Cerebral Palsy week in Canada June 2nd to 8th.

Please send clippings of newsletter articles about this week to the office.

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Cerebral Palsy Association of British Columbia winter 2008

By Jonn Olldym, Board Member

Its January in Prince George. Today, a winter storm blew through the city with winds gusting at 120 km/hour. Fallen trees have caused power outages throughout most of the day. Its now 6:00pm, and B.C. Hydro estimates that it will take at least 8 24 hours to restore power to the city. The temperature outside is -15 Celsius. The roads are icy and have become impassible and transit has shutdown. Home support workers are unable to reach their clients. This scenario was presented at a workshop, on February 20, 2008, hosted by the Emergency Planning for People with Disabilities Committee. This workshop was held at the Wosk Center for Dialogue in Vancouver and was the second of three organized by this committee to look at emergency planning for people with disabilities. How prepared are you? How would you better prepare the people in the following scenarios? Pick one or more and email info@bccerebralpalsy.com with your response(s). The best of these will be printed in the next edition of The Roundtable. Mary recently started a chemotherapy regime of four very powerful antiretroviral drugs. At present, she does not exhibit any signs of an opportunistic infection (Acquired Immune Deficiency Syndrome or AIDS). Mary has a dependent, nursing child. As breastfeeding would infect her child, Mary uses formula. She lives on her own in an apartment and is not prepared for any kind of an emergency. James is completely paralyzed below the neck area. He can only breathe on his own for about two hours without a ventilator. He is mobile only when he able to use his electric wheelchair, which he operates by puffing and sipping through a straw. He lives on his own in an apartment, and shares his attendant with others in the building who have disabilities. James can call his attendant to help him with his care by using a special telephone that dials when he operates with a head (pillow) switch. The attendant is able to come within a half an hour period. He manages all his care and is very independent. In terms of emergency preparedness, James has an emergency kit and supplies for 72 hours. The building has an evacuation plan in place in case of fire, but does not have emergency plans for any other kind of disaster. Beth, a 35 year old woman with cerebral palsy, has lived a fairly sheltered life. She lives alone and is unable to walk. Beth uses a power wheelchair; however is not yet confident maneuvering in crowds and tight spaces. She receives daily home care and uses a catheter and leg bag. Beth also has some hearing loss and uses a hearing aid. She relies heavily on the support of her parents, who live in the same apartment building. During the emergency, Beth has become separated from her parents and is in a state of panic worrying about where they are. Beth was not prepared in any way for this emergency. What could she have done? How could Mary, James and Beth been more prepared for this emergency? Please Send in your responses to our email info@bccerebralpalsy.com or mail to 801409 Granville Street, Vancouver, BC V6C 1T2

Please recycle this Roundtable by passing it along to someone else!

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Cerebral Palsy Association of British Columbia winter 20 08

CPABC news

New Childrens Books!

Do you want some positive bedtime reading for your young ones at home? Check out these four new titles in our book lending library: A Frog Thing By Eric Drachman Frank was a frog and he wanted to fly even though flying wasnt a frog thing to do. The message of this book is to do well at the things you can do, and not to be sad over things that arent possible. As an added bonus this book comes with a CD of the story complete with sound affects! Ages 4 and up Grunt By John Richardson Teased by his older siblings about his appearance and tiny squeal, a little piggy finds acceptance with an equally odd-looking companion who teaches him to celebrate his differences and recognize that others will appreciate his uniqueness, too. Ages 5 and up The Magically Mysterious Adventures of Noelle the Bulldog By Gloria Estefan This beautifully written and illustrated book teaches children the important lesson that everyone has a special gift and fits into the world somewhere. A CD with Noelles Song, Been Wishin is included with this book. Ages 7 and up Wheel Rolling Along The Story of Taylor and His Wheelchair By Jamee Riggio Heelan Taylor has cerebral palsy which his twin brother does not. This triumphant story offers a valuable look at both adjusting to a wheelchair and facing physical limitations with boundless energy and determination. Ages 6 and up Books are mailed out on a two week loan basis. To see a full listing of books available see our website at www.bccerebralpalsy.com, or phone us at (604) 408-9484, toll free 1-800-663-0004 to discuss your needs.

