Reflection

Last week, I turned 57 years of age. With retirement now less than 27 months away, there is an opportunity to reflect on what has occurred to this point in my life. This reflection necessarily includes a determination as to how I have coped with living as a person with a physical disability. Surprisingly, as time has gone on, the concern of what was once a very uncertain future has diminished significantly, likely in part due to the process we all go through, to define ourselves and our normal state of being. I believe this process is to a large extent based upon two words which defined my past and likely has significant application to all persons with cerebral palsy. Those words are acceptance and adaptation.

Childhood

As a very young child, it never dawned on me that I was in any way different. I suppose that at the age of five, I thought all the other five-year-olds were doing as I was, going daily by Easter Seals bus to GF Strong for treatment and to attend kindergarten. The two years I attended school at GF Strong was my normal, which obviously became a different normal, when I entered the public school system. As would soon become apparent to me, what I thought was normal was somewhat different in the world of public school, given that I was the only disabled child in the school.

This was one of my first experiences with the two words adaption and acceptance, both for myself and for those who I met. One has to remember that in the mid-1960s, integration of disabled children into our public schools was not anywhere near the extent that it now is. In fact, to some extent, integration was still frowned upon and the idea of institutionalization of those who were different remained the norm. I guess, to an extent, I was one of the trail blazers on this particular issue.

Adapting to my ‘new normal’ in public school meant that I had to understand that the great majority of children would see me as one of them, as long as I did my part and treated them with the respect which I was hoping for. There would always be the stares and the odd comment, which is often the response of others witnessing a difference in their environment and it is often the response toward any person who is in any way different. This would have to be accepted by me for the rest of my life, which was initially easier said than done but soon became apparent that this will be part of my challenge to rise above it all. Again, acceptance and adaptation.

Fortunately, there was more than enough support and acceptance to keep my head up and soldier on. It also became clear that I had to adapt somewhat to this reality and there was somewhat of an obligation on me to educate the other children on what my disability was and what it was not. It was not something that they needed to be afraid of nor would they catch anything simply by hanging out with me. It was simply something that happened at birth, that’s the way it was, like it or not.

The hand you’re dealt

This perspective was one that I maintained all my life, one that aligns with the idea that we are dealt a certain hand in this poker game called life and that you either played your hand or you folded. However, those that tend to fold tend not to enjoy the highs and lows of the journey through the game called life. Thus, I grew up with the view that I could either “fold”, or I could discover the value of the cards I held and adapt to my reality, regardless of what I may not be able to do.

It soon became apparent that there were plenty of goals I could achieve. Part of the exercise was identifying what were those goals which would push me to achieve new limits physically and mentally. It was also a challenge to identify the fear involved in pursuing the challenges and eradicate such fear to the best of my ability.

It is this honest effort and approach which fortunately won me acceptance among my peers, particularly as I grew older. It became my obligation to do all I could to ensure people around me were comfortable with my disability, understood what I was all about and what I should be held accountable for.

A roller coaster

The roller coaster of living with a disability mirrors the highs and lows of the life cycle of a young child, adolescent, young adult and aging adult. The difference for me was to try to incorporate whatever challenges my disability brought into the challenges which life itself brings and to try to accept those challenges in the best way possible. To me, the ability to get the most out of life meant I required acceptance, both myself for my disability, and from the world for who I was.

Acceptance and adaptation are two major aspects of travelling the journey with the disability. However, the achievement of these concepts require a considerable role on my part, which in turn requires me to identify and accept the process which I needed to pursue. Acceptance and adaptation are not concepts which naturally flow directly to anyone, unless there are positive steps taken by the individual to allow these concepts to occur. In the world of a disabled person, it is undoubtedly more of a struggle to identify and accept the processes which we have to undergo to get to the point of achieving purpose and success; however, it is an essential exercise that we all must go through.

