Special Families Magazine May 2011

MA

Y 2

011

• V

OLU

ME

1 •

ISS

UE

1

Premiere issue

connecting • supporting • informing

Presented by:

3SPECIAL FAMILIES MAGAZINE May 2011

8 Special Finds

9 Through the Years

1 0 In the Community

1 2 Spotlight

1 5 Social Stories

3 8 Special Meaning

News, views, reviews and things to muse all from the

world of special needs


Departments

10

9

Contents

2011

rESPitE rEfrEShErGet the respite rundown with our

in-depth feature all about respite14

ExCEPtionAL fAMiLy trAvELResources and advice for families with

special considerations32

DruMMing uP SuPPortFor music/music therapy 30

BC CAMPing SPECiALiStSAn overview of some of the amazing camping destinations for

kids with special considerations28

MS AWArEnESS24

LifE With LuPuS36

Winning At LifEWith the Special Olympics34

grEAt ADAPtAtionSAdapted recreation feature18

14

32

18

on the cover:Parents Nat and Ryan, with children Nola, Ethan and Aris.

Cover photo by Amy Hockley.www.capturedbyamy.com

MA

Y 2

011

• V

OLU

ME

1 •

ISS

UE

1

Premiere issue


SPECIAL FAMILIES MAGAZINE May 2011

4 specialfamiliesmagazine.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.

Special hopes.

Special dreams.

Special needs.

Special place in my heart.

Nat MountainPublisher/Managing Editor

Editor’s MessageVOLUME 1 • ISSUE 1

Unit 114, 42 Fawcett Rd

Coquitlam, BC V3K 6X9

Call 1.866.325.1522

www.specialfamiliesmagazine.com

[email protected]

Publisher & Managing EditorNat Mountain

[email protected]

Art Director & LayoutRommel Ramirez

[email protected]

Editorial AssistantKim Patterson

[email protected]

Sales & Administrative CoordinatorKatie Isenor

[email protected]

Advertising Account ExecutivesDanielle Dionne

[email protected]

Katie Isenor

[email protected]

Staff WritersKim Pemberton, Racquel Foran, Heidi Turner,

Cindy Kavanaugh, Chris Byrnes

ContributorsElisabeth Walker-Young, Holly Currah, Tam-

mie 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

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

to be inappropriate for our family-oriented

readership.

Give the gift of routine &organization to your kids!

www.easydaysies.com

PO Box 2023, Chilliwack, BC, V2R 5Z7, www.holisticfundraising.com

fundraising company we are donating $1000

Want a GREENERway to FUNDRAISE?

Our online catalogue o�ers a variety of organic, healthylocally made products. 30% of each order goes to the charity of your choice. Ask us how you can win $1000!


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 sup-

port 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)

enthusiasmFOR SPECIAL FAMILIES MAGAZINE

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 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)

MA

Y 2

011

• V

OLU

ME

1 •

ISS

UE

1

Premiere issue


As a grandmother to a ‘special’ special needs boy, I am thrilled there will

fi nally 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 benefi t 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

E-mail us at [email protected] with your

comments, questions and suggestions and we’ll be happy to

publish it!


Your generous donations help us to make a di�erence 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

Support Brain Injury Prevention & Awarenessthroughout BC by supporting the

BC Brain Injury Association.

Fresh All-Inclusive

Value604.524.978850 Eighth Street

New Westminster

www.osf.ca

Want to reach an estimated 100,000+ readers per issue?E-mail us at [email protected] to book your ad or send us any advertising enquiries.


special finds

BodySox™ We thought this item was interesting, if a bit odd look-

ing at first. The online description encourages users

to “Climb inside and explore your own space” noting

that “the stretchy material gently resists your move-

ments 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 vari-

ety 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 fab-

ric 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 sooth-

ing side-effect.

Where to buy: www.specialneedstoys.ca search “Body Sox”Price: From $120 including taxes (free shipping)

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

Shut Up About Your Perfect KidA Survival Guide for Ordinary Parents of Special ChildrenWritten 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.caPrice: Approximately $20.00

EVERY ISSUE WE TEST, READ, SAMPLE OR VISIT PRODUCTS AND SERVICES OF INTEREST TO OUR SPECIAL FAMILIES. HERE’S WHAT WE FOUND THIS MONTH...


throUGh the years

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 ac-

companied 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 expe-

rience 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 Entertain-

ment 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 wheel-

chairs 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 Wheel-

Voices 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 oth-

ers 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 chal-

lenges 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.

by Chris Byrnes with Sarah Lapp

Sarah LappIS FOLLOWING HER HEART AND FULFILLING HER DREAMS

Sarah’s beautiful smile, captured by photographer Rick Etkin in a studio shot from the 1995 Show of Hearts Telethon.