VANCOUVER GIRL GUIDE #4 TROOP PRESENTATION

On January 15, 2008, Tammy and I met with the #4 Girl Guide Troop, Vancouver. We met at General Gordon Elementary School in Kitsilano, where the Guides and their leaders invited us to talk about disability issues. I really enjoy doing these kinds of educational presentations, as they give me an opportunity to show off some of my skills as a PADS Assistance Dog and also give our audience a glimpse of how a person with a disability lives. I am certainly the most interesting example of Tammys adaptive equipment! Tammy starts by introducing herself, her personal assistant and me I sit pretty until its my time to shine - and then she shares some of her experiences about what it is like to live with a disability. I like it when she tells the funny stories. She also talks to the kids about how important it is to see the person with a disability as a PERSON first and to be aware first of common humanity, and the things shared by people everywhere. She talks about differences too, but shows disability as yet another aspect of diversity. Then she educates the children about cerebral palsy, and the some of the challenges it can bring. She demonstrates this by showing how she uses her adapted cup holder and camera tripod to enjoy her favorite activities of drinking a cup of hot chocolate at Starbucks and photography. Then its my time to shine. I demonstrate how I am used as an adaptive tool to assist Tammy retrieve an item from the floor and help her take off her sweater. The kids are always so amazed. After this demonstration, Tammy gives the audience the opportunity to experience what it might be like to live with a disability through empathy building exercises. She gives the children oven mitts to wear which restricts their ability to use their hands and fingers and then has them do an activity that requires finger dexterity such as writing, buttoning up their jacket, or operating their Ipod within a time limit. After this activity, Tammy asks questions about the task and whether they found it easy or hard. She also generates discussion around other ways in which we adapt and perform activities in our daily lives p ag e 2 and in what ways we can support people with disabilities at school and in the community. Finally Tammy gives the children an opportunity to ask questions about the presentation. The kids want to know about me and the PADS program as well as more questions about Tammy and her experiences living with cp. It is always so much fun! Next month we are doing presentations in Langley and Delta.

Submitted by Breeze

W Woof oo f

Cerebral Palsy Association of BC Tanabe Bursary

The Cerebral Palsy Association of BC proudly offers eight bursaries of $1,000 each, to any eligible student 18 years and older, with CP, that is planning to attend an institution of higher learning in the following year. Please advise any students, with Cerebral Palsy, of the availability of these funds and note that even if a student has been awarded monies through this fund before, they are still eligible to apply. You may check the criteria by visiting www.bccerebralpalsy.com/services.htm Applications must be postmarked no later than June 13th, 2008. Students need to submit a cover letter along with their required documents including name, address, phone number and email address (if available). You may mail, fax or email your application to CPABC attention Bursary Committee. Contact Feri at 604.408.9484 if you have any questions.

CPABC news
AGING WITH A DISABILITY: A DISCUSSION
On January 10th, 2008, Tammy van der Kamp participated in a roundtable forum on aging with a disability, hosted by the British Columbia Paraplegic Association. The discussion was the brainchild of the Canadian Centre on Disability Studies, in partnership with advisory committees from here in BC, as well as Manitoba and Nova Scotia. The purpose of this research project is to look at the needs, gaps, and good practice models in care-giving and supports, transportation, and housing for people with disabilities as they age. It is this kind of research that will eventually lead to new models of service delivery, community design, and supports. Some important questions were addressed by the group: 1. What makes a community desirable to live and grow older in? 2. What distinguishing factors, if any, separate a disability independent living model of supports from a seniors health care model? 3. Do the relevant agencies and support services from the two sectors (aging and disability) actually communicate with each other? These are just a few of the issues aired at this meeting. For more information, visit the project website at www.agingwithdisabilities.com

SNIFFIN FOR SANTA

From the desk of Breeze, PADS Assistance Dog
It was an early start for us November 25, 2007. That Sunday morning dawned clear and cold, perfect weather for Rogers Santa Clause Parade through Downtown Vancouver. I knew something was up when Tammy (my handler) dressed me in a goofy red and green cape festooned with jingle bells, over my usual PADS working vest. My nerves jangled with every jingling step we took to the Sky Train Station. The trains were crammed to overflowing with humans of every description, which made it much more difficult to keep my mind on my work. So many men! So many children! So many people noticing how adorable I was in my Christmas finery! It was hard to focus, but I did my best. I was, after all, not only representing PADS in the parade, but also setting an example for all the PADS freshman puppies who were also in attendance It was a c-c-c-cold morning! I could tell Tammy was c-c-c-cold, too, because she was grumpy, and wouldnt let me warm her up with a my lap hug. We had to wait for a long time outdoors, along with many other parade entries you cant just start a mile-long march all at once, especially when some entries have four feet, some two, some are cars, some trucks, and others wheelchairs! The Parade was kick started from a Stanley Park tour trolley by Vancouver Mayor Sam Sullivan.

