A teen's tips on raising great kids

By Abdi Hassan

Hi! My name is Abdi! I am 18. I have a disability called cerebral palsy. This disability causes my muscles to stiffen up and gives me back pain, which is why I have a power wheelchair to assist me wherever I want to go.

I’m going into my fifth year of high school to upgrade some of my courses like English. I really enjoy writing stories and news articles. I love to exercise in school and have a great time hanging out with my friends.

Here I’m going to share my tips for parents who have kids with disabilities. I’m going to talk about how you can make sure your kids are safe, happy and as independent as possible.

First, I am going to tell you about three things my parents did that have improved my self-confidence and ability to be independent.

Number one, my parents learned about, and helped me to get, the equipment and supports that I need. My parents supported me in applying for the Ontario Disability Support Program.

The ODSP helps people with disabilities who are in financial need pay for living expenses like food and housing. My parents contacted the government and helped me to set up meetings to follow through on my application. If parents are unsure about how to apply for this funding, I strongly recommend contacting your social worker or asking another health professional at your children’s rehab centre.

Number two, my parents have started letting me take more responsibility for my actions. For example, I’m now able to book WheelTrans on my own, where before my mom would speak on my behalf. This is important because as your kids get older, they want to take control of their lives. I feel proud when I do things on my own. I want to be able to look after myself and show my parents that living on my own is a realistic goal.

The final thing my parents have done well is show me a lot of love. That really encouraged me to do my best and to believe that I could set my mind to anything. My parents always were there when I needed help with something. Your kids can probably tell by what you do and how you talk to them that you love them. But I think it’s a good idea if you tell your child every day that you love them.

Now, I’d like to talk about three things I wish my parents had done to help me feel confident while having a disability.

To start with, sometimes my parents make it hard for me to go out with my friends. They may not take me seriously when I tell them I want to go out or they may not let me go because they’re worried about me.

Having friends in my life is amazing. It’s like having siblings but they don’t live with you. I have the coolest friends that I know. They make me laugh and make me happy to come to school every day.

It’s hard to have fun with them after school, though, because my parents are too cautious. They don’t always feel comfortable letting me make my own decisions when it comes to my social life. Think about how you can support your child so that they can see their friends regularly.

Next, I sometimes feel like my parents don’t think that I’m going to have a career or be able to continue my education after high school. While they ask my siblings, who don’t have disabilities, about what they’re going to do when they graduate, they don’t ask me. It makes me feel like they think I’m going to stay home for the rest of my life. But the ultimate goal for me is to live independently. My parents have a hard time dealing with the fact that I want to live on my own. I want my parents to know I still love them, no matter what, and I’m not trying to disown them.

So please, talk to your kids and teens about what they want to do when they grow up and finish school. Help them dream.

Finally, I sometimes feel that my parents overreact around me, especially when it comes to my wheelchair driving. Sometimes they say I can’t drive my chair, and that I crash into walls a lot.

Occasionally, my body is in so much pain in the mornings that I do crash. I can’t help it. But it makes me feel upset when my parents panic about accidents. And that makes me more likely to have an accident, because I’m anxious about what they’ll say.

So parents, as much as you can, try to remain calm and don’t panic with your child. Encourage your kids to ask for help if they need it.

I hope you enjoyed my story. My message to kids with disabilities is that their disability shouldn’t stop them from their dreams and aspirations. Keep on fighting and never give up. Stay positive—that attitude always helped me work hard and become a better person.

As parents reading this, I want you to take a look at your child and smile and tell them you love them. To me that is the best way to stand alongside your child with a disability and to make sure that your child is safe, happy and as independent as possible.

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The 'unwelcome' mat

By Steve Kean

I love Toronto, I really do. But sometimes I just don’t feel the love in return.

A few weeks ago was one of them. I was at St. Lawrence Market getting supplies for dinner with my wife and a friend when my favourite cheese guy told us that he was leaving to manage a new restaurant in the neighbourhood. But the new hot-spot-in-the-making—in a historic building—won't be wheelchair accessible, he said, so I won't be able to check it out.

I have spina bifida and use a wheelchair.

I've been inside 400-year-old buildings in the U.S. that have been retrofitted, so I don’t buy the “well, it’s a historic building” argument anymore.

In 1967 my parents were supposed to be rejoicing in the birth of their first child. Instead, they watched helplessly as concerned doctors and nurses rushed to save my new life. Since that fateful day I've had over 15 surgeries and probably consumed more than $100,000 in health-care dollars. A system of people, most who've never met me, has expended substantial resources to keep me alive.

So why then is it that the system that valued me so highly when I was born doesn’t deem me worthy of having an accessible environment? Access means I can contribute and live a full life.

Too often, our health-care, businesses and city attractions and amenities seem to work against people with disabilities and their families.

Is it because we're not cute little babies anymore? Do I not matter because I'm a grown up—sometimes smelly, sometimes scruffy? Does the government believe that I should take care of all my needs just like any other adult?

Well, I can take care of most of them. I do a job, two in fact. I help to pay a mortgage and even clean the place. And, I cook. In my own home, designed from the floor plans to meet my needs and those of my wife, everything works. Our little box in the sky is my sanctuary. There I feel welcome. But life is lived outside too, and that’s the problem.

Sometimes as I wheel around Toronto I notice every barrier that society has put up to make me and other people with disabilities feel unwelcome.

I count every step. Every staircase. Every door without an automatic opener. Then there's the insensitive jerk who luxuriates in the comfort of the oversized, accessible public bathroom stall as I wait, trying not to piss my pants.

