Podcast: #Two3rds Happy CP Day Part 1 (and a Webinar)

Scott & I are back! In this episode we discuss their experiences with Cerebral Palsy and try to figure out when C.P. Awareness Month actually is. We debate the potential need and reasons for a figurative holiday celebrating individuals with the diagnosis. Give it a listen here.

I’m also participating in a free CP-NET webinar on Friday April 21 from 11:30 a.m.-12:30 p.m.: Growing Up with CP: Mental Health and Well-being. Please register, save the date and share with your network. See the event poster here.

Podcast: #Two3rds Happy CP Day Part 1 (and a Webinar)

Some new, positive, F-words to keep in mind

Cerebral Palsy: The Six F-Words for CP.
Cerebral Palsy: The Six F-Words for CP.

Twice in the past couple of weeks––once at CP-Net Stakeholders meeting and at the OFCP Annual General Meeting–my attention has been drawn to “The Six F-words for CP:” function, family, fitness, fun and future.

At first, I admit, that these sounded like a too obvious and overly simplified solution in the struggle to find a realistic and helpful approach to life with CP. But I was nonetheless intrigued, and aware that I may be too cynical towards such things.

The review article, “The F-words in childhood disability: I swear this is how we should think!” written by Peter Rosenbaum, from the CanChild Centre for Childhood Disability Research at MacMaster University, and Jan Willem Gorter, from NetChild Network for Childhood Disability Research in the Netherlands, was provided in my OFCP AGM package. I thought why not give it a read?

And I was pleasantly surprised. While I still believe this approach is a bit obvious, I appreciate  that it, although published in September 2011, is gaining traction within the research and treatment community.

While I invite you to read this article for yourself, there are a some key, exciting, points of revelation worth mentioning:

First, the traditional medical model of diagnosing and “fixing” doesn’t work with CP.  Put simply, CP is too complex and effects each of us differently, even, for example, two people who technically have the same type of CP. Thus, there is no short list of go-to treatments, no cure all. Not to mention that results are often only small and gradual after persistent, sometimes lifelong, treatment. Our quality of life can be improved but we cannot be fixed. At this point, such an absolute goal will only lead to frustration and disappointment.

Second, one does not need to do something, such as walk or talk, normally in order to be functional. Conventional development is a reasonable guide, but by no means the only way of doing things. I often explain, to people who inquire about my limitations, that I can do everything an able-bodied person can do, just maybe in a different way. Just as someone else may wear glasses to see, I use canes to walk. What’s important is that children with CP be given the opportunity, and assisted as necessary, to learn how to function to the best of their ability in a way that works for them. Fine-tuning their performance of these functions will naturally over time.

Third, treatment and counselling should include not only the child with a disability, but their family as well. Explaining the child’s condition and treatments––and making sure they understand––can help parents, grandparents and/or siblings make peace with this new reality and move forward to a happy and fulfilling life for all. This could mean helping with exercises, finding accessible activities for the whole family to do together, or learning how and when to advocate for the child.throughout their lives. When complicated on my ingenuity in accommodating a task, I often point out that others could probably do the same if it was necessary.

Fourth, fitness and fun can be grouped together in that it is important to for a person with CP be given the opportunity to discover activities they enjoy, just like anyone anyone else. Then, similar to function, figure out how it may need to be accommodated to their abilities.

Lastly, and perhaps most importantly, people with disabilities have a future, just like you. Service providers should make this clear right from the start, and keep it in mind throughout their relationship with the child and their family. This could be a future full of friends, education, goals, dreams, and even romance.

 

Some new, positive, F-words to keep in mind

What do you say about your disability in an interview?

 I'm spending the summer working as a counsellor at the best place in the world, Easter Seals' Merrywood Camp––for children and youth with disabilities––in Perth, ON.
I’m spending the summer working as a counsellor at the best place in the world, Easter Seals’ Merrywood Camp––for children and youth with disabilities––in Perth, ON.
I got my first paid writing gig with this very publication in March 2015. I had finished classes and was visiting my grandparents in California. When I got the email, I couldn’t wait to call home to tell dad that someone was going to pay me to write. I knew that he worried about me finding work.

