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ISSUE
CPABC NEWS LEISURE

PRESIDENT’S
REPORT
WOW! Again, I say, WOW!! It was quite an honour and an awesome experience to be Paralympic torchbearer 144. I was part of the final 24-hour torch relay. The flame was carried by numerous torchbearers around the clock and ended with the lighting of the large Paralympic Cauldron at the end of the opening ceremonies on Friday, March 12th. I met other torchbearers at 11:30 p.m. on Thursday evening. I was informed that I had an additional task to do along with carrying the torch. I’ll say more about that later. It was 1:40 a.m.. I saw the flame coming from a block away. I could already feel the excitement building inside of me. I held out my torch as the torchbearer before me came and stood in front of me for the ‘kiss of the flame’.

mally one of the busiest in downtown Vancouver. How cool was that? My experience gets better - I was selected with the special task of lighting the 2 a.m. cauldron at Robson Square. It was lit every two hours throughout the relay. I was among the few that had this honourable task. I had no idea as to how overwhelming the experience of carrying the torch would be. This most definitely was one of the proudest and honourable moments of my life. I was also a volunteer for both the Olympics and Paralympics. I was a host for the Olympics and spent most of my time outside of the Waterfront SkyTrain Station giving directions to people to find the large outdoor Olympic Cauldron and various pavilions. It was fun telling people where to go. I also enjoyed meeting and getting to know some of the other volunteers that I worked with. I was also a ‘Ceremony Support Personnel’ for the Paralympic
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Craig lighting cauldron

My torch was lit. I now had the flame! I really had the flame!! We did a ‘highfive’ and I was on my way heading down Robson Street. I had the whole street to myself. I did two doughnut twirls with my wheelchair in the middle of the intersection of Robson and Burrard, nor-

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CPABC NEWS . Spring 2010

LET’S TALK ABOUT
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opening ceremonies. My involvement with the opening ceremonies began in December. It was cool to see the various parts of the show develop and come together. We had to keep the content of the show a secret. I have to say that it was sooo hard to stay quiet for sooo long. I hope you agree with me when I say what an awesome show! Many have said that hosting the Olympics and Paralympics would be a once in a lifetime experience. This rings so very true for me. I have been pleasantly surprised at how profound this experience has been. The ‘awe factor’ came to me during the Olympics when Alexandre Bilodeau won the first Canadian gold medal on Canadian soil. I was really touched and moved by the strong relationship he has with his brother, Frederic, who has cerebral palsy. It is a refreshing reminder that many families with cerebral palsy do flourish and the work we do as an Association is very worthwhile. The two brothers truly live CPABC’s mission statement - both raise awareness about CP, continue to reach for their highest potential and are realizing their place as equals in our diverse society. Their brotherly embrace on the ski hill, after Alex’s golden run, for me, bridged the two set of games together. It was then that I realized that the Olympics and Paralympics are more than just sports. As a torchbearer, I was truly touched and moved by the spirit of the games. With the help of a close friend, I was able to purchase the torch. With this torch, I now offer to share this spirit with you all. I can be available if you would like to see and even touch the torch. The torch still holds the power of the flame and always will.

CAMP!
The Cerebral Palsy Association of BC is excited to be able to offer a Special Needs Summer Camp Subsidy to assist children, teens and adults with cerebral palsy, across BC, in attending a summer camp. Money is available to help pay the camp fee and/or transportation charges. Completed application must be received, at our office, no later than May 31, 2010. To receive an application please email Feri at info@bccerebralpalsy.com, subject line should be: camp application.