Sarah, now a successful young woman, has a lot to smile about, captured here in a 2008 photo by photographer Jamie de Champlain.


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 slower-

paced 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

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 dif-

ferent 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 bas-

ketball, soccer, running, biking and swimming. You name it, she

in the community

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.

by Kim Pemberton


in the community

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 be-

cause 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 fi gured strongly in this special needs world

and, in fact, she was the reason I fi rst found out we were in Hol-

land 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 fi lm, 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 ad-

vocate 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 partici-

pation 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.

“ Why would she even need an ADVOCATE?

Wouldn’t services be there automatically for

children with DISABILITIES?”


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 Chediak-

Higashi Syndrome (CHS). CHS is characterized by

a low functioning immune system, a lack of blood

clotting abilities and occulocutaneous albinism (be-

ing albino) as well as the development of progressive

neurological issues including decreased cognitive

function, nerve damage and muscle weakness.

Patients with the illness typically die of overwhelm-

ing 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 fi rst 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

Travelling Treasures Boutique

spotlight

by Selena Tenhoeve

SHEDDING LIGHT ON LESSER-KNOWN DISABILITIESIN OUR COMMUNITY

Fraser Heights Out of School Care

Licensed Group &

Out-of-School Care

Serving Fraser Heights in Surrey

Contact Kelly at 604.582.1335


For birthday parties and special events, Zox of the Forest o�ers 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.

Zox of theForestFor birthday parties and special events, Zox of the Forest o�ers very interactive

Zox of theForestZox of theForest

pneumonia and a terrible fungal infection. Having had che-

motherapy to knock out his immune system and with only his

Chediak-Higashi cells coming back, he became extremely ill and

spent his fi rst 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 hospi-

tal, 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! Thirty-

seven 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 trans-

plant 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

diffi cult 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 fi rst

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

“ 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.”


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 par-

ticularly true for those who care for someone with special needs.

Respite services are available for exactly this reason, to give care-

givers a much-needed break from their 24-hour responsibility.

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 long-

term respite services, provided both in-home and in the commu-

nity. 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 mem-

bers have a right to respite funding and they should take full ad-

vantage 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 re-

spite is an important part of maintaining a healthy household dy-

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.”

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 encepha-

litis. His symptoms include brittle diabetes, intractable seizures,

and developmental delays. His medical treatments are compli-

cated 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 exhaust-

ed,” 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.”

by Racquel Foran

Respite RefresherGET THE RESPITE RUNDOWN WITH OUR IN-DEPTH FEATURE ALL ABOUT RESPITE


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 for-

ward 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 pro-

vides 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 non-

verbal 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 pro-

respite as WorkRespite 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 work-

ers would earn between $100 and $120 for

a 24-hour period and between $10 and $14

for hourly work.

Caregivers are not employees of the govern-

ment 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 orga-

nization they receive both WCB and liability

insurance coverage. For families, the organi-

zation takes on the heavy load of screening

and matching workers, ensuring qualified,

security-screened people are found.

There is a long screening process includ-

ing 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 Peder-

sen said that when she is screening candi-

dates 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.

innovative technologiesThere 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.

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.

Continued on page 16…


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 commu-

nity 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 ProgramCommunity 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 re-

apply. 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 LinksThe 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.

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.

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

…continued from page 15.


Interviewing Respite ProvidersWhen 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 ref-

erences 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 in-

home 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/ChoosingaCaregiv-

er2009.pdf

Sites that may be helpful: http://www.supportworkercentral.com/

http://www.communitylivingbc.ca/


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 Mansfi eld, 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 confi dence 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

confi dence, 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, certifi cation, 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.

SportAbility BC ProgramsSledge Hockey

SportAbility BC offers this exciting sport to

persons with or without physical disabilities.

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 fl oor.

