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inside this


May the season bring you the music of laughter, the warmth of friendship and love.


C e r e b r a l P a l s y As sociation of British Columbia

Fall 2009


* Our organization is 55 years old. It began in February 1954 by a concerned group of parents of children with CP. Today we have a membership of 900. * We provide services to about 12,000 people living with CP in British Columbia. Adding family members to this number means that there are over 36,000 people in our province whose lives are directly touched by Cerebral Palsy. In addition, the 77 Infant and Child Development Centres, 1700 public schools libraries and 70 public libraries across BC regularly request our literature and resource materials. * In 2009 the CPABC awarded 19 bursaries, at $1000 each, to nineteen students living with CP to assist with post-secondary education. * In 2009, CPABC provided 7 children and adults with $4038 to attend a spe-

cial needs camp. * CPABC contributed $500 to Agur Lake Camp project. The camp will be unique in BC providing fun, respite and support for children with special needs and their families. * Through our affiliation with United Cerebral Palsy, CPABC can access a wealth of information on all aspects of CP and pass it along to those who contact us for information and support and to those who attend our presentations. * In the past year, CPABC provided presentations to children from kindergarten through high school at more than 18 different schools on topics ranging from inclusion to etiology, and from providing the motivation to succeed despite challenges to answering questions about CP and the aging process. * Our website provides general information about Cerebral Palsy. It links people with others living with CP and

with groups supporting those with Cerebral Palsy. Since January 2009 our website has received over 296,000 hits! * Our North American toll-free number 1-800-663-0004 is used for parent and individual support, information, resources, and referrals. * We receive requests for information from as far away as Nepal, Poland, Mexico, Australia, France, Iran, United States, India, and the rest of Canada. * Our organization has been part of the Medical Dental Community Advisory Committee at the UBC Faculty of Medicine, where we lend our expertise and provide input on disability issues for the university’s medical and dental curricula. * Our library contains books and videos concerning Cerebral Palsy that are useful to parents, professionals, and those living with CP. We acquire new books and DVDs each year and lend out resources to British Columbians
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CPABC NEWS . Fall 2009
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for free. * Free copies of the revised Guide to CP booklet are available on request and downloadable from our website. Living with CP manual is available at no cost to parents and those living with CP and students. Putting the Puzzle Together is our newest publication. Its focus is understanding various needs and making inclusion work in today’s classroom. A copy can be ordered for $30 plus postage. * We operate our organization with three part-time staff: Feri Dehdar (Director of Programs and Administration), Tammy van der Kamp (Family and Individual Support Worker) and Wendy Hawryzki (Administrative Assistant). Times of growth and change are upon us. Our ability to grow and serve people with CP is significantly affected by funding cutbacks. We can always use additional funds to continue our services. Think of us as you draw up your Christmas list. Any size donation allows us to purchase books, print our booklets, update manuals, maintain our toll-free inquiry line, and continue our other services. Please see the donation form on the last page. Thank you very much for your support!

2009 Smmer - POWER TO BE - Kayaking Trip

Dear CPABC, I am writing on behalf of my son, Braiden, to thank the Cerebral Palsy Association for their summer camp subsidy. As a result, Braiden was able to enjoy a variety of summer fun activities and many new experiences. Braiden is an energetic 10 year old who loves to be outdoors and experience new adventures. His greatest challenge to date, due to his physical limitations and social difficulties, is being able to participate in typical camps or programs. Braiden is not in a wheelchair. He has an adapted stroller and walking sticks. Braiden has cortical visual impairments. This complicates his motor challenges but he doesn’t let this stop him. He loves to try everything from trails, ocean exploring to kayaking. It may take him longer, and he may not last as long as his peers, but he goes for it! Braiden was able to take part in the summer Power to Be Day Camps this year where the staff understood and respected the full scope of his needs physical, emotional and social. They

allowed him to be himself and not just a spectator. They understood that each child is unique and special. That is refreshing as a parent. The camp explored a variety of locations and experiences throughout Victoria which is great for Braiden who can get bored easily! Braiden’s love for the water had him exploring Witty’s Lagoon, Camp Barnard, and the Gorge Waterway. He had the opportunity to see and touch the sea life at Witty’s Lagoon, sit by a campfire at Camp Barnard and go kayaking numerous times! It was so great to hear all the stories from his day adventures with Power to Be. Our son developed patience, turn taking skills, made new friends and enjoyed the nature around him. He was accepted as part of a group – but best of all he was happy! Braiden looks forward to next summer when he hopes to continue to explore nature and challenge himself in other exciting ways in the community. Thank you so much again. It is great to see Braiden smile, laugh and just be happy! Sincerely, Linda Gilmour