Wheelchair Sports

Go for it!

By the time our little entourage finally got going, the air was full of frenzied excitement I could smell it everywhere, along with horse and dog poop, of course. We followed bagpipes, high-school bands, some great big horses, lots of acrobats and floats, and some very serious police dogs. This was a Christmas Parade and in the spirit of giving, spectators donated $7,500.00 cash at special stations set up along the route, and 6,800 kilograms of food was collected. We marched past three hundred thousand people who were clearly excited and happy to see us but I could sense they were anticipating something even bigger. As we turned the final corner, I looked behind me and saw him, the Great Man Himself, in all his fat red and white glory Santa Clause. And I was glad Id been a good dog all year!

Conductive Education Fund

The CPABC has started a grant to help differ the costs of an individual, or family members seeking the benefits of Conductive Education. Non-profits and Associations offering Conductive Education can also access the grant. The fund for the grant is small right now but with the help of members and interested parties, it can grow to help families' access this much sought after specialized physical therapy. Please contact Feri for more information.

Starbucks Draw Winner 2008

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Congratulations to Taewon Kook of Burnaby, winner of a Starbucks gift card! Thank you to all of you who took the time to fill out our fall newsletter survey. Your comments are always welcome by phone at 604-408-9484 (Toll Free 1-800-6630004) or email info@bccerebralpalsy.com.

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Cerebral Palsy Association of British Columbia winter 20 08

parents

New Parent Discussion Group

Vancouver School District
When: First Tuesday of the Month 7:00-8:30 pm For: Parents of students with special needs in the Vancouver School System Agenda: Guest speakers will be brought in each month to address topics such as: Special education technology, how to access funding or find good summer programs Childcare: Limited childcare provided Locations: Contact Pat Neuman at 604-713-5213 or pneuman@vsb.bc.ca

Swings for Special Play Needs Low Cost Delivery to Your Door
Swing Platform
Lets people of all sizes swing without leaving the custom support of their wheelchairs

New Online Courses

Wills, Trusts and Estates Learn everything you need to know about how to set up your will, including the different types of trusts you may want to include to leave an inheritance for your child with a disability. You will also learn about the new Registered Disability Savings Plan. Course offered every other month starting in March 2008. Course takes 3-5 hours to complete. Home is Where the Heart is Explore the different home options available for your relative with a disability. This course comes with a downloadable practical guide and lots of inspiring ideas. First course will be offered in May 2008. For more information about these courses call the PLAN office at 604-439-9566 or email inquiries@plan.ca.

Vertical Swing Seat

Securely cradles the unsteady swinger-features adjustable upper torso support. Can be mounted indoors or out.

Accessible Play Units

International Play Co. is a local manufacturer (based in Langley) of indoor and outdoor play equipment. Their product does allow for disabled access, however, because all the units are commercial grade prices start around $8000. Check out some of their designs at www.iplayco.com and then give them a call at 604-882-1188 to see what sort of pricing you are looking at. According to the email we received, they are open to selling to individual homeowners.

Hammock Swing Seat

Gently holds children and adults up to 250 lbs. Heights and angles can all be adjusted to suite individual positioning needs.
For more information and current prices, contact The Dragonfly Toy Company at 1-800-308-2208 or www.dragonflytoys.com. Mailing address - 291 Yale Ave., Winnipeg, Manitoba, R3M 0L4 p ag e 4

Around

Messing

You are Invited!

