After a near drowning, a teen accepts she's 'a different person'

By Louise Kinross

Recently, Holland Bloorview family therapist Caron Gan sent me this message:

‘Yesterday I went to pick up a prescription at my local drug store and was served by a former [patient]. She had sustained a significant brain injury from a near drowning, and was not expected to live. In spite of this, she made a great recovery and was determined to be a pharmacist...Her mom has been instrumental in supporting her daughter. Seeing her behind the pharmacy counter brought such joy to my heart. I wonder if this could be a story to inspire others who are in the earlier stages of their rehab journey?’

In 2011, Chantel Asamoah almost drowned when she was pulled into an undertow at Woodbine Beach in Toronto. Chantel, then 15, didn’t know how to swim and was playing in the water with friends. One friend, a lifeguard, tried to pull her out, but Chantel was in such a state of panic that she pushed her down. Her friends ran to call 911. An emergency crew arrived, but couldn’t locate Chantel, so they formed a search line with others on the beach and walked into the water. “When they did find me I’d been under for about 10 minutes and had a very weak pulse,” Chantel says.

We spoke about Chantel’s brain injury and how she’s learned to cope with it in her journey to become a pharmacist. She’s almost finished her third year at the Leslie Dan Faculty of Pharmacy at the University of Toronto.

BLOOM: What was your prognosis when you got to the hospital?

Chantel Asamoah: The doctors told my mom I wouldn’t be able to walk or talk, and would essentially be a vegetable. They weren’t sure if I was going to make it, and they asked if she wanted to donate my organs.

I was at SickKids for two weeks and the first time I woke up my mom said I was confused about what happened and why I was there. I still have no memory of the accident. When I woke up I thought I was younger than I was. After SickKids I was at Holland Bloorview for two months.

BLOOM: What was the biggest challenge?

Chantel Asamoah: My memory. I couldn’t remember what I had eaten the night before, and I couldn’t remember how some family and friends were related to me. There was also a big impact on my processing speed. It took me a very, very long time to take in information. My mother noticed that generally my personality was different—I would become agitated more quickly and my responses were more emotional. Speaking and eating were okay, but I had some problems with word finding.

When I first came to Bloorview I was in a wheelchair. Then I began to walk, but I was a lot clumsier and had problems with balance and coordination. That’s what I worked on in physio.

Before I was injured I played sports at a high level: basketball, volleyball and flag football. That was the end of me being involved in sports.

BLOOM: How did you cope with all these changes?

Chantel Asamoah: At first I was kind of angry about it. I didn’t want to accept it. I just wanted to pretend that rehab was something I had to do, but when I got out of here, my life would be the same. Now it’s been almost eight years, and I’ve definitely accepted my brain injury and I’m working on my coping skills.

BLOOM: You mentioned your mom felt your personality had changed. How did you feel compared to before the injury?

Chantel Asamoah: I felt like a totally different person. Things that came naturally to me before weren’t the same anymore. It was harder to do simple things, like playing sports. I was pretty emotional about it because sports had been a huge part of my life.

In terms of studying, I was a very smart student. I wouldn’t say my brain injury increased or decreased my intelligence, but it made it harder for me to study. Something that before took me an hour would now take three hours. I had to take a lot of breaks and I was easily fatigued and had to take naps. And it was hard to concentrate in class.

Part of accepting that you have a disability is accepting that others may not completely understand. For example, when I first went back to high school, most people knew I was getting accommodations. I was still performing well with the same marks, but with more effort. My other peers would tell me ‘Why do you get extra time for an exam when you get higher marks than me?’

BLOOM: I’ve heard other youth with brain injuries talk about how they lost friends after the injury.

Chantel Asamoah: The whole situation was hard on my friends, especially the ones at the beach and the ones who came to the hospital to see me every day. They thought everything was the same. It was hard for them to cope with the fact that I was a different person.

I would say I lost a lot of friends. But I was also able to have new friendships with people who didn’t know me before the incident. So it was a brand new slate.

It was especially hard for my mom to understand that the way I process things or react to things is slightly different. Caron Gan made a big impact on my mom’s life. Her sessions with my mom helped her to understand how to better cope and deal with me as I was transitioning from hospital.

BLOOM: Can you talk about that transition?

Chantel Asamoah: When you’re in the hospital, everything is idealized, compared to real life.

BLOOM: Do you mean protected?

Chantal Asamoah: Yes. It’s not till you leave the hospital that you’re dealing with everyday stressors. When I left, Caron visited regularly with my mom at home, which was good, because my mom doesn’t drive and works.

[Social worker] Val Lusted met regularly with me at my high school, to help me cope. I had a lot of anxiety surrounding the fact that I was diagnosed with a brain injury, and wondering how it would impact my relationships with my friends or work or the sports I used to be involved in. One of the things Val did was talk about relaxation techniques. I still use them when I’m extremely stressed out, especially at school.

Before my accident, I was a perfectionist. That is very hard to do when you have a brain injury. When I first got out of the hospital, I was fighting the diagnosis and Val helped me come to terms with that, and with understanding that not everything can be perfect. She taught me ways to cope with things when they aren’t perfect, ways that are more desirable than getting angry and lashing out.

It’s really important to have these supports after you leave, because when you’re in hospital, you don’t get a taste of how your brain injury will impact everyday life. I’ve heard that a lot of this work is now done while patients are in hospital. For me, it was meeting with Val after I left that really helped me in finally accepting that this is a part of me. I feel it was a big factor in my school outcome.

I also worked with Sara Diederichs, a community resource teacher from the Bloorview School. She helped with my transition from high school to post-secondary school. At our high school there was a guidance counsellor, but it wasn’t the same. Sara understood the intricacies of dealing with someone with brain injury.

BLOOM: Were you able to finish high school with your peers?

Chantel Asamoah: Yes. My accident happened right after I wrote my Grade 10 exams and I went back to school the second week of classes in September.

BLOOM: How did you decide on going into pharmacy?

Chantel Asamoah: Pharmacy was a goal for me before my brain injury and I decided I wanted it to stay a goal. Because I had to give up on some things, like sports, I wanted to be able to maintain some part of what I was before.

I’ve always been interested in the sciences, biology and chemistry. I wanted to help people, but I didn’t necessarily think other healthcare positions jived with my personality. I also noticed that I liked educating people.

I was a tutor in high school and did a lot of mentorship programs with other students. Pharmacy is a good blend between having knowledge of the drugs and the biology and chemistry, and education. You’re taking that knowledge and applying it to patients—whether you’re solving their drug therapy needs or educating them about their medication or condition.

BLOOM: What has pharmacy school been like?

Chantel Asamoah: It’s been difficult for me, but rewarding. It’s been difficult because of the sheer amount of work and information I have to go through, and the number of courses. I’m finding it’s important to advocate for myself. I’m glad I got a lot of practice doing that in my last years of high school and first years of university.

BLOOM: What kind of work do you want to do when you graduate?

Chantel Asamoah: I really enjoy community pharmacy. I’ve been working in a pharmacy since my first year and what appeals to me is getting to build relationships with patients. When you work at a community pharmacy you see patients grow up. They come back and thank you for the recommendation you gave them last week. Even now, I have patients who come and remember my name or call and ask to speak with me.