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 fi nd out more about these great sports,

please call 604 599-5240 or visit

www.sportabilitybc.ca.

by Caitlyn O’Brien

adapted recreatIon FeatUre

‘Snowbility’ Sensation

SportAbility is a multi-sport organization that provides recreation and sport opportunities for all people with physical disabilities.

Love Sports? Join In the Fun!

Get active and get involved with SportAbility as an athlete, volunteer, coach, official, or sponsor!

www.sportabilitybc.ca

Call 604-599-5240

“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

Mansfi eld. “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


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 disappoint-

ing 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 dedi-

cated to children with a disability,

and the list goes on. That list also

includes families, guardians and

caregivers. A common struggle for

family units with children with

and without a disability is access

to recreation programming that

meets everyone’s needs.

Curl BC has developed CAN Curl,

an adaptive curling program for

children and youth with a disabili-

ty. 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 suc-

cessful 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 par-

ticipate 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 fi rst 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 com-

forting. 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

interested in adapted curling programs for

your child?Contact Elisabeth Walker-

Young at Curl BC for more

details on how you can get

your family involved.

[email protected]

604-333-3622

1-800-667-2875

Can Curl

CURLINGGIVE IT YOUR BEST SHOT

www.curlbc.ca1-800-667-2875

TraditionalWheelchairFloor, StickDeaf, Blind

Special OlympicsAll ages

by Elisabeth Walker-Young

Special Families Magazine Subscription Form

Yes, send me 10 issues of Special Families Magazine for only $30.00*.

I am ordering this subscription as a gift

*Annual subscription including postage and packing is $30 per year plus HST to any Canadian address

Please fi ll in the form below in block letters:

Subscription Form

www.specialfamiliesmagazine.com

* Please fi ll out a separate form for each subscription.

Special Families Magazine will ship out the next available issue after payment is processed.

My payment for $33.60 ($30 subscription rate plus 12% HST): is enclosed, a cheque for $33.60

(made payable to: The Special Success Group)

has been paid by e-mail money transfer from ____________________

(insert e-mail address) to [email protected] with

password ____________________.


Purchaser's Name:

Recipient Name (if this is a gift subscription):

Address where SFM will be delivered to (if this is a gift subscription):

Purchasers E-mail: Purchasers Phone:

Address: City:

Province: Postal Code:

E-mail: Tel:

Mail subscription form and cheque to:Special Families Magazine

c/o The Special Success Group

Unit 114, 42 Fawcett Rd, Coquitlam, BC

V3K 6X9

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

“

Media Kit 2011.indd 5 5/10/11 10:37 AM


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, adventure-

some 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 informa-

tion 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

Pedal Poweradapted recreatIon FeatUre

by Tammie Burak

Before Buying…• Visit local bike shops. Many seri-

ous cycle shops have staff who can

modify bikes and trailers or know

someone with the skills to rig up a

solution with bike parts.

• Give it a try. After doing a little dig-

ging, 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 manoeuvrabil-

ity before putting money down on a

bike of your own.

• Specialized bikes and trailers can

be very pricey. Check with local

service organizations to see if you

qualify for a grant.


Your special needs child isn’t any different; although, depend-

ing 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.

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

Finding Playmates for Your Special Needs Child

social stories

by Holly Currah

FRIEND FINDER

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.


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. Gen-

erally, 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 activi-

ties 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

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

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 organi-

zations 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


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 im-

portant 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 likeli-

hood 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 nor-

mal.” 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.

“Everyone kept saying it was to be expect-

ed 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 Awareness

MS facts & Stats• MS 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

by Racquel Foran


Come run or walkour 5km route or the Thrifty Foods 1km Fun Run!REGISTER AND DONATE ONLINE.

childrun.com604 875 2444

Sunday,

June 5, 2011

DiAgnoSing MS

Diagnosing MS is not simple and it can take quite some

time before a diagnosis is confi rmed. This is because histor-

ically diagnoses must include evidence of disease activity

separated by time and space. Because more recent stud-

ies have shown that early intervention with medications

can signifi cantly reduce both the frequency and severity

of fl are-ups, doctors are trying to confi rm diagnoses more

quickly than they have in the past.

Specifi cally, 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 caus-

ing 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.

SyMPtoMS

Because the disease affects nerves, the symptoms vary

greatly from one person to the next. Some symptoms

include dizziness, blurred vision, diffi culty walking, dif-

fi culty 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 progres-

sion, these medications help people living with MS main-

tain their quality of life.