Mark you Calendars for Upcoming Camp Open Houses Ever wondered what it would be like to send your child to an Easter Seal Camp? Go and find out. Open Houses: Aug. 10th, Sat., 11 am 3 pm Camp Winfield 21 kms outside Kelowna at 1790 Davidson Road Get in touch with nature at this peaceful 25 acre site featuring 60 foot evergreens and an open plateau. July 12th, Sat., 11am 3 pm Camp Squamish 45 kms north of Vancouver at the foot of Mount Garibaldi and the mouth of the Squamish River at 41015 Government Road This 33 acre site features endless grass fields and forested nature trails. Ahhhh.breathe in that fresh air.. July 13th, Sat., 11am 3 pm Camp Shawnigan 35 kms north of Victoria at 2180 East Shawnigan Lake Road - lakefront property, rolling hills and beautifully kept gardens. What more could you ask for? Camps are operated by the BC Lions Society and offer fun activities in a safe environment for children and youth. For more information call The BC Lions Society at 1-800-818-4483.

children

Swimming, Fitness and Dance!

Surrey
Adapted Swimming One-to-one support is provided. Children will be taught the Red Cross Program and progress at an individual rate. Programs at -Surrey Sport & Leisure Complex and Newton Wave Pool Adapted Fitness Program is designed for youth and adults with special needs who require assistance in learning and applying the principles of weight training. If one- to one -support is required, caregivers are asked to attend. Programs at Guildford Recreation Centre & Newton Wave Pool Weight Room Adapted Dance This fun course introduces kids to creative movements through acting, singing and of course lots of dancing. Programs at: Newton Recreation Centre To find out when registration for all of these programs begins call 604-501-5100

Indoor Fun for 2 to 7 Year Olds

Supplies: - Cheap shaving cream or hand lotion - A cookie tray - Towel to wipe off hands Set Up: - Squirt cream or lotion onto tray and swish it around to cover tray Suggestions for Play: 1. Be an artist! Draw pictures or make designs in the cream. 2. Make trails through the cream with a toy car. Fun! 3. Polish your fingernails or toenails with the lotion.

Adapted from Creative Play Activities for Children with Disabilities by Morris & Schultz

Easter Seal Camps

Summer Fun! Squamish, Winfield & Shawnigan

Summer is just around the corner and that means camping! The BC Lions Society operates three Easter Seal camps located throughout BC for children and youth. Registration is on a first-come first-serve basis so dont delay! Applications will be available on Monday, April 7th and medical forms at the beginning of March. Camps run from June 20th to Aug. 17th. For further information and camp dates go to www.lionsbc.ca or call the BC Lions Society at 1-800-818-4483.

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Cerebral Palsy Association of British Columbia winter 2 00 8

regional

Are You Inclined?

Victoria

Pottery, Cooking, Swimming & Socializing!

Nanaimo
Nanaimo Recreation Centers motto, everyone active, everyday, certainly rings true where staff have worked very hard to develop programs for those with special needs. Cooking classes are wheelchair accessible and the pottery lessons have been designed specifically with special needs participants in mind. If you like swimming why not join an aqua therapy class? All movements will be adapted to fit your needs. Talk about customer service! Harwood Activity Centre and Nanaimo Aquatic Centre both offer a social club for teens and adults with physical and developmental disabilities. This social meeting place gives participants a chance to meet new friends and plan fun activities for the month. Pick up a Nanaimo Leisure Guide or phone the Special Needs Coordinator at 756-5200 for more information. To see a full listing of exciting programs available, Google Nanaimo Leisure Guide and go to Special Needs. Here you will find something for all ages, interests and abilities. Care aides are welcome; if you dont have one, Centres will do their best to assist you in locating one. So what are you waiting for? Get out and get involved!

Artistically
Are you interested in sculpture, woodwork, painting, jewelry etc.? If so, the Vancouver Island Society of Disabled Artists might be right up your alley. The society was founded in 1996 and is located at 4114 Shelbourne St. They offer support, direction and training to persons with disabilities who wish to become professional artists. Part of their mission also includes introducing disabled children and newly injured to a userfriendly art studio. Sound interesting? Visit the societys website at www.visoda.org or phone 250-472-2917 for more information.

Upcoming BC Workshops
The Family Support Institute will be conducting a Safeguards and Quality Service Workshop This workshop will help families identify what works for the individual family and how to best assist/provide for their child. It will also explore why safeguards are important and what can be done to improve existing safeguards. The tentative dates and locations are as follows: March April 5 or 26 May May 16 -18 North Vancouver & Abbotsford Nanaimo Victoria & Kamloops Prince George (At the family Focus Conference) June 12-14 Surrey June Cranbrook

Ready for a Holiday?