BLOOM: It seems that you would bring special qualities to this work because of your health experiences.

Chantel Asamoah: In school, we don’t talk much about invisible disabilities or brain injuries. I think I have a certain understanding with patients who have an invisible condition. I know that even though things look normal on the outside, it doesn’t necessarily mean they are. It gives me extra perspective and an understanding that things may not be as they appear. It allows me to be more sensitive.

Some of my co-workers tell me ‘Chantel, you’re too patient with some people.’ I think I understand the importance of patience. I needed people to be patient with me. Patients will come back looking for me because they know I’ll go through all of their medications and answer all their questions.

BLOOM: What do you hope to do when you graduate?

Chantel Asamoah: My hope is I’ll get a full-time job in a community pharmacy. I also want to be involved in advocacy for invisible disabilities and disabilities in general. I’ve reached out to Dolly Menna-Dack with the youth advisory.

BLOOM: When you were in hospital here did you meet other youth with brain injuries, or hear from people who were further along with their journey?

Chantel Asamoah: I didn’t hear stories about how other people were affected, or how people were dealing with it successfully. It would have been nice to hear.

BLOOM: I remember that a few years ago we were able to connect a current inpatient with a former one and she said she found it so helpful to speak to someone who understood.

Chantel Asamoah: I think it would be very encouraging.

BLOOM: I understand you volunteered in our pharmacy before you went to pharmacy school?

Chantel Asamoah: Yes, it was my first exposure to pharmacy. I learned a lot about the accuracy that is needed, and it was a safe environment for me to learn how my disability might impact my work in the field. Everyone knew I was a past patient, and they understood more about invisible disability than the general public. They really focused on what goals I wanted to reach, and only expected me to do things that they knew I could do.

BLOOM: What advice would you give other youth earlier on in their rehab for brain injury?

Chantel Asamoah: What's important to be able to move on is acceptance. You have to accept that although the brain injury doesn't define who you are, it is a part of your life. It doesn't mean everything is now negative. Once you accept it's part of you, it allows your mind to think of ways to cope with things.

Advocacy is very important. Only you, yourself, know exactly what you need in terms of accommodations at school, or how you want your family members to treat you. That reflection on what it is that you need is important.

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Six years later, a mom embraces life with her son's brain injury

By D. Brown

Wow! How time flies! Another “back to school” season is upon us. Six years ago, our healthy two-year-old son was hospitalized after suffering seizures and then severe brain inflammation. Since that fateful day, we have watched our son suffer and heal, struggle and overcome, falter and thrive.

Today, our son is firmly settled at his school where there aren't any grades. I know that he “would” be in Grade 3, if he hadn’t had his life-threatening illness. Instead, it's our seventh year raising a toddler. And when I see the young boys playing organized baseball at the local park, my heart does ache.

Despite the sadness around what would have been, what's new about this anniversary is that I no longer feel victimized by what happened. This year, there’s an acceptance around our family's reality and the sense of responsibility that comes with it.

Despite the fact that we have willingly sacrificed ourselves every minute of every day for our son's wellbeing, and are exhausted and worn, I now embrace this reality rather than feel sorry for ourselves.

I don't cower with embarrassment or feel the need to explain our situation when our son is loud and excited in public. I smile at him and comment about what he is experiencing, excited right along with him.

I no longer feel burdened by changing the sheets every few days with overnight diaper leaks. Instead, I'm thrilled that our son is daytime toilet-trained since February.

I don't feel slighted because he’s not neurotypical like other kids. I am enthusiastic about his unique unfolding of growth and development that continues to amaze us.

How did I get here? I think it's a combination of a few things.

Our son has continued to show steady gains in his recovery and development and time has given us practice at our new reality.

I don't really think about what “would have been,” because it's as irrelevant as what life would be like if I were born male, or in 1823, or if our son were a daughter. It didn't happen that way, so who cares?

After our son’s brain injury he was diagnosed with autism. We’ve embraced the Developmental, Individual differences, Relationship-based (DIR) model, or DIR/Floortime as the approach within which to support our son's growth. This is a developmental, rather than a behavioural, approach. DIR/Floortime is a lifelong model that encourages independence, relating, communicating, thinking, and the pursuit of a meaningful personal journey.

This too has given us a framework for acceptance because we can now be patient with our son's own developmental trajectory.

Sure, I still feel sad that our son will never have the kind of school memories that we did, that he hasn't started academics yet, doesn't know how to colour or read, can't write his name or dress himself, nor understand how to count objects.

But for the first time, I'm also okay with it because it will probably all come in time. If it doesn't, he's already perfect as he is, if I just open my eyes and see who is before me, instead of comparing him to a child I might have imagined.

After six years, I've come to own our reality. Our family tragedy called upon us to be there for our son in ways we might not have otherwise been able to.

For example, without our son’s illness, I would have been back at work much earlier, rather than staying home to care for him full-time. Being at home during the day since he started school gave me the time to fulfill the hobbies that kept me sane, and gave me the gift of getting to know our son to the point of experiencing the world from his perspective, to the best of my ability. With that empathy, I have been able to help him flourish.

He feels safe in this world with us. He is loved and treasured. His wellbeing is always taken into account first and foremost. Every day, I wake up happy to have our son with us and to be his mother, because I know that we can take nothing for granted.

I do feel angry, sad, scared, sorry and tired from time to time, but these moments are now fleeting, because I have the confidence that I understand our son, and I know how to support and guide him through his development.

This is different from how I felt in the early days, when I was scared and desperate to find the right therapy for him, or felt pressured to teach him skills that professionals thought he should know. I became disillusioned with the pressure to make him “school ready,” when I was only concerned with his wellbeing and development.

Mostly, I feel joyful, grateful, proud, hopeful, and eager. I've earned this because of the joy I sense in him and see on our son's face every day.

Our family, through my dedication, have collectively given our son a life where he can be himself and is happy. What more could we ever want?

You can follow this family on their blog.

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a love letter to the one i work to forget

Last week we ran a poem called thoughts that live in the hole of my brain by 17-year-old Lexin Zhang. “When I was young, I thought about my disability as being a literal hole in my brain,” says Lexin (above), who has cerebral palsy. Following is a sequel poem Lexin wrote. At the end, she explains more about why she wrote this piece.

a love letter to the one i work to forget (cp)
By Lexin Zhang

The moment I took my first gasping breath
You imprinted onto my mind
And you haven’t left me since
Every one of my actions are wrapped up in your fingerprints

In the world we were born into
People were trying to save me from you immediately
Therapy attempted to have me forget the feeling of you in my bones
But we were born to be together
For the rest of our lives
And no one else’s opinion really matters
(not even mine)

In elementary school, I was stopped in the hall by a teacher I’d known for a while
He said ‘hey, you look like you’re walking better, keep it up’
I’d hear it from doctors—family members too
And I couldn’t help but smile
Every single praise I got in spite of you
Buried you deeper into a hole
I was trying to muffle,
To snuff you dormant
So you’d be easier to cuddle
I tried to love you, but I couldn’t—
At least, not properly

Despite the needles
My mouth still struggles around your name
Your presence soaks my tongue, tinted in your tone
I never really had agency over my words anyways
My mouth still morphs, shapeless, to fit with lips it never got to kiss

I try not to look at pictures
Because we always seem so stiff, like we painfully don’t fit