Usually I am 'grace under pressure.' But occasionally I come apart. I just snap. By the time I get home I'm raw. I need a hug. I need to vent.

There, in my soft place to land, I feel the warmth and love of my wife's hug. She listens quietly and intently as I recount my day. Sometimes I scare her: “Why did they bother to keep me alive and healthy only to throw me out into a world that doesn't appear to want me?” I'll say.

Businesses see accessibility as an added expense and don’t see the value. Many employers see a wheelchair or some other difference and don’t see the skills and abilities of a person. They have to be shamed or worse, forced by the law, into making people with disabilities part of the equation.

I've thought a lot about how I can cope better in a city that makes me feel like a burdensome afterthought, instead of an integral part. Maybe some of my ideas can help youth with disabilities and their families.

First, seek out that hug. Family and friends are on your side and we all need allies when we leave our sanctuaries and go after what life has to offer. Once your spirit is bolstered and a little less raw and raging, look carefully at the particular barriers that are getting in your—or your child's—way.

Who’s directly responsible for a barrier? Who can help you take it down? Try talking to them. It might just get fixed and you’ve helped not only you, but everyone with a disability who comes after you.

Some walls that get thrown up in front of us can’t easily be torn down and so all we can do is try to work the problem. Speak to someone on the ground, maybe the store manager. If that doesn’t do it, work your way up the line.

Toronto hasn’t put out the welcome mat for people with disabilities. Will it ever?

I can’t wait. Time is moving forward and limited. I am squeezing every ounce of life out of my years, to borrow from a cliché. See the golden light first thing in the morning. Take a picture in your mind or with your camera or phone. But see it. Feel it. Notice everything you can.

When the things you can’t access get under your skin, ask for that hug and then fight just a little for change. Other people will notice. The next person with a disability will be able to spend more time here enjoying life, and less time struggling and feeling excluded, thanks to you. Maybe they'll even feel welcome in Toronto, like they belong.

Steve Kean works three days a week as programs and services coordinator at The Spina Bifida and Hydrocephalus Association of Ontario and two days a week as Steve Kean Photographer, doing commercial photography. Visit if you are a foodie!

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'In the absence of care, medicine is dehumanizing'

By Louise Kinross

Medicine is made up of two things: treatment and care.

But patients and clinicians alike are suffering from a devaluing of care in the health system, says Kristen Slesar, a psychotherapist who works with trauma survivors. Slesar, who supports child witnesses at the Bronx District Attorney's Office, was speaking at a three-day narrative medicine workshop at Columbia University in New York.

“Treatment is the science side—the technology, the medication, the hospital bed,” said Slesar. “Medical competence has become about how many machines and tests and things we can apply. Patients need treatment. But what happens when treatment fails or the patient dies? What happens when there is no treatment?”

The other side of medicine is caregiving—“the efforts to make someone feel physically comfortable or emotionally accepting of pain or imminent death,” Slesar said. “Care is about the inbetween moments—it's about how treatment is delivered." 

The best care happens when a clinician attends to and honours the patient's story in a way that makes the person feel understood. “Suffering is not a neutral experience,” Slesar said. “There's nothing neutral about life-changing illness or injury or the shame, stigma, fear, hope, doubt and dread that go with it. Interventions [by clinicians] are either positive or negative. If the encounter doesn't add to healing, it's hurtful. In the absence of care, medicine is dehumanizing.”

Patients are consistently unhappy, Slesar said, not with the results of their medical treatment, but with the experience of receiving treatment without care.

Care—which demands authenticity and vulnerability on the part of the clinician—is given short shrift in our medical system, Slesar said. “Offering care is equated with consumption of time and providers are forced to see more patients than is fairly and equitably justifiable. When the quality of interaction with patients is seen as a function of time spent, and there is no time, good medicine isn't consistently offered.”

In addition, caring for patients is construed as “crossing into 'emotion land'—as unprofessional and subjective, as if by being authentic and compassionate we compromise our smarts and whatever we learned in medical school [flies] out the window. We deny that we are real people who are just as permeable as our patients.”

Doctors are encouraged to stay emotionally detached as a way of protecting their mental health, Slesar said.

Yet burnout in doctors is a widespread problem and doctors are more than twice as likely to kill themselves as non-physicians.

“Burnout causes mistakes and is incredibly common and is something people don't want to talk about,” said Slesar. “Burnout is a major cause of poor healthcare delivery. It's the cause and symptom of significant damage and suffering, not just in patients but in [clinicians].”

Not only are sterile medical interactions bad medicine for patients, but they hurt physicians, Slesar said. “Physician satisfaction comes from relationships with patients.”

But to have rich relationships with patients, doctors need to be able to think and talk about their own emotional reactions to working with people who are suffering.

Just as patients need a clinician to witness and help them find meaning in their experience, “we need to acknowledge who we are and what we do as providers. We need to be able to voice these doubts and fears: the sadness of the first death certificate, the embarrassment of not knowing an answer on rounds. We're loathe to talking about our fears and mistakes. We can't sit with uncertainty or fallibility.”

Writing groups for clinicians are a forum for “giving and receiving testimony, which isn't about the facts, but about the experience and the emotion” of practising medicine. “It's that we do it together,” Slesar said. “One person reaches out for a way to express and the other reaches towards to bring it in and let the person know they are not alone.”

In narrative medicine, participants read and discuss a passage from literature, then respond to a writing prompt, writing for three to five minutes. Those who are comfortable read their pieces aloud. “We hold pieces of writing out in front of us in this loving, benign ritual,” Slesar said. “We don't focus on the quality of the writing. We write about ourselves, and even if the question is about our practice, the writing is self-revealing and self-creating. We see things differently and we see different things.”