That’s not to say that I wasn’t worried, but it’s different knowing your parents are concerned about your future. With a college diploma and university degree—both in journalism—I didn’t want to disappoint my parents after spending so much time and money in school.

I graduated from Ryerson University with a Bachelor of Journalism on June 7, 2015 and I’ve been looking for work ever since.

That’s not to say that I haven’t been writing. I’ve been writing and published pretty regularly over the past year on the topic of disability. I’m using my talent and love for writing to spread awareness on what I know best. It’s the dream. But I’m not sure I have the makings to be the kind of freelance writer who can juggle enough work to pay the bills.

So I’ve been on the hunt for a day job—full- or part-time. It’s a tough job market for anyone right now, especially recent grads. Gone are the days when a college diploma or university degree guaranteed our parents a job for life.

That’s difficult when people are this educated. It’s even more challenging when I have to consider my physical and learning disabilities. Unlike a lot of people my age, I can’t really work retail or as a waitress or any other job that requires me to stand for long periods and carry heavy objects.

I can’t hide my cerebral palsy. I can only hope that employers aren’t blinded by assumptions about what I can and can’t do, and give me a chance based on my qualifications. So far, no one has come right out and said anything about my physical disability. But I can sometimes tell they’re surprised or uncomfortable when they first meet me.

My learning disability has been more of an issue at job interviews.

In school, a learning disability is challenging but manageable. We have rights to accommodation—for me this often meant copies of notes and extra time on tests. There are policies and people in place to help level the playing field. You just have to know who and what to ask for. However, at no point during my post-secondary education did anyone explain how to advocate for what you need in the workforce.

Thanks to the Accessibility for Ontarians with Disabilities Act, many employers state that they are equal opportunity employers who don’t discriminate against those with disabilities. Some, including the City of Toronto, have explicit policies and procedures for those who need accommodation during the hiring process. I appreciate and wish that all employers had clear policies for accommodation during job assessments.

Recently I’ve sat a few.

In two cases I was told I was just having an interview, but when I arrived, the employer asked me to take a test. The first time, because I hadn’t been given a heads-up, I felt unsure, uncomfortable and annoyed.

Usually, I need a bit of extra time, a computer, spell check and a calculator. Without them, I knew the test wouldn’t be a fair evaluation of my abilities. But I wasn’t sure I should tell the employer about my learning disability. Should I or shouldn’t I? I didn’t want to be taken out of the running. So I didn’t.

The second time I was invited by email to a job interview for an administrative assistant, but when I got there it was an exam. In fact, there was no interview!

I was a bit thrown, but I figured I’d make the best of it. Then I eyed the math section on the test and my “can-do” attitude evaporated.

I’m terrible at math, thanks to my learning disability. My learning disability affects my comprehension, spelling, grammar and math skills. I’ve been able to find ways to manage the first three issues, but I’ve never found a way to wrap my mind around math.

In high school, I only took locally-developed and workplace level math. As a result, there was math on that job test that I’d never seen before. When I got home and told my roommate about the letters and brackets, she told me that was called algebra!

I did ask if I could use a calculator. When they said no, I asked if I’d be able to use a calculator on the job. Oddly, they said that would be fine. Throwing caution to the wind, I came clean and told them about my learning disability. They looked uncomfortable and told me to do my best. Not surprisingly, I didn’t get called back for an interview.

So while my search for a day-job continues, I’ve realized that I have nothing to lose, or be ashamed of, in being upfront about my learning disability. In future, if invited to an interview, I’ll ask if it includes an assessment. If it does, I’ll let people know about my disability before we meet.

From here on out I’ll look for, inquire about and follow any procedures necessary for accommodation during the hiring process.

If an employer has a problem with my disabilities and doesn’t wasn’t to accommodate me, I probably don’t want to work for them anyway.

Originally published by BLOOM.

What do you say about your disability in an interview?

Sisters: ‘Look at me, I’m disabled too!’

Sibs1

When I was a child doing physical therapy at Grandview, my younger sister Avery climbed into a nearby hand-bike and begun riding around the room calling out, “Look at me, I’m disabled too!” She wasn’t trying to be offensive or insinuating that I, somehow, had it better; she only wanted to fit in and have fun like me.

