MAY 2011 • VOLUME 1 • ISSUE 1
connecting • supporting • informing
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MAY 2011 • VOLUME 1 • ISSUE 1
SPECIAL FAMILIES MAGAZINE May 2011
connecting • supporting • informing
on the cover: Parents Nat and Ryan, with children Nola, Ethan and Aris.
Cover photo by Amy Hockley. www.capturedbyamy.com
Departments 8 Special Finds ars 9 Through the Ye munity 1 0 In the Com 1 2 Spotlight
ies 1 5 Social Stor ning 3 8 Special Mea
the to muse all from iews and things News, views, rev needs world of special g ng • informin ti or supp connecting •
rESPitE rEfrEShEr Get the respite rundown with our in-depth feature all about respite
grEAt ADAPtAtionS Adapted recreation feature
28 30 32
BC CAMPing SPECiALiStS An overview of some of the amazing camping destinations for kids with special considerations
DruMMing uP SuPPort For music/music therapy ExCEPtionAL fAMiLy trAvEL Resources and advice for families with special considerations
Winning At LifE With the Special Olympics
LifE With LuPuS SPECIAL FAMILIES MAGAZINE May 2011
Editor’s Message VOLUME 1 • ISSUE 1 Unit 114, 42 Fawcett Rd Coquitlam, BC V3K 6X9 Call 1.866.325.1522 www.specialfamiliesmagazine.com firstname.lastname@example.org Publisher & Managing Editor Nat Mountain email@example.com
In elementary school, I distinctly recall being afraid of the kids in the “special class”. I can’t identify what it was that I was afraid of, but I let this fear guide me to go out of my way to avoid interacting with any of the special needs kids. I recall that, as they were segregated in a separate classroom, this was fairly easy to do. If there were any special needs children in my neighbourhood, I wasn’t aware of them and I grew up essentially unexposed to anyone with special needs of any kind. In 1997, I became a mother and shortly thereafter I was redefined a “mother of a special needs boy” after our son suffered four strokes and nearly died at six weeks old. Through the years, our family has navigated the challenges and obstacles that come with being a special needs family with mixed results. There have been strains on family and relationships, times when our bank accounts were empty and our spirits weary. The celebrations were many but seemed soon interrupted by another trip to the hospital. I’ve always wondered how people can feel that their challenges have not defined them, for I feel that our son’s disabilities have changed me in ways that have molded and cast me in permanent, character-changing ways. Fortunately, these are all for the better and I can say with honesty and pride that I have been defined by my son’s special needs. I think often of the amazing people that School-Girl Me missed out on knowing and the inspiring stories she never heard and I wonder just how they would have defined me. I’m sure I would be a better woman today. Special Families Magazine is a resource for all of us. In “connecting , supporting and informing” SFM readers about the challenges and celebrations of those with special needs, we may all be significantly impacted in character and spirit. I dedicate this publication to all the special needs children out there who are doing what they need to do simply because it needs to be done and to the families and individuals that support them as best they can.
Art Director & Layout Rommel Ramirez firstname.lastname@example.org Editorial Assistant Kim Patterson email@example.com Sales & Administrative Coordinator Katie Isenor firstname.lastname@example.org Advertising Account Executives Danielle Dionne email@example.com Katie Isenor firstname.lastname@example.org Staff Writers Kim Pemberton, Racquel Foran, Heidi Turner, Cindy Kavanaugh, Chris Byrnes Contributors Elisabeth Walker-Young, Holly Currah, Tammie Burak, Caitlyn O’Brien, Michael Kingscott, Debbie McKeown Special Families Magazine (SFM) is BC’s Amazing Special Needs Resource featuring “news, views, reviews and things to muse” all from the world of special needs parenting in BC. SFM is published 10X per year in British Columbia by The Special Success Group. All contents copyrighted. Written permission from the Publisher is required to reproduce, copy, quote, or reprint any of the content in Special Families Magazine. For details on editorial submissions, please refer to the guidelines at
Special hopes. Special dreams. Special needs. Special place in my heart.
www.specialfamiliesmagazine.com. SFM seeks to offer our readership content that is informational, newsworthy, fact-based and sourced from a spectrum of qualified perspectives. The views expressed in this publication may not necessarily be the opinions of the Publisher or other staff at The Special Success Group. The Publisher reserves the right to refuse any submission deemed
Nat Mountain Publisher/Managing Editor
to be inappropriate for our family-oriented readership.
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MAY 2011 • VOLUME 1 • ISSUE 1
connecting • supporting • informing
enthusiasm FOR SPECIAL FAMILIES MAGAZINE
Special Families Magazine will be a treasured resource for those of us that work in education. Insight into the challenges and opportunities of those living with special needs will help me in my work and in my life. Chelsea Shimoyama, Teacher (Prince George School District) As a mother and social worker, I am always looking for ways to connect other mothers to community resources that will support them in the challenging task of raising a child with special needs. Special Families Magazine is the resource I have been waiting for! Nicole Hale, Social Worker (Kamloops, BC)
E-mail us at email@example.com with your comments, questions and suggestions and we’ll be happy to publish it!
As a teacher-on-call, I must be prepared to teach different students every day, including those who have special needs. Special Families Magazine would be an amazing resource for me and ALL teachers striving to better understand and more effectively educate special needs students! Corly Wilson, Teacher (Surrey School District)
I am looking forward to reading Special Families Magazine because it is ideal that the whole family be considered when there is someone with special needs in a family. As a teacher dedicated to special needs youths, I’m looking forward to reading about special needs advocacy and features on the professionals working in the special needs community. Greg van Vugt, Teacher, BASES/Learning Support Team (Surrey School District) As a grandmother to a ‘special’ special needs boy, I am thrilled there will finally be a magazine with information, resources, tips and contacts that will help me connect and build on my relationship with my grandson. Hooray for Special Families Magazine! Holly Currah, Granny (Mackenzie, BC) As a family therapist, not only could I professionally benefit from the increased awareness and information that would come from a magazine such as Special Families Magazine, but it would be an invaluable resource to provide to the families I work with who face the challenges of parenting special needs children. Naushina Kiely, Family Counsellor BA, MA, RCC PE teachers are always looking for ways to adapt our program to include children and youths with special needs. I am pleased to see how much content in Special Families Magazine is geared towards athletics- can’t wait for it. Reid Roberts, PE Teacher (Prince George School District) My experiences working in Special Education are directly with a student, usually with no connection to the family and their dynamics. I am very much looking forward to Special Families Magazine to share knowledge and wisdom about the entire family...where the heart of the child lies. T. Smith, Special Education Assistant
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Support Brain Injury Prevention & Awareness throughout BC by supporting the BC Brain Injury Association. Your generous donations help us to make a difference for those with Acquired Brain Injury and their families across BC. BC Brain Injury Association #143-11948 207 Street • Maple Ridge, B.C. • V2X 1X7 ph. 604-465-1783 • www.bcbraininjuryassociation.com
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SPECIAL FAMILIES MAGAZINE May 2011
EVERY ISSUE WE TEST, READ, SAMPLE OR VISIT PRODUCTS AND SERVICES OF INTEREST TO OUR SPECIAL FAMILIES. HERE’S WHAT WE FOUND THIS MONTH...
Shut Up About Your Perfect Kid A Survival Guide for Ordinary Parents of Special Children
BodySox™ We thought this item was interesting, if a bit odd looking at first. The online description encourages users to “Climb inside and explore your own space” noting that “the stretchy material gently resists your movements encouraging experimentation. To those on the outside your body becomes a colorful shape. Teaches spatial relationships and encourages gross motor skills.” BodySox™ has a Velcro® opening and comes in a variety of sizes. We tested the large sized BodySox™ on Ethan, a 13 year old very sensory affected autistic boy. Ethan did not want to put the BodySox™ on, but once he tried it, he liked it. He applied pressure to the stretchy fabric and we had fun playing “guess what he’s doing in there” games. He kept the item on for about 30 minutes sometimes with his head in, sometimes out and we noticed a definite sensory affection for it. It was fun for Ethan’s typically developed siblings to use as well . The BodySox™ does not take up much storage room and can be used as an interactive tool with a sensory soothing side-effect. Where to buy: www.specialneedstoys.ca search “Body Sox” Price: From $120 including taxes (free shipping)
Written by Gina Gallagher and Patricia Konjoian On a “perfection-preoccupied planet,” sisters Gina and Patty dare to speak up about the frustrations, sadness, and stigmas they face as parents of children with disabilities (one with Asperger’s syndrome, the other with bipolar disorder). These two tell it like it is in this humourous take on life as parents of special needs children. The book text is organized layman’s style, the tone is unabashedly cheeky and the authors make no apologies for their lack of professional expertise. Written as two moms who’ve been there to the rest of us, “Shut Up” is an insightful, if tart, dialogue on the bumpy roads parents of special needs children navigate. For every parent raising a child with special needs, the witty anecdotes scattered over most of the pages in “Shut Up” read like shining beacons of validation of the many hits and misses of parenting in a world focused on shiningly accomplished “perfect” children. In chapters entitled “From Tissues to Facing the Issues” and “Reality (of the School) Calling” the authors advocate embracing your special needs child’s “imperfections” and standing up to those persons and systems that may be less accepting or considerate of the needs of a child with a disability in the quest for “perfection”. Look past the biting humour and readers will be treated to a serious eye-opener of the “imperfect” world of the special needs family. Where to buy: Available locally at Chapter’s and online at www.amazon.ca Price: Approximately $20.00
Egg-Ohs!™ Adorable egg-shaped grips develop the small muscles of the hands needed to write with precision. Kids find the rubber egg soft and irresistible. Developed by a therapist that is a handwriting expert. You will love the results! Therapists love the way the Egg-Ohs!™ Develop the small muscles of the hand. The three sets of arches in the hand allows students to write with precision. The comfortable rubber egg shape is irresistible to hold. Contains latex. Where to buy: www.schoolspecialty.ca Price: $10.29 plus shipping/taxes per set of 3 8
THROUGH THE YEARS
IS FOLLOWING HER HEART AND FULFILLING HER DREAMS by Chris Byrnes with Sarah Lapp
Sarah, now a successful young woman, has a lot to smile about, captured here in a 2008 photo by photographer Jamie de Champlain.
Sarah’s beautiful smile, captured by photographer Rick Etkin in a studio shot from the 1995 Show of Hearts Telethon.