Unfortunately, efforts to 'care for the caregiver' like this are often pathologized, Slesar said. “You're accused of being weak. Or maybe you're not cut out for the job. And when you do take time to take care of yourself you feel you're being indulgent. Self-care may even be construed as immoral.”

Given the high rates of physician burnout and suicide, “nothing is more needed than nourishment for the imagination,” Slesar said. “What quality of clinician do you want to be? How can we go from the current state of affairs to something better?”

Medicine done well is a “co-construction between patient and provider, a giving and receiving. The patient ceases to be an injury or illness and becomes a person because we are a person. There is an openness to suffering by both participants.”

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Why I chose a 'special' school for my child

By Anchel Krishna

Having a child means making lots of decisions. When you have a child with special needs, you make decisions on top of decisions.

Last year, as my husband and I prepared for our daughter, Syona, to enter junior kindergarten we had a big decision to make: Enrol Syona at our local school or in a specialized three-year program that incorporated the standard curriculum with additional supports and therapies.

The local school meant a connection to our community—to other parents and kids who live close by. The special program meant three extra years to give our daughter a head start with smaller classes and therapists and teachers looking for ways to incorporate therapy into her day-to-day activities vs just setting up supports for her.

We participated in transition meetings, made lists, weighed the pros and cons and decided to enrol Syona in the specialized program.

One of my biggest fears as Syona’s mom is that people will look at her physical disabilities and communication challenges and underestimate her abilities. I’ve seen and heard how quickly and easily that happens in the school system. I figure three years of the specialized program—and the reports from teachers and therapists it'll generate—as well as opportunities for Syona to progress and mature will prepare her to transition well to our neighbourhood school.

Syona’s had a strong start so far in the specialized program. Despite the long commute, she has a great bus driver and has made some strong relationships with the kids on her bus. This is a great way for her to start and end the day. She has a wonderful and warm classroom team who truly care for her.

There have been tears (lots of tears). But that was to be expected. Syona’s an only child who spent the summer with her grandparents and several caregivers. She does a lot of one-on-one therapy. Up until this point, almost every adult in her life has provided her with undivided attention. At school, she’s learning to be a little more independent, play by herself and with her peers and, yes, that sometimes means a few tears. I know Syona will power through them and thrive at school.

When Syona comes home from a long day and asks to go to the park and I have to say no—because there's only just enough time to have dinner and a bath before bed—I wonder if we made the right decision.

But when she comes home and tells me about going swimming, or riding an adapted bike for the first time, I know we’ve done the right thing. As parents we make the best decisions we can at any given moment. I’m looking forward to what the next three years will bring.

Anchel Krishna is manager of communications at the Children's Treatment Network. She recommends these two CTN e-bulletins on Transitions to school and Special needs and the school system. Anchel blogs about special-needs parenting at Today's Parent.

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Stories are 'clearings' that unite patient, clinician

By Louise Kinross

In a Buenos Aires hospital, pediatricians carry an unlikely medical tool: a transparent umbrella decorated with strips of multi-coloured chiffon that sway, forming curtains. 

When doctors invite a child into this intimate space, “this little colourful cave, children will tell them things in the umbrella that they wouldn't tell them otherwise,” said Dr. Rita Charon, founder of the graduate program in Narrative Medicine at Columbia University College of Physicians and Surgeons.

Dr. Charon, a general internist with a primary care practice at New York-Presbyterian Hospital, was speaking about the role of stories in health care at a three-day workshop in New York that drew clinicians, writers, academics and advocates.

“Stories open wide the doors between self and other, and through these open doors move the teller and the listener, and through the power of the stories the teller and the listener get to inhabit the other and, as a result, to even better inhabit their own self,” she said.

Dr. Charon said that when she first meets a patient, she asks: “What should I know about your situation?” She then types into her computer what the patient tells her, making particular note of themes. She asks the patient to read the story she's transcribed, and to correct anything she got wrong or that's missing.

“This simple narrative routine in the office makes for a different answer to the underlying question 'What is health care for?'” Dr. Charon said. “We can answer that, in addition to other things, health care is for recognition—self-recognition, other-recognition, mutual recognition.”

Stories told in clinics and hospitals are universal “because they exclude no one,” Dr. Charon said. “We are all human, we have bodies, we are mortal and we will die and so when we engage in telling or listening to stories of illness, we are responding to some foundational feature of being that unites us all. Stories get under the distinction between the sick and the well,” between those with and without disabilities.

“Spaces of attention” can be found anywhere in the health-care setting—underneath the Argentinian pediatrician's umbrella or in the medical clinic, emergency room or on hospital rounds, Dr. Charon said.

Attention requires the clinician “to listen carefully, to perceive, to take in and absorb that which the other is saying,” Dr. Charon said.

Representation is the writing of the patient story. “Until we confirm form on some formless, chaotic thing, we don't have it visible to us,” Dr. Charon said. “So attention and representation are two side of one medallion swinging.”

The patient story is co-constructed by the teller—the patient—and the listener—the clinician. Dr. Charon noted that the art collector and critic Leo Stein said: “No art work exists without a spectactor. The spectator completes the work.”

What results is affiliation, or attachment, between doctor and patient. “The reason to do this is being with the person whose narrative you are responsible for hearing,” Dr. Charon said.

The Canadian short-story author Alice Munro likens a story to “entering a house.” Dr. Charon thinks of stories as clearings: “Within the bower of a story persons gather and things happen differently when persons are gathered. We're all under the story's spell, we're all united in the climate and the diction and the images and the illusions.”