Living With MS

Much work is being done to fi nd both the cause of MS as

well as a cure for it, but until that time comes those diag-

nosed 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 fi rst 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 therapeu-

tic 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

fi nds the MS Walk diffi cult because of having to witness the

stark reality of how harsh MS can be. “I’m not in a wheel-

chair, but there are lots of wheelchairs,” she explained. “It’s

a club he doesn’t want to belong to, but we do.”

Continued on page 26…


Overall she has had to slow down, which is fine with

her. As a family they have adapted well to her limita-

tions. “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 pa-

tients who have benefitted from the MS Society’s research.

The MS Scientific Research Foundation is pursuing a num-

ber 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 pa-

tients. 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 symp-

toms, supports, and research, visit the MS Society of Canada at

http://mssociety.ca/en/default.htm.

MS in youthAlthough 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 fam-

ily 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 MSRelapsing-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 diagno-

sis. It is quite rare.

Source: www.msforteens.com

May 1:

Scotiabank MS Walk

Richmond, Surrey, White Rock,

Kelowna, Cranbrook, Nelson,

Penticton, Port Alberni, Abbotsford,

Chilliwack

May 4:

MS Social Lunch

Kamloops

May 5 to 8:

MS Carnation Campaign

Throughout BC

May 11:

National research teleconference

Free to all who register (limited

number of lines)

May 14:

Mr. Lube Founders Day fundraising

event

4% contribution to MS Society for

every oil change purchased

May 15:

Scotiabank MS Walk

Kamloops and Port McNeill

May 25:

May World MS Day

Canada-wide

MS Awareness Month – BC EventsMay is National MS Awareness month. These are some the events taking place around BC.

…continued from page 25.


May 25:

May World MS Day

Canada-wide

Whoa, high-fi ves 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!

“May Every Day Be Special” ContestEveryone that wants to win prizes, put your hand up...

Be Special Today!

To enter, come visit us on Facebook.

We’ll meet you there!

About Special Families MagazineSFM offers “news, views, reviews and things to muse” all from the world of special needs.

SFM is the most targeted local print advertising vehicle for businesses servicing the BC

special needs family market. An advertising partnership with SFM means reaching up

to 100,000 special needs decision makers every issue with a consistent, respected and

anticipated advertising vehicle.


Kids Love Camp!

Programs Include:SwimmingAccessible Rock ClimbingArts and CraftsGiant Swing and Low RopesMusic and Drama Outdoor PursuitsAND MUCH, MUCH MORE...

camp Dates, applications and more information at:

www.eastersealscamps.ca

BC Easter Seals Camps offers FREE overnight camping programs for children and teens with disabilities

Fun

Challenge

BC Easter Seals CampsGiving Children Abilities

BC Camping SpecialistsNow that spring is here many youth’s thoughts turn to the upcoming summertime and the fun to be had at summer camps. The same is true of youth who have special needs. Summer camps provide children and adolescents who have special needs with the opportunity to have a safe and fun camp experience while also providing some respite for the campers’ families.

Thanks to the hard work and dedication of individuals, foundations and sponsors, British Columbia is home to numerous camps for youth with special needs. These include Zajac Ranch, Camp Hornby, Eureka Outdoor Camp and Easter Seals Camps.

by Heidi Turner

Zajac ranchZajac 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 bifi da 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 specifi c week. During the burn unit camp, Zajac Ranch can host up to 120 campers. During weeks for spina bifi da, the camp can hold around 50 campers.

“During some weeks more campers require one-to-one or two-to-one support,” says Execu-tive 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 campfi res.

“Every child deserves to go to camp,” Mc-Clounie says. “At Zajac we can provide char-acter-building experiences while providing the support and medical attention needed to ensure campers have a safe and fun experience.”

Easter Seals CampsWith three locations—one on Vancouver Island, one in Squamish and one in the Okanagan Valley, Easter Seals camps offer a summer camp experi-ence 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.

Those who attend camp can take part in rock climbing, a fully accessible giant swing, pool swimming, canoeing and arts and crafts.

Community is important at the camps, where campers can be themselves and not worry about fi tting in, Cheryl Williams, Administrator of the BC Easter Seals Camps, says. “The campers make new friends and try new things in a safe environ-ment. Everyone fi ts in. The staff connects with the campers and have meaningful relationships. The campers can have their dreams and we try to help fulfi ll them.”