CPABC extends sincere sympathy to all who have lost a loved one. We thank you for designating CPABC as the charity of choice to receive In Memoriam gifts. All contributions are truly appreciated and acknowledged.

CPABC would like to THANK everyone who donates their time and energy to our Association. Board and office volunteers make a vital contribution and we acknowledge the countless ways in which each volunteer helps our members, our organization and our causes.


Investing in our Future
This fall eight young people had smiles on their faces when they learned that they were to each receive $1,000 from the Cerebral Palsy Association towards the cost of their education. Eighteen year old, James Jordan of Saanichton will be attending Trinity Western University in Langley where he has enrolled in the study of Human Kinetics with the goal of becoming a physical education teacher or athletic therapist - a good choice considering his life-long love of sports. “Having a disability has been a blessing to me,” says James, “as it has taught me how to do things in unique ways.” Julia Halipchuck, of Princeton, has been saving towards her education from a young age and has now completed her first year of Engineering at UBC-Okanogan. She hopes to pursue a career in structural engineering and later architecture. Julia said that living in Kelowna and attending University was quite an adjustment from her small town, high school experience. One instructor said of Julia, “Her positive nature is infectious.” This is the second year that Julia has received a bursary from us. This is also the second time that 26 year old Manpreet Virid, of Vancouver, has been one of our bursary recipients. A reference noted that, “Manpreet has a refreshingly positive outlook on life and the future” and that “she seems to let daily frustrations and challenges pass her by without dwelling on them or letting them get her down.” With the goal of becoming a social worker, this is a good outlook and attitude to have. Manpreet is presently studying at UBC. Twenty year old Aaron Yeo of Coquitlam is described as, “a hard working student who always showed a positive attitude in all aspects of his life.” He is


“a model of determination and what can be achieved when we don’t give up.” Presently Aaron is studying digital animation at BCIT in Burnaby. His goal is to get employment in the new Pixar Studio in Vancouver or with Electronic Arts in Burnaby. Aaron wrote, “I plan to enjoy every moment of my studies and look to a brighter future despite my challenges. I know I can, by the grace of God.” You will find 20 year old Daman Kandola, of Prince George, hard at work at the University of Northern BC. “I wish to pursue a career in medicine and eventually practice with special needs children.” This young woman has been an active community volunteer with the local hospital, Heart & Stroke Foundation, Cancer Society and YMCA! In the little free time she does find, she enjoys walking, reading and listening to music. Twenty-three year old Szu Min (Amy) Shen, moved to Vancouver from her native Taiwan in 2004 and is currently enrolled in the Early Childhood Education Program at MTI Community College in Burnaby. “Since I have started the program”, Szu Min states, “ I am much happier than before because I am learning what I like and I am having success in this course.” She loves writing stories, swimming and traveling and says, “I always feel happy when I get together with children and I always want to give them the best childhood memories.” Working with children will definitely give you plenty of opportunities to create happy memories for those under your care Szu Min! With two degrees already under her belt, 20 year old Sarah Gerow of Kamloops has enrolled in the Advanced Diploma in GIS Applications at Vancouver Island University in Nanaimo. She is working on her studies through

the distance education program so that she can earn money towards her studies and fulfill family commitments. Sarah writes, “I am unsure what my future plans are, but I am hoping to find a specialty once I am in the GIS Program.” Sarah was grateful for the bursary she received from us last year and said, “Last year’s bursary enabled me to not have to take on additional days at work allowing me to focus more on my studies.” At the moment 20 year old Angela Schuster of Langley is enrolled in a two–year program at Kwantlen Polytechnic University called, Access Programs for People with Disabilities. This is a job preparation course that will help Angela find her strengths which she hopes to one day use in the tourism industry. This busy young woman loves sports and has participated in therapeutic horse back riding, track and field, wheel chair racing, disabled skiing and swimming and is the recipient of silver and gold medals from the disability games. The CPABC wishes all this year’s Tanabe Bursary recipients the best in their future endeavours. Congratulations to you all! CPABC would like to thank Kinsmen Foundation for their generous financial contribution to our Bursary Program.