They say that love isn’t gazing at each other
But rather looking outward, together
In the same direction
We never did that—
Too busy analyzing body complications
Trying not to fall too far away from the ground
Stepping over and on each other’s feet

We’re so close and you’re so unique
That sometimes, when I introduce myself
All people see is you, and not me
Sometimes, I too lose myself in the vast landscape of you

But we were born to be together
For the rest of our lives
And you’re determined to stay by my side
Convinced that we don’t need to hurt all the time

I think I am writing this to let you know
That I am trying to love you
Love the jagged lines and silhouettes that stretch out from our limbs
Our small shaky hands spread out, straining impossibly wide
Eager to prove just how much they can catch
The twist and curl of toes and wrists and fingers
Latching at nothing in particular
Love the turns and churns of neck and face to form blobby cracked words
Love how our sound has to rumble through the throat to burst into clumsy existence

I’m trying to love what we sculpt
Every bone protrusion is a new mountain in the landscape
Each elongation is a paint stroke in the sky
Tense hard muscles bloom out rolling hills
I just have to trust that it’s quite the view if you find the right window sill

I caused us pain birthed from both dissection and neglect
I need to listen more often
You’ve hurt me too but
In truth, you make me a better person
More understanding, hardworking,
More clear of my values
Isn’t that what a good relationship is supposed to do?

I worked to forget you, drown you, even
I’m working to love you, and not feel so threatened

Lexin

___________________


BLOOM: Why did you write this poem and how does it relate to the first?

Lexin Zhang: This poem was me trying to reconcile with my disability and all the negative thoughts I had towards it. I wrote the first poem for school, it was like a chance to purge my recurring thoughts. This poem came when my social worker suggested writing an alternate narrative. The poem is a step forward. It’s me growing and evolving and recognizing that the thoughts I had before weren’t necessarily healthy thoughts.

Throughout the poem, however, it’s clear that it isn’t solely positive. There’s a push and pull between dislike and love. Even as I was writing it, it was hard trying to love my disability. I’m admitting that I’m not treating it properly and that, in turn, means I’m not treating myself properly.

Personifying a part of yourself that you’re conflicted with is common, at least from the poetry I’ve experienced. I made it sound like I was speaking about a soul mate, someone I was trying to love, and in a way I was. Honestly, I liked the analogy; it worked in so many ways. Personally, it made it easier for me to engage with my disability.

BLOOM: The poem really speaks to anyone who struggles with parts of themselves.

Lexin Zhang: Ultimately, it’s about my relationship to my physical appearance. Regardless of disability, everybody has something about themselves that they don’t fully embrace at first. It’s kind of like that battle to try to love every part of yourself. Self love, I feel, is something we learn to do. It’s never perfect. There are days when it’s harder than others. Everyone tries to be better—this is my way of doing it.

BLOOM: You just finished the Youth@Work program at Holland Bloorview. This is a summer program where you do work placements in the hospital, as well as attend workshops and meet with a job coach. You said Youth@Work influenced how you feel about your disability.

Lexin Zhang: Yes. After doing Youth@Work I feel I’ve reconciled even more with my disability and, I don’t know another way to phrase it, but I’m not as ashamed of it in a way. Youth@Work made me realize I could present myself with a disability and it wasn’t anything I had to hold back. As I say in this poem, I wasn’t trying to muffle it. I wasn’t trying to make it quiet and not noticeable.

BLOOM: What was it about the program that led you to feel differently?

Lexin Zhang: The environment is safe and it feels like I can do things and be confident with who I am—every part, not just selected sections. I can push forward who I am as a whole, instead of just the parts I’m okay with, [while] blocking the parts I feel are negative.

The staff I worked with gave me a sense of ease and safety. I can’t even remember how I was before this. I don’t know if it’s just because when I’m here I feel more confident about myself, but I hope that transfers to the rest of my life.

BLOOM: So you think there will be a long-term impact?

Lexin Zhang: I think this will change how I view certain things forever. It’s a weird feeling to know you’re in a moment of vital change, in regards to who you are as a person.

When you’re surrounded with able-bodied people who are working so hard to achieve in school, you forget that it’s okay to be disabled or different. I’m trying so hard to line up with them, that I kind of forget that it’s okay to not be with them at the same level.

Being surrounded with people with different abilities at Youth@Work, you remember that you don’t need to be doing the exact same things as everyone else. Youth@Work reminded me that it’s okay to be disabled in every sense of the term, and it was an odd epiphany, a pivotal moment in my mind.

I know this will change the way I act or perceive myself in relation to society or other people. I won’t be able to fully grasp how the experience has affected me until I’ve seen all of it come to fruition later on in life.

Even though this poem wasn’t written too long ago, I feel like the way I feel now is different. I’m really thankful for that.

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'A big part of my job is telling families the diagnosis'

By Louise Kinross

Dr. Melanie Penner is a developmental pediatrician at Holland Bloorview who focuses on autism. She’s the person who gives parents a diagnosis of autism in their child. Frustrated at the years’ long wait for behaviour therapy in Ontario, she had a study published in JAMA Pediatrics last month that puts the cost of that delay at $267,000 per child over a lifetime. Melanie is happiest when knitting or managing her fantasy baseball team.

BLOOM: Why did you get into developmental pediatrics?

Melanie Penner: Growing up my mom worked as a special education teacher. I was always exposed to kids with physical disabilities, kids with intellectual disabilities, kids with autism, and I loved it. I liked science in school and went to medical school. I remember the day that a developmental pediatrician came and spoke to our class and ever since that day I never wanted to do anything else. I worked as an inclusion counsellor at Parks and Rec camps, so it’s been an ongoing theme in my life. I love to see kids participate and I love to see kids have little successes. I want to be a person who can help them get there.

BLOOM: You also did a degree in health services research.

Melanie Penner: During my pediatric residency I found myself really interested in how care was designed and delivered. I learned that I’m a person who’s quite pragmatic and interested in efficiency. When I was in the second year of my developmental pediatrics fellowship at Holland Bloorview I decided I would do a master's degree in health services research. My daughter was six weeks old at the time, and my husband tried, in vain, to give my baby her first bottle in the Starbucks in the building while I interviewed.

BLOOM: How did you manage to juggle your fellowship, your master's and a new baby?

Melanie Penner: I’m still not sure. I had a six-month mat leave and that’s when I did the interview. I cried the whole way home. But from where I am now, I shouldn’t have been so worried. It was a lot of work, but my daughter was in the daycare here and it was great. It made the transition back to work so much easier, on emotional and logistic levels.

BLOOM: How would you describe your job now?

Melanie Penner: I have two clinical hats. Most of my clinical practice is doing developmental assessments for autism. So I’m giving the parents the first diagnosis. I also work in the psychopharmacology clinic with kids with neurodevelopmental disorders and complex behaviour problems. I’m a scientist in the autism research centre and I do services research for autism. Right now I have a project looking at whether community pediatricians can diagnose autism accurately, instead of families waiting months upon months to come here.

BLOOM: What’s challenging?

Melanie Penner: A big part of my job is telling families the diagnosis of autism and helping them through the initial stages. That takes an emotional toll. I’ve come to learn recently that I can carry that with me in more ways than I think. If I’m feeling poured out emotionally, I don’t necessarily have the reserves when I get home to deal with the negotiation of getting my daughter into bath and bed. Sometimes by the end of the day, I definitely need a bit of quiet time to myself.