Because of the reciprocal, circular nature of stories, “attachments and affiliations happen that never would have happened if you were just talking about patient safety.”

Getting a patient story is not easy. “Stories are risky to tell and listen to,” Dr. Charon said. “They make you feel doubt. If they're well written, they don't have answers, only a question. That makes some people queasy.”

Close reading of a patient story “is a kind of reading where every word counts,” Dr. Charon said. “It's not easy, it takes skill. Stories don't reliniquish their treasures easily. Like us, the stories guard their treasure.”

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Help us BLOOM

Please check out the fall issue of BLOOM.

I'm sharing my editorial below, which is about an amazing opportunity to donate to BLOOM and see your contribution matched by the Coriat family, doubling the impact. Please take a moment to read and share widely. Thanks! Louise

BLOOM is the voice of parents raising children with disabilities—a voice that’s missing in many mainstream parenting forums.

Now Canadian parents David and Lynn Coriat challenge you to raise that voice so that more families here and around the world can benefit from BLOOM’s online community of information, inspiration and support.

Make a donation to support BLOOM by December 31, 2014 and the Coriat family will match your gift, dollar for dollar!*

Who are the Coriats?

They’re parents of a child with a disability, like you and me. For the last three years, David and Lynn have championed BLOOM with a substantial donation that funds the blog, print magazine, BLOOM speaker series and e-letter. Their vision and generosity have allowed Holland Bloorview Kids Rehabilitation Hospital to lead the international dialogue on childhood disability, bringing our award-winning content to families and professionals everywhere.

David and Lynn believe in the power of BLOOM. Do you?

BLOOM is an international phenomenon. We have readers in 166 countries.

When parents visit the BLOOM blog or open our magazine, they see and celebrate families like their own. They feel less alone, more empowered. They get the best parent and professional advice and the latest on clinical and research advances. But most importantly, they’re united in an international community that speaks their parenting language. They feel heard and understood.

In this issue you’ll read stories from families in the UK, Italy, Holland, United States and Canada. No matter where you live, they will resonate.

Here’s how one parent describes the impact:

“Every issue makes me smile, shed a tear, write down an inspirational sentence or piece of advice or lead me to research a new product or technology. I love the holistic, family-centred approach…especially the fact that sibling issues are not ignored. The stories in BLOOM touch and change lives. What a wonderful gift.”

We’re asking for your support in order to reach more families with increased stories and content, meeting the needs expressed by our readers. Please consider a donation now, knowing that the Coriat family will match your gift and double its impact!

Every bit counts!

With gratitude, Louise

*The Coriat family will match any donation to a maximum of $50,000.

To make an immediate gift online, please visit our secure website at: http://hollandbloorview.ca/BLOOM

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Hope that high-fat diet will tame a little girl's seizures

By Stephanie Ly

It was a sunny and glorious Muskoka morning when our daughter, Pepper, had her first seizure. It wasn’t the first time I’d seen a seizure, but it was alarming to watch my nine-month, otherwise perfectly healthy baby girl, drop and seize.

We called 911 and had her taken to the nearest hospital. Since it was her first seizure, she was otherwise healthy and her vital signs all checked out as normal, we were sent home without further treatment.

Two seizures later that same day, she was treated with a low dose of her first anti-convulsant medication. So began a series of hospital visits and medication trials for Pepper worthy of an 80-year-old in poor health.

My only knowledge of the medication Pepper was first prescribed was that it was used to treat dogs with seizure disorders. No joke. I had a friend who treated his dog with the same medication after the dog suffered a stroke and began to have seizures. So why were we treating our daughter with this medication? And why, when this drug stopped working, was she prescribed another anti-convulsant? And then, yet another? And after a year, why were we still manipulating her doses with little effect? Why? Why? Why?

Epilepsy, or rather intractable epilepsy, as Pepper is known to have, is a condition where treatment fails to control seizures. Since she was nine months old, Pepper, who is about to turn three, has experienced, at most, a month’s repose from seizure activity.

Despite pharmaceutical intervention, she continues to have seizures regularly and we don’t know why. Pepper doesn’t appear, from numerous genetic tests, to have any genetic basis for her condition. Nor does she appear to have any physical cause for her seizures. She just has them. Like that. And like that, she takes medication, which doesn’t control her seizures.

The medical community doesn’t always discuss with you all the pros and cons of the medication they prescribe, though they attempt full disclosure based on their awareness. Instead, their mandate is to treat the symptoms in the most effective and, to their knowledge, safe manner available. Sometimes, in times of crisis, you are left wondering, where are my options?

First Do No Harm is a movie about a mother trying to save her son with intractable seizures. The concept of “first do no harm”—a fundamental medical precept by Hippocrates—is important to our family because for two years Pepper was given an old seizure medicine known to cause developmental delay, without doctors telling us of this connection.

Our daughter has developmental delay, so that feels like a failure on our part.

In First Do No Harm, the child is finally treated using the ketogenic diet, which is a natural alternative to medicine that we learned about at the Hospital for Sick Children.

The ketogenic diet alters the body’s metabolism to create changes in brain chemistry that prevent seizures in some people.

Pepper was admitted to Sick Kids in late May of this year to begin her own journey on the ketogenic diet. The diet itself is a low carbohydrate, high-fat diet in which the body converts fat into energy, rather than using glucose, in a process called ketosis. Ketosis is the same process that kicks in when someone is fasting, and fasting has been a traditional seizure treatment for centuries.