Sarah Gerow Manpreet Virdi


CPABC NEWS . Fall 2009

The Need for Hip Surveillance in Children with CP
The Cerebral Palsy Association of BC was pleased to welcome Dr. Kashore Malpuri to this year’s Annual General Meeting in September 2009. Dr. Malpuri is a clinical Instructor in Pediatric Orthopedics at UBC, who has a special interest in gait and hip abnormalities associated with neuromuscular disorders. The evening’s presentation highlighted the importance of early detection of hip problems in children with cp. Hip problems are the second most common musculoskeletal deformity associated with cp in children. About one third of all children with cp develop hip displacement. Hip displacement is serious – it can involve pain, contractures, problems with sitting, standing and walking, fractures, skin ulcerations, difficulty with perineal care, pelvic obliquity, and scoliosis. The risk of developing hip displacement is directly related to gross motor function, as determined by the Gross Motor Functional Scale Classification (GMFSC) used by physicians and other health care professionals. Early detection of hip problems is important because once a hip reaches a certain stage of migration, hip displacement is almost certainly inevitable, and reconstruction becomes impossible; that is where Hip Surveillance comes in. Hip Surveillance is the process of identifying and monitoring the critical early indicators of progressive hip displacement. Hip Surveil-

lance progress depends on patient age, x-rays, clinical assessment, and the patient’s GMFCS level. Many effective treatment and management options, including Botox injections, soft tissue procedure, and surgery, dramatically reduce the incidence of hip displacement – but in order to make the best use of these procedures, hip migration needs to be caught before it progresses to hip displacement. In a nutshell, the sooner the problems are detected, the less often drastic interventions become necessary. A Swedish study looked at 206 kids with cp, born between 1992 and 1997, who took part in a regular hip surveillance program. None of them developed hip displacement. And of 48 children who moved into the area during the study, and subsequently took part in the program, none developed hip displacement. Clearly, the preventive measures taken due to Hip Surveillance resulted in a dramatic reduction in hip displacement among those children. It’s clear that early diagnosis and treatment minimizes the need and extent of further surgery. And early intervention usually involves simpler procedures, lower hospital costs, and a lower likelihood of complications. Parents are their children’s strongest advocates: the better informed they are about the prevalence of hip problems, and the effectiveness of Hip Surveillance, the better their child’s chances of avoiding hip displacement associated with cp. It’s important that parents work together with physicians, physiotherapists, and other health-care professionals to make Hip Surveillance a regular part of the child’s health care

regimen. If you are interested in viewing Dr. Malpuri’s presentation, in power point format, please contact our office at An ounce of prevention is worth a pound of cure. Dr. Mulpuri is a Clinical Instructor in Pediatric Orthopaedics, Department of Orthopaedics, University of British Columbia. He recently completed an MSc in Epidemiology at the University of British Columbia and is involved in a wide range of research projects in paediatric orthopaedics. Dr. Mulpuri is most interested in studying the clinical outcomes of orthopaedic treatment so that improvements in treatments will continue to be made. References: - The Gross Motor Functional Scale Classification (GMFSC) http://www. sources/GMFCS.pdf - Dr. Mulpuri html