In addition to the regular camps, the Easter Seals Camps also offer a Leader In Training program for youths aged 16 to 22 who have an interest in leadership skills. The program is open to youth with or without disabilities. That camp is not fully subsidized and costs $425.

“The campers talk about the camps year round,” Williams says. “We hear that some kids pack from January for the camps. It also provides some respite for the families.”

Eureka outdoor Camp For children with invisible disabilities—such as Asperger’s, ADHD, OCD and anxiety—Eureka Camp might offer the perfect camp experience. The camp was designed for children who have diffi culty 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 benefi cial to,” says Elizabeth Keres, Executive Director of Eu-reka Camp. “Our campers are cognitively average to above average, but there is a distinct disparity between intelligence and ability to function within society. The child with Asperger’s is brilliant at math, but can’t maintain a friendship to save his life. He has diffi culties with social cues.”

Keres prefers to speak with the potential camper’s family or guardian over the phone, before they fi ll out the registration, to determine if the camp is a good fi t for the camper. Eureka camp is not designed to provide one-to-one support and is not a therapeutic camp, but campers get the oppor-tunity to enjoy canoeing, kayaking, exploring, arts and crafts, outdoor adventures and theme days.

“It’s as close as some of these children get to camp,” Keres says. “They wouldn’t otherwise get that experience because they need that added adult support. It’s not just important for the chil-dren. It also gives the parents time to reload be-cause most are exhausted by the school system.”

AN OVERVIEW OF SOME OF THE AMAZING CAMPING DESTINATIONS FOR KIDS WITH SPECIAL CONSIDERATIONS

Kids Love Camp!

Programs Include:SwimmingAccessible Rock ClimbingArts and CraftsGiant Swing and Low RopesMusic and Drama Outdoor PursuitsAND MUCH, MUCH MORE...

camp Dates, applications and more information at:

www.eastersealscamps.ca

BC Easter Seals Camps offers FREE overnight camping programs for children and teens with disabilities

Fun

Challenge

BC Easter Seals CampsGiving Children Abilities


Zajac RanchLocation: MissionOperated By: Zajac FoundationSpecial Needs: Depends on the weekCampers’ Ages: 7 to 17 years oldDates: Throughout the summerCost: Varies depending on the week. Every camper is subsidized 50 percent from the ranch or corporate sponsorsSpecial Dietary Needs: The camp can accommodate special dietary needsApplications: 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 OntarioWebsite: www.zajacranch.com

Camp HornbyLocation: Hornby IslandOperated by: The Camp Hornby Society in conjunction with The Tribune Bay Outdoor Education SocietySpecial Needs: For children who are blind, visually impaired or deaf/blind and their familiesCampers’ Ages: No lower age limit, upper age limit is 21Dates: July 21 through July 25, 2011Cost: $55 per camper up to $150 per family (three or more people)Special Dietary Needs: Can accommodate dietary needsApplications: Can be found on the website. Deadlines are fl exible, although camps do fi ll up. Applications were open as of January 1. Campers come from: British ColumbiaWhat 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 CampsLocations: Squamish and PrincetonOperated by: Eureka Camp SocietySpecial 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 18Dates: Throughout summerCost: $750 per weekSpecial dietary needs: Can accommodate dietary needsApplications: Can be found on the website, but Elizabeth Keres prefers to speak with potential applicants by phone fi rst to ensure the camp is a good fi t for the camper.Campers come from: Mainly British ColumbiaWebsite: www.eurekacamp.ca

Easter Seals CampsLocations: Camp Shawnigan (Vancouver Island), Camp Squamish (Squamish), Camp Winfi eld (Okanagan Valley)Operated by: The British Columbia Lions Society for Children with DisabilitiesSpecial Needs: Physical or mental disabilitiesCampers Ages: Ages 6 to 18Dates: Throughout the summerCost: Camps are subsidized. If the camper needs one-to-one support the family must provide that worker and pay the worker’s wagesSpecial Dietary Needs: Can accommodate special dietary needsApplications: Available online; deadlines close as camps fi ll upWebsite: www.eastersealscamps.ca

Camp hornbyFor 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. Oth-er 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 climb-ing 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, campfi re activities and musical performances.