BLOOM: Do you do anything proactive to help yourself cope?

Melanie Penner: I’ve taken up knitting. Knitting is my happy place. It totally diffuses the stress out of my fingers. I even knit during meetings and rounds here.

BLOOM: Isn’t it hard to follow a meeting and a knitting pattern?

Melanie Penner: If the knitting is straightforward, it helps me focus. It’s kind of a legitimate fidget to have. There’s one person, who will remain nameless, who likes to sit beside me because she finds sitting close to my rhythmic knitting movements soothing.

BLOOM: There’s the clacking sound of the needles.

Melanie Penner: Yes. It’s a sensory experience. What I like about knitting as well is that it helps me to be gracious with myself. If I make a mistake, I have the option, which you don’t have in life, of going back and pulling everything out and fixing it. But I’ve gotten better at just leaving my mistakes in. I call it artisanal charm, so people know it’s hand-made. It’s a good way to think about forgiving myself and going easier on myself. I’m a recovering perfectionist, so it’s a good exercise for me.

BLOOM: I’ve read articles in the New York Times about how knitting is similar to mindfulness meditation.

Melanie Penner: I’ve read those too. Because of the therapeutic benefits I’ve had I’m going to start a knitting group for teenagers with autism. Knitting aligns so nicely with classic autistic strengths: if you look at a pattern it’s a very visual exercise to go through and knitting involves sticking to a repetitive task that others might find too monotonous. There’s the sensory experience of it. And a knitting circle has a social context but you can do it without making eye contact.

BLOOM: When will that start?

Melanie Penner: I’m putting the materials together and I hope by the fall of 2017. We’ve applied for Centres for Leadership funding. I have knitting teachers on board, a behaviour therapist and occupational therapist to modify the program, and an adult with autism who’s been knitting for 20 years just joined the team.

BLOOM: What’s challenging with research?

Melanie Penner: Rejection is built into the job. Most of the time you won’t be successful with grant applications. That’s been another emotional learning point for me—to learn to bounce back from those things. I’m a huge baseball fan and I’ve had to take on the mindset of a baseball player: that if you’re succeeding 30 per cent of the time, you’re an all-star. If you strike out you can snap a bat over your leg but you still have to go up to the plate next time. Life is the metaphor through which I understand baseball. That’s how important baseball is to me.

BLOOM: Do you play?

Melanie Penner: No, I’m terrible at ball sports. But I manage a fantasy baseball team. You get together with a bunch of people and draft players.

BLOOM: What do you love about your work?

Melanie Penner: I get to see families six months after the autism diagnosis and what’s amazing is that over that time, you see that some families are really thriving and their kids are thriving. You often leave them in this difficult state, and then six months later you get to see how their thinking around the meaning of autism has changed. It’s changed not who their child is, but how they view certain things about their child. They have a better understanding of their child and we get to celebrate the gains their child has made.

With research, rewards are a bit more clearly defined: when you get a paper accepted or get a grant, that feeling is incredible. I try to ride it as long as I can. When I found out I got a small CIHR grant for my study looking at the accuracy of pediatrician diagnosis of autism, I was crying so much I couldn’t get the words out to my husband.

BLOOM: Have your thoughts about autism changed?

Melanie Penner: Most of what I know about autism comes from talking to kids and teenagers with autism and their parents. I don’t get much exposure to adults, but I do read a lot of literature by adults. My thinking has changed. Being a physician, and coming from a place where we think in terms of biomedical disease-based models, even though we’re trying to break out of that, this [rehab] world is so different. I see the ways that acceptance plays into things and I’ve tried to learn a lot from neurodiversity advocates. One thing I keep in mind is that the construct of autism I have now shouldn’t be the same way I’ll think of it in 10 or 20 years.

BLOOM: What drew you to this area?

Melanie Penner: Autism captured my imagination. I think it’s the way our population thinks so differently. The way my patients see the world and express themselves is always a pleasant surprise and it challenges me and my assumptions.

BLOOM: How do you balance acceptance of disability with our desire to fix things?

Melanie Penner: Even from the time of diagnosis, I’m trying to bring in these ideas of acceptance now. A lot of our therapies have focused on trying to give children the skills to function in the neurotypical world. The bigger work we have to do is making the world a more friendly and inclusive place where people with autism and other differences can shine and contribute in the way they want to. Often parents will ask about what they can do to make their child normal. But if the child is doing something like flapping—that’s not hurting anybody—I tell them that’s not a ‘him’ or ‘her’ problem, that’s an ‘us’ problem. I have no interest in trying to take those things away.

BLOOM: It must be hard to be the point person giving a diagnosis when the average wait for publicly-covered therapy is two and a half years.

Melanie Penner: It’s always a difficult discussion that contributes to some of the emotional baggage I end up with. It’s a two-tiered system where families with means can pay privately to access therapy right away. We do have some access to charity funding that can be put towards private services sooner, and we’ve figured out little workarounds that we try to employ with the help of our social workers. I also have parents who seek out a lot of information on their own and implement different parts of therapy. Some parents have even trained to become behaviour therapists.

BLOOM: What are your hopes for the future?

Melanie Penner: I hope my work can help to create a more equitable future for people with autism and their families.

Melanie was the focus of this Ontario Medical Association video Putting Patients First. The photo above is a still image from the video.

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Some thoughts on acceptance

By Louise Kinross

One of our staff is doing a workshop for parents on acceptance. She asked me for resources and I recommended these BLOOM pieces below. But first, a story from Adrian Anantawan, an internationally recognized violinist and former client at Holland Bloorview. 

In university, Adrian chose to stop wearing the prosthesis he'd worn all his life (he was born missing one hand). He said the prosthesis was hot and heavy and didn't make it easier for him to do things. "The function was more of an image issue than anything else, and it lost its function as I became more accepting of my own body, and how I looked to everyone else," he told me.

1. 'Normal:' It's not all it's cracked up to be An interview with Dr. BJ Miller, a palliative care doctor who became a triple amputee after an accident when he was a student at Princeton. 

"I wouldn't try to convince parents not to worry, or not to wish that their child had an easier go of things, but I would say over time spend your energy on finding things to celebrate in your child's differences. Turn your attention towards the differences, instead of away from them, and who knows what will come, either lessons or some weird new talent. Divorce yourself from the typical measures of success in life. It's a harder road, but a way more fulfilling one.

"I have a window into the inverse of this in my work. I see people all the time who do have a ridiculous wealth of conventional success and there's a lot of misery in there because they've never embraced their own internal metric, they've never done their own homework. Part of getting there involves letting go of the idea that 'if I just had this or that' or 'if I just looked like this or that' things would be perfect. In fact, it's my experience that it's the opposite."

2. Jean Vanier on accepting who we are An interview with philosopher and humanist Jean Vanier, founder of L'Arche.

"The danger in our society is to pretend that we're strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: 'I need your help.' That brings us together, because I'm not able to do everything myself. I'm calling out: 'Can you help me?' Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted."

3. Worried your not a good-enough parent? Barb can help Interview with Barbara Fishbein, a social worker at Holland Bloorview for over 30 years.