Victoria
This suite was built solely for guests in a wheelchair. Every square foot was designed with accessibility in mind. The full size kitchen has lowered counters and a roll-under sink and cook top. Bathroom features wheel in shower, raised toilet seat and appropriate grab bars. Enjoy a cemented private patio complete with seating area and BBQ. High, low season, family and group rates available. For more information go to www.accessvictoria.com or phone 1 - 8 8 8 -5 9 3 - 4247 or 250-744-0046 or email reservations@accessvictoria.com

For more information contact the Family Support Institute at 604-777-9100 or email cgrahamfsi@bcacl.org

Support Group Peer Support Group for Peer Youth with Disablilities Victoria
Vernon
Who: Why: Ages 16 29 To meet others, to be encouraged and supported, to build your skills and to share with others Monday afternoons 3:30pm 5:30pm Vernon Disability Resource Centre 3402 27th Ave., Suite 107 phone 250-545-9292 info@vdrc.ca

Are you interested in the creation of a peer support group for youth/adults, with cerebral palsy, in the Victoria area? If so, please add your name to the contact list at peersupport@drcvictoria.com or phone Wendy at 250-595-0044. If there is enough interest shown a group may be able to get up and running.

Time: Place: Info:

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general interest

Grab Power!!!!
By Louise Gaudry
I relish the new found freedom given me by my new power wheelchair; as far as I am concerned this is one of the best decisions that I have ever made. For much of my life I had relied primarily upon elbow crutches as my way of getting around in the world. My crutches have always served me well - still, by comparison the range of my world was limited to only as far as my arms could take me, or as a non- driver to where ever I could get a ride. As I entered middle age, discomfort from an overuse injury in the shoulders and chronic lower back pain became the norm as did fatigue born of a constant battle with the taxis to get from home to Skytrain. The less than two block ride was further than I could walk but not a lucrative enough business opportunity for many of the taxi drivers. I was often left standing for long periods waiting for someone who was willing to pick me up. Faced with the inability to get to Skytrain I suddenly asked myself: What are you doing?!! Why don't you get a power wheelchair? If you could find one that you can get on the bus, you won't have to depend on anyone to get to Skytrain! You might even save some physical energy. I asked my doctor to refer me to G. F. Strong for assistance in selecting a chair. My past experience working with a therapist in the community had been that they had little knowledge of CP and I did not want my dexterity concerns dismissed simply because my hands do not visibly shake. I worked with a therapist and a representative from a local medical supply company to select a chair that included the ability to program the controls with an anti-tremor command. This simple adjustment alleviated previously experienced difficulties driving a power wheelchair in a straight line! The mid-wheel drive chair that I chose also offers me the ability to board the bus forward and then turn my chair around in the designated wheelchair spot. This eliminates the challenge of having to back around the coin box and into the designated spot. This had made using a scooter on the bus impossible for me. As soon as I began using my new chair for my commute to work, I noticed an immediate change in my energy level. Regular passengers on the route even pointed out that I sometimes was awake for the ride; whereas previously I always fell asleep the second I sat down. Until I experienced what it was like not to be continuously physically tired I had no idea just how exhausted I was. Also new to me was the realization of how much my body pain actually contributed to my fatigue - a once constant throb in my shoulders is now gone and although not perfect; my back pain is much improved. I haven't abandoned walking. I cherish this ability. I still walk around my apartment, balancing by brushing my hand against the wall, and walk outside with my crutches with much more energy. I am now a firm believer that people should use all equipment available to them to enhance their ability to participate in life. I don't think you have to wait for pain to give the license, or to put it another way: If you want to cross a river you could swim but why wouldnt you to use a boat? Note: Employment Program for Persons with Disability (EPPD) will consider funding equipment for those not on PWD, needing equipment in order to pursue educational/vocational goals or to secure employment. In the greater Vancouver area the EPPD program is administered by three groups: Theo BC-Vancouver-(604)872-0770, Neil Squire Society-Burnaby-(604)437-9363 and Triumph Vocational Services-Surrey-(604)5870770 p ag e 7

