seem to fit and I wasn’t ready for that.


I suspect this self deception was natural; I needed a way to move ahead and those tougher truths were too much for me at that moment. I was living as one of my literary heroes, Dr. Samuel Johnson, would say, not from day to day, but from hope to hope.


“I can help him now,” I thought. “I couldn’t prevent what happened to him, but now I can make it right.”


To a great degree that misconception has been helpful. The hope that it gave helped me to take a practical approach to my son’s conditions and treatment. We worked (and still work) very hard to make every therapy appointment count and to help him recover.


My son can walk now. He can talk. He can move his left arm, the affected arm, when he thinks about it. These changes mark real progress, and the smiles and confidence I see in his face tell me just how important this progress is. When I see him walk and climb and use the slide at the park, I might as well be watching him fly.


But even as my son has made these strides forward, it’s becoming more clear that when nature touched him with cerebral palsy, it left a mark that would always be a part of him.


“This is permanent. We don’t know what the true impact will be.” These words have come back to me as the immediate dangers have passed, and I’ve only begun to wonder about them.


I think I’ve put off thinking about these words, not only because they were hard to hear, but because they brought home the mystery that the future holds for our son. That no matter how much therapy we do, no matter how much coaching and early education we give him, or how much we include him with his age group in school, my boy is on a different and unknowable path. That as much as I like to feel that I’m clearing the way for him, all I can really do is follow behind him.


Sometimes I find myself doing this following literally.


“Uh oh, Daddy, he’s on the stairs,” my daughter will giggle when her brother breaks past the barricade we put in front of our first to second floor stair case. “There he goes!”


“No way!” I shout from behind as I race to catch up to him – he’s moving pretty quick these days – and prevent an unplanned stumble. “Get back here little man!”


He laughs when I catch him. He looks up at me with a twinkle in his mischievous blue eyes and lets out a terrific little belly laugh.


“No way,” he repeats with delight.


I look in those blue eyes and wonder how different things are for him. I think about the half of his brain that was hit by the stroke and the half that is now free to work as it will. I listen to the numbers and letters he identifies spontaneously from road signs and cereal boxes and wonder what’s in store for him and for us. I think about the songs and stories he’s beginning to memorize and wonder what he will do with his life.


Some of this is ordinary wondering about the future, I know. We all have our riddles, I suppose; the traits and qualities that surface in us seemingly from nowhere. My children will sometimes exhibit a look or a laugh or a peculiar talent or weakness that seems new and inexplicable. When I see this, I imagine lost ancestors before us in the forgotten past whose once familiar qualities are resurfacing. I think these seemingly new qualities are like a flower bulb that has lain dormant in a garden for many years, only to spring up unexpectedly to the owners of a home who never recall having planted it.


But when I think of the doctor’s words, “We don’t know what this will mean,” I know some of what I see in my son can’t be attributed to a distant forefather or mother. Some of these traits that surface now are part of his body’s response to the stroke. His brain forced into use pathways and circuits that would otherwise have remained dormant. The resulting changes and growth of his person are ancient beyond the reach of family memory or even written history; they are the inheritance of ages of human evolution that have made our bodies tough and robust and resilient - even to stroke. I wonder what miraculous traits of humanity are now coming alive in our boy and what they will mean for him.


There is no way to know for sure, but it puzzles me mightily now.


These days, when I find myself trying to riddle these unknowns out, I feel as though I’ve taken up a difficult book that has suddenly become intelligible. That my mind and heart have grown with our struggles and that I am now ready to acknowledge certain truths about the cerebral palsy that I was not ready to accept before. I feel as though we’re out of danger and like a man will sometimes do after a hurricane, I’ve tentatively stepped out and am looking around to see what the great winds and rains have changed in their passing.


I’ve been afraid I think, and the fear is just beginning to pass. I never thought the words “permanent,” or “we don’t know,” would mean anything else but a fearful burden, but this seems to be changing.


“What a mess!” my son says, imitating me again, as he overturns a bucket of toys on the floor in front of him and sets about ordering those same toys into some arrangement of his own imagination.


I watch him play and I can do nothing but smile.


“He’ll make his way,” I think hopefully. “He’ll find a way.”


I’m not ignoring the realities. I know that way won’t be easy. I know he’ll have unexpected struggles ahead and that the world can be a hard place. We still have a long way to go with his therapy. We still have a long way to go to see what help he may need along the way. There will be many tough days I’m sure.


But when I look at my son now and accept both his progress and the ongoing mystery of his condition, I see mostly good in his future; I see his unique and remarkable potential. Whatever the future may hold for him, I expect that he will be able to face it with confidence. What I see mostly now, for my son, is hope.


David is a software development manager in Hoboken, New Jersey who writes about parenting in Scattering Bright. You can read an earlier piece he wrote for BLOOM at Breaking windows with my son. Pictured above is his adorable boy.

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