"We’re having a lot of conversations with parents about the importance of play and leading a normal life. I think parents need to be cognizant of over-programming, over-medicalizing and over-therapizing. They need to look at the amount of time their child is spending in therapy. If your child was a typical child, would you want them spending that much time in a rehab centre or hospital? 

"Can you let go of some of that pressure on your child and yourself and be able to be with your child and appreciate them for who they are? 

"I also strongly belief in the emotional life of a child and when we focus so much on physical rehab, which of course is important, we may forget to pay attention to the child’s emotional wellbeing—including how to nurture a feeling of acceptance and belonging."

4. One humanity, one voice A story about a talk by Far From The Tree author Andrew Solomon at the Toronto Reference Library. 

Solomon [refers] to the way minority groups have historically split off from each other in their advocacy efforts. People with physical disabilities don't want to be identified with those with intellectual disabilities, or people with mental illness object to being compared to those with autism, or someone who's transgender doesn't see any common experience with a person with dwarfism. As he notes in his book, the parents of child prodigies didn't want to be included in a book with families of severely-disabled children, people with autism insisted that those with Down syndrome had lower intelligence than them, and deaf people didn't want to be associated with people with schizophrenia.

I think Solomon has nailed the problem of discrimination within the disability community—and how it fractures all of our attempts to achieve equality as humans. 

"Being blind and being gay are different, but having a selfhood that others perceive as undesirable is identical," Solomon writes in Far From The Tree.

5. There's a lot being written about self-compassion now, which is linked to acceptance. There's a Centre for Compassion and Altruism Research at Stanford Medical School. This past weekend CBC's Tapestry program interviewed Thupton Jinpa, a Tibetan Buddhist monk who developed a course in Compassion Cultivation Training at Stanford. He's also published a book called A Fearless Heart: How The Courage To Be Compassionate Can Transform Our Lives.

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When medicine doesn't go according to plan

'In the first couple of months of being at Bloorview I really had hope…that I would get my life back…As I was there longer I started to realize that the changes in my body aren’t easily fixable.' Maddy Workman, above right, studying chemistry in the Bloorview School.

By Louise Kinross

Maddy Workman, 16, has spent five months at Holland Bloorview after a hip surgery that wasn't successful. She’s since had a second surgery and will have a third in the New Year. In Life is a Climb she writes about having to come to terms with pain and muscle spasms that make it hard for her to do the things she used to do.

“Before the hip surgery I was a regular teenager who needed a wheelchair to get around, but I didn’t need a bunch of help,” Maddy says. “I had really good control in my right arm. I could draw, I could paint. And I loved to bake.” Her favourite concoction? Macaroons. 

Maddy has a penchant for purple and pink. Her wheelchair is purple, her iPad cover pink, and her clothes a mix.

Maddy now copes with uncontrolled movements in her right arm that make it difficult to do everyday things. “The more I try to do something with my arm, the more my body resists it,” she says. “The doctor said the pain in my hip is causing spasms in my arm. If I want to do something as simple as brush my teeth, my arm doesn’t want to do it.”

Accepting these changes, and trying out adaptive equipment for cooking and other activities, has been tough, Maddy says.

“For me, I need to talk it out verbally when I’m frustrated,” Maddy says. At Holland Bloorview that’s often been with social worker Val Lusted. “She’s really good. She says I go through stages of frustration and sadness, but then I come out on the other side.”

Maddy advises other kids in rehab to accept their emotions. “When you’re sad or frustrated or angry you’re allowed to be like that. But don’t stay in that place forever. When I found out the news that I needed a third surgery on my hip, I asked ‘why did this happen to me?’ I was not happy—for Friday, Saturday, Sunday, and a little bit of Monday. But then I got better.”

This weekend Maddy returns home to Ariss, Ont. where she's in Grade 11. In January she'll be back for another surgery. “I can’t wait to get back to my school and family,” she says. Read her poem below.

Life is a Climb
By Maddy Workman

In the first couple of months of being at Bloorview I had hope for the first time in a while,

Hope that I would get my life back.

I had hope that I would be a regular teenage girl again who just needed a wheelchair to get around.

As I was there longer and longer I started to realize that the changes in my body aren't easily fixable and that I have to figure out how to deal with the changes.

Change is very hard for me, and I never really had a huge change in my life.

Change is hard physically,

Change is hard emotionally,

Change is just hard to deal with.

But, if I want to be happy I have to deal with the changes and get though them, because life's a climb.

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Think other special-needs parents have it 'together?' Think again

By Louise Kinross

When Autism Comes To Roost: A Family’s Journey From Denial to Acceptance is a new parent memoir out next week.

Canadian psychologist Alicia Hendley writes candidly about her son Max’s diagnosis of autism and how it caused “the ground [to shift] under me. Suddenly unable to juggle the roles of therapist, wife and mother of four with anything resembling grace, I stumbled head-first into a major depressive episode, which was quickly followed by a diagnosis of bipolar disorder.”

BLOOM interviewed Alicia to find out how being a psychologist influenced her response to her son's diagnosis. This is the perfect interview for any parent who assumes that every other parent of a kid with a disability has it "all together."

BLOOM: The title of your book includes 'from denial to acceptance.' How did you respond when you learned Max had autism?

Alicia Hendley: My initial response was complete denial. The daycare filled out questionnaires on development at 16 and 24 months and both were very clear that Max was behind in every area. As a psychologist I told my husband that the surveys weren’t valid because they were supposed to be parent-completed questionnaires and not based on teacher feedback. ‘They don’t know what they’re talking about,’ I said. ‘He’s just this interesting kid and he’s very sensitive.’

I did one of those questionnaires over in red pen and changed all the answers. It wasn’t until my youngest son started catching up with Max that it became more clear, around Max’s third birthday.

What jumpstarted the need for an evaluation was his absolute need for routine and ritual. We had to do the same route home from daycare and if I changed the route or if I said ‘that’s the fire house’ instead of ‘that’s the fire station’ he’d have a meltdown and take off his shoes and throw them at my head.

When I heard the word ‘autism’ from a child psychologist it was absolutely devastating. It was like I’d known but I didn’t know. And my view of that word is different now, but at the time it was devastating.

BLOOM: In a short span of time Max receives a diagnosis of autism and you receive a diagnosis of severe clinical depression.

Alicia Hendley: During that period I was working full time and I also had two older children and a baby. I counselled students at the University of Waterloo, so I was dealing with people who had their own distress and needed my help and that took a lot of emotional energy.

Max wasn’t in the child services system yet and there were wait lists. Nothing was happening and I didn’t know who to call. I’d leave each morning and he’d be screaming and refusing to put any clothes on and hitting himself. I’d cry driving all the way from Guelph to Waterloo. So my mood was steadily going down.

At first I tried to ignore that I was getting depressed. I wasn’t sleeping and I was losing weight. At lunch time I’d be crying in my office. But it wasn’t until one day when I opened a professional e-mail and realized I couldn’t read it—it was like a different language—that I called the doctor. I couldn’t even speak. 

They had me come in that day and placed me on leave. The book is about my journey trying to get help for Max at the same time I was trying to get help for myself and trying to be a mom and a wife. Writing was an outlet for me and I initially began journaling.

BLOOM: What was it about Max's autism that contributed to your depression?