Cerebral palsy is a non-progressive, but changing condition that affects body movement and muscle control. About 1 out of every 500 British Columbians has cerebral palsy according to the Cerebral Palsy Association of BC’s website. Sarah Lapp was one such child with cerebral palsy who benefited from therapeutic programs at the Variety Child Development Centre in Surrey, now known as The Centre for Child Development. In 1995, Sarah, as a 9 year old youngster, was invited to participate in the Variety Show of Hearts Telethon where she danced on stage with another youngster, Laura Fitzpatrick, in their wheelchairs accompanied by ballerinas to the song “The Circle of Life” as performed by Andy Thoma. Sarah fondly remembers her experience on the Show of Hearts. “The experience was amazing overall,” says Sarah, “but remains especially memorable because it was my first integrated dance experience being featured alongside able-bodied dancers.” So what has Sarah been up to since then? Sarah is now a young woman, 27 years old, and she has been very busy to say the least. She may have been born with cerebral palsy, but she hasn’t let her limitations keep her from finding creative ways to express her love of dance and music. Growing up in Surrey, Sarah started performing early in life. She sang in school and community choirs and designed her own routines on the floor in her elementary school gym class. In 2005, she earned a certification in Advanced Arts and Entertainment Management from Capilano University. Since then, she has continued to feed her appetite for music by supporting local artists. During the Vancouver 2010 Paralympic Winter Games, Sarah and other dancers with disabilities collaborated with the Canadian Wheelchair Dance Academy on Coca-Cola’s featured promotional wheelchair dance performances at the Torch Relay
Celebrations. Sarah has also appeared with this same group in several demonstrations and shows, including the Rediscover Granville 2010 buskers’ festival. Sarah’s latest artistic endeavour is DANCIN’tergretion, a newly formed dance collective that hopes to develop and facilitate integrated dance programs for both youth and adults in the community. In her offstage life Sarah and her husband Matt Pregent have been working with their long-time friend, Kent Loftsgard, to develop Wheelin’ Mobility, a 24-hour/on-call mobile repair service for wheelchairs and scooters. While building this new business, Sarah is also working as a contracted bookkeeper. From late 2006 to early 2010 Sarah worked as a client services coordinator for Pacific Assistance Dogs and still maintains volunteer commitments to several worthy charities and service clubs. Thanks to the dance component of RealWheels 12-week WheelVoices Workshop, Sarah has had the opportunity to share her creative input into unique choreography for wheelchair users, while also furthering her training and advancing her dancing skills. Through her dancing Sarah hopes to prove what is possible for others and to inspire them to discover the best of their own capabilities. She is working to bring integrated dancing to a wider audience and is using it to open up conversations and create relationships. Sarah Lapp personifies what it means to triumph over the challenges one faces in life. When one sees the success Sarah has had at creating an inspired, artistic, entrepreneurial, and meaningful life on her own terms, it demonstrates what is possible if one believes in one’s self, reaches for the stars, and perseveres. SFM Chris Byrnes is a communications consultant and a freelance writer. He can be reached at 604-263-3608. SPECIAL FAMILIES MAGAZINE May 2011
in the community by Kim Pemberton
It has been more than a decade since I first heard about the widely published piece called, “Welcome to Holland” by Emily Perl Kingsley, who described what it was like being a parent of a child with a disability. It seems to be required reading for any new parent of a child with special needs, where the metaphor of a planned exciting vacation to Italy ends instead with the unexpected arrival in Holland. She points out, while other parents who went to Italy are, “bragging about what a wonderful time they had there,” you could end up spending your life mourning the fact you didn’t get there yourself, but to do so would rob you of the Holland experience. Kingsley says it best when she describes what happens when you first realize you are in this new land. “You must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slowerpaced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills..and Holland has tulips. Holland even has Rembrandts.” When I look back on my own experience, so far, raising a child with special needs, I can see the grace, beauty and joy in this new world. Don’t get me wrong; I didn’t always feel this way and there have been many bumps along the road. When they happen, and they still do, the challenges can feel so overwhelming and unfair. There have been times I wished I was in Italy, but what an opportunity for personal growth! After 13 years in Holland, I have 10
to agree with Kingsley that there is no use wasting time feeling bad when things go wrong. It’s best, as the current saying goes, to just, “keep calm and carry on.” The tulips do come out again. I thought I would begin this first column in Special Families Magazine telling you a bit about my journey to Holland. If you are reading this it’s likely that you or someone you know is also sharing this experience. Your trip around Holland may have a different itinerary than my own, but here we are - together. I often think parents of typical children will never quite understand what it is like to be a parent of a child with a disability. It’s almost an unspoken knowledge we have when we meet - we just get it and accept each other’s kids. My child’s name is Hannah. She’s 15 years old and is a friendly, loving, competitive athlete who enjoys all sports, including basketball, soccer, running, biking and swimming. You name it, she
“Why would she even need an ADVOCATE? Wouldn’t services be there automatically for children with DISABILITIES?”
loves to play it. She also has an acquired brain injury. Hannah had a prenatal stroke that affected her speech and language, and she can be behaviourally challenging. Again, lots of fodder for a future column here - not all of it bad. I can certainly think of times when Hannah’s acting up is so funny all you can do is laugh it off. I think most families of children with special needs end up taking a lighter perspective to incidents that would have caused havoc in families of typical children. We’ve seen it all and aren’t fazed by much. Having a child with special needs in your family forces you to change, to be more understanding, empathetic and tolerant of differences. I sometimes wonder if Hannah’s 19-year-old sister Chloe would have been a different person had it not been for being the sibling of a child with a disability. I certainly believe she’s stronger because of it, but it does come at a cost. With so much focus going to the child with special needs it has to have had an impact on siblings. In a future column I’d like to explore more on that often overlooked subject. Chloe has always figured strongly in this special needs world and, in fact, she was the reason I first found out we were in Holland and not Italy. It was Hannah’s second birthday and I decided it would be fun to watch a video of Chloe when she too turned two years old. As I watched Chloe on film, singing the alphabet song and chatting away, I turned to my quiet, youngest daughter and realized the handful of words she had like, “ma ma, ba ba and Chlo Chlo,” which she called her sister weren’t enough for a child of her age. Could there be something wrong or would she be a late talker? After a visit to the pediatrician and subsequent testing, came the diagnosis of an infarct to Hannah’s left temporal lobe. I will never
forget the moment the doctor told me she didn’t know whether Hannah would ever be able to talk. To say I was devastated would be an understatement. I certainly knew nothing about children with special needs and, when the doctor said she (WOULD) help advocate for Hannah to get the help she would need, alarm bells went off in my head. I immediately thought, “Why would she even need an advocate? Wouldn’t services be there automatically for children with disabilities?” How little I knew. The sad reality is that in British Columbia help isn’t easily available and. in some cases, not there at all. What I’ve found is that, more often than not, the children who get the help to meet their full potential are the ones with the strongest advocates. It’s not right and it needs to change. In future columns, I’d like to address the tireless advocacy being done by parents and others concerned about children with disabilities in B.C. to right that wrong. I’d also like to introduce you to some of the heroes I’ve met in Holland. How right Kingsley was when she pointed out that I would meet people I might never have met and how amazing they are - like Barb Laird of the Down Syndrome Research Foundation and John Simpson, a brain injury consultant. Both have helped me tremendously whenever I have come up against barriers to Hannah’s full inclusion and participation in both school and community. Yes, Holland wasn’t where I planned to go but it has been one heck of a journey so far. I look forward to sharing more about this world I’ve come to appreciate. As Kingsley said there are, “very special...very lovely things about Holland.” I hope you are noticing the tulips too. sFm Kim Pemberton is a full-time writer with various publications throughout the Lower Mainland. SPECIAL FAMILIES MAGAZINE May 2011
SHEDDING LIGHT ON LESSER-KNOWN DISABILITIES IN OUR COMMUNITY
by Selena Tenhoeve rIley made an Impact from the moment he was born – at 10lbs 9oz with a shock of platinum coloured hair he was hard to miss. At 6 months old, after persistent colds, skin infections and terrible eczema, Riley was accidentally diagnosed with an extremely rare blood disorder called ChediakHigashi Syndrome (CHS). CHS is characterized by a low functioning immune system, a lack of blood clotting abilities and occulocutaneous albinism (being albino) as well as the development of progressive neurological issues including decreased cognitive
Fraser Heights Out of School Care Licensed Group & Out-of-School Care Serving Fraser Heights in Surrey
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function, nerve damage and muscle weakness. Patients with the illness typically die of overwhelming infection between the ages of 2 and 10; a bone marrow transplant can be life-saving though the neurological issues would persist. At 10 months old Riley headed to BC Children’s Hospital for his first bone marrow transplant. He was nicknamed Chicken Little straight away for his glasses and the patch of hair that was always sticking up on his head. Unfortunately, the donor’s cells did not grow at all and Riley contracted viral
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“We had the most amazing SUPPORT NETWORK of family and friends and if any of us could have taken all of this suffering from Riley, we would have in a heartbeat.”
pneumonia and a terrible fungal infection. Having had chemotherapy to knock out his immune system and with only his Chediak-Higashi cells coming back, he became extremely ill and spent his first birthday in the ICU on a ventilator. Two weeks later and against the odds, Riley was up and ready to go. The fungal infection had rotted part of his lung and he later had a third of his lung removed but, after four and a half months in the hospital, we went home to get strong in preparation for a second bone marrow transplant. As you can imagine, we were less than excited to bring him back for the next transplant. Riley’s happy little self shone through. Despite seven days of chemotherapy and one dose of radiation, Riley did not get sick and barely slowed down! Thirtyseven days after being admitted, Riley was sent home with 85 percent donor cells and we couldn’t have been happier, though it was a long road back to normalcy. Following a bone marrow transplant your immune system is extremely vulnerable for months and, after living in a bubble for over a year, it was really hard to relax and just let Riley be a little boy. Riley’s donor cells have been slowly slipping since his transplant 3 years ago and we are currently at 9 percent donor and 91 percent Chediak-Higashi. Ten percent donor cells seems to be the minimum amount required to prevent overwhelming infection. Riley is doing so well right now and has so much energy it is difficult to even think about a third transplant. Our doctor is cur-
rently preparing to do extensive testing on Riley’s blood and we are heading to the National Institutes of Health during the first week of May to participate in CHS research – we are hoping our contribution will help lead to a cure. I can’t even begin to count how many times people said, “I don’t know how you did it.” My response, “How can you not?” We had the most amazing support network of family and friends and if any of us could have taken all of this suffering from Riley, we would have in a heartbeat. I have always been an extremely positive person and no matter how bad things got, it never occurred to me the situation would turn out any differently than it has. It was hard because Riley was so young, but at the same time he has been through so much and doesn’t remember a thing. You can choose to dwell on the negative or you can enjoy all that you have. Riley has the only case of CHS in Canada and most of this illness is unknown. Will he require a third transplant? How severe will the neurological issues be? We don’t know. We do know that his immune system remains low functioning and that he catches everything going around. Even when he is sick he is happy and he has been extremely lucky to avoid hospital stays for the past nine months (knock on wood)! Our family has been through a lot, but we are happy – happy to have each other, happy that Riley is such a crazy bundle of energy and happy to be able to enjoy our days together. sFm
Zox of the
For birthday parties and special events, Zox of the Forest offers very interactive children's shows consisting of skits, storytelling, puppetry, juggling, music, and balloon animals and animal art drawings for the children after the show. For more information, go to www.zoxoftheforest.com or call David Cooper at (604) 710-4234. SPECIAL FAMILIES MAGAZINE May 2011
Respite Refresher Get the respite rundown with our in-depth feature all about respite
by Racquel Foran As most of us know, a break from the daily routine is often all we need to get refreshed both mentally and physically. This is particularly true for those who care for someone with special needs. Respite services are available for exactly this reason, to give caregivers a much-needed break from their 24-hour responsibility.
namic. All three say that families report feeling more rested and better able to manage their care-giving responsibilities after a break. Pedersen also did a good job of explaining other benefits of respite. “It expands the family and individual’s support network and builds friendships… and the caregiver has the opportunity to introduce new experiences to an individual and family.”