THANK YOU CPABC
Dear CPABC, Thanks so much for deciding to pick me for this year’s bursary. It means so much to me. I’ve decided to buy a computer laptop and a printer for my work experience class at Kwantlen Polytechnic University in Langley to update my resume and to do class projects. Eventually when this course is done I would like to move out into an apartment to allow me to become more independent. I would also like to have a career that is right for me. This money is greatly appreciated. Sincerely, Angela Schuster Dear CPABC, I am very honoured to have been chosen for the Cerebral Palsy Tanabe Bursary and want to thank you from the bottom of my heart. I currently work part-time at SilverCity Movie Theatre and upon graduation from BCIT’s Digital Animation Program, I plan to work with a friend who is presently directing his first film.. I am hopeful in finding a job in an animation position, hopefully with Pixar, Disney or Electronic Arts. The road ahead of me isn’t clear, but I will face any challenges head on and with confidence. I’ll never give up. No matter what disabilities we have, we can still achieve our lifelong dreams and goals through hard work and perseverance.

Sincerely yours, Your President, Aaron Yeo Craig Langston ............................................................................................ EDITOR’S NOTE: Dr. Kishore Mulpuri’s name was misspelled in the fall newsletter article entitled, An Ounce of Prevention: The Need for Hip Surveillance in Children with CP. The Cerebral Palsy Association of BC apologizes for this error. 2

HIGHLIGHTS FROM ANNIEVILLE
How satisfying to find CPABC’s Disability Awareness Presentations for Elementary Schools are having a real impact on the way youngsters perceive a person who has a disability! The following excerpts were taken from letters sent to Tammy and PADS Service Dog, Breeze, from grades four and five at Annieville Elementary School in Delta, after their January 20th presentation there. “I never knew that cerebral palsy was a brain injury and it affects your muscles. I learned there is always a way to get past barriers, like going through, around, over, and under.”

TO RAISE . TO REACH . TO REALIZE
act with a real person who has a disability is key to promoting inclusion and removing attitudinal barriers for the next generation. Finally – PADS Service Dog Breeze, the Golden Retriever, is amazing but I don’t let her help with the cooking!

“I learned how (Pacific Assistance Service Dog) Breeze helps you with the lights and with cooking.” “It’s cool that you get to use cool machines.” “Just because you look different on the outside it doesn’t mean anything on the inside.” “You really encouraged me to look at things differently.” It’s gratifying to read comments like these. They indicate that our message is getting through to young people. Kids love the real-life stories about getting around physical barriers and giving them the opportunity to inter-

Breeze relaxing

FEATURING CPABC SPEAKER’S BUREAU
The Cerebral Palsy Association of BC’s (CPABC) Speaker’s Bureau provides informative and engaging presentations to schools, clubs, businesses, organizations, and other groups. This crucial service offers information on a variety of topics pertaining to cp, from disability awareness to aetiology. The Elementary School Disability Awareness Presentation Program continues to gain ground. This past year, Tammy & PADS Service Dog Breeze the golden retriever have visited 17 elementary schools in the Metro Vancouver area with their message of disability as just another aspect of human diversity. Elementary school-age kids are very open to learning how to help their peers, and to looking at disability in a different light. Tammy’s stories about growing up as a normal kid who happened to have cp helps students to get the point, as demonstrated by some of their questions. The Grade 4 class at Annieville Elementary School in Delta, for instance, wanted to know what sports Tammy played as a youngster; they wanted to know more about her job; they asked thoughtful questions about how she manages different daily activities, and of course they wanted to know how PADS Service Dog Breeze makes her life easier. Tammy and PADS Service Dog Breeze will be at several Surrey schools in March and April, including Betty Huff, Cindrich, and Coast Meridian. Join her at the Vancouver School Board’s Post-Secondary Transition Information Forum on March 29 at the Vancouver Board of Education Centre, 1580 West Broadway in Vancouver from 3:30 pm to 7:00pm, and at Langara College’s Disability Awareness Day “Abilities Unlimited” taking place at Langara College on April 13 from 10:00am to 2:30 pm. Tammy will also be attending a Transition Fair for students with developmental disabilities and their parents or caregivers at the South Arm Community Hall, 9020 Williams Road in Richmond, on April 17th from 10:00am to 2:00 pm, as well as the Abundant Life 2010 Information Fair for South Asian Families with Children with Developmental Disabilities, taking place at Walter Moberly Elementary School, 1000 East 59th Avenue in Vancouver, on Saturday April 24 from 10:00am to 3:00pm.. The CPABC is always looking for new opportunities to provide information and awareness; we encourage schools, clubs, community groups, and individuals to take advantage of our unique program. To book a presentation, call the CPABC office at 604-408-9484. Tammy van der Kamp is the CPABC’s Family & Individual Support Worker, and a member of the Speaker’s Bureau.