Alicia Hendley: I was in denial about Max but I never felt shame about him. I got depressed because I had no idea what to do or how to help him. I don’t worry about whether he’ll go to university or fall in love or not. I worry about any type of future where people could potentially hurt him and that family and close friends wouldn’t be there to buffer that. Will there be people in his life when he’s older that accept him for the person that he becomes? That keeps me up at night thinking about when I’m gone or my husband is gone.

BLOOM: How did being a psychologist influence your response to Max’s diagnosis?

Alicia Hendley: While I didn’t feel ashamed about Max or his autism, I did feel ashamed about my depression. I was a psychologist: ‘I know what to do. How come I can’t fix myself?’ I hid my psychological problems from anyone outside my immediate family. My expectations for myself were so high that they slowed my path to recovery. Even though I would never feel that a client of mine was weak in any way, I thought I was weak. I was taking medication and it was hard and I was doing therapy and it was hard. There was shame about me being depressed and ‘why can’t I hold it together?’

BLOOM: How did you cope with your own issues and Max’s?

Alicia Hendley: Once we were hooked into the system there was a lot to be offered. We went to KidsAbility and they had a lot of services before school started. Emotional regulation is Max’s biggest difficulty. When Max was in a meltdown it felt like a storm. And when he was littler if he would hit himself that was something I could hardly bear to see.

The occupational therapist had me stay in the room so she could teach me ways of helping calm him down. I learned a deep pressure hold I could do and that was huge. It didn't help my mood—once I got in that depression I was in it—but I did start to feel more hopeful that there were ways to help him. We did a number of rounds of ABA, but here that just means a couple of hours a week. We never got into morning-to-night services. He still got to be a kid.

BLOOM: Did anything help your mood?

Alicia Hendley: We did a program called Stay and Play where children with disabilities were paired with typical kids of the same age to play, while their moms received education in another room. Every week they had a topic for parents, but it quickly became clear that the mothers were most interested in talking with each other.

We were all isolated and we wanted to connect. We would complain about things. We would commiserate. We would laugh and talk about our lives in general. We all ‘got it’ when a mom said that if she hadn’t packed her child’s orange spoon there would be hell to pay. We got that this wasn’t a bratty kid, but a kid for whom the world seems very unpredictable and having an orange spoon makes it less scary. I felt a huge sense of relief in that group and that maybe I could be the mom I wanted to be.

BLOOM: What advice would you give a parent who’s struggling with their child’s diagnosis?

Alicia Hendley: I needed to have a professional outside the family to talk with, a good solid therapist who was familiar with working with families with kids with disabilities. The sooner parents do that, the better. My husband and doctor pushed me to see a social worker and I thought 'What's she going to do that I don't know?' But she was so beneficial and helped me so much.

The first thing I would tell new parents is 'let yourself feel whatever you feel and it's okay to grieve. It doesn't mean you love your child any less or are a bad mother.' I don't believe there are any bad feelings. If you instantly try to be happy or accepting it may be artificial. I needed medication. Not everyone needs medication. 

One of the best things is physical activity. It's been shown that walking every day is as good as certain types of medication for mild depression. You need support from family and friends. Maybe they don't understand about your child's special needs, but perhaps they can support you to have some time to yourself.

Journaling helped me. I work really hard on taking care of myself now. Once my little boys are in bed, I collapse for a few hours. I read, spend time with my husband or watch mindless TV to recharge. I used to try to fill all of those hours with things that needed to be done. Self-care is important: taking that bath, having that scented lotion or special snack or listening to beautiful music.

BLOOM: Was there any kind of therapy that your social worker did that was helpful?

Alicia Hendley: She'd let me vent and then she would frame things in a slightly different way and it was really about self-acceptance. She was accepting of me and none of my feelings were 'bad' and I wasn't a ‘bad’ mother or person. 

She helped me see things in a less extreme way and to catastrophize less. She talked a lot about caring for yourself and being gentle with yourself. She asked 'What are the moments that you love with Max?' I'd be wanting to talk about a horrible meltdown, and we would talk about it. But then she'd say 'What about the next morning?' and I'd remember that Max and I woke up at the same time and snuggled on the couch.

BLOOM: What helped you accept autism?

Alicia Hendley: Reading more of what autistic adults have to say about their experience. Initially I read up on Autism Speaks but it didn't help me in terms of acceptance. The message was 'Oh no, this is a tragedy.' I see my son, and when he's not struggling with a meltdown, he's not a tragedy. I acknowledge that yes, he needs supports in different areas. I don’t pretend he doesn’t.

I started getting asked a question that many parents get asked: 'If there was a magic pill that would take away the autism, would you give it to Max?' I really thought about that question. I read these heated debates on Twitter about a child hidden beneath the autism, but my experience is no, Max wouldn't be Max if he wasn't autistic. There's an autistic boy in front of me and it's part of the wiring of his brain and it's who he was, I believe, inside of me. If I took away the autism I wouldn't have this child and that would be a tragedy.

As I began to read more from adults writing about autism it helped me toward acceptance that this is a difference. There are challenges because whenever you're a minority, in terms of being different, there are challenges. If stimulation can be that overwhelming it can be a disability and you need to learn ways to cope.

BLOOM: Did you ever consider not sharing your journey with depression in your writing?

Alicia Hendley: I remember the first time on my blog when I wrote that I had a mood disorder and pressed 'send' I felt like I wanted to take it back. I felt horrible that people would know that I wasn't just this great mom trying to help her son, but that I have struggles too.

The initial draft of the book was all about Max, but it felt like so much was missing. Not including any of that felt false and it also felt too much like 'Look at me, I'm this great mom.' But I definitely didn't have it all together. And many parents don't. They grieve, they second guess themselves, they make mistakes.

BLOOM: Why did you decide to write the book?

Alicia Hendley: I was working as a psychologist when Max was diagnosed, and had years of training, and yet I felt completely lost and didn't know what to do. That made me wonder about other parents and how isolated they must feel. On my blog, parents wrote about feeling like they’d stepped off the world: people didn’t understand, family didn’t understand. I hoped the book could be helpful to other parents, especially the not-so-positive parts in the beginning where I was clueless and helpless.

BLOOM: Did you return to your job?

Alicia Hendley: No. I know that I invest too emotionally in my clients and that would put me at risk for getting depressed again. It’s still a bit hard for me when people ask ‘Oh, how come you’re not back at being a psychologist?’ It’s taken a long time and I don’t think I’m completely over the shame. But I’m getting there. I’m still working on self-acceptance.

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Courage Project: 'Accept things as they are'

A father, who we’ll call Bruce, contacted us about sharing his story in our Courage Project series. To protect his child, we have changed some identifying details.

Bruce and his wife were shocked when their firstborn child, a son, was born blue, resuscitated and transferred to a different hospital.

A breathing issue was later diagnosed as a heart problem, then other life-threatening conditions emerged. During the first few weeks a doctor from genetics came by and, without explaining why, began measuring the boy’s eyes, ears and face. Later it was announced that their son was deaf and had global developmental delay.

“After he was born my wife said ’He’s not my child,’ and those words have resonated with me every day since,” Bruce says. “She just couldn’t accept a son who was different from a regular baby. I tried to convince her that it was workable, that she would accept him over time, but she never did.”