Families who come to Camp Hornby can stay in the private camping area, but must bring their own sleeping accommoda-tions. The number of campers who can be accommodated de-pends 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 diffi culties 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 valu-able for parents and sighted siblings,” Mason says. “Often, this is the fi rst 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.”


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 admit-

tedly 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 con-

versation and movement at the sound of the bell. Each partici-

pant was asked to say and ‘drum’ their name going around the

circle, which they did with unbridled enthusiasm. Chris and I in-

troduced 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

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

by Michael Kingscott

Drumming Up SupportFOR MUSIC/MUSIC THERAPY


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

affi liated with the University of Montreal and McGill, with

a focus on neuroscience, relates the following benefi ts 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.

While one doesn’t need special accreditation or training

to explore the benefi ts of sharing music with children, it

should be noted that only Registered Musical Therapists

are qualifi ed 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 Medic-

aid, 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 offi cial 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 ac-

cordingly, much as it was with Acupuncture.

While our children often have extensive and well docu-

mented 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 musi-

cal 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 musi-

cal transformation. sFm

Featuring products by:

Available for Parties and EventsHandmadeOrganicNut-FreeVeganGluten-Free

Featuring products by:

Organic Face

Painting

www.dingabear.com - (604) 846-8880

…research indicates that MUSIC combines different frequencies that cause a complex set of reactions in the brain.


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.

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 Ca-

nadian 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 men-

tal 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

Exceptional Family TravelResources 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 Profes-sionals 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.”

traVel


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 slow-

ing 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 big-

gest 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. Acces-

sible 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 Na-

tional 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 lo-

cated on Vancouver Island just south of the Swartz Bay ferry ter-

minal, 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 beauti-

ful 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

For many people, family vacations are a given. For those with special needs

children, the notion of travelling as a family becomes somewhat trickier.


traVel

By Cindy Kavanaugh

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-plan-

ning 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 fea-

tures 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 experi-

ence. 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 docu-

ments 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/dis-

abilitiesfaq/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

Mickey’s Magic

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 complimen-

tary benefit to all park guests that allows you to enjoy

the rest of the Disneyland Resort while your place in

line is saved.


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 build-

ing 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 ex-

plaining 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 webaccessIble 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.

Mickey’s MagicMaking the journey

MORE ENJOYABLE


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 arthri-

tis 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 differ-

ent 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 prob-

lems, 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 in-

security 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

Life With Lupus

by Heidi Turner

facts About LupusLupus 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.

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 LupusThe 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 advo-

cacy, 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.


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 Spe-

cial 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 pro-

vides 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-confi-

dence, create pride and open doors to a positive future. Special Olympics now oper-

ates 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.

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.

Winning at Lifeby Debbie McKeown

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 prog-

ress to international competition like this sum-

mer’s World Games in Athens? Athletes sign up

to participate in weekly practises in their com-

munities in one or more sports. While they are

opening up new worlds of skills, friendship and

fitness for themselves, they will also have op-

portunities to compete at the local level. From

here they can qualify to move up to provincial,

national, and eventually, international competi-

tion 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 Olym-

pics 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


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 con-

sider 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 defini-

tion 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

Meaningby Corrine Ritchie

Special

What does special mean to me?


We will never walk on the moon.

Looking back over time, history is full of triumphs, true

innovations and life-altering achievements. Today,

you can be part of something just as monumental.

With the support of the MS Society, Canadians

are helping those living with MS and bringing the

cure within reach. Let’s take this last step together.

Learn about multiple sclerosis, our services and what you can do to end MS.

1-800-268-7582mssociety.ca


The #1 youth fitness company in the world!

The fabulously fun fitness & healthy habitsprogram for kids!

• classes available in daycares, preschools & elementary schools throughout the Lower Mainland

• affordable, FUNtastic fitness and early learning in healthy habits

• trained and certified Youth Fitness Instructors provide engaging, safe workouts that get kids active

• classes are age-appropriate, suitable for children aged 1.5-12

• we come to your location and we bring the fun

Do you know where your trapezius is?Our 4 year olds do!

Come join the fun, call 1.866.325.1522 to book your free demo class now!

Check us out on the web at www.istretchngrow.com or visit us on Facebook!

Our 4 year olds do!

Documents

Special Families Magazine May 2011