What is respite?
The most basic definition of respite is a short break or rest from something difficult. For those seeking respite a break or rest can be defined and used in many different ways. Because of this both the government and service providers have worked hard to fund and provide flexible options to those caring for family members with special needs. These options include hourly, daily and longterm respite services, provided both in-home and in the community. Regardless of the duration or location of the care, respite is meant to support families and make their lives a little easier. Why use it?
Kelly McCafferty of the Surrey Association of Community Living made the point that people caring for special needs family members have a right to respite funding and they should take full advantage of it. McCafferty along with her peers in the field, Karen Pedersen from The Chilliwack Society for Community Living and Terry Schenkel from Family Support Services all agree that respite is an important part of maintaining a healthy household dy14
Life changing experience
Tannis Anderson is the single mother of two children who agrees with Pedersen’s assessment. Her 14-year-old son, Jamie, suffers from a rare neurological disease - bilateral rasmussen’s encephalitis. His symptoms include brittle diabetes, intractable seizures, and developmental delays. His medical treatments are complicated and demanding; Tannis is his primary caregiver. Although she has been taking care of her son’s special needs with little outside help for over ten years, she only started taking advantage of respite just over a year ago. Like many caregivers, it wasn’t until she was really at the end of her rope that she finally sought help. “I was physically, mentally and emotionally exhausted,” she said. “It [respite] was a lifesaver.” “I am taking yoga classes now,” she added with excitement. “I have never been able to take a class before.” Although she said that much of her time away from Jamie is spent just catching up on her sleep, she also gets to spend more quality time with her daughter now, and her time with Jamie is also, “more fun.”
Respite as Work
Respite work is not considered a career. The maximum amount a caregiver receives for a 24-hour period is $150. In order to earn this top rate, the person receiving care must have extreme needs. Most likely workers would earn between $100 and $120 for a 24-hour period and between $10 and $14 for hourly work.
There are innovative new resources now available to help families and individuals find the right service to fit their particular needs. For example, Support Worker Central, an electronic matching service that connects families and individuals to support workers or respite workers is particularly useful as many seeking help say that one of the biggest challenges they face is finding a qualified caregiver.
Caregivers are not employees of the government or any service organization. They are self-employed independent contractors. For this reason it benefits both the worker and the family seeking services to use a community living organization to coordinate respite. Workers benefit because when contracted through a community living organization they receive both WCB and liability insurance coverage. For families, the organization takes on the heavy load of screening and matching workers, ensuring qualified, security-screened people are found. There is a long screening process including a criminal record check. Caregivers must also have first aid training, as well as references. Many respite workers are Special Education Assistants (SEAs) and provide respite care part-time during school holidays, on weekends, or in the evenings. If not an SEA, caregivers often have some other personal or work experience with special needs individuals. All program managers agreed that the people who do this work do so for personal rewards, not financial ones. Karen Pedersen said that when she is screening candidates the most common reason she hears that people want to be a respite worker is because they want their own children to feel comfortable around special needs individuals, and they want to expose them to community work.
Community living organizations are also using technology to make their jobs easier. The Chilliwack Society for Community Living has implemented ShareVision, a website infrastructure that provides places to capture and share ideas, information, communication and documents. CSCL uses ShareVision as their main working database for all CSCL employees.
The real surprise for Tannis though, was how good respite has been for Jamie. “It started out about me needing a rest,” she explained, “but Jamie really looks forward to his sleepovers now.” He spends two three-day weekends each month with another family. “They take him swimming and to the movies. It’s something he can do.” She admitted to being nervous about leaving him in the beginning, and the first family they tried didn’t work out but now she says, “It’s amazing.” For those who care for someone with extremely demanding needs, respite provides them with an opportunity to enjoy activities with their other family members that they might not be able to take part in because of the restrictions their loved one presents. Javier Barreto credits respite with allowing him to spend better quality time with his family. Javier’s 18-year-old daughter Nelly has Angelman syndrome; she is nonverbal and needs one-on-one support for all of her daily activities. This need has frequently limited their activities. Like Tannis, Javier was nervous about respite at first, but because his family was feeling really overwhelmed he and his wife decided to give it a try for one weekend. That was eight years ago. They now use respite on a daily basis and cannot imagine life without it. Preparation and planning
Pedersen, Schenkel and McCafferty all say that families should not wait until they are in a crisis situation before seeking help. Many communities have waiting lists for services, and the process of matching families with caregivers is understandably complicated. Because a referral from the Ministry is required, most organizations recommend contacting your Ministry-assigned social worker first. The social worker will then put you in contact with the organization in your community that offers respite services. Planning is also an important part of having a successful respite experience. Families should know how much respite they need per month; have an idea of the type of caregiver they are hoping for; be aware of their scheduling needs; and be sure they are comfortable with leaving their child with someone they don’t know well in the beginning. Having clear expectations and communicating them well to the proContinued on page 16… SPECIAL FAMILIES MAGAZINE May 2011
…continued from page 15.
gram manager you are dealing with goes a long way toward achieving a successful match. Caring caregivers
If the families benefit from respite, so too do the workers. Darcie Prokop has been providing respite for all of her adult life. Her mother provided both foster and respite care for over 40 years and Darcie has continued the good work. She says she doesn’t consider it work or a chore, “it is simply what I love to do.” Adding that she believes that giving back to her community is way of giving thanks for all of her blessings. Darcie currently works with a family in her community whose daughter has autism. She says that they do a lot of play and enjoy outings to the park. Darcie obviously loves what she does and only has good things to say about the experience. “You learn so much. The appreciation from families is tremendous.” With so many benefits for everyone involved it is easy to understand why those working in the community service organizations encourage families to take advantage of the respite funding available to them and seek out respite options in their communities. SFM
Special Needs, Special Program Community living organizations around the province work hard to find creative ways to support families with special needs. One great new program is Respitality. Although the cost of respite care is funded by the Ministry, additional medical and care expenses often make something like the luxury of an overnight stay at a hotel impossible for families with someone with special needs. With this is mind, The Chilliwack Society for Community Living launched its Respitality program in December 2008. Several area hotels, including Harrison Hot Springs Resort and Spa, Rowena’s Inn on the River, and the Royal Hotel have donated free nights to the program. When parents have someone come in to their home to provide respite, they can then enjoy a free stay at the hotel. CSCL says those who have taken advantage of Respitality have gone as far as to call it life altering.
Financing Respite The Ministry of Children and Family Development does fund respite services for families of children with special needs. The funding is granted in a way that allows families to choose the respite services and care providers that suit their individual needs. The Ministry provides up to $2,800 per year to approved families. Once funding has been approved, there is no need to reapply. The funds are usually redirected to a community service provider that then oversees matching the family with a caregiver. If the services offered by the community organization do not meet the family’s needs, direct funding is now also an option. Families receive funds directly and then use them in the manner that best fits their needs. Families are also required to pay up to $400 per year toward respite services. How much each family must contribute is determined by family income and the age of the child. Receiving respite funding does not, however, impact any other type of funding families might be receiving from the Ministry.
Useful Links The Ministry of Children and Family Development http://www.mcf.gov.bc.ca/at_home/respite_benefits.htm • This is good starting point if you are considering respite care. The Ministry provides a general overview of funding and service options as well as contact info for regional offices.
Benefits of Respite • Provides primary caregivers with a mental and emotional break from their 24/7 responsibility • Frees up time for the primary caregiver to take care of personal needs and appointments • Allows primary caregiver to pursue hobbies and interests • Provides special needs individual with diverse social opportunities • Introduces both family and individual to new activities and people • Broadens both the family’s and the individual’s support structure • Strengthens family relationships and contributes to a healthier family dynamic
Support Worker Central http://www.supportworkercentral.com/About-Us/FAQs •This website was launched for the purpose of linking support workers with families and agencies. The database is a pilot project of The Family Support Institute. Registration is free. Community Living BC http://www.communitylivingbc.ca/about/ • CLBC provides support and services to adults with developmental disabilities and their families. Respite services are among the many supports provided.
Interviewing Respite Providers When you’re ready to advertise for a respite worker, it’s time to consider how you will choose the right caregiver. For many parents, the prospect of interviewing candidates can be a little intimidating. Before settling on a respite provider, you will want to get to know him or her. That’s where interviews come in. Here are a few suggestions that can help to make the selection process go smoothly. First Contact
You will save yourself time and trouble by eliminating undesirable candidates early in the selection process. One way to do this is to make your first contact by phone. Describe the position, the hours and other important aspects of the job. Ask about the applicant’s ability to do the work. You want to learn enough about the applicant to determine whether they will be able to satisfy your key requirements. Does the applicant have other work that might cause a scheduling conflict? Have the applicant describe experiences that have given them the necessary skills for the job. If you are unsatisfied with a candidate’s responses, thank them for their time and move on to the next applicant. Check References
Once you have selected potential candidates, call the references they have given you. If you are satisfied with the reports you’ve heard from references, call the applicants you would like to meet with and invite them for an inhome interview. In-Home Meeting
You should meet with potential respite workers in your home. Introduce the applicant to your child and make note of your impressions. Describe the kinds of care-giving scenarios that are likely to occur and ask the applicant how he/she would respond. Resources
The Cridge Centre for the Family, a Victoria non-profit society provides information to families on respite care agencies, the selection of respite services and educational and training opportunities. They also have an excellent resource available online called Choosing a Caregiver for a Child with Special Needs. This guide provides worksheets to help parents through the hiring process and includes interview questions that can be used during interviews. http://www.cridge.org/UserFiles/file/ChoosingaCaregiver2009.pdf
Sites that may be helpful: http://www.supportworkercentral.com/ http://www.communitylivingbc.ca/
SPECIAL FAMILIES MAGAZINE May 2011
adapted recreatIon FeatUre
‘Snowbility’ Sensation SportAbility BC Programs Sledge Hockey SportAbility BC offers this exciting sport to persons with or without physical disabilities.
by Caitlyn O’Brien It’s 9 a.m. thUrsday mornInG. Grouse mountain is covered in fresh January powder and the instructors are waiting for their students to arrive. Vancouver Adaptive Snow Sports, or “VASS”, welcomes all ages to participate in their adaptive ski programs. The instructors are dedicated and are always striving to work with the students’ abilities. “I do it because of the smiles on the kids’ faces, even the smallest accomplishments,” says Alison Mansfield, a dedicated VASS ski instructor who got involved four years ago. “Like if they learn how to turn right, it’s a huge accomplishment. It’s nice to see a smile on their parents’ faces too.” Instilling confidence is what VASS does best. “You get more out of it than you put in. When you get up there and you see someone who is nervous and after six weeks they’re going down the mountain with a real level of confidence, seeing that is very satisfying,” says Dan Moscrip, director of the annual VASS Challenge Cup. This year, despite white-out conditions, the VASS Challenge Cup raised $60 thousand, which is $12 thousand more than last year. The funds from the Cup go toward volunteer training, certification, and specialized equipment tested by VASS volunteers. “I skied with outriggers, which are a sort of crutch for balance, and my thighs were about to explode. It takes a lot of strength and you use muscles you didn’t even know you had,” chuckles Moscrip. He suggests the ski equipment has evolved in some ways: the outriggers have become lighter and there are now grips on the ends for slowing down. The modern sit-skis, which can run up to $5 thousand a unit, have been improved with shock absorber systems and curved skis for carving. The whole sit-ski unit can actually lift right on to the chairlift thanks to built in hydraulics. The goal is to create a safe and comfortable environment for learning, which often transforms into more.