There are a few variations of this diet used to treat epilepsy. Pepper is following the MCT Diet, which uses Medium Chain Triglyceride oil as one of the flash points for initiating ketosis. It is a strict diet and it takes patience, vigilance and strength. Good thing we have those—in spades.

Since Pepper started the ketogenic diet, we have had major adjustments in our household. Time management has been a huge shift. Meals must be prepared in advance and with precision (we weigh and measure to the very last point of a gram). The meals are then packed with care so as not to expose the oils to light, or to spoil the fresh foods that Pepper goes to preschool with every day.

Her meals are administered, much like medication, at certain times of the day, with even spaces in between. She’s given plenty of water to keep her kidneys clean and stone-free. Her ketone levels are monitored twice daily, her blood glucose levels are checked occasionally and she is always being watched for seizures, digestive ailments, fatigue or discomfort. Since day one of her first seizure she has not gone without someone’s eyes on her, and this diet hasn't changed that aspect of our lives.

What has changed, however, is that we've seen cognitive improvement! Since the second day of her admission to hospital, Pepper went from being mostly unresponsive and in her own little world to interactive and engaged. It was something immediate and so noticeable. It gave us hope, and it still does. As for seizure control, we are still in the process of determining the diet’s efficacy and will be for a few months.

We’ve definitely seen a reduction in seizures, and Pepper has recently gone three weeks without a seizure, which has been remarkable and promising. We have hope, something we were slowly losing over time.

A typical day on the ketogenic diet starts the night before, or sometimes many nights before. Fresh food is always prepared in advance, with very few ingredients and simple foods. Pepper does not get any processed food, with the exception of a specialized drink to raise her ketones. Otherwise, she is getting a protein, a carbohydrate, a vegetable and/or a fruit and a fat at breakfast, lunch and dinner. Each of these food categories is weighed according to her meal allowance.

Preparing meals two days in advance and having things pre-chopped helps a lot, as does buying frozen fruits and veggies (it’s easier to improvise when you have a freezer full of fruits and veggies).

Pepper’s combined meals total approximately 900 calories per day. This is within range for her age. The meal sizes however, appear so small. For example, at lunch, she might get roughly the size of a tablespoon of rice, a tablespoon of chicken, a tablespoon of peas, a pad of butter and four grapes. To think that I could almost polish off a whole roast chicken to myself is eye-opening.

It’s also not easy. Most children Pepper’s age would turn their cute pouty faces away from such food restrictions. This is where her good nature and developmental delay are an advantage. She doesn’t have the cognitive awareness to protest, or to expect anything different. She just accepts what she is given.

We on the other hand, have had to adjust to many things. Our shopping list, of course, our eating schedule and finally and most challenging of them all, our routine. Finding the time after a long day’s work to prepare everything has been a challenge. But we do it.

Just as Pepper continues to smile with each meal, and with each newly acquired skill, and another day passes where she doesn’t have a seizure, and we all finally have a restful night, we adapt.

We accept that our daughter has a seizure disorder that may or may not be treated. We live day to day with the uncertainty of Pepper’s seizures. We have good days and horrible days. It’s a constant up and down of emotion.

Our biggest coping mechanism is Pepper’s smile and her laughter. It’s amazing how when I look into her eyes, and connect with her, I forget the worries outside. She has a way of healing our fear and disappointment. I can shut out the negative energy when I focus on the positive she gives me.

Follow Pepper’s story at UnSeizeTheDay. 

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Joy and grief: The dance

By D. Christine Brown

Three years ago today our son Lucas’s high fever and subsequent seizures sent us by ambulance to hospital where he suffered severe brain inflammation.

Thankfully he survived and is recovering nicely, albeit with brain injury that includes significant developmental delay and autism.

Every single day I juggle the intense feelings of joy I have with my son with immeasurable grief and resistance to the difficult reality of parenting him with his acquired disability. I feel left out of the real world of raising children when I see "typical" school kids everywhere.

This last week has been especially trying on my husband and me as parents. Lucas had a few minor "accidents" that required some first-aid attention which triggered Lucas's hospital memories of being poked and prodded.

Three years ago, Lucas was forced to endure endless IV changes and needles for bloodwork, screamed for hours on end with his steroid treatment, would get wound up in his IV from trying to spin out of the discomfort, shrieked in terror as the student eye doctor checked his eyes, and the list of horrors goes on...

So his new coping mechanism to deal with daily routines that involve touching him—such as changing diapers, bathing, brushing teeth or tending to "boo boos"—is to scream at the top of his lungs, kick non-stop and squirm. This means both of us have to physically hold him down while he shrieks in distress.

He transmits such terror in his prolonged screams that I fear the police will show up at our door. I worry that our neighbours must think we’re trying to beat him. Luckily, a script from his current favourite Thomas and Friends song has provided some relief. We tell him "Accidents happen now and again, sometimes just by chance!" 

We both agree that Lucas’s resistance now is more about fear than pain, but it rips at my heart strings nonetheless.

This makes me reflect on our own resistance to Lucas's new life, post brain inflammation.

As parents, I believe we’re resisting the overwhelming responsibility of parenting Lucas after his brain injury—a degree of fear, uncertainty and change that most parents don’t face.

Since leaving Holland Bloorview as inpatients, each week brings new challenges, and we are worn down. We want a break from watching our child suffer needlessly, even if the suffering is sporadic. We want just the good and to leave the bad aside.