The Emotional Struggle

My name is Brandon Ryan and I am twenty-three years old. I was born with Cerebral Palsy. I am the author of a book called, The Emotional Struggle. It is a book about my journey living with CP and trying to find common ground among peers and hope in the darkest times of my life. I have been through it all. I have had a rhiztotomy and tendon release surgery. Both of my hips have been operated on. I have had bones cut and placed in my feet so my arches would have support. I typed, The Emotional Struggle, with my left hand, solely using the first finger. This is my attempt to reach out and inspire those who are hurting and filled with lifes most difficult and gut wrenching questions. This book is my honest attempt at a confession a huge confession, requiring the release of everything that has been lodged in the chambers of my soul. I have broken the locks that have kept my deepest thoughts stored away. This book is for you. This book means so much to me. I know my stories I feel them. The Emotional Struggle has been a dream of mine and has been nearly three years in the making. It started with a year of writing everyday trying to perfect what was going to be a chance to inspire people to help them understand that no matter how bad life can be at times, there is always a way out. Life can get better, but in order to get better, in order to leave the past behind, you have to fight. You have to hold your head high and know that there is a purpose for breathing at this very moment. My book has been published by Authorhouse.com and has received a five star review on Amazon.com. My hope is that your heart will be moved in such a way that you decide to read The Emotional Struggle. Copies can be ordered at www.authorhouse.com/BookStore/ItemDetail~b ookid~47454.aspx or borrowed from CPABC library. Sincerely, Brandon Ryan Feed Back on Brandons Letter Please email any questions, thoughts or comments you may have for Brandon to wh@bccerebralpalsy.com or phone Wendy at 604-408-9484. We will forward them onto him and print some of your questions and Brandons answers in our next issue of The Roundtable.

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Cerebral Palsy Association of British Columbia winter 2008

CPABC Board Members
CRAIG LANGSTON TRISH MCKAY JONN OLLDYM DON RENAUD ESTHER J. LEE TONY KRUSE KENT LOFTSGARD LIZ CALDER LES EBL TERREANE DERRICK President Vice President Treasurer Secretary

Nowmore than ever before your membership will help to

Why I would like to be on a Farm

By Cathy Grant
I love animals. Goats can scare me but I like them. Chickens might scare me but I love them. Id like to be out in the field, watching Ed take care of them. I would just like to be in open clean air not a whole lot of people around. Maybe I will feel like I am taking care of the animals and that would make me feel good. Animals would not argue or talk back to me or tell me what to do. They would let me be ME and FREE! I would like to see bluebell flowers, one red rose plant, a plum tree and zucchini, tomato plant and an apple tree, pear tree, onion plants and herbs like basil, oregano, chives, tarragon, cilantro and parsley; however, this is not reality; therefore this is somewhat difficult for me to write. I want to believe it, I want to see it but it would take a miracle.

CPABC Staff
FERI DEHDAR Director of Programs & Administration TAMMY VAN DER KAMP Family & Individual Support Worker WENDY HAWRYZKI Administrative Assistant

Realize equality in a diverse society!

Become a member today!
Membership fee: $20 or whatever you can afford. Donation: I would like to make a donation to support the services and programs of the Cerebral Palsy Association of BC. Income tax receipts are only issued for donations of $10 or more, unless requested. $100 $75 $50 $25 My choice: Method of Payment: I have enclosed a cheque payable to the CPABC or:
Visa # Expiry Date Name on Card Todays Date

HaHa
What did the tie say to the hat? You go on ahead and Ill hang around. When cant astronauts land on the moon? When its full. What did one wall say to another wall? Meet you at the corner. What did the envelope say to the stamp? Sick with me and we will go places. Why do cows never have any money? Because farmers milk them dry!

Thank you Cathy for your contribution to our Member to Member Section on this months topic Holiday Destinations.
CPABC encourages all members to share their personal experiences, questions and concerns. Please email them to info@bccerebralpalsy.com

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Signature

Cerebral Palsy Association of British Columbia 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 Office Hrs: 9 AM to 5PM, Monday to Thursday

Please mail to:

Cerebral Palsy Association of BC 801- 409 Granville Street Vancouver, BC V6C 1T2
Charitable Registration Business Number 10690 4204 RR0001

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