Love Sports? Join In the Fun! SportAbility is a multi-sport organization that provides recreation and sport opportunities for all people with physical disabilities. Get active and get involved with SportAbility as an athlete, volunteer, coach, official, or sponsor!
Call 604-599-5240 www.sportabilitybc.ca
Sitting Volleyball SportAbility BC will be offering this new sport to persons with or without physical disabilities. Sitting Volleyball is played with a shorter net, smaller court, and the athletes play sitting on the ﬂoor. Boccia SportAbility BC offers this precision sport to persons with severe physical disabilities. Boccia has been adapted to be played in a gym with custom balls and equipment. To ﬁnd out more about these great sports, please call 604 599-5240 or visit www.sportabilitybc.ca.
“We have students that come back and teach. We had a student named Mark who had a brain tumour and was on long-term disability. People told him he couldn’t learn anymore, but he came out with us and learned to be a great skier; now he teaches and races with our Blue Streaks,” says Moscrip. “We love our little community, but we want to give people independence,” says Mansfield. “When they’re out skiing with their friends and families we know we’ve done our job.” The Disabled Skiers Association of B.C. runs the ‘Snowbility’ program for local adaptive ski clubs throughout the province, which includes VASS. Currently there are 11 existing clubs at mountains like Seymour, Grouse and Whistler. The hope is to get more clubs going and more mountains participating. The dream for VASS is to equip ski hills province-wide with trainers, equipment and transportation around the clock. When someone with a disability can decide to go skiing on a whim like anyone else, the dream will be complete. sFm
Can Curl by Elisabeth Walker-Young
ImaGIne. You discover a sport that you are successful at, meet new friends and have a ton of FUN! Now imagine I tell you that you won’t be able to participate. That sounds disappointing doesn’t it? You would probably want to understand why. For many children with a disability, this is a reality when trying a new sport. Sometimes the instructor doesn’t think they can teach someone with a disability or the child can’t access the facility or there isn’t a local program dedicated to children with a disability, interested in adapted and the list goes on. That list also curling programs for includes families, guardians and your child? caregivers. A common struggle for Contact Elisabeth Walkerfamily units with children with Young at Curl BC for more and without a disability is access details on how you can get to recreation programming that your family involved. meets everyone’s needs. email@example.com Curl BC has developed CAN Curl, 604-333-3622 an adaptive curling program for 1-800-667-2875 children and youth with a disability. CAN Curl is delivered in gym settings using specialized curling equipment and accented with a multitude of adapted materials to ensure that everyone who participates has a positive and successful attempt at the sport. Initial goals for CAN Curl are active living, socialization, skill and motor development. Traditionally, curling is valued as a social sport, one where families can participate together. CAN Curl makes this a possibility for families
with children with and without a disability. Pizzeria, Curbowling, Connect the Dots and Cheers are some of the games involved in CAN Curl. Delivered through Curl BC, CAN Curl practices the following methods for successful access: • Attitude is everything and ﬁrst impressions resonate even with young children. • We let children explore options and movements. A child with a disability in a supportive environment might often be able to sort out a technique that works best for them, all by themselves. • We acknowledge that ‘traditional’ forms and technique might not be achievable. • We set similar goals for the child with a disability, as we do for those without. • If a child needs additional assistance we set up a buddy system. Pairing them with someone other than their sibling helps to promote relationship building, socialization and gives the sibling a break; however, the sibling match might be more comforting. We feel it out! • Children are amazing and don’t see differences the same way many grown-ups do. We may witness the emergence of little leaders! • We have push sticks, Therabands, foam grips and Velcro on hand to help with ad hoc adaptation needs. sFm
CURLING GIVE IT YOUR BEST SHOT
www.curlbc.ca 1-800-667-2875 Traditional Wheelchair Floor, Stick Deaf, Blind Special Olympics All ages SPECIAL FAMILIES MAGAZINE May 2011
As a mother and social worker, I am always looking for ways to connect other mothers to community resources that will support them in the challenging task of raising a child with special needs. SMF is the resource I have been waiting for!” ~ Nicole Hale, Social Worker
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connecting • supporting • informing
ADAPTED RECREATION FEATURE
by Tammie Burak
When Samuel was diagnosed with Severe Global Developmental Delays at the age of four I thought, “What an apt label for his condition.” After all, his disabilities severely affected our plans for global travel and delays of any kind didn’t fit well into our spontaneous, adventuresome lifestyle. I admit, my initial reaction was extremely selfish, but neither my husband Randolph nor I could imagine a world without cycling, backpacking, skiing and other outdoor adventure sports. More than anything, we wanted to share our lifestyle with our children. Samuel met all his developmental milestones very late. He was wobbly on his feet even at the age of four and, by the time he was six, it was obvious he would likely never learn to ride a bike. In fact, he was terrified of anything that challenged his balance and would cry out, “Tippy!” if we tried to set him on any seat high enough to get his feet off the floor. But Samuel liked to ride in the bike carriage, which was a good thing because, of all the sports Randolph and I enjoyed, cycling was our passion. So Samuel rode in the Burley® trailer until it simply couldn’t hold him any longer. We knocked out the rear bar and removed the cargo net so he could stretch his long legs. We folded down the cover so he could sit upright with his head above the frame. Finally, we had to acknowledge it was time for something else. When we started searching for a solution, we found that there were a number of options that would allow us to ride as a family. Here is a sample. Trikes
If your child can pedal, a tricycle will give her the freedom of cycling on her own. Tricycles are stable and can handle a variety of terrains. AMBUCS is one manufacturer. You can get information about the AmTryke on their website at: http://www.ambucs.com/amtryke/ Tandem style
Before settling on the idea of buying a special bike or trailer, we wondered about Samuel’s ability to ride a modified tandem. To test his tolerance of the wobble on a regular bike, we asked him if he’d like to sit up on the seat. He surprised us by enthusiastically riding down the driveway on the seat of his sister’s mountain bike, supported by me on one side and Randolph on the other. Convinced he could ride a tandem, the least restrictive of all our cycle options, we bought a regular Cannondale mountain tandem at a local shop, added a seat with a waist strap, and foot cages with straps on the pedals. Samuel hasn’t looked back. He loves riding his bike with Daddy and can go almost anywhere a mountain/touring bike can go. Buddy Bike makes tandem style bikes specifically for people with disabilities. You can find them at: www.buddybike.com SFM
Before Buying… •V isit local bike shops. Many serious cycle shops have staff who can modify bikes and trailers or know someone with the skills to rig up a solution with bike parts. •G ive it a try. After doing a little digging, we found a couple of families in our area who rode with their special needs children. One owned a Buddy Bike and the other had a custom-made trailer. Both families were more than willing to answer our questions and let us test-drive their bikes. You’ve got to feel comfortable with whatever option you choose. Consider the bike’s geometry, weight and manoeuvrability before putting money down on a bike of your own. •S pecialized bikes and trailers can be very pricey. Check with local service organizations to see if you qualify for a grant.
SPECIAL FAMILIES MAGAZINE May 2011
social stories FRIEND FINDER
Finding Playmates for Your Special Needs Child
by Holly Currah
Kids want to have friends. If you think back to your childhood, some of your best memories are probably those when you were out playing with friends, getting into mischief, riding bikes, building forts or playing sports. Your special needs child isn’t any different; although, depending on their diagnosis, it may be more difficult for them to make friends. For a child with special needs it usually is not automatic. For example, I have a 10 year old grandson who walks out the front door and can instantly make friends with any child close to his age in the neighbourhood, or campground, or playground or class. It seems as though he has a special ‘attraction’ gene that reaches out to other children around his age and it appears effortless. That does not appear to be the case for children with special needs however and in particular with his 13 year old autistic brother. Many times, it is up to the parent of a special needs child to do the ‘work’ of initiating and maintaining friendships. Some children are shunned because of obvious physical differences, while others may have invisible barriers that make it difficult to start and keep friendships. While it is impossible to address the nuances of every disability and every special needs child, here are some tips toward finding friends for your child. 22
Don’t Let Age Get in the Way of Friendships
Generally, friends are usually about the same age. We usually have friends in the same age group as us and our other children are usually friends with children in their age group as well. For a child with special needs, ‘age appropriate’ friends are sometimes hard to find due to a child’s particular deficits or the lack of willing peers. For children who may be developmentally delayed, playing the big brother or big sister role with a younger child can be very rewarding. While they may feel left behind with children in their own age group, with a younger friend they feel a sense of responsibility and, oftentimes, can lead the play activities. This approach has worked very well with my autistic grandson, Ethan. He loves to be able to play with children much younger than he is because his caring, nurturing, responsible side flourishes. He gets a thrill at being able to show a younger child something he is good at or ensuring younger children play safely. Ask to ‘borrow’ a friend’s or neighbour’s younger son or daughter for a trial play date. Be prepared in advance and have
new ‘friend’ to come back or to, in fact, become a friend. Don’t force it; set up the play date, make it short and fun and express your appreciation to the child for coming. Then, a few days later call or send a note to the child and his/her parents, thanking them for coming and mentioning that your son/daughter would love to do it again. Then, invite them again! Find Another Child with Special Needs
some fun activities planned that your child especially enjoys, but would also be appropriate for a younger child. Keep the play date fairly short - about an hour. Ensure that the younger child is also having fun and always provide snacks; they’ll want to come back again! Sometimes having an older friend works equally as well. Generally, older teens or adults are more patient, can listen to stories being told over and over and over and have the social skills to remain ‘engaged’ with your child. In addition, it never hurts for your child to have a trusted adult as a mentor/friend to do activities with away from Mum or Dad. Classmates and School
Your child’s teacher may be the key to finding friendships for your child. He/she sees which children in the classroom go out of their way to talk to or be kind to your child. They see the children who take the time to help your child without being asked. Talk to your child’s teacher about these friendship possibilities. You can start the conversation with the other child’s parents like this: “Mrs. Smith told me that your son and my son really get along in class. I’d love the chance for them to get together.” If they seem at all receptive, make a play date! It also helps to print out a one page info sheet on your child’s disability to give them before the play date. Most parents want their children to be kind, accepting and tolerant. While the initial push may come from the parent, oftentimes the child keeps coming back because they are actually having fun over at your house doing ‘stuff’ with your child. Play Dates