Potential

It is an interesting journey for me, particularly with respect to being a single person as a young adult, a married man, a father of a daughter and a professional for almost 30 years. All of these roles have their demands, which I’ve had to fit into my normalcy of being a disabled person. That requires a certain amount of adjustment, compromise and knowledge with respect to what I can and cannot do physically, particularly as I age. This is a process which everybody goes through, regardless of ability or disability. It is perhaps a reflection of the perseverance and the capabilities of the disabled person to go through what is undoubtedly a difficult process for many people, with the additional challenges of their disability and yet still endure and in many cases, succeed and excel. The examples of this are numerous throughout the disabled community and speak volumes to the potential which is inherent within us all, regardless of ability or disability.

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About Peter Brown

Peter Graham Brown was has lived all his life in the Vancouver area of Canada. He completed two years at Capilano College, followed by three years at Simon Fraser University, where he graduated with a BA in criminology. Peter graduated from the University of British Columbia’s UBC’s law school in 1987 and articled with the Ministry of the Attorney General, Legal Services Branch until he was called to the bar in 1988. He has worked in his present position with the office of the Public Guardian and Trustee since 1991.

Peter is adopted and has four siblings and numerous extended family. He has been married to Michele, who is an elementary school teacher, since 1992 and their daughter Ashley is 22 and finishing her BA in International Relations. They currently live in Port Coquitlam BC. Peter is a member of the Advisory Committee of the Cerebral Palsy Association of British Columbia

Nicole Luongo is an author, disability advocate and a big fan of DIY fitness training.  She has a message for everyone – get moving! Nicole is today’s guest blogger…

Fitness with CP

I’ve enjoyed reading health/fitness magazines, watching exercise routines, and working out for as long as I can remember. In high school, I rode an stationary bike while listening to my favorite music. By the time I enrolled in college, I’d purchased a NordicTrack. I loved “skiing” (something I could never do because of CP) indoors and breaking a good sweat. I did cardio/strength training classes at the gym for years, then graduated to working out at home. I exercised not only because I enjoyed it, but because it was good for cardiovascular health, weight loss, etc. What I didn’t realize is how beneficial — and essential — physical fitness is for people with cerebral palsy.

Why work on your fitness?

The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) defines physical fitness as “a general state of health that results in your ability to carry out daily tasks without getting too tired.” It wasn’t until decades later — when I had selective dorsal rhizotomy (SDR) surgery and became a disability advocate — that I learned the damage (often referred to as “early aging”) spasticity, or abnormal muscle tightness, does to our bodies. It can cause a decrease in endurance and walking as well as muscle and joint pain. Plus, those with CP who can walk independently with or without walking aids increasingly need wheelchairs. Did you know that we use 3 to 5 times the amount of energy that non-disabled people use when they move and walk? It’s no wonder fatigue is one of the common problems reported by people with CP as they get older!

For adults, the American Heart Association recommends “at least 30 minutes of moderate-intensity aerobic activity at least 5 days per week for a total of 150 OR at least 25 minutes of vigorous aerobic activity at least 3 days per week for a total of 75 minutes; or a combination of moderate- and vigorous-intensity aerobic activity AND moderate to high-intensity muscle-strengthening activity at least 2 days per week for additional health benefits.” There is no evidence to suggest that these requirements should be any different for people with cerebral palsy.

My workouts

My favorite workouts combine cardio and strength training. I like to pack as much as possible into 30 minutes; sometimes less or more, depending on the routine. Don’t worry if modifying is necessary— and, don’t let that stop you from exercising! It’s easy to adapt most moves to your ability and/or fitness level. For example, I use a chair to do burpees and for balance while doing lunges. Stay hydrated and remember to stretch (very important if you have CP) before and after any activity, especially if you need more than what’s included in the workout. Keep this in mind: The only form of exercise that matters is what you’ll do. If you’ve never worked out before, start slow and consult your doctor.