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CPABC NEWS . Spring 2010

OLYMPIC GOLD MEDAL
MEN’S MOGUL CHAMPION ALEXANDRE BILODEAU

Alexandre’s brother Frederic, one of over 50,000 Canadians with cerebral palsy, is also one of the millions of Canadians cheering for our athletes. The generous spirit of the Olympic Games recognized the hard work, dedication, and commitment of worldclass athletes, and of the supports behind them – families and friends all over the world, with and without disabilities, with and without cerebral palsy. People who have cerebral palsy are just like people who don’t have cerebral palsy in many ways – we might be lucky enough to have Olympic champions for brothers and sisters, and we might be Olympic champions ourselves. CPABC president Craig Langston stated, “the Quebec brothers’ story speaks of

inclusion. Part of our mission statement is to raise awareness, to reach our potential and to realize ourselves as equals in society, I think Alex and Frederic live that.” Craig Langston- who has cerebral palsysaid, ”When you saw them embrace at the end, it was just two brothers sharing that moment, and you didn’t see the disability.” Bravo, Alexandre Bilodeau!

Our Mission:
• To raise awareness of Cerebral Palsy in the community; • To assist those living with Cerebral Palsy to reach their maximum potential; • To work to see those living with Cerebral Palsy realize their place as equals within a diverse society.

Bilodeau Brothers

Cerebral Palsy Association of BC joined all of Canada in congratulating Alexandre Bilodeau, Canada’s first Olympic athlete to win Gold on Canadian soil.

CHILDREN’S BOOKS ON INCLUSION AND AWARENESS - ALL BY SUZANNE BERTON
Hold My Hand – Joanie is blind. Her friend Tina shows her that everyone has differences, but everyone is also the same. Marnie is Deaf – Marnie is hard of hearing. Her cousin learns what it feels like to be deaf and how to communicate. Megan Rides the Accessible Bus – Megan thinks riding her sister Mandy’s accessible bus is nothing, that is until Mandy challenges her to ride with her to school. A Special Family – Robin learns that her family is special. It Feels Good to be Me – What makes a little girl feel good? This book’s goal is encouragement in small children. To borrow any of these books, for a three week period, please phone us at 604-408-9484, Toll Free 1-800-6630004 or email info@bccerebralpalsy. com. Books will be mailed out to you free of charge. All we ask if that you return them to us at your cost.

Your 2010 Challenge!
Donate your skills and earn money for The Cerebral Palsy Association. What’s your passion – music, walking, gardening? Turn that passion into dollars for the Cerebral Palsy Association of BC by signing up on line at www. wellofchange.org. Enter your name, what you wish to volunteer as, how many hours you have to offer, at what cost, and the charity you are supporting. For example: Name: Volunteer: Hours: Cost Per Hour: Charity: Mary Bee Dog Walker 4 $8 CPABC

Clients will pay on line for your services. Money earned by you will go to the charity you have specified. What a great way to get involved with your community, gain volunteer experience and help out your favorite charity. Good employee challenge! For more information go to www.wellofchange.org or email info@wellofchange. org or phone 1-416-363-8888.