Instead of embracing the new and heightened responsibility, we feel burdened by it. We’re so relieved when finally things start to flow again, just to get slapped down by the next cold, fever, scrape, sliver, or trip to the dentist. Every normal life event brings such trauma into Lucas's life. We don’t know if it’s because it sparks memories of his hospitalization, or if it’s his autism or just his personality.  

Lucas’s resistance to our helping him cope with daily activities makes me think about our own resistance to the reality of parenting a child with an acquired disability. And just as his resistance appears counterproductive to us, perhaps fighting our “new normal” makes things harder than they need to be. Reflecting on this three-year-anniversary, it strikes me that life has ups and downs. Ours are just more extreme, in both directions!

I believe my own current favourite Thomas and Friends song says it best: Every Cloud has a Silver Lining

Life is full of surprises, full of ups and downs 

And so to have a silver lining, first there must be cloud 

Every cloud is silver-lined, even when it rains 

So don't get too downhearted, as things are bound to change 

All you've gotta do is wear a smile and you will find 

Your sun will shine 

When you're feeling down it doesn't help to wear a frown 

Never lose hope, you're sure to cope and you can carry on. 

Just as Lucas resists what is uncomfortable, so we resist the discomforts of feeling responsible for Lucas's suffering.

We know we need to accept and take responsibility for our son’s behaviour while he’s at this developmental stage. But we can't allow ourselves to feel responsible for his or anyone else's feelings. We just have to keep doing what's right and show him the path of joy.

We have to be tolerant of life's ups and downs. This will in turn teach Lucas to accept his own ups and downs, and the fact that we can only control how we react to what life throws at us.

As I sit in this restaurant today waiting to pick up my son from school, writing this blog, the two songs that just played couldn't be more timely: That's Amore and L-O-V-E. I feel that it is fate—or my late grandmother, from somewhere in the universe—reminding me that our life with Lucas is all about love. Focusing on the joy and love will get us through the bumps in the road.

Lucas's mom has written for BLOOM previously: I am warrior mom: Hear me cry and roar. Follow Lucas's progress on twitter @LucasRecovers.

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Furniture that fits every child

By Megan Jones

Despite the many sights in New York, it was children’s furniture that stopped Jason Nolan in his tracks.

While walking the city during a trip in 2008, the Toronto-based early childhood studies professor and some friends came across a striking Manhattan storefront. Behind the large window was a collection of kids’ furniture. Each piece was brightly coloured, each was different and individual. The group instinctively stopped and moved in closer.

As they examined the furniture through the glass, they realized it was handmade. Slowly, it dawned on them: the chairs and stools and rockers were custom pieces for kids with disabilities. Jason (photo centre) is autistic and one of his friends uses a wheelchair. The group was so fascinated that they knocked on the storefront’s door—they felt compelled to know more.

They were greeted by Alex Truesdell, founder of the Adaptive Design Association, who invited them up and explained her project to make custom adaptive devices for children. Jason’s first thought was that the furniture must be expensive. It was, after all, made and sold in New York. But, Alex told him, it was actually the opposite—they were giving pieces away for free if families couldn't afford them or if there was no funding. After all, they cost less to design and build because each object was made from cardboard.

As he walked out of the studio, Jason began conceptualizing how he could bring these devices to Canada. Over the next few months he returned to New York to learn from Alex and her team. After being taught how to make a few pieces, Jason started to build his own in Toronto.

Parents took immediate interest. “We had people saying ‘I need something right now,’” Jason explains. So he teamed up with a student at Ryerson University, where he works, and began to experiment with building on campus. They bought a set of tools and used cardboard from recycled student projects to make their first prototypes.

Initially, they designed a corner chair—essentially three pieces of cardboard in the shape of a two-faced, hollow tetrahedron. The chair was made custom for a three-year-old girl who could not sit up independently, and had previously needed an adult to hold her while she played in the sandbox. When the girl attempted to play with other kids while being held, they ignored her.

But once she could play on her own using the bright orange and yellow chair that Jason and his student designed, other kids no longer registered her difference. Within minutes, they began communicating, and brought their games to her. One of Jason’s graduate students documented the group of kids over the course of a year as part of her thesis. She found that during that time, the girl’s preschool classmates continued to modify their play without having to be asked.

For Jason, that is what adaptive design is all about: changing the environment the child is in, as opposed to changing the child. “For me, children aren’t disabled, I’m not disabled,” he says. “Society disables us. The problems that children with special needs have are created by society. Either by how we physically build the space, or how we engage other people.”

To Jason, cardboard is the best material to use because “it’s the greatest visual metaphor,” he says. “It’s a discarded thing. And people with disabilities are largely discarded.”

But it also has practical advantages. Cardboard is available essentially anywhere in the world, he explains, and it doesn’t necessarily require expensive tools to build with. Without scissors or a blade, someone could rip cardboard using their hands. Without access to glue, a would-be builder could use leftover rice water as an adhesive.

“It’s not got any sort of colonialist baggage. It’s equal for us all. But it’s also reminding us that we should be looking at all the objects in our lives to figure out how we can change them to be useful for us.”

Despite its potential simplicity, very few people are doing adaptive design, and designers are geographically spread out. Jason and his students at Ryerson work closely with Alex's design association in New York—the professor recently joined their board of directors—but for the most part groups are few and far between. One of Jason’s goals is to create a global social network so that everyone experimenting with designs can communicate. He recently submitted a research proposal to build an adaptive design studio in Ghana. Earlier, the Ryerson Lab was visited by students from Japan. But, Jason says, innovation moves too quickly for groups to be in occasional contact.

“It’s not enough just to get information out,” he says. “We have to have a two-way continuum. As soon as someone learns something from me, they’re going to say, ‘That’s nice. I have a better idea.’”