When a new friend comes to play, control the environment to make sure this potential friend has a positive experience. Don’t set up a long play date the first (or even the second or third) time around. Intervene in arguments before they escalate. If your child has difficulty socializing, start out with activities like going to a movie, bowling or swimming – something that has minimal social interaction. Make yourself readily available for the first few play dates and lead the activities. There is a tendency for parents of a special needs child to go overboard at first because they want the
Often your child may be the only child in the classroom with special needs. Don’t you think it would be great for your child to find another with similar issues and interests? Search out organizations and groups for special needs children and get your child involved in some activities. There are groups for nearly every special needs child with activities that are geared towards their particular disability. Who knows; your autistic child may make best friends with a child with Down Syndrome. It’s about the quality of the friendship and not the degree of disability, so get busy and investigate the various groups and activities available in your area. Enthusiast Clubs or Recreational Activities
Your child may have to take up more solitary interests to make up for a lack of friends. There are clubs, organizations and conventions for nearly every interest and every hobby, from kite flying to railways or dinosaurs. Take the time to research local clubs that your child can be involved in. Over time members will get to know your child and ‘regular’ social intercourse will happen. Just being recognized and acknowledged by other ‘normal’ people (adults or children) can be a big boost to a special needs child without friends. If your child plays a sport, take the time to chat up other Mums or Dads at the games and practices. These are people who already know your child and are aware of his/her disability. Parents who are open and friendly at games and practices may be more than happy to have their child attend an ‘after game’ celebration or event at your house. For some children with special needs, attracting and making friends is second nature. For others, it is a painful process which never really gels. As a parent or grandparent, you need to work harder if making friends doesn’t come naturally to your child. In your quest to find friends for your child you WILL run into rejection. It’s easy to become discouraged and give up. Your child deserves to have friends and you have a responsibility to make sure that happens. You WILL find parents who will look past your child’s disability and encourage their child to bond with your son or daughter. You can find that child or adult who appreciates your child for who he/she is. Seize every opportunity that comes your way to initiate friendships and, if it seems none are forthcoming, create opportunities. Your child is worth it! SFM SPECIAL FAMILIES MAGAZINE May 2011
by Racquel Foran
This month people all across British Columbia will participate in a number of Multiple Sclerosis (MS) fundraising events — May is National MS Awareness Month. Nowhere else is this awareness as important as it is in Canada where we have one of the highest MS rates in the world. It is estimated that as many as one out of every 500 people in Canada have MS, and three new cases are diagnosed every single day. This means that in all likelihood most of us know someone whose life is impacted by MS. Jennifer Fraser is one of these people. Jennifer is a 48-year-old mother of three sons. She was diagnosed with MS ten years ago when her youngest son was only two years old. “I remember just not having energy after the baby was born,” she said of her first inkling of a problem. “And it wasn’t normal.” But despite a long year of feeling like something was not right, Jennifer didn’t follow up with a doctor. “I had a new baby and two other sons under the age of four,” Jennifer explained. 24
“Everyone kept saying it was to be expected that I felt tired.” She wasn’t convinced. It was a car accident that finally revealed the truth. She suffered a bad case of whip lash and was seeing the doctor regularly for treatment and follow-up exams. She was at the point where she felt she was on the mend and ready to settle her insurance claim when, “out of the blue my leg felt like it had been soaking in a bucket of ice.” Jennifer said it was a strange sensation, not painful, but “definitely not right.” She reported it to her doctor thinking it was related to the whiplash. He sent her to a neurologist, who ordered both an MRI and a lumbar puncture. She was diagnosed with MS four months later. What is MS?
Multiple Sclerosis is an autoimmune disease of the central nervous system where the protective myelin covering surrounding the nerves of the brain and spinal cord are attacked. The symptoms are unpredictable, but can be quite debilitating.
MS Facts & Stats •M S means many (multiple) scars (sclerosis) • MS was first identified by French neurologist, Dr. Jean-Martin Charcot, in 1868 • MS is most commonly diagnosed in people between the ages of 15 and 40 • Women are three times more likely to have MS than men. •MS is more common in Caucasians than Hispanics, African Americans or Asians •MS is the most common neurological disease affecting young adults in Canada •Countries located further from the equator, with less sunlight and colder climates, have higher MS prevalence than those located closer to the equator with more sunlight •The cost of MS is higher than other diseases because it lasts a lifetime •The cause of MS is unknown; there is no cure Source: MS Society of Canada – www.mssociety.ca
Diagnosing MS is not simple and it can take quite some time before a diagnosis is confirmed. This is because historically diagnoses must include evidence of disease activity separated by time and space. Because more recent studies have shown that early intervention with medications can significantly reduce both the frequency and severity of flare-ups, doctors are trying to confirm diagnoses more quickly than they have in the past. Specifically, doctors are looking for lesions in the central nervous system. If these lesions are causing symptoms the doctors can often trace the symptom back to the nerve and then locate the lesion. If however, the lesion is not causing symptoms, locating them and diagnosing MS becomes more complicated. Doctors use procedures such as Medical Resonance Imaging (MRIs), Evoked Potentials, or Lumbar Puncture to test for MS.
y, Sunda 011 ,2 June 5
Because the disease affects nerves, the symptoms vary greatly from one person to the next. Some symptoms include dizziness, blurred vision, difficulty walking, difficulty talking, cognitive slowness, pain, spasms, weakness, tingling, fatigue, and incontinence. Symptoms come and go and people with MS can suffer from some, all, or any combination of them. This roller coaster of attacks and remissions can add to the stress of living with MS. The good news is that there are now treatments available to manage almost all MS symptoms. Designed to alter disease progression, these medications help people living with MS maintain their quality of life. Living With MS
Much work is being done to find both the cause of MS as well as a cure for it, but until that time comes those diagnosed with the disease must learn to live with it. This isn’t always easy, and, as Jennifer agrees, a good support network is important. It is clear that since the day she was diagnosed her husband has been Jennifer’s biggest support. “I did not get involved with the cause when I was first diagnosed. I felt very isolated. I wanted to vent.” It was her husband who provided her with the companionship and sounding board she needed in those early years. Now she recognizes the value in getting involved. She is part of a support group, Success MS; she takes therapeutic yoga aimed at those with MS, and this year she was a volunteer coordinator at the MS Walk at Ambleside Park. Despite his strong support, Jennifer said that her husband finds the MS Walk difficult because of having to witness the stark reality of how harsh MS can be. “I’m not in a wheelchair, but there are lots of wheelchairs,” she explained. “It’s a club he doesn’t want to belong to, but we do.”
Come run or walk our 5km route or the Thrifty Foods 1km Fun Run! REGISTER AND DONATE ONLINE.
604 875 2444
Continued on page 26… SPECIAL FAMILIES MAGAZINE May 2011
…continued from page 25.
Overall she has had to slow down, which is fine with her. As a family they have adapted well to her limitations. “Sometimes I feel guilty that I can’t do the things other moms can do, but I try not to waste energy on that.” Fatigue is her biggest issue, but she was sure to point out that her sons all understand to give her a break when the fatigue sets in, “they are all really good about it.” Research Progress
Jennifer also counts herself among one of the lucky MS patients who have benefitted from the MS Society’s research. The MS Scientific Research Foundation is pursuing a number of different research avenues. In 2006, Jennifer was one of 30 people chosen to take part in research aimed at replacing the diseased immune system found in MS patients. The treatment involves a combination of aggressive chemotherapy to wipe out the patient’s diseased immune system, followed by autologous (the patient’s own) stem cell transplant. Although Jennifer still has all of the symptoms she had prior to the surgery she considers the procedure a success. Her symptoms are less severe, she has fewer flare-ups and the disease has not progressed. She credits the surgery with changing her life. It wasn’t until after she had surgery that she began to get more involved with MS support groups and causes. Her general improvement has given her more confidence and she now feels less isolated. Jennifer’s story magnifies the importance of well-funded research. Most believe that finding both a cause and a cure isn’t that far away, giving many MS patients feelings of hope for the future. SFM For more information about Multiple Sclerosis, including symptoms, supports, and research, visit the MS Society of Canada at http://mssociety.ca/en/default.htm.
MS in Youth Although relatively rare, MS is diagnosed in children as well. Studies show that between 2.7 and 5% of people diagnosed are under the age of 16. Although one study identified 49 children under the age of six, most youth are diagnosed between the ages of ten and 17. Almost all children with MS are diagnosed with the relapsing-remitting course of the disease. The risk of acquiring MS is greatest for those whose family has several people with the disease. Under normal circumstances the odds of having the disease are 1 in 750, but for the child of a parent with MS the risk rises to 1 in 40. As with adults, most children only acquire a few of the possible symptoms and are usually able to lead full, productive lives. In 2003 the MS Society of Canada and the National MS Society in the US published a handbook entitled Kids Get MS Too: A guide for parents whose child or teen has MS. It is an excellent resource and is available in both Canadian and US versions.
Six Types of MS Relapsing-remitting MS - clearly defined attacks (relapses) followed by partial or complete recovery (remissions). 70% of people have this type of MS at the time of diagnosis. Primary-progressive – diagnosed 10 to 15% of the time, people with primary progressive MS have almost continuous worsening of MS from the beginning with no clear relapses or remissions. Secondary-progressive – approximately 50 % of people diagnosed with relapse-remitting MS acquire secondary progressive MS. Symptoms worsen after 10 years of diagnosis, with increasing levels of disability. Progressive-relapsing – found in about 15% of diagnoses, this type of MS combines attacks with steady worsening and no remissions. Benign MS – 20 to 25% of people diagnosed with relapsing-remitting MS are later found to have benign MS; few attacks with long periods of remission and little disability after 15 years. Malignant MS - rapid progressive disability within five years of diagnosis. It is quite rare. Source: www.msforteens.com
MS Awareness Month – BC Events May is National MS Awareness month. These are some the events taking place around BC. May 1: Scotiabank MS Walk Richmond, Surrey, White Rock, Kelowna, Cranbrook, Nelson, Penticton, Port Alberni, Abbotsford, Chilliwack
May 11: National research teleconference Free to all who register (limited number of lines)
May 4: MS Social Lunch Kamloops
May 14: Mr. Lube Founders Day fundraising event 4% contribution to MS Society for every oil change purchased
May 5 to 8: MS Carnation Campaign Throughout BC
May 15: Scotiabank MS Walk Kamloops and Port McNeill
May 25: May World MS Day Canada-wide
“May Every Day Be Special” Contest Everyone that wants to win prizes, put your hand up... Whoa, high-fives all around! At Special Families Magazine, we are all about being special and we know our readers are special people too. That’s why we’re rewarding all our special readers with the chance to win amazing prizes. A prize for every day in May. That’s right, 31 prizes! To enter, come visit us on Facebook. We’ll meet you there!