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A SIBLING STORY
BY RACHELLE R-CZERWINSKI
We have two sons, Michael and Nicholas. Nicholas has special needs. I can’t say when Mike realized that his younger brother had special needs. Mike did not ask questions but kept his thoughts to himself. One of my favorite pictures is where Mike is feeding Nick. Mike must have been four and Nick three. It is obvious that Mike did not realize yet that his younger brother had special needs. As time went by, I think Mike resented the fact that Nick was non verbal because he could not communicate with him. When Mike was seven we lived in Beijing, China. I remember his grade two teacher calling me and saying she was so sorry. She had no idea that Mike had a brother with special needs. I asked her how she found out. She explained that she was teaching her class the emergency procedures in case of an earthquake – not to stand under doors, to go under tables, etc. when Mike asked her what to do with his little brother. “Well”, she said, “he just does what you do, right?” Mike looked at her like what a silly thing to say and said, “My brother can’t walk, run or talk; so in case of an earthquake, what do I do with him?” She was speechless. When Mike turned 11 and Christmas was approaching, he asked for a special present – a baby brother. He had often mentioned wanting a nice pair of roller-skates so I was a bit surprised by the request. Me: “So you want a baby brother for Christmas?” Mike: “Yes. That is what I want.” Me: “Hmm. Well, you know it take about nine months to make a baby; so it won’t be here on time for Christmas.” My son was at the age when kids don’t believe in Santa Clause anymore. He also had not figured out how long it takes for babies to come. Mike: “Oh?” (He thinks for a little while.) “It’s okay, I can wait.”

TO RAISE . TO REACH . TO REALIZE
Me: “And you know, you wish for a baby brother, but it could be a baby sister.” Mike: “Oh?” (Again he thinks for a little while. Isn’t life complicated sometimes?) “Well, she is going to pull my hair and scream. I really would rather have a baby brother.” Me: “Mike, I can’t tell for sure, it could be a little girl – nobody can tell those things for sure.” Mike: “Oh well…I guess it’s okay.” Me: “And you know, he or she could also be special needs, like Nick. We also can’t be sure about those things.” Mike looks up, his eyes wide with disbelief, “Really Mom. How can it be possible?” I sigh, my heart feeling heavy. “Mike it’s one of those things. It may or may not happen but I can’t tell you for sure that the baby you wish for will be normal. Those things can happen.” Mike remains silent for a long while, sighs again and says, “Then no, I don’t want anybody. I don’t want another brother like Nick. I want a real brother. Can I get roller- skates then?” I let out a sigh of relief but at the same time felt so sad for my little boy who did not have the brother he wishes for. Now at 22, Mike sees his brother from time to time – mostly at family dinners. We always did our best not to put on him the burden of looking after his brother. Did we do that too well, maybe? Should we have had him more involved? It is difficult for parents to know the right thing to do with siblings. I usually find that we go from one extreme to the other. We ask too much or not enough. Some parents give too much attention to the special needs child thus neglecting the needs of the other children or their partner. There is a song titled, “The Life that has Chosen Me”. It sings of the dream child all parents expect and how their life is shattered when a special child arrives. It speaks of how much parents go through and how important it is that their family and friends accept the new member of their family. When Nick graduated from high school Mike, again, put us to the test of fair parenting. He said Nick ought to move out. I was aghast. Mike insisted it would be good for Nick and good for us, after all Mike himself left to live on campus, didn’t he? “Yes,” I said, “but, but…surely you understand that Nick has different, much higher needs?” “Well”, my son declared, “you can take care of his needs in his own place, can’t you? You should at least give it a try.” I believe my son, Mike, was older than his years. We followed his advice at a great financial cost. We could not really afford it and our retirement savings went into this venture but we were willing to try. I went and hired a live-in-caregiver to live with Nick and we looked in our neighbourhood for a wheelchair accessible two bedroom apartment. I could let my special child go but he had to live as close as possible. We were lucky. There was a vacancy ten blocks away from our place. It was a lot of work to organize Nick’s life away from us. It has been a year now and my husband and myself have been happy empty nesters ever since! Nicholas comes to our place once or twice a week and we go to his. If someone were to tell us that Nick was coming back to live with us we would say, “No way!” If he is sick I will go to his place, stay there and cook him chicken soup. I shall do whatever every loving mother would do if her 21 year old is sick, but Nick is not moving back in with us. Yes, he is very vulnerable but parents can not protect their children forever. We need to put safeguards in place as best we can and trust our community and society for the rest. In spite of Nick’s disabilities, he has as normal a life as can be with friends, activities and outreach volunteer work. I truly believe that most parents would wish their child with special needs to have a normal life outside the family home. This is a dream that requires effort, creativity and adequate support from government, but it can come true.