I often ask my mother what she thinks BLOOM readers may be interested in reading about. In addition to her own personal experience of raising me, she now belongs to a Facebook group where moms of children with cerebral palsy share stories and advice. Mom suggested that I write about siblings, given that parents in the group often express concern about not spending enough time and attention on their able-bodied children because their child with a disability requires more care. They also worry, she said, that they might be putting too much pressure or responsibility on their children without disabilities to pick up the slack.

These concerns seemed reasonable, even for larger families with many children without disabilities. Like any good journalist, I decided to begin with some preliminary Internet research to see what had been written on the subject. What I found focused mainly on siblings of children who had severe disabilities and required constant care.

While this is obviously a reality for many families, it didn’t apply to my family. I am moderately disabled and able to take care of myself for the most part. Growing up, my parents always told my siblings—sister Avery, now 17 and brother Jared, 15—and I and anyone else that was around that I was part of the family but that our family didn’t revolve around my disability and me. This meant that while I may have needed extra care, my parents were also mindful to make time for Avery and Jared as well. So, for all the time they spent playing with the toys and adaptive equipment while I went through physiotherapy, it could be said that they were just killing time until Mom dropped them off at gymnastics or hockey.

In a lot of ways, this was Avery and Jared’s normal. Mom recently reminded me that it wasn’t until my sister began school that she realized that not everyone needed ankle-foot orthoses or had sisters who were disabled. Every morning Avery sat on the bottom stair trying to put my AFOs on the way I did, while telling Mom that she couldn’t go to school without leg braces. Before then she hadn’t know any different. Avery even learned to walk pushing my walker around the front lawn.

Obviously, Jared, who came along two and a half years after Avery, had a wider frame of reference, but he was still rather desensitized to my differences. Once he learned to walk, his favourite game was running away with my canes. He learned very quickly that I couldn’t get around, let alone get them back from him, without at least one of them. (This is when I learned to get around the house with the aid of the furniture and walls; from which point onward Mom cursed me as she scrubbed my fingerprints from the walls.) Once Jared began to talk, he would yell, “You’re nothing but disabled!” whenever he got mad at me. “Thanks Tips” was often my response.

When I was around eight, and we still lived within walking distance of our grandparents’ house, Dad would often walk us over to visit them. I would drive the grey Power Wheels Jeep my parents gave me as a reward for using my quad canes for two months straight. My sister was strapped into the passenger seat with a pillow for support and always fell fast asleep (how she slept through my jerky stop-go-stop-go driving no one could quite understand). Our green wagon, the one with two seats and a door, was attached to the back carrying my canes and whatever else we needed to bring. Dad, with seemingly endless patience, strolled slowly behind us.

Avery grew into what my mom calls a “Mensa baby” because she not only reached all of the expected milestones in a way that I had not, but she did so quite early. My parents couldn’t help but be shocked and impressed. Not long after she crawled, she walked, climbed and ran. One of her favourite activities for a time was dismantling her crib, escaping from her room and climbing into bed with me (although I now find this funny and cute, at the time I had mixed feelings). To try to remedy managing a wheelchair and a double stroller, Mom briefly entertained the idea of putting Avery on a harnessed leash of sorts. This was short lived however, as Avery quickly began behaving like a dog in public, and I encouraged her by laughing shamelessly and patting her on the head. From then on, the kids would take turns riding on my lap.

The juggle and struggle of three kids, one with special needs, never stopped Mom from taking us on trips and activities. Together we have flown countless times between Toronto and Edmonton and Palm Springs to visit family, and been horseback riding in Banff and white water rafting in Jasper. Mom told me that rarely if ever did she worry about how to manage us until we were on our way and she had no choice but to figure it out.

A great example was rafting: When our 20-something instructor, highly attractive, shirtless and with a nipple piercing, saw me struggling to walk over the rocks to the boat, he picked me up out of nowhere and carried me to the boat to sit with him. I was 15 and mortified that my mother might tease me, as she looked like she could barely contain her laughter. Although it wasn’t always easy, I really appreciate my mother’s determination to do these sorts of things with us. Not only has it given us all wonderful family memories, but it has also taught me not to be held back by a potential struggle because it could be worth it for the life experience.