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SPECIAL FAMILIES MAGAZINE May 2011
Programs Include: Swimming by Heidi Turner Accessible Rock Climbing AN OVERVIEW OF SOME OF THE AMAZING CAMPING DESTINATIONS FOR KIDS WITH SPECIAL CONSIDERATIONS Arts and Crafts Now that spring is here many youth’s thoughts turn to the upcoming Thanks to the hard work and dedication of individuals, foundations summertime and the fun to be had at summer camps. The same is and sponsors, British Columbia is homeGiant to numerousSwing camps for youth and Lo true of youth who have special needs. Summer camps provide children with special needs. These include Zajac Ranch, Camp Hornby, Eureka and adolescents who have special needs with the opportunity to have a Outdoor Camp and Easter Seals Camps. Music and Drama safe and fun camp experience while also providing some respite for the campers’ families. Outdoor Pursuit BC Easter Seals Camps offers AND MUCH, FREE MUCH
BC Camping Specialists
Kids Love Ca
programs for children andFunteens
Zajac ranch Zajac Ranch, which has been running in Mission since 2004, hosts summer camp programs for children and youth with special needs and chronic or terminal illnesses. Each week has a different focus, including spina bifida week, autism week and Turner syndrome week. The number of spaces for campers varies depending on the special needs or illnesses being facilitated on a specific week. During the burn unit camp, Zajac Ranch can host up to 120 campers. During weeks for spina bifida, the camp can hold around 50 campers. “During some weeks more campers require one-to-one or two-to-one support,” says Executive Camp Director Brandon McClounie. “During those weeks we limit the numbers so we can provide a quality camp experience without hindrance to the camper’s physical concerns or medical concerns.” In addition to arts and crafts and a talent show, Zajac Ranch offers high ropes, fully accessible low ropes, canoeing, kayaking, horseback riding and campfires. “Every child deserves to go to camp,” McClounie says. “At Zajac we can provide character-building experiences while providing the support and medical attention needed to ensure campers have a safe and fun experience.”
Programs Include: Swimming Accessible Rock Climbing Arts and Crafts camp Dates, applications an Giant Swing and Low Rop www.eastersea Music and Drama Easter Seals Camps outdoor Camp Eureka Outdoor Pursuits With three locations—one on Vancouver Island, For children with invisible disabilities—such as ANDADHD, MUCH, MUCH MORE. one in Squamish and one in the Okanagan Valley, Asperger’s, OCD and anxiety—Eureka Easter Seals camps offer a summer camp experience to approximately 850 children throughout the summer. Campers between the ages of six and 18 who have physical or mental disabilities are welcome at the camps, which are completely subsidized by the British Columbia Lions Society for Children with Disabilities.
Camp might offer the perfect camp experience. The camp was designed for children who have Fun difficulty being in other camps; without Eurkea Outdoor Camp, these children and youth might not ever have a camp experience.
“We don’t ask which children qualify for our camp; we ask which child we can be the most beneficial Those who attend camp can take part in rock to,” says Elizabeth Keres, Executive Director of Euclimbing, a fully accessible giant swing, pool reka Camp. “Our campers are cognitively average swimming, canoeing and arts and crafts. to above average, but there is a distinct disparity between intelligence and ability to function withinmore camp Dates, applications and Community is important at the camps, where society. The child with Asperger’s is brilliant at campers can be themselves and not worry about math, but can’t maintain a friendship to save his fitting in, Cheryl Williams, Administrator of the BC life. He has difficulties with social cues.” Easter Seals Camps, says. “The campers make new friends and try new things in a safe environKeres prefers to speak with the potential camper’s ment. Everyone fits in. The staff connects with family or guardian over the phone, before they the campers and have meaningful relationships. fill out the registration, to determine if the camp The campers can have their dreams and we try to is a good fit for the camper. Eureka camp is not help fulfill them.” designed to provide one-to-one support and is not a therapeutic camp, but campers get the opporIn addition to the regular camps, the Easter Seals tunity to enjoy canoeing, kayaking, exploring, arts Camps also offer a Leader In Training program and crafts, outdoor adventures and theme days. for youths aged 16 to 22 who have an interest in leadership skills. The program is open to youth “It’s as close as some of these children get to with or without disabilities. That camp is not fully camp,” Keres says. “They wouldn’t otherwise get subsidized and costs $425. that experience because they need that added adult support. It’s not just important for the chil“The campers talk about the camps year round,” dren. It also gives the parents time to reload beWilliams says. “We hear that some kids pack cause most are exhausted by the school system.” from January for the camps. It also provides some respite for the families.”
Camp hornby For children and youth who are blind, visually impaired or deaf and blind, Camp Hornby offers a unique experience. Operated on Hornby Island, Camp Hornby was started by John Mason in 2002 to offer a camp for children with special needs related to their vision. “I wanted a camp that didn’t reinforce being blind,” Mason says. “I wanted something that wasn’t tailored for blind children. Other children use this facility in the same way our campers do.” Campers at Camp Hornby can come on their own or with their parents, guardians or other family members. Camp Hornby is an outdoor adventure camp with a 50-foot outdoor climbing wall, high rope courses, sea kayaks, a climbing tower for repelling exercises and beach walks. Campers can also enjoy a boat ride around the island, campfire activities and musical performances. Families who come to Camp Hornby can stay in the private camping area, but must bring their own sleeping accommodations. The number of campers who can be accommodated depends on the number of family groups or individuals who attend camp. In 2010, the camp hosted 73 people total, including 29 visually impaired children. Because many children have vision difficulties as a result of a syndrome or disease, the camp is able to accommodate campers who have related medical or cognitive issues, such as seizures. “Camp Hornby is important for the campers but it’s also valuable for parents and sighted siblings,” Mason says. “Often, this is the first time the families are seeing the blind child doing the same activities as the sighted child and they realize that the blind child is no less competent than the sighted child. It reinforces that blind children are not so different from sighted children.”
Zajac Ranch Location: Mission Operated By: Zajac Foundation Special Needs: Depends on the week Campers’ Ages: 7 to 17 years old Dates: Throughout the summer Cost: Varies depending on the week. Every camper is subsidized 50 percent from the ranch or corporate sponsors Special Dietary Needs: The camp can accommodate special dietary needs Applications: Can be found on the website. Deadlines start in April, with each camp week having its own deadline. Campers Come From: Mainly the Lower Mainland but also Northern BC, Alberta and Ontario Website: www.zajacranch.com Camp Hornby Location: Hornby Island Operated by: The Camp Hornby Society in conjunction with The Tribune Bay Outdoor Education Society Special Needs: For children who are blind, visually impaired or deaf/blind and their families Campers’ Ages: No lower age limit, upper age limit is 21 Dates: July 21 through July 25, 2011 Cost: $55 per camper up to $150 per family (three or more people) Special Dietary Needs: Can accommodate dietary needs Applications: Can be found on the website. Deadlines are flexible, although camps do fill up. Applications were open as of January 1. Campers come from: British Columbia What to bring: Families must bring their own sleeping accommodation (such as a tent or motor home), but meals are provided for everyone. Campers can either stay with their families or in the dorms with other campers. Campers must bring their own sleeping bags and pillows. Website: www.camphornby.org
Eureka Outdoor Camps Locations: Squamish and Princeton Operated by: Eureka Camp Society Special Needs: Children with an invisible disability, such as ADHD (diagnosis is not required) Campers’ Ages: Squamish, ages 8 to 12; Princeton, ages 11 to 14 and 15 to 18 Dates: Throughout summer Cost: $750 per week Special dietary needs: Can accommodate dietary needs Applications: Can be found on the website, but Elizabeth Keres prefers to speak with potential applicants by phone first to ensure the camp is a good fit for the camper. Campers come from: Mainly British Columbia Website: www.eurekacamp.ca Easter Seals Camps Locations: Camp Shawnigan (Vancouver Island), Camp Squamish (Squamish), Camp Winfield (Okanagan Valley) Operated by: The British Columbia Lions Society for Children with Disabilities Special Needs: Physical or mental disabilities Campers Ages: Ages 6 to 18 Dates: Throughout the summer Cost: Camps are subsidized. If the camper needs one-to-one support the family must provide that worker and pay the worker’s wages Special Dietary Needs: Can accommodate special dietary needs Applications: Available online; deadlines close as camps fill up Website: www.eastersealscamps.ca
SPECIAL FAMILIES MAGAZINE May 2011
Drumming Up Support FOR MUSIC/MUSIC THERAPY
by Michael Kingscott When former co-worker Chris Weekes and I were asked to facilitate a Hand Drumming Circle at the FASD Conference at Douglas College in October of 2009, we were both admittedly apprehensive. Although we had worked on several musical projects together in the past, those had involved teens and young adults, not a gymnasium full of 6 to 12 year olds with FASD. We really had no idea how we were going to maintain order with the 25 young participants, but decided at the last moment that we would use the sound of the bell we’d brought as the acoustic focal point. “When you hear the sound of the bell, stop whatever you’re doing,” we announced. Much to our amazement, it worked! Without exception, all of the young participants ceased all conversation and movement at the sound of the bell. Each participant was asked to say and ‘drum’ their name going around the circle, which they did with unbridled enthusiasm. Chris and I introduced various beats, which they were asked to imitate - more unbridled enthusiasm and unexpected precision. The sound of the bell, and once again all movement and sound stopped. Now Chris and I were amused. We had the participants move around the circle as the drums remained stationary so that they had a chance to try each and every drum. The sound of the bell and all stopped. Then we asked each one to initiate their own personal beat, which we would all attempt to synchronize with. At this point Chris and I were astonished. The variety and complexity of the rhythms exceeded all of our expectations. We broke into laughter often and marveled at the richness and texture of the sounds emanating from the gym. The sound of the bell and all stopped. We ended the 2 hour session wishing that we could have 30
given out a hand drum and a certificate for music lessons to each and every one of our young musicians, as it was obvious some of them were naturally gifted. We went back the following year and repeated the venue, this time with gleeful anticipation and the results were similar. Several workshops followed at the Children’s Foundation, attended by children with a wide range of special needs: FASD, ADD, ADHD, ODD, Autism, Trauma, etc. Each time it became obvious that these were children with not only special needs, but in many cases, special abilities as well. There has been encouraging research recently concerning the effects of music on the brain. The research indicates that music combines different frequencies that cause a complex set of reactions in the brain. When neural pathways are damaged for one function such as language, musical neural pathways are actually much more complex and much more widespread within the brain. Music seems to find re-routed paths in terms of brain functioning,” according to Doctor Wendy Magee, London’s Institute of Neuropalliative Rehabilitation (CNN article, 2009). The 2006 Symposium at Sanford’s Center for Computer Research in Music and Acoustics agreed. Harold Russell from the Department of Gerontology and Health Promotion of Texas Medical Branch at Galveston stated at the Symposium that, “brainwave entrainment is still in it’s infancy, but advocates hope that it may prove a cheap, safe and effective way to treat neurological disorders from depression to ADD and even prove invaluable in repairing brain damage.” A 2004 study at McMaster University found that brain responses to piano, violin and pure tones in four and five year old children who received exposure
to music in their homes showed enhanced brain auditory activity, comparable to that of unexposed children three to four years older. BRAMS, located in Montreal and jointly affiliated with the University of Montreal and McGill, with a focus on neuroscience, relates the following benefits of music: increases serotonin levels, with a positive effect on memory, learning, mood and sleep patterns; releases endorphins, speeding up the body’s healing process; reduces cortisol levels, reducing the effects of trauma and PTSD; triggers neurons and brain cells required for sharp memory; produces higher levels of alertness and concentration, particularly in drumming.