I recently purchased a Pilates machine. Now that I’m 43, it’s been fun learning slow, non-impact exercises excellent for core strength, increased range of motion (thru stretching) and stabilization — areas in which people with CP are usually lacking. I firmly believe that a life-long habit of consistent exercise helped maintain my high function level. It’s important to learn about your body and how exercise can help the effects of cerebral palsy as you or your loved one ages. Physical fitness is one of the best gifts you can give your body and your CP. Don’t wait until it’s too late — get moving!

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About Nicole

Nicole Luongo is an author and a disability advocate dedicated to raising awareness for selective dorsal rhizotomy (SDR), a life-changing surgery for adults and children with cerebral palsy. Nicole is also on the international World Cerebral Palsy Day Committee.

Nicole’s work has been published by The Mighty and The Huffington Post. Her blog is nicoleluongo.com.

Follow Nicole on Facebook – What CP Looks Like, Instagram – @whatcplookslike and on Twitter – @green4cp, and watch Nicole’s ‘Planking for Cerebral Palsy Awareness’ on YouTube.

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Blogging for World CP Day

You too can be a guest blogger on the World CP Day website! Find out more…

The day the writing appeared on the wall was the day…Romeo was born!

On August 31st we celebrated Romeo’s birthday! That was the day he was delivered to me by my publisher. (I told her she was also now an obstetrician!) But the idea for him, and the beginning of the book actually happened at school one day.

I’d been writing silly stories about some of my students (many of whom have CP.) The kids loved hearing the stories I made up about them. Also, we’d been reading a popular funny book in our class. The students enjoyed the humor—but I wondered how much they could identify with a character whose life was so much different from theirs.

I began looking for funny books that had characters who were like my students–but I didn’t find many. So I wondered if I could create one. I didn’t want it to be a teaching tool; I just wanted it to be fun. I wanted my kids to have a hero (even if he’s a comical one.) And I wanted the world to see that kids with disabilities are still kids who have fun and live fulfilling lives.

The character of Romeo is sort of a mixture of students I’ve known over the years. Fellow staff members have also shown up in the books. But in a way, I think Romeo represents all of us. People identify with him because he makes goofy mistakes. And like most of us, he really tries to do the right thing.

I’m just starting my 20th year of teaching this school year. The majority of those years, I’ve worked in the exceptional student environment, and particularly high medical risk. Most of the kids I’ve known and loved use wheelchairs for mobility and eye gaze or simple signs and/or communication devices to express themselves. Fortunately, I’ve been able to keep some of the same students for several years, which is valuable because sometimes it takes a while to know someone. It takes time for students to open up and time to develop relationships with families.

I think trust is the biggest issue. I may not always do the right thing for you or for your child, but I hope I can be an encouragement. I’m so impressed by the courage of parents and grandparents who give so much of themselves in the care and well-being of their children. And I can only guess at how hard it must be to walk away and leave those precious kids in the hands of someone else to care for them each school day.

Or, if you, yourself have a disability, I hope something like the “Romeo” series can bea positive and bring more acceptance to our communities. When “Romeo” first came along I was worried I might offend someone. I didn’t want to make light of someone having a disability. What I really wanted to express was this “joy” in living—a thing so many of our kids possess in spite of their problems. I wanted to express that “thing” that keeps us laughing and keeps us coming back for more. I know my kids understand a lot more than they can tell me. And when they laugh at the punchlines, that’s when the sun breaks through!

Over this past summer I worked on a project I hope will become a new series. It doesn’t have a special needs hero this time; instead, it has animal characters. This series will be for all abilities (just like The Romeo Riley Series.)

But if people keep enjoying the series, I plan to do a new “Romeo” book in the future. It is my hope that Romeo will continue to have birthdays and keep making people smile. And if Romeo can bring a bit of adventure-or invite a distant world to into his for a moment—then Romeo has done what he set out to do. After all, he’s Private Eye, Romeo Riley isn’t he? And there will always be mysteries for him to solve, and loved ones he’ll want to protect.

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WEBSITES

• Romeo Riley website
• Romeo Riley on Amazon (USA) (First book of the series)