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CPABC NEWS . Spring 2010

SNOW TIRES!
PRINTED, WITH PERMISSION, FROM GIZMO NEWSLETTER WINTER 2010

POWERCHAIR ROTO-TILLER WHEELS.

Snow is a constant problem for wheelchair users. Even after roads and pathways have supposedly been cleared, there are great mounds of ice and slush to negotiate. Wheelchairs just were not designed to handle obstacles like this, until London, ON, Tetra volunteer Joe Ruitenbeek came along. He had been approached by a client who had had enough of feeling trapped indoors every time it snowed—and it snows a fair deal in that part of the world—because his power chair could not make it across neighbourhood sidewalks. Inventors have created offroad power chairs complete with caterpillar tracks, but the client, Bill Birch, required a machine that was equally at home on carpets and hardwood floors. What he needed was snow tires, said Ruitenbeek. His first attempt was to add extra tread to the existing

tires on Birch’s mid-wheel drive Jazzy wheelchair. “I took extra tires and cut strips out, so they looked like a heavy rubber tire, and tried to put them over the existing tires,” he explained. “But I just couldn’t get it to stretch enough to go over the original tire. “But I found a fellow that handles an array of tires. I found a tire with a heavy tread, designed for a roto-tiller.” The new tires increased the overall wheel diameter by three inches. This, of course, raised the chair one-and-a-half inches off the ground, requiring Ruitenbeek to move the fenders and lower the front antitip wheels by the same amount. Do you need to overcome a barrier? For a TETRA chapter near you contact 604-688-6464 (Vancouver)/1-877-6888762 Toll Free or email info@tetrasociety.org., www.TetraSociety.org

CHECK THIS OUT!
LEGAL INFORMATION MADE EASY
Grab a coffee and get acquainted with the wealth of information provided at www.clicklaw.bc.ca. You will be amazed with all you can access from this one website: application guides for various services, information sheets, free on-line legal courses, workshops and speaker events as well as a listing of toll free numbers for whom to call for law related help and an advocate directory for all of BC! Wow. To understand your rights and solve legal problems go to the ‘Solve Problems’ tab. Topics here include: your money, family, daily life, safety and community. Under ‘Community’ you will find a whole range of disability issues including information on medical care, disability benefits, income assistance, life planning and PWD. So much to explore! Have fun.

PERSONAL MOTIVATOR AT YOUR SERVICE PROVINCE WIDE
Do you need a little nudge to get you moving towards some healthy lifestyle changes? Peer Coaches work with participants, just like you, to set realistic and achievable goals in areas such as, but not limited to, healthy nutrition and weight management, set up of a physical activity plan and smoking reduction and cessation. Coaches help participants identify their own health goals and then offer encouragement and support. This free BC-wide service is offered by telephone, over a period of up to six coaching sessions, capped at one hour or less. This program does not cover anxiety or depression issues, alcohol or drug use, or employment/career coaching. If you are 19 years or older, and are ready to make some positive behaviour changes in your life, phone 604-630-5862, 1-888-742-1772 or email connect@ patientvoices.ca.

COMING SOON SUPPORT WORKER CENTRAL
Keep your eyes peeled for the launch of a new province wide initiative connecting freelance support workers with individuals. Once up and running, supportworkercentral.com will allow individuals to post job profiles enabling them to connect with available support workers within their community. For more information go to www.supportworkercentral.com.

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LEISURE . Spring 2010

TO RAISE . TO REACH . TO REALIZE

CRUISING – WHY NOT?
IT’S A VERY ACCESSIBLE WAY TO TRAVEL
Ever thought about going for a cruise? What’s holding you back? To sign up for your FREE newsletter: Cruising for Special Needs Travelers, go to www.snailspacetravel.com.