Providing education about cerebral palsy and other disability issues is part of my job as Family & Individual Support Worker here at CPABC. Getting elementary school kids to recognize that disability is just part of human diversity can be a challenge in many ways, from the simple logistics of transportation to and from the school, to designing effective lesson plans that keep the students engaged. It takes a certain degree of adroitness to manage the sometimes awkward comments and questions thrown at you by a ten year old, or to handle an antsy kindergarten class, but my elementary school Disability Awareness Presentations have become a favourite aspect of my job. On the day of a presentation the chaos typically begins at about 7:00 am with the arrival of my assistant, Dianna. Pacific Assistance Dog (PADS), Breeze the Golden Retriever, knows that something is up because I usually sleep until 7:30 am; so she’s excited – dancing around my bed, tail madly propelling, singing her morning growlies. These are not the growls of an angry or fearful dog, but the growls of a dog in happy anticipation of spending the morning with lots of children. I get up, we rush to shower, dress, take Breeze out for her morning constitutional, then breakfast for both of us – if there’s enough time – I can’t gobble mine down quite as quickly as Breeze can. Into our jackets, all three of us – but wait – is the prop suitcase ready? Is all our demonstration equipment there: the wheelchair mounted camera holder? The cup holder? Does the big stuffed monkey have her purple sweater unbuttoned? Are there enough oven mitts? What about evaluation forms? Do we have an apple and a banana for our ‘similar and different’ demonstration? Let’s not fordred-year-old inner city school, with two classes seated on the stairs going up, another two on the stairs going down, and a couple of teachers balanced on the banisters. At another school – a nice modern one – the grade five teacher was a former Occupational Therapist who should have known better. She assured us of her classroom’s accessibility but when we arrived, we found a raised threshold at her classroom’s outside door a threshold that would have stopped my power chair cold. Fortunately, we had rented a van with a ramp that day, which our driver deployed neatly into the classroom. It was a regal entrance. These adventures and misadventures have become a part of our presentations - some highlighting physical barriers, and some highlighting attitudinal barriers that still exist for people who have disabilities. Typically, we’ll talk to four classes at a time - that’s 120 kids. If it’s a primary presentation, that’s 120 kids between the ages of five and eight. I start by providing education on service animal etiquette. It’s amazing how many people don’t get the importance of sticking to working-dog protocol. The adults especially – and these are teachers and principals – often need to be reminded that no matter how adorable PADS Service Dog Breeze looks - and she does look adorable – she is working, and NO, YOU CAN’T PET HER! After that, we try to get the children thinking about all the ways we human beings are the same, and all the ways we are different. Kids understand that we humans come in a variety of colours. They know we come in all shapes and sizes. They know – but they still laugh when I say “tall people, short people, skinny people, fat peo
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get treats and poop bags for Breeze. And did we ever actually ask whether the school is wheelchair accessible when we booked this presentation? I guess we’ll find out when we get there… So out the door we fly, black cat Rocket blinking in bewilderment in the dust of our exit, Dianna scrambling behind with prop suitcase and umbrella in tow. We’re ready – but where’s the HandyDART? We wait out the window – you all know what I mean – then phone to find out where the heck my bus is. That’s five minutes wasted following the automated voice prompts, only to discover there’s nothing we can do. They’re late, so we might be late too; especially if there are other people sharing our HandyDART, and we have to zigzag back and forth across town a couple of times before arriving at our school. Luckily, we always allow enough time for these eventualities, even though that means we might have half an hour or more to kill once we get there. Wheelchair accessibility – or the lack of it – is something we work into our presentation. We’ve gone into schools where we were assured that I’d have no problem getting in, only to discover the principal had forgotten that inconvenient set of stairs down to the gym. We did one presentation perched on the landing between floors of a hun


CPABC NEWS . Fall 2009
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ple.” I’m not sure why that’s so funny, but it is. It’s not a big step from there to “people with disabilities are just people, too.” I go on to share some stories about how similar my life is to their parents’ lives, even though I use a wheelchair and a dog. I point out that every human in the world needs help. Every human uses tools, whether that’s eyeglasses or dentures or pencils. When we demonstrate some of my prop tools, my assistant gets the kids to guess what my chair mounted digital camera holder is for. We’ve received some wonderful guesses: toothbrush holder, can opener, pencil sharpener, gaming joystick. I’m surprised nobody has blurted out ‘nose picker’! Of course Breeze is the most popular ‘tool’ in my arsenal; she’s the one they’d most like to see demonstrated! My other tools are pretty cool, but having a dog who can help me – well, that elevates me to stardom. Every kid in every elementary school wants