…research indicates that MUSIC combines different frequencies that cause a complex set of reactions in the brain. While one doesn’t need special accreditation or training to explore the benefits of sharing music with children, it should be noted that only Registered Musical Therapists are qualified to do Music Therapy. Five Universities in Canada offer degree programs in Music Therapy - Acadia, Capilano and Windsor Universities offer B.A.s, Wilfred Laurier and Concordia Universities offer B.A.s and M.A.s. Universities elsewhere offer PhDs. Music Therapy is widely used in Palliative Care and Nursing Homes, Addiction Recovery, Hospitals, Psychiatric facilities, Prisons, as well as in work with Down Syndrome, Autism, Alzheimer’s and Parkinson’s. Music Therapy is currently not covered by BC Medical or extended health care plans, but funding can be accessed through Variety Club, CKNW and the BCGEU. Block funding for parents/guardians may be accessed through the Ministry of Children and Families as an Autism Related Intervention. In the USA many individual States fund Music Therapy through Medicare and Medicaid, as well as private insurance companies. The apparent discrepancy between the USA and Canada, in terms of public funding for Music Therapy, reminds me of the time before Acupuncture had gained enough official credibility to be funded by BC Medical. I suspect that as research continues to show that music has demonstrative positive effects on the brain funding issues will be reassessed accordingly, much as it was with Acupuncture. While our children often have extensive and well documented Presenting Issues and Special Needs, their Special Gifts are sometimes undiscovered. As Caregivers and professionals dealing with children, it is our responsibility to explore and exploit these gifts. We don’t need musical training ourselves to do so. Simply give a child a hand drum, put on some music and observe the enthusiasm knowing that the brain is undergoing a magical and musical transformation. sFm
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SPECIAL FAMILIES MAGAZINE May 2011
Exceptional Family Travel Resources and advice for families with special considerations
by Cindy Kavanaugh
When Brenda Palmer took her infant son to visit relatives overseas six years ago, she knew the trip should have gone a lot smoother. “We went to England where his grandparents live and I couldn’t figure out why he wasn’t handling it and why he was acting up,” said Palmer, a Calgary-based travel agent with Travel Professionals International whose eldest son Kyle, now 7, hadn’t yet been diagnosed with autism spectrum disorder. Once she learned of his autism, she was better able to plan family trips to help keep him calm and occupied. “The second and third time we went on vacation he was in school and was better prepared to handle travel,” she said in a telephone interview. “I had come up with ideas to make the airplane ride more enjoyable.” Palmer, 34, quickly realized that other families with special needs children could benefit from her experiences. Although much of her business is focused on destination weddings, she began marketing herself as a travel agent for families that want to take their children with special needs to an all-inclusive tropical resort, to the magical land of Mickey Mouse or to any far-flung destination they desire. She is eager to grow her business by helping special families in Western Canada plan their getaways. “We all need a break and we don’t always have the time to do the research and that’s what I’m here for,” she said. 32
For many people, family vacations are a given. For those with special needs children, the notion of travelling as a family becomes somewhat trickier. There are an estimated 535,000 Canadian children and youth under age 20 who have some form of disability, including health problems or chronic long-term health conditions, long-term emotional, psychological, nervous or mental health conditions and learning disabilities, according to a 2001 study by the Canadian Council on Social Development in Ottawa. According to 2010 Legacies Now, a non-profit organization that aims to make B.C. more accessible for all travellers, those with
For many people, family vacations are a given. For those with special needs children, the notion of travelling as a family becomes somewhat trickier. accessibility needs make up one of the fastest-growing tourism markets. In North America, people with disabilities spend more than $13 billion each year on travel. The tourism industry is slowing taking notice. There are a growing number of travel agents, hotels, resorts, cruise lines and tour operators offering special needs-friendly getaways and accommodations. Accessible travel expert Candy Harrington, who lives in Ripon, Calif., said via email that the best destinations for folks on the West Coast depend on what the family members like to do. “Everyone has different tastes,” she wrote. “If you’d like a beach vacation, then try San Diego. They have a number of beaches that have power beach wheelchairs for loan, plus accessible attractions such as San Diego Zoo, Balboa Park and Marine World, and a nice accessible public transportation system. “If you’d like a traditional family getaway, Yellowstone National Park and Grand Canyon National Park both offer accessible lodging, trails and scenic drives. St. Louis is also a pretty fun city for kids. I absolutely love their City Museum - it’s a great kids’ museum. “And if you just want to get away from it all, then consider taking a cruise. Royal Caribbean has some great kids’ programs - they’re fun and accessible.” In fact, she said, the possibilities are endless, and that’s why she wrote 101 Accessible Vacations: Travel Ideas for Wheelers and Slow Walkers (http://101accessiblevacations.com). Harrington has written several popular accessible travel books, including the classic Barrier-Free Travel: A Nuts and Bolts Guide for Wheelers and Slow Walkers (http://barrierfreetravel.net), and she blogs at http://emerginghorizons.com. When it comes to exploring the great outdoors, Harrington said there is a ton of information available to help you plan your trip. “Well, the U.S. National Park Service (www.nps.gov) puts access information on each park website, so that’s a good place to start your research,” she wrote. “Also, if it’s your first trip, I’d definitely stick closer to home, just so you have a safety net. I’d recommend an overnight stay in a hotel near home, just to work out the bugs.” For those who want to stay on this side of the border, Parks Canada (www.pc.gc.ca) offers accessibility information on all of its 42 national parks, 167 national historic sites and four national marine conservation areas on its website.
Booking a place to stay that’s accessible is usually the biggest concern for national park visitors. In Western Canada, the best bets for accessible camping are found at Lake Louise Campground in Alberta’s Banff National Park and Illecillewaet Campground at Glacier National Park in B.C.’s interior. Accessible campsites can be requested when making a reservation and are available on a first-come, first-served basis. Accessible services and facilities vary from park to park, but most parks offer an accessible visitor centre or interpretive centre, as well as accessible trails, washrooms and picnic areas. Some parks even offer little extras. Pacific Rim National Park Reserve offers beach wheelchairs, with larger wheels to go over soft sand and gravel and three paved, wheelchair-accessible trails, while Kootenay National Park and Glacier National Park have all-terrain wheelchairs available, but a companion must manually operate these. Gulf Islands National Park Reserve, on the other hand, is somewhat limited in terms of accessible sites, especially sites for overnight camping. That’s because most camping sites are backcountry with limited facilities, except for McDonald Campground. It’s located on Vancouver Island just south of the Swartz Bay ferry terminal, which has accessible washrooms and wheelchair-friendly picnic tables but does not offer hookups or shower facilities. “Families with access challenges who want to visit Gulf Islands National Park Reserve can go to some of the main day-use areas via BC Ferries, where they can drive to a picnic area with beautiful views and can access some of the shorter trails; however, not all locations have accessible washrooms,” said Bernadette Horne, a Parks Canada spokeswoman in Calgary. Georgina Point on Mayne Island offers a half-kilometre informal trail around the site and a picnic area with spectacular views of Active Pass, a great place to watch the birds. And although East Point on Saturna Island has a one-kilometre mowed grass trail and is an excellent spot for viewing whales and sea lions, it does not have accessible washrooms. SFM
SPECIAL FAMILIES MAGAZINE May 2011
Mickey’s Magic By Cindy Kavanaugh
If waiting in line for Space Mountain isn’t an option for your child, be sure to take advantage of Disney’s Fastpass service. It’s a complimentary benefit to all park guests that allows you to enjoy the rest of the Disneyland Resort while your place in line is saved.
Disneyland (http://disneyland.disney.go.com) in Anaheim, Calif., a popular vacation spot for families in general, is also a good choice for special families, Calgary-based travel agent Brenda Palmer said. Get thinking about the trip by ordering Disney Parks’ vacation-planning DVD. It’s free to Canadians (one per household) and includes a tour of Disneyland Park and Disney California Adventure Park and three resort hotels at the Disneyland Resort in California. It also features a tour of Walt Disney World Resort in Florida, as well as tips on making your trip more affordable, pocket-sized planning guides and information on special events. Once you’ve decided on Disney, start preparing your child for what to expect. Depending on your child’s needs, you may want to walk him or her through what it will be like going to the front gate and talk about all the sights, sounds and tastes he or she may experience. Discuss the characters that are at Disney and explain that he or she may only see a couple each day and that they aren’t all there every day. Don’t make any specific promises about the characters he or she will see. Before you go, download the appropriate documents from http://disneyland.disney.go.com/plan/guest-services/ guests-with-disabilities. Disney offers detailed information for guests using wheelchairs and electric convenience vehicles and outlines its services for guests with hearing disabilities, visual disabilities and service animals, as well as details on show lighting effects for those with sensitivity to light. Although it isn’t Disney’s official website, Teri’s Disney Travelers’ Disability FAQ (http://pixiedustinn.com/disabilitiesfaq/DisabilitiesFAQ.html) offers a good roundup of tips and links for additional information for those heading to Disney. When you get there, be sure to check in with guest services for additional assistance. If waiting in line for Space Mountain isn’t an option for your child, be sure to take advantage of Disney’s Fastpass service. It’s a complimentary benefit to all park guests that allows you to enjoy the rest of the Disneyland Resort while your place in line is saved. At specific attractions you’ll get a Fastpass ticket with a return time. Then, you’re free to explore the rest of the park. Return to the attraction by the specified time, get in the Fastpass Return line and you’re in. Those with special needs children may also want to inquire about the Special Assistance Pass at Disneyland. At Walt Disney World, it’s called a Guest Assistance Card. To get this card at Disneyland, stroll into City Hall, the first building on the left through the main gate and tunnel, and ask for one. It’s not a front-of-the-line pass, but it will allow access to alternate entrances to rides and a quiet place to wait if noise concerns your child. Ask the cast members at each attraction how to proceed with this card. People in wheelchairs generally don’t need this pass, as most attractions have wheelchair access gates. SFM
Making the journey
By Cindy Kavanaugh Whether you’re planning to explore the great outdoors, tackle the rides at your favourite amusement park or take a road trip to a big or small town, preparation is the key, said accessible travel guru Candy Harrington. “First off, I always advise people to do a lot of pre-trip research,” she said via email. “That way, you’ll know what to expect when you get there. Plus, it can be kind of fun to involve the whole family in the trip-planning process. The Internet has a lot of resources and you can actually see photos of accessible hotel rooms, so you can tell if they will work for you. Remember to ask a lot of questions. “But don’t over plan things. Make it a leisurely schedule - and leave lots of time for unexpected delays. This is especially true when travelling with children who are disabled. “And last but not least, I advise folks to play a healthy game of ‘What If…?’ before they depart. Ask yourself some ‘What if . . .?’ questions and devise solutions to them. For example, ‘What if your child’s wheelchair breaks while you’re on vacation?’ A good solution to that problem would be to find a wheelchair repair place at your destination and carry their phone number with you. That way, if something goes wrong, you’ll be prepared.” Here are some tips to make the journey more pleasant for all: • Talk to your child about the trip and include him or her in the planning. • Let your child help with the packing. Be sure to start several days ahead. • Watch online videos and DVDs, which may be available for loan at your local library or from your travel agent, and look at photos of your destination and accommodation before you go. • Make a storybook with pictures and descriptions of the vacation - from start to finish - and read it with your child. Depending on your child, you may want use the storybook to cover each day’s activities. • Be sure to choose an appropriate destination. If your child loves water, for example, consider some place with a beach or pool. If your child likes quiet, cross amusement parks off your list of possible destinations. • Try to schedule the vacation during the off-peak season when crowds are less. • If your child has special dietary needs, consider staying in a vacation rental instead of a hotel. That way you’ll be able to prepare some of the meals yourself. • If you’re staying in a hotel, reserve a room on the quieter side of the building and try to time your arrival close to check-in time or at a time when the hotel is less busy. • If you’re flying to your destination, arrive at the airport early and tell the airline at check-in and the flight crew upon boarding about your child’s disability. • Bring a copy of your child’s diagnosis or a letter from his or her doctor explaining the condition and be prepared to show it to avoid long lines at the airport, your hotel or an amusement park. • Take along some comforts of home, such as favourite clothes or toys and DVDs of favourite movies or TV shows. SFM