As the oldest I’ve spent a lot of time babysitting and caring for my siblings while my parents worked. This included playing house with my sister while she used my canes to pretend she was disabled too; watching movies while pretending our living room was a movie theatre; trips to the park, me with my walker and them on Jared’s Power Wheels dirt bike; and making grilled cheese, Kraft Dinner, chicken nuggets or tea and toast—the only foods they’d eat for years.

When my brother and sister began school, I assisted with kindergarten and primary school homework. When they bathed I would answer the call to rinse soap from their eyes and check their hair was free of shampoo. To accomplish a lot of these things I taught them how to “help me help them” by carrying things, opening doors or climbing up on the counter to reach dishes I was too short to reach (thanks to my short stature of 4 foot 9). I may not have always appreciated this time with my siblings, but in hindsight, I love this time with them! They were so funny and cute, and it made me feel good to play a helpful role in my family. I’ve also realized, as I’ve gotten older, that it’s helped me to prepare for the possibility of having my own children.

However, this isn’t to suggest that there was never any jealousy. We battled from time to time for the upper hand, as many siblings do. But, likely due to the age gap between the kids and I, most of the jealousy came from me rather than them. I’ve always admired the apparent ease with which they did things, and I never wanted to see them waste their potential—especially when it came to their education. The struggle to accept my physical disability is definitely real—and at times, ongoing—but I’ve always been particularly annoyed with the limitations of my learning disability. Although I’ve often enjoyed school and achieved good grades, I’ve always had to work hard to achieve them. (I think one of the reasons school has always been so important to me is that, unlike my CP, I have a bit more control over it and can more easily combat it with time and effort).

Avery, on the other hand, is quite naturally academically inclined. I’ve always felt that if one can do well easily, one should. So I’ve always encouraged the kids about the importance of school. In reaction to Avery’s apparent ease, both my parents and I have always praised her while unintentionally developing an expectation of her success. And although it is difficult for me to know the full extent, we have learned in recent years that this expectation resulted in Avery putting a lot of pressure on herself. She feared disappointing us if she did not keep it up. We now make an effort to praise her accomplishments without any implied pressure. Jared has always been far less bothered by such things, and is quite easy going in general.

When Avery, Jared and I would argue while growing up, Mom would often remind us to be kind as we may need each other one day. This always bothered me because I took it personally to mean that I may not be able to remain independent as I aged. More recently, I realized that Mom only wants us to be able to depend on each other as family. It has also been an interesting realization for me, now that the kids are older, that I can depend on them to help me.

For instance, when we were at the West Edmonton Mall’s indoor waterpark a couple of years, Avery and Jared worked together to assist me: in inner tubes, we all linked together, with me in the middle, to keep me from floating too far from them in the waves. Later, Avery held me up as we walked out of the pool towards my canes. Mom was so happy with this that, we later discovered, she took a photo and sent it to Dad. More recently, when I injured my back in a fall, Avery came to Toronto to look out for me. Jared, while he is less likely to volunteer, will help me if I ask him to carry or reach something. I see the effect of growing up with me more so in the way Jared responds to and is tolerant of others who are different. While the other boys made fun of another boy in his class with CP, Jared did not, and was mindful to help him when needed (even though, Jared told me, he did find the boy a bit annoying, but not because of his disability).

During my research in preparation for this piece, I asked Avery if she had ever been jealous of me or worried about caring for me when we were older. She told me she’d never been jealous, except when I went to Easter Seals’ Merrywood Camp: “That made me a bit jealous,” she said, “because it looked like fun.” As for caring for me, she’d never given it much thought because I was older and she’d always seen me take care of myself. “I’ve just thought that maybe we should live in the same city,” she said, which we soon will.

Avery recently rented an apartment in Toronto with a friend in my building and will be studying at the Ontario College of Art and Design in the fall. Not that I think Avery moved here for me. It just so happens that we both love Toronto. But it will be nice to have her close by. As much as I hate to admit such things, maybe Mom was right: we may need each other one day.

Jared, Avery and I in May 2015
Jared, Avery and I in May 2015

Originally published by BLOOM.

Sisters: ‘Look at me, I’m disabled too!’