to have a dog like Breeze! Every school has a different ambiance. Some schools are so polite you could hear a pin drop during our presentation, some seem almost apathetic, and others could clearly use a little discipline – like the gym full of minimonkeys just itching to poke Breeze’s eyes out. The empathy-building exercise gets three little helpers up to try out having a mobility impairment. They don the oven mitts, some with swaggering confidence and others with an air of solemn commitment. And then they take turns trying to button up the purple sweater on the stuffed monkey. Nobody has been able to do it yet, and it gets the point across nicely. We finish off every presentation with a fifteen minute question period, where I am committed to answering anything the kids throw our way. We finally had to stipulate that questions about Breeze would have to wait for the final five minutes. I’ve been asked “Do you pee out of your ear?” ‘”Are you mad at God?” “Does Breeze do tricks?” “How old are you?” “Is Di-

anna tired?” (Because she has white hair, and she sits beside me during the presentation.) “Do you eat your vegetables?” (Because of course, if I’d eaten my vegetables I’d be able to walk!) I have to be prepared to field any question, no matter how ridiculous or awkward it might seem. Humour aside, I think we’ve made our point when a group who avoided eye contact with me at the start of our show is asking thoughtful and personal questions by the end. Of course I still get ‘third person syndrome’ from time to time – when a child addresses his question to Dianna rather than directly to me, but I gently correct him, and he gets it. That’s why I believe CPABC’s Elementary School Presentation program is so important, and why I so enjoy doing it.

The Meeting


to our lending library

Positive Steps to a New You!
Gentle Exercise – Armchair Fitness – DVD – 30 minutes You can’t help but tap your toes and move your arms when you press the play button for this DVD. Teacher Betty Switkes will have you playing in an orchestra, visiting the circus and doing a seated dance routine in this full-body gentle work-out intended for persons with limited strength and range of motion. Stress Relief – Healing with Dr. Russ Greenfield – DVD – 80 minutes Take positive steps towards preventing and dealing with stress. There are twenty three topics on this DVD including healthy cooking, tai-chi, and yoga. To borrow either of these resources, give us a call at 604.408.9484, toll free 1.800.663.0004 or email We will mail your DVD, free of charge, for a two week loan period.


The Cerebral Palsy Association of BC, in partnership with Western Society for Children, is considering starting a support group for adults in the New Year. We’d like to meet in a variety of locations around the Lower Mainland, to address a variety of topics. So we want to hear from YOU! If you are interested, let us know what kinds of topics you would like to see covered. Some examples: Raising a child with a disability; Ageing and cerebral palsy; Registered Disability Savings Plan (RDSP) explained; Access issues; Equipment funding de-mystified; Dealing with stress Make it your own! Tell us what you want. Call the Cerebral Palsy Association of BC at 604-408-9484 and talk to either Feri or Tammy, or email your ideas to


More Camp Thank You’s Come In!
From all reports, it appears camp was a roaring success this year. Thanks goes out to the Hamber and the F.K. Morrow Foundations for their generous grants that made it possible for the Cerebral Palsy Association to help seven students with camp associated fees. We are pleased to report that a total payout of $4,038.70 was made. Shayne, 18, of North Vancouver described the YES Camp, at Lake Cowichan, as, “Magnificent!” He said he learned to be more open minded and had an awesome time learning leadership skills. Shayne wrote, “This camp is very accepting of my disability. The people here don’t judge me based on how I look or act. I can just be myself and for that I am thankful.” Rockridge Young Life Camp was home to 18 year old Jimmy Jordan of Saanichton. He wrote, “Camp was the most amazing week of my life. Unbelievable!!” Thirteen year old Angel, of Chilliwack, wrote that she was so busy at Zajac Ranch in Mission, horseback riding and zip lining, that she hardly spent any time in her wheelchair. “I am keeping my suitcase in my bedroom with some stuff packed in it because I want to go back to camp next summer.” There is nothing like being prepared Angela. We hope your summer wish comes true!