Today, Jason directs the EDGE Lab in a newly renovated workspace in the Bell Trinity Square Building behind the Eaton Centre. He still works with a group of students, but their designs have expanded beyond custom furniture. Jason’s space is littered with piles of prototypes, which he shows off enthusiastically: open source computer hardware, a shoe designed to warn people with low vision about tripping hazards, a 3-D printed prosthetic arm.

None of their designs are mass-produced or sold for profit yet. At any time, about a dozen people are working on designing and building, but since they’re students, the groups turn over nearly every 13-week semester. Parents requesting specific devices for their children go through the university. Jason’s biggest challenge is figuring out a way to harness enough builders to meet the volume demands from parents. “I’d love to be running off two or three of these a day,” he says, pointing at a corner chair. “But we’re not there yet.”

Still, Jason hopes that some objects will be commercialized. One student, for example, recently created dollhouse–sized furniture that looks like the real-life pieces Jason and his team build. They are looking to mass-produce the toys at cost and sell them to daycares, with the hope that if children get used to playing with adaptive technologies from a young age, they won’t view them as a sign of difference later.

Jason also plans on outsourcing assembly of the real-life furniture as well. He’d like to be able to sell pieces to families at an affordable rate, not for profit. His ultimate goal is to work solely on design, and have someone else manage the business aspects.

Until then, he will continue to push for a change in attitudes by doing what he does best: making and creating. “Being autistic, I still primarily make sense of the world through physical exploration,” he says. “I communicate by making something for somebody.

“Everyone needs what I’m doing. We’re all going to need some kind of custom adaptation at one point in our lives. The difference is children with special needs can’t function without it.”

Photos by Annie Sakob and Jason Nolan

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'This is a love story'

By Louise Kinross

The Fall: A Father’s Memoir in 424 Steps is a book that will intrigue, delight and surprise you. Written by Brazilian author Diogo Mainardi, it’s made up of 424 short sections of text and images. Each marks a step his son Tito takes, with great difficulty, to reach a hospital in Venice where a medical error during his birth caused his cerebral palsy. As they walk, Diogo links Tito’s disability to great architecture, literature, historical events, movies and other cultural phenomena of the Western world.

BLOOM: The book begins with you blaming historical figures for the medical error that caused Tito’s cerebral palsy. I think many parents get stuck on ‘why’ their child’s disability happened. Why did you decide to link Tito’s disability to architecture, historical events and movies?

Diogo Mainardi: In my case it was ironical. Obviously there is no direct link. In our case I didn’t need to find a reason for Tito’s disability because it was very clear from the beginning that it was a medical error. So in our lives there were the facts—and there was a judicial process for dealing with those—and there were the feelings. And the book tries to deal with them both.

To my incredible surprise, when my son was born my life was completely overtaken by feelings of love. Before he was born, I was anti-sentimental. I didn’t believe literature was about feelings. I believed it was about ideas. In the past, I was unable to write about feelings. After five years of joy and love with Tito, I started to think about this love and everything connected very easily in my mind. I felt it was the right thing, the honest thing, to try to express this passion through the only means I had, which was writing.

I tied the ‘why’ of Tito’s disability to beautiful things, to things that I love because, to my surprise, from Tito’s birth onwards, it was such fun to have him around and so enriching and exciting to follow every step he took. It was a breathtaking and improbable and unexpected adventure. I couldn’t associate him with anything less than the books I loved, the pictures I loved, the buildings I loved.

BLOOM: In the book you talk about how the person you were died when Tito was born. How did his birth change you?

Diogo Mainardi: It humbled me certainly. The first thing that happened to me was that I understood that I wasn’t the main character in my own life. I was a secondary character. I was not Costello, I was Abbott. I was the straight man, there to make things happen. That put everything in our life into a new perspective. I calmed down and enjoyed being the follower of someone as I could not have imagined before.

BLOOM: In the book your acceptance of Tito’s cerebral palsy is absolute and you say it was never a cause for sorrow.

Diogo Mainardi: It’s a strange process. I couldn’t and can’t see Tito in any other way. He is Tito with CP and I can’t imagine him in a different way so it’s an absolute acceptance because he’s my son and I love him just like that. It’s very hard for me to imagine myself loving, and at the same time, wondering if that object of love should be different from what it is. That’s the acceptance. But I can only talk to our tiny experience and I don’t try to imagine other parents’ experiences. The book is not about a father with a CP son, it’s about Diego’s experience with Tito.

BLOOM: You talk about wanting to celebrate a son with a disability. Do you think you would have adapted in the same way if Tito’s disability was more severe?

Diogo Mainardi: Yes, I would have adapted in the same way. If it involved physical suffering it may have been different. Tito doesn’t have any physical suffering. At the beginning, when we learned Tito had CP, during the night my wife and I would worry and talk about being worried. But as soon as Tito woke up, the worry would immediately disappear because the idea is much more terrifying than the fact—than the child itself.

BLOOM: Tito is associated with falling in the book, due to his tight muscles, and there are references to the biblical ‘fall.' You talk about how your wife Anna fell in front of you and Tito when he was a baby and he laughed and that helped you to see that we’re united in our imperfection.

Diogo Mainardi: That was the turning point. I had already accumulated literary experiences that helped me to have lower expectations about man’s accomplishments. I was very much into comical, humorous literature and that helped prepare me to not idealize my own son.

BLOOM: The book conveys the idea that imperfection is part of the beauty of being human.