CHALLENGER BASEBALL
WHERE EVERYONE HAS FUN!
BURNABY

PARKING MOBILITY
BY CAMPBELL MACDONALD, PRESIDENT, PARKING MOBILITY
Imagine being able

Ages: Participants: Background:

• • • • •

• •

to report and help enforce when someone parks illegally in accessible parking to find disabled parking when you need it and to identify where cities should add new accessible parking spots

Team photos: Uniforms: Smiles: Contact: Email:

• • • • •

6 -18 cognitively and physically disabled kids no score is kept able-bodied buddies assigned to each participant buddies assist challenger players by pushing wheel chairs around the base path, holding and swinging the bat etc. a must of course! plentiful Tom Halford 604-219-6669 BurnabyChallengerBaseball@gmail.com

Parking Mobility does all this. It is a new web based and mobile application from Vancouver, BC (for iPhone and Blackberry) which can be used in any municipality in the world. Parking Mobility allows citizens to report when someone has parked without a disability placard. This information is then shared with participating municipalities who send a ticket to the owner of the vehicle based on the evidence of the infraction. Users can also suggest where parking spots should be added so that cities can better plan for the future. This is a win for the municipality with more accessibility and more revenue. It’s also a win for the community members as they are engaged in making their city more accessible and sustainable. Parking Mobility is also a social enterprise with profits going to support disabled community groups where the product is used. For more information, please contact: info@parkingmobility.com or visit www.parkingmobility.com

RICHMOND The 2010 World Wheelchair Rugby Championships will be coming to Richmond’s Olympic Oval Sept. 17 – 26th. For more information go to www.2010wwrc.com.

MARK YOUR CALENDARS

YOU ARE INVITED LEISURE FAIR AT
SUNNY HILL HEALTH CENTRE
Date: Time: Place: Info: Email:
VANCOUVER

Thursday, May 6, 2010 6:30 p.m. to 8:30 p.m. 3644 Slocan St., Vancouver Gym – 2nd floor - entry via 21st Ave. Terry Schenkel - 604-233-5433 tschenkel@develop.bc.ca

This event is a great opportunity for you to discover the many recreation resources and leisure opportunities available for children and youth. Don’t miss out!

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CPABC . Spring 2010

CAMP IS JUST AROUND THE CORNER
Camper applications, for BC Easter Seals Camps, will be available April 6, 2010. The first camps will be starting the week of June 25th. Go to www.eastersealscamps.ca for camp dates, applications and more information or phone 604-873-1865 (Vancouver area) or 1-800-8184483 (toll free Canada). Emails can be sent to camp@lionsbc.ca.

ATTENTION
OLDER ADULTS

MOVE FOR LIFE
Get moving and feel great! Easy to do two-minute activity routines will put the zing back into your life. Whether you use a walker, chair, cane or are free standing you can keep your body strong and healthy with the warm-up, cardio and stretch exercises offered in this upbeat DVD offered free of charge to all older BC residents. To order your copy of “Move for Life” phone toll free 1-800-465-4911, Victoria area - 1-250-952-1742 or E-mail actnow@gov.bc.ca. To view portions of the DVD on line go to www. actnowbc.ca/seniors/move_for_life_dvd. Copies are also available through your local library.

the

CPABC BOARD MEMBERS
CRAIG LANGSTON President TRISH MCKAY Vice President JONN OLLDYM Treasurer RONALD BLACKMORE LIZ CALDER TERREANE DERRICK LES EBL DANIELLE GUERTIN TONY KRUSE

CPABC STAFF
FERI DEHDAR Director of Programs & TAMMY VAN DER KAMP Family & Individual Support Worker WENDY HAWRYZKI

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801-409 Granville St. Vancouver, BC V6C 1T2 Phone: 604.408.9484 Toll-Free (Enquiry CP): 1.800.663.0004 Fax: 604.408.9489 Email: info@bccerebralpalsy.com 9 AM to 5PM, Monday to Thursday

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