Bruce worked long hours and travelled often. He arranged for caregivers to support his wife almost 24 hours a day and, when he was home, did most of his son’s hands-on care.

When his son was eight, Bruce was diagnosed with cancer. After an operation he began to spend most days at home. “That’s when I first began to suspect something. My wife was out most of the time and often a caregiver was left looking after him. When my wife was home, I’d hear screaming. I’d run into the living room and she’d be holding a slipper up and ready to hit our son because he’d wet his pants or was not cooperating with her attempts to dress him. He had some deep bruises on his legs, but she said he’d fallen. She stopped putting his splints on because she said he didn’t like them. She was supposed to be going to my son’s school to volunteer for the day, and then I found out that she popped in and left right away. I later learned she’d found another boyfriend.”

When Bruce confronted his wife he says she threatened to kill him and their son. “I went to the police and they arrested her. It took a hell of a lot of courage to make that decision. I was crying in the police station thinking about how she had abandoned both of us. How was I going to cope alone with my son’s needs?”

Bruce retired from full-time work to spend more time with his son and “the two of us get along fantastic together.”

His son lives with him but has one overnight a week with his mother. “When my son comes home from school, I’m there, and I work with him. I’m amazed at the progress he’s made these last few years.”

Bruce says a number of things gave him courage during this period. “My son is my courage. In his 12 years he’s been through a lot more than I ever could imagine. All the operations, all the blood tests, all the conditions he’s trying to beat, the prodding and the probing. I get courage from him.”

When his son was first hospitalized as an infant, it was a cleaning lady on the hospital unit “who gave me courage,” he says. “We were two months into this new world and more issues had been found. ’Don’t worry,’ she said. ’I’ve seen people go through this before, and you’ll become accustomed to it as time goes on. You’re not alone.’ She told me to focus on one thing at a time, that I can’t face the whole problem at once.”

Bruce says it’s important for parents to work on acceptance. “You have to accept the fact that your child is who he is and love him for who he is and not for what you want him to be. You can’t keep looking for answers. Once you accept things as they are, you realize there’s a new path open to you. For example, after working with my son’s teachers at age 11, he no longer needed diapers. My son's hands may be twisted with arthritis, but he can hold a pen properly and  wrote his name for the first time at age 12. I have lots of examples of how  consistent hard work and good teacher-parent communications have made small, positive improvements in my son’s life.”

Bruce says a support system is also essential. He has two close friends that he can call on if he needs a short break from his son.

The other key support in Bruce’s life was a social worker he saw at a children’s rehab centre. “She listened to me, and she helped me get through it. It was important that it was someone who understood our situation of having a child with additional needs.”

Part of accepting his son’s special needs involves being grateful, he says. “Coming to Holland Bloorview and SickKids I’m often struck by how wonderful it is that my son doesn’t have more severe disabilities or illnesses.”

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Disability doesn't just take, it gives

By Louise Kinross

Might Have Been by Rob Rummel-Hudson is a post every parent of a child with a disability can identify with.

You'll read it today on Support for Special Needs, and your heart will begin to ache.

Because you'll hear Rob, who wrote Schuyler's Monster: A Father's Journey With His Wordless Daughter, describing you, and your thoughts about what might have been had things been different for your child.

It's a place you don't like to go, Rob notes, and it's filled with guilt and shame, not the least of which is that it's tied up with every parent's deepest fear that somehow they are responsible for their child's disability.

Rob's piece is so honest and wise.

There's this part: "I think about what her voice might sound like, and the amazing things she might have to express with that sweet voice. I wonder if she would have a Texas accent (she totally would, y'all) or if her speech would be peppered with "ums" and "likes." I wonder what kind of writer she'd be if her understanding of language and the world were more complete...Would she be driving a car now? Would she have a boyfriend or a girlfriend? Or a close and equal friend at all, for that matter?"

Then he goes on to describe Schuyler's cousin, who "is younger by two weeks. In many ways, he provides an unspoken, mostly unacknowledged benchmark by which her alternate self might be tracked. We almost never discuss it, even with each other, but with every milestone he achieves, with every academic advancement and musical accomplishment, with every typical mile marker he passes, we feel it just a little. There but for the vindictiveness of God goes she."

Yup, you may be thinking, I've done that too, compared my child to a relative of a similar age.

But here's where things get interesting.

Rob's been on this path long enough that he's hit on a truth about parenting kids who are different. "Might Have Been isn't just an a**hole," he writes. "It's a fiction."

Because our kids' differences don't just take things away from them, they are generative. "It changes everything about how she thinks and how she processes the world around her," he writes. "Those different paths are hard for her teachers and friends and even family to understand, and impossible for us to travel. But they are her paths, and they are beautiful."

This reminds me of a presentation I gave to our research summer students a couple of weeks ago. It was called "What do you see?" and it's about how what we see in children with disabilities is a choice. We can choose to focus on what isn't (on what a child can't do in a typical way) or we can choose to focus on what is, and what is, in a human being, no matter what their ability, is immense.

In the case of his daughter Schuyler, Rob writes: "Schuyler is, by a country mile, the happiest human being I know. And it's not because she doesn't know any better. It's because she does. She gets the beautiful parts of the world, while I often only see the pain and the cruelty that it holds for her and for us all, I guess. Schuyler holds on to the aspects of the world that she cherishes, and she tries very hard to throw away the rest."

I think Rob has hit on the beauty and value and completeness that emanate from a different path in life. We see these qualities in our kids, ones that we cherish and marvel at, and that we struggle to articulate to the outside world, qualities that can't be separated from our kid's unique way of being in the world, which includes disability.

Hop over to Rob's Might Have Been and get ready for some exquisite writing.

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How a tattoo made my disability cool

By Tim Rose

Hi there! My name’s Tim and I have a disability. But this article is not just about living with that disability, or about how it impacts my life. It's about the importance of celebrating disability and how it has led to very good things for me. It's also about some ink that I wear with pride on my arm.

Before going further, let me introduce myself more fully. I was fortunate enough to be born with cerebral palsy spastic quadriplegia. Growing up, I used to get frustrated with the limitations that my disability put on me. I couldn’t play sports, I couldn’t stay up past my parents’ bedtime and I couldn’t always play how I wanted to play. For years, these limitations bugged me. But then something clicked in my head: I needed to embrace my difference, not let it beat me. No matter how frustrated I got, it was a part of my life and it was up to me to make it cool. I did it with a tattoo.

Yup, almost five years ago I decided to embrace my disability by getting the blue wheelchair emblazoned on my right arm in permanent ink. I had talked about it for years as a way to deal with some of the challenges that my disability posed. Not only did it look awesome, but it made me feel like I was taking ownership of my difference. Yeah, my body is different from most, but that difference is not something to hide from. When I did it, I wrote a blog that has today inspired me to revisit what it meant to me.

You will be happy to know that, all these years later, I still love it. In fact, I love it for so many more reasons than I did when I first had it etched into my pasty arm (beyond the obvious that it looks great). For a start, the day I got my tattoo was the day I met the amazing woman who is now my wife. For another, it represents my disability positive career turn. I now run a business called Disability Positive Consulting where I help businesses, schools and health workers look beyond deficits and gain a new appreciation for what it is to live with disability. My tattoo reminds me every time I glance at it why I’m doing what I’m doing. Lastly, it has been a huge confidence boost for me and the way I embrace my difference.