Diogo Mainardi: Tolerance is the end result of diminishing our arrogance, isn’t it? I don’t think you have to have a disabled child to learn to live with that idea. The most extreme case of human arrogance was Action T4, the Nazi’s project to kill disabled children. The opposite is the acceptance of humans being flawed.

BLOOM: The part of the book where you link the Holocaust back to the German who first asked Hitler to kill his son because he couldn’t accept his disability was very compelling. Why is it so hard for us to accept disability in our culture?

Diogo Mainardi: It has always been this way. Children with disabilities were killed in ancient Rome and they’re still killed in Indian tribes in the Amazon. It’s something that’s seen as unacceptable. I’ve always seen my book as part of a larger world. It’s a love story between me and my son and the difference between other love stories is that the handicapped child was segregated or put in a ghetto. I don’t accept segregation. Tito is part of literature and part of a love story because I’ve never seen him as being excluded. Tito brought me a sense of reality. The things I knew by reading, by seeing, by thinking became so incredibly real.

For example, I was horrified by the Holocaust, obviously. I knew intellectually what it meant. But after I had Tito I had my own Auschwitz survivor at home.

BLOOM: Is Tito accepted in your town?

Diogo Mainardi: In our small village in the book Tito is very much part of the landscape. He is accepted and he’s also protected. In Venice Tito manages to go from our home to school walking by himself with his walker and he gets out of the vaporetto [water taxi] and gets on the school lift and goes by himself. Obviously, he has no friends.

BLOOM: What? He has no friends?

Diogo Mainardi: Everybody likes him and is very tender to him, but he’s 13 now and the 13-year-old boys and girls are not ready to listen to someone who speaks in a slurry way or has difficulty walking from one place to the other and is much slower. This is something that we can’t impose.

BLOOM: But doesn’t the school have a responsibility to educate students?

Diogo Mainardi: Trying to instill tolerance in a forceful way doesn’t work. I tell the teachers to try to see disability as a resource and opportunity. Last year Tito’s class learned about World War II and the part of my book about Nazism and the T4 project was read to all the children. They knew Tito had a father who wrote about how he loved his disabled boy and they learned about something that happened in their grandparents’ lifetime—the greatest monstrosity of all time. I think that’s a more effective way of integrating children with disabilities.

BLOOM: Doesn’t his lack of close friends make you sad?

Diogo Mainardi: Yes, it does. But at the same time everything we try to accomplish with him is to make him strong enough to accept the fact that being different means his relationships with people will be different, and he should be proud of his difference and conscious of it. We never say ‘You are just like the other boys.’ We always say ‘You are a fantastically unique boy and while the uniqueness has many disadvantages that you have to learn to deal with, it also defines many wonderful things and hopefully you will find them as wonderful as we do.’

We try to teach Tito and our other son values and principles and this is part of what a parent can do, which isn’t much, but we can show through example how we feel about him being what he is and that’s what we try to do. We cannot try to overreach. It’s so frustrating to try to solve every little animosity and instill in other people respect of a disabled child. It’s too big a war. We prefer to win small battles and everyday battles and mainly to reinforce him so he can try to do it himself.

BLOOM: You make reference to overcoming the need to overcome Tito’s disability in your book.

Diogo Mainardi: That’s something which we abdicated very soon, because we understood some obstacles can’t be surpassed. You can’t surpass every single obstacle and you have to accept and conform yourself to the differences or difficulties that exist. As you know, there is also a book genre of people with disabilities who climb the Himalayas.

BLOOM: I hate those books.

Diogo Mainardi: I have to accept that we won’t and we can’t and we’re not supposed to. I say leave Mount Everest over there. Tito has great difficulty walking so let’s get him a small ramp and a bridge and that’s all I asked. I think there’s a tendency to patronize and look for stories of victory over failure. We accept our failure and we accept that our son might fail and we will fail. That helps to put things in perspective because my son’s flaws are my own flaws. They are no different than mine. Having Tito made everything real. Things were not ideas anymore, they were a part of my life. There have been thousands of years of ‘falls.’

BLOOM: What do you hope readers take from the book?

Diogo Mainardi: I hope they have fun. I hope they can see how much fun our experience with Tito was because it was, for us, really a breathtaking adventure and the love was such a great, unexpected feeling at that moment in my life.

BLOOM: I loved the book because it linked disability to all of the great stories in history.

Diogo Mainardi: This is a love story and a family story. Years ago children with disabilities were not part of families’ stories because they were segregated. They were locked in a dark room. Not now. Shakespeare wrote about families and conflicts in families. This is a family. I’m not Shakespeare. People can connect with families and I expect them to accept my son as part of the family.

No one outside our world will read something that’s simply about cerebral palsy. We need to enlarge the subject. When we talk about larger phenomena and larger ideas and when we mix disability with tolerance, with having a less limited view of mankind, it enriches our own experiences. That’s what I tried to do in the book. It’s our story, but it’s a common story that has a past in the great stories of the world.

BLOOM: Do you think the book can reach people who don’t have experience with disability?

Diogo Mainardi: Yes. I try to break the barrier and go to the other side because it’s the side in which we’ve lived the whole of our lives before having a handicapped child. We need to talk to both sides. As Tito’s father I could take him and show him to the rest of the world and I could show the rest of the world to him.

BLOOM: Has Tito read the book?

Diogo Mainardi: Yes. I asked his permission to write the book beforehand and after a certain reluctance he accepted it and participated in it. He helped me find the photos and took some of the photos we used. He was very proud of the book when it came out in Brazil and was a great success. He went to the Edinburgh Book Festival recently and signed the book.

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