On the web Accessible Tourism in BC, Canada (www.accessibletourism.ca): For those wanting to try a trip closer to home, think of this site as Whistler for the Disabled. It features links for accessible accommodations, restaurants, transportation, recreation, adventures and more. Among the adventures are: bungee jumping from a wheelchair for the mobility restricted and zip lining high in the treetops between Whistler and Blackcomb mountains for those who are deaf, hard of hearing or visually impaired. Autism on the Seas (www.alumnicruises.org/Autism/Autism_Home. htm): Alumni Cruises, a booking agency in Shelton, Conn., offers group cruises with or without autism group specialists on board, as well as individual cruises. It services the cruising needs of those with autism and Asperger syndrome, as well as cerebral palsy, Down syndrome and other cognitive, intellectual and developmental disabilities. Emerging Horizons (http://emerginghorizons.com): Candy Harrington blogs about accessible travel here. The site also offers visitors a subscription to Emerging Horizons Accessible Travel News, an online quarterly magazine. Five issues costs $16.95 US, or get 10 issues for $33.90 US. 22 Accessible Road Trips (http://22accessibleroadtrips.com): Harrington’s next book, 22 Accessible Road Trips: Driving Vacations for Wheelers and Slow Walkers, will be published in summer 2012. SPECIAL FAMILIES MAGAZINE May 2011
Life With Lupus Facts About Lupus Lupus is known as the disease of 1,000 faces because it affects each person differently. Patients who have lupus often experience three phases of the disease. The flare-up phase involves severe, acute symptoms that may require medical attention. In the chronic phase, patients may experience symptoms, but at a lower severity than in the flare-up phase. In the remission phase, symptoms may disappear but can come back. by Heidi Turner
May 10, 2011 marks World Lupus Day and in honour of the day people across Canada will participate in the 10th anniversary of the Walk for Lupus. One of those people is Jackie Nakamura, from Surrey, B.C. Jackie, now 23 years old, was first diagnosed with lupus at age 17. She has participated in the Walk for Lupus every year since she was diagnosed. Lupus is a chronic autoimmune disease that can affect any part of the patient’s body, including organs, skin, brain and bones. According to Josie Bradley of The Lupus Society, thousands of British Columbians are affected by lupus, in which the immune system is not able to tell the difference between foreign bodies and the patient’s own tissue. This causes the immune system to target the patient’s tissue, resulting in inflammation. Symptoms include joint pain, hair loss, a red rash on the upper cheeks and extreme fatigue. The cause of lupus is not known and there is currently no cure. “The fatigue was a major symptom,” Jackie says. “I would sleep for the entire day because I was so exhausted. It affected getting my work done. If I had arthritis in my fingers it was hard to write, so that made it difficult for me to do my homework. It was hard to do activities after school with friends.” Diagnosing lupus can be difficult because each person experiences different symptoms and because doctors may not be aware of the disease. Having a diagnosis as soon as possible is vital, especially in children with lupus because the disease can cause serious problems that can be life-threatening if not treated. Fortunately, patients who experience complications of lupus, such as kidney problems, can be treated for those complications. Unfortunately, even with treatment patients who have lupus experience cycles where their symptoms flare up, causing severe pain. “You don’t always know when you’ll have a flare-up and not be able to do an activity,” Jackie says. “Letting people know you have lupus can help relieve your insecurity about it and let them know what’s going on with you. That was hard for me in high school. I didn’t know much about it myself and I didn’t want people to know when I didn’t fully know about it. When I learned more about it, then I started to tell people.” For more information about lupus visit www.lupuscanada.org or www.bclupus.org. For more information about the Walk for Lupus, visit www.walkforlupus.ca. SFM 36
Symptoms of lupus that may be experienced (but are not experienced by everyone) include: • Joint pain • Hair loss • Red rash on upper cheeks and bridge of nose • Extreme fatigue • Unusual reaction to sunlight • Red, scaly skin rash, • Small ulcers inside nose or mouth • Chest pain that becomes worse when lying down or when inhaling • Swelling of feet and legs • Seizures or severe neurological symptoms
Walk for Lupus The Walk for Lupus (formerly called Walk a Block) is celebrating its 10th anniversary this year. It now occurs at 35 locations across Canada. In 2010 the Walk for Lupus raised $317,000, exceeding the goal of $300,000. This year the goal is $345,000. Ten percent of the net revenue of the walk goes to lupus research. The rest of the proceeds go to Lupus Canada’s mission, which is to promote advocacy, education and public awareness about lupus. This year, those who want to participate but cannot physically attend a walk can participate in a virtual walk, which allows them to fundraise as though they are participating in a physical walk.
Winning at Life by Debbie McKeown
It’s easy to get excited about the 2011Special Olympics World Summer Games when you consider the scale of this global event. This summer from June 25 to July 4, 7500 Special Olympics athletes from all corners of the globe will converge on Athens to compete in a variety of sports. Greek Games organizers are proudly declaring, “Our nation will host the biggest sporting event worldwide for the year 2011!” Canada is sending 109 athletes to the Games, including 35 from BC. International competition is one of the many opportunities Special Olympics provides to athletes with intellectual disabilities. The organization was founded in 1968 by Eunice Kennedy Shriver, sister of American President John F. Kennedy, with the vision of giving people with intellectual disabilities opportunities to build self-confidence, create pride and open doors to a positive future. Special Olympics now operates world-wide with more than 3 million athletes experiencing joy and life-changing skill development through sport. Special Olympics BC is supporting an impressive 3800 athletes. Athletes consistently report on the huge impact Special Olympics has on their lives. Marc Theriault from Surrey will be travelling to Greece as a member of Team Canada to compete in soccer. Marc says, “Special Olympics has improved my life so much. When I was younger I played generic sports and was often at a lower level than others on the team. I wasn’t always given a chance. With Special Olympics there are no favourites. Everybody gets an equal chance.” Bridget Colvin, a confident young athlete from Burnaby laughingly remembers hiding behind her mother the first time she went to a Special Olympics practise. She has since honed her skills in several sports, competed at a high level, travelled and made friends from all over the world. Children as young as two years old can become involved with Special Olympics’ Active Start, a lively program that encourages motor skills, fitness, social aptitude and athletic development. FUNdamentals is a similar program for older kids. Special Olympics BC recently received significant support from a major donor, allowing even greater expansion of their youth programs. When athletes are ready to graduate from the youth programs, Special Olympics offers a full roster of summer and winter sports for athletes of all ages and all ability levels. One key contributor to the success of Special Olympics is the high-quality coaching available to the athletes. Volunteer coaches are provided with extensive training through the National Coaching Certification Program, ensuring a quality experience for coaches and excellent benefits to the athletes.
Heather Young, a Special Olympics BC swim coach from Langley who has been selected to help guide Team Canada’s swimmers in the 2011 World Games, has been involved with Special Olympics for eight years and finds continual inspiration in the achievements of the athletes she coaches. “It is the day-to-day accomplishments of the athletes that keep me motivated. Many of them have overcome so much in their lives, yet they have an amazing capacity to find joy and humour in almost every situation.” But it’s more than that. “As these athletes build skills in sport, they are also changing attitudes, breaking down barriers and empowering themselves to take on the world with confidence and pride.” So, how does a Special Olympics athlete progress to international competition like this summer’s World Games in Athens? Athletes sign up to participate in weekly practises in their communities in one or more sports. While they are opening up new worlds of skills, friendship and fitness for themselves, they will also have opportunities to compete at the local level. From here they can qualify to move up to provincial, national, and eventually, international competition with four-year competitive cycles ongoing in both summer and winter sports. Dedicated athletes like Marc and Bridget love to show you the collection of medals and ribbons they have won at various events. But Special Olympics isn’t all about bringing home hardware. As long-time Special Olympics soccer coach Jerzy Kusmierek points out, “Whether they win a medal or not, I think we’ve demonstrated that it is the abilities rather than the disabilities of these athletes that deserve attention. They are winning at life.” To learn more about Special Olympics BC, log onto www.specialolympics.bc.ca. SFM Follow the excitement in Athens from June 25 to July 4 as Marc Theriault and the Special Olympics BC Surrey soccer team seek to defend the gold medal they won four years ago at the Special Olympics World Summer Games in Shanghai! Cheer on all of BC’s amazing athletes and check their results on Special Olympics BC’s website (above) and on the World Games site www.athens2011.org/en. SPECIAL FAMILIES MAGAZINE May 2011
Meaning by Corrine Ritchie
What does special mean to me? You might assume that as a mother of two “special needs” children my immediate response would be that my children’s needs are special. It isn’t. What I consider special is what they accomplish in their everyday lives. My daughter learning to read and write when the doctors said she wouldn’t, was special. Having my son recover from a seizure which almost claimed his life truly defies measure. We value every moment with our kids, whether that particular moment is big or small; moments that other people may simply overlook. Seeing my son seizure at his lacrosse game and then managing to get up and continue his game was special. Having my children go an entire day without a seizure is special. The day I became a mother, I learned the true definition of what special is. I was blessed with children whose lives are filled with complex challenges and each day they wake up facing these challenges simply by doing the best they can, showing what they can do, as opposed to what they can’t.
Our lives have been made even more special by the team of doctors, nurses, aides and support people that help my children live their lives to their full potential. We have family and friends who support us in good times but also during times of crisis and they are special to us. My children have formed a special bond with all of these people- they are loved by them, they have helped to educate them, changing their views and ultimately changing them; that is special. My children are ‘special’, but not in the way society sees them. They do have special needs, but they are not special needs.
The dictionary defines special as “something of great value” and that is indeed my children’s lives. Corrine, New Westminster, BC Mom to Taylor and Nathan
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SPECIAL FAMILIES MAGAZINE May 2011
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Published on May 20, 2011
Published on May 20, 2011
BC's Amazing Special Needs Resource! Featuring "news, views, reviews and things to muse" all from the world of special needs parenting in Br...