UCP Wheels for Humanity
What would life be like if you had to drag yourself by the elbows or bum scoot everywhere because your legs didn’t work? Could you go to school or even work? Roughly 120 million people with disabilities, in developing countries, need mobile chairs but due to economic circumstances will not be able to afford one. United Cerebral Palsy Wheels for Humanity is working to change that. Each year in their California warehouse approximately 226,000 pounds of solid waste is recycled by refurbishing used

“If you can’t walk a wheelchair is like a pair of wings”
wheelchairs to industry standards. Last year about 5,000 chairs were delivered to over 66 countries and were personally fitted, to their new owners, by a volunteer team of physical therapists, doctors and chair mechanics. “Owning a chair for the first time is like taking your first step”. Can you imagine? To learn more about this worthwhile work, and how you can make a difference, go to

Van Conversions & Mobility Products
Do you have a van that you would like converted to allow for wheelchair or scooter access? In the market for hand controls, wheelchair tie downs or used lifts? Give Sidewinder a call at their toll free number 888-266-2299. They have been specializing in mobility products since 1999 and would love to work with you to personalize your vehicle. If you would prefer a van that is already converted check

Think Spring!
out their website at where you will find a great selection of used vans for sale starting around $10,000. Sidewinder is located at 44658 Yale Road West in Chilliwack, 604-792-2082. Why not pay them a visit? New wheelchair accessible community garden opening in the spring of 2010. Where: on Templeton Drive and Franklin St., near Nanaimo and East Hastings Raised-bed plots available. Monthly get-togethers at the garden during the growing season. Interested? Phone Betty for more information 604-688-6464, ext. 106 or email


CPABC NEWS . Fall 2009
Now, more than ever before your membership will help to

Do you live in Victoria?
Did you know that you have a personal support centre right in your neighbourhood? The Victoria Disability Resource Centre assists adults with disabilities get information or personal supports from government, notfor-profit and private sector organizations. They can assist you with filling out paperwork, refer you to other organizations, help you find funding for equipment and devices and inform you on different programs and services you may qualify for. A $5 yearly membership will give you access to games and movie nights, potluck theme dinners, computer classes, workshops, art classes and peer support. For more information phone 250-595-0044 or email

“Realize equality in a diverse society!”
Become a Member today!

My choice:




Have a Comment Low Fee for TransLink? Counselling Service
You can contact TransLink’s Customer Relations Department with any suggestions, commendations or complaints with a new feedback form available at Once there, hit the “Customer Service-Contact Us” button found at top of the page and then “Customer Complaints and Comments” found down the left side of the screen. Online forms must be completed within 40 minutes or your session will end. Your information will not be saved. All information provided will be kept confidential. You will be contacted by a Customer Service Representative if more information is required. You can also contact Customer Service at 604-953-3040, Monday to Friday from 8 am to 4 pm, with any comments you may have.

Lower Mainland

Method o f Payment: I have enclosed a cheque payable to the CPABC or: Visa # Expiry Date Name on Card Today’s Date Email Signature Please mail to:

Living Systems Counselling is a notfor-profit counselling organization that offers services on a sliding fee scale, with fees as low as $10, depending on a client’s gross income, dependents and current circumstances. Offices are located on the North Shore, throughout Vancouver, Surrey and Langley. They have minimal to no waiting times. For more information phone 604-926-5496, email or go to If you are leaving a message about an appointment please indicate which area of the lower mainland you would prefer counselling. Also note if it’s okay to leave a message and if you may require a subsidy.
Wawanesa Haebler Construction Royal Canadian Legion Branch #60 Royal Canadian Legion Branch # 142 F. K. Morrow Foundation
Mr. & Mrs. P.A. Woodward’s Foundation

CPABC would like to thank the following for their generous financial contributions: Cerebral Palsy Association members and individual donors

Anbrook Industries Ltd. Dodwell Realty Ltd.
BMO Employees Charitable Foundation

BC Hydro Employees’ Community Services’ Fund Royal Canadian Legion Branch # 40 Suncor Energy Foundation Donald J. Renaud Law Corporation

Telus Dollars for Dollars Scotia Bank Wealth Management South Coast Plumbing and Heating The Hamber Foundation North Delta Lions Club Kayee Society David Gregory Ltd. Borden Ladner Gervais

Kinsmen Foundation



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


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: 9 AM to 5PM, Monday to Thursday

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