When I first did it, I talked about how it helped me define my disability. Here is a snippet from that original post:

And so my tattoo is my way of taking control of my disability and my identity. I am branded now, not by society, by my own choice. My disability does not define me, I define it. My physical limitations are most certainly still here, but I have grabbed my disability and made it a trait to embrace. The tattoo, to me, represents a very true part of me. Yes I have a disability, but on my own terms.

In reading this over again, I'm struck at how this was the seed for me to begin to think positively about disability. It was the step I needed to take to start this amazing road that I’m on. As I look at the tattoo now, I feel that same empowerment and strength, it’s just reached a new level. I have now devoted my career, and taken the leap as an entrepreneur, in large part thanks to that tattoo and the way that it freed me.

Let me be clear that I'm not saying to be “disability positive” you have to have it inked in your skin. But whatever you draw empowerment from, hold on to it and celebrate it. Whether it is a family member, a movie or even a particularly hot article of clothing, embrace the feeling that it gives you. It just so happens that my mark is a tattoo. Remember, having a disability does not mean your life cannot be filled with awesome experiences. I had struggles, in fact I still do, but I also have a lot of opportunities because of my disability. It’s okay to get frustrated, but hold on to whatever you have that makes you feel good.

Photo by Jamieson Dean

Tim Rose is a Toronto-based disability activist, writer and speaker who believes in celebrating disability in all its forms. Driven by this idea, Tim founded Disability Positive Consulting, an innovative business to promote positive ideas around disability in businesses, schools and communities. 

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Disability is part of my 'normal' life

By Jessica Geboers

When I told my mother that I was writing for BLOOM, she said it was ironic given her memory that we were kicked out of Bloorview rehab after my rhizotomy surgery in 1994 for being “difficult.” I was a strong-willed child and she was opinionated and independent. But she was also quick to remind me that those so-called difficulties led to immediate and visible improvements after she made suggestions during a parent support group while we were there. “It was confusing and disorienting being in a new place,” she told me. “Some parents didn’t speak English. I figured that if I struggled then they must have even worse.” So those who appreciate being greeted by a smiling staff member to explain the ins and outs as they enter rehab at Holland Bloorview with their child have Susan Geboers, and other parents, no doubt, to thank.

My mother was the one who taught me I could do, maybe not everything (because no one can go everything), but a lot that others could. I don’t remember there ever being a question of whether or not I would go to college or university—in fact, I graduated from Durham College in 2011 and will graduate from Ryerson University on June 8—live away from home or have a career, date and one day get married. It was just assumed. I only recently learned that my parents were quietly worried this entire time, as pointed out by my father’s psychic (because my parents believe in that kind of thing). But I’ve been assured that it's normal for parents to worry about their children’s future, regardless of their physical or mental ability.

I was born on January 23, 1990. Nine weeks early, I was about one pound and small enough to fit in the palm of my 19-year-old mother’s hand. It was two months and four more pounds before I was allowed to leave Sick Kids Hospital. Aside from my small size and wonky eyes, caused by an over exposure to oxygen at birth, I seemed like any other baby. It wasn’t until I was meant to start rolling over and sitting up on my own that my mom began to realize that I wasn’t reaching the normal development milestones. After multiple doctors and tests, at two years old I was diagnosed with cerebral palsy spastic diplegia. My mom says that when the doctor called to give her the news, she was so relieved just to have an answer that she said “Okay, thank you,” then hung up. It wasn’t until she began to think about it a few minutes later that she realized she had no idea what cerebral palsy was. So she called the doctor back. Unsure of what exactly my future would hold and not wanting to give my mother false hope, the doctor told her I would likely never walk. This is where, I believe, the problem begins.

In the 23 years since that cryptic prognosis, I’ve not only learned to walk but also relearned to walk after my rhizotomy and again after my leg surgery in 1999 (although my boyfriend’s mother doesn’t consider walking with canes to be walking). It took a lot of hard work by both my mother and I, but I seemed to have fared a lot better in life than the doctors predicted. I don’t blame them, as there are many forms of cerebral palsy and even the same form can differ further from person to person. For example, while my best friend, Hanako, and I both have spastic diplegia, she can walk on her own but I need at least one cane.

It hasn’t always been an easy life, full of the ups and downs of growing up. I’ve struggled with depression and trying to find my place in a world that I often feel I don’t quite fit into. I’ve felt like I’m stuck between the able and disabled worlds with a foot in each—too disabled to go unnoticed but not disabled enough to entirely relate to the disabled community. But despite all of this I’ve always considered my life to be quite unquestionably normal. This is why I find it odd, and a bit sad, when I meet people who are surprised to learn that I live away from home with a roommate, study journalism, spent a semester studying and traveling in New Zealand (during which I went skydiving and bungy jumping), love going to concerts and, not only have a boyfriend, but a boyfriend who is not disabled. This last point is particularly interesting given that I’ve never given much thought to dating someone with a disability. Not because I am a “disabled hater,” as Mom jokingly accuses me, but because most of the guys I come across in daily life are able-bodied. Once people move past their surprise, they often tell me what a great inspiration I am for being so accomplished. But while it is sometimes nice to hear I’m doing well, I hate the implied assumption that people with disabilities don’t do these things and that I am therefore special.

I recently saw a TedTalk by Tamara Taggart, whose son, Becket, has Down syndrome. She speaks about how the doctor apologized and consoled her when giving the news of her son’s condition, just five days after his birth. Tamara said that set the tone for all of the negative conversations with doctors thereafter about all of the things Becket would never do, such as walk, talk, go to school or fit in with his peers (to which the doctor actually said “yes, that is a legitimate fear, as people with Downs are often lonely.”) But she also speaks about another conversation she had with a very hopeful and empathetic oncologist a few years later when she was diagnosed with cancer. This doctor focused on all the positives and told her about how this experience would change her for the better. Tamara wishes that when telling her about Becket’s Down syndrome, the first doctor had offered the same hope and told her about how wonderful her little boy would grow up to be. Parents generally hear first about their child’s disability from a doctor. That’s why doctors should be more mindful of the negativity and stereotypes they are fostering.

It reminded me of how some friends of mine reacted when they were told their son had cerebral palsy—already worrying about how he would never have a job or get married. Don’t get me wrong, I understand fear of the unknown and mourning for the perfect life and child parents thought they would have. But age two is far too young to predict or write-off a child’s future. Having cerebral palsy doesn’t have to mean that the life a parent envisions for their child is impossible—it may just be accomplished in a slightly different way, or better than they could have ever imagined. Maybe he won’t play soccer, but maybe he will play sledge hockey, become a writer or go into the arts or sciences. Finding work is challenging to say the least but a good education, patience and connections are helpful—that’s how I came to be writing for BLOOM. Dating is not always easy (not that it is for anyone). My boyfriend’s parents are old-school European immigrants who dislike me simply because I have a disability. While that is a whole other story, what is important is that this is an extreme case that does not, and will not, happen to everyone.

Being aware of the science of your child’s condition and doing what needs to be done in order to improve their quality of life is important. But it’s also important to help them feel comfortable with themselves and their disability by calling attention to their positive qualities and potential to live a happy, productive and, possibly, somewhat ordinary life.

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