Spring 2013
Volume 27
Issue 1
Inside this issue:
The Unexpected Quilting King
Read about Jamie Adam and his surprising talent
Adventures In Adoption, Adventures With Lily!
One family’s journey in adopting a child with Down syndrome
Teach All Students Through Inclusive Education
An excerpt from the Educator Package
...And more!
21 Magazine is a publication of the Canadian Down Syndrome Society. The number “21” represents the triplication of the 21st chromosome that is present in the naturally occurring arrangement of Down syndrome. It represents the beginning of the next twenty years in our compelling history. For the Canadian Down Syndrome Society, it also represents a certain coming of age, and the rights and obligations associated with this maturity.
On the Front Cover Paul Sawka and Brenda Creigh Magazine Staff Kaitlyn Pecson
Editor:
Contributors:
Kirk Crowther Janice Brawley Corrine Grieve Crystal Trumper Marc Rochette Jonathan Bateman Trina Hoadley Lisa Wright Ashlee Stone Carol Johnson Chelsea Watson
Special thanks: Clare Hitchens Anne Livesey-Husak
Policy And Disclaimer This magazine reports items of interest relating to Down syndrome and will provide a forum for others. The Canadian Down Syndrome Society does not promote or recommend any therapy treatment or product. The opinions and views expressed in this publication may not necessarily be those of the organization or its members. We wish to bring together those interested in Down syndrome and create an optimistic outlook and attitude. The editors reserve all rights.
Canadian Down Syndrome Society Suite 103 - 2003 14 Street NW Calgary, AB T2M 3N4 Toll-Free: 1-800-883-5608 E-mail: info@cdss.ca | Website: cdss.ca
What’s inside: World Down Syndrome Day In Toronto............ 6 The Guide To Talking About Down Syndrome.... 7 The Unexpected Quilting King........................ 8 Adventures With Lily................................... 10 “Buddy Walk” Around Canada!................... 12 Teach All Students Through Inclusion.............. 14 In every issue: From The Executive Director........................... 3 The VATTA Update....................................... 5 Donate to The Canadian Down Syndrome Society We need your help to continue the work we do. Your contribution ensures that we can continue to educate, advocate, and most importantly create a better Canada for people with Down syndrome and their families. Donate online at www.cdss.ca, via telephone at 1-800-883-5608, or by mail at: Suite 103 - 2003 14 Street NW Calgary, AB T2M 3N4 Charitable Number: 11883 0751 RR 0001
from the executive director
Kirk Crowther is the Executive Director at the Canadian Down Syndrome Society. This is his third year as the Executive Director and his eighth year with the organization. In the photos: Left:
Kirk
speaking
at
the
2012
World Down Syndrome Congress in South Africa. Right: CDSS Board members Heather Kaine, Dewlyn Lobo, and Kevin Whyte (Board Chair) with Kirk Crowther at the
2013: A Year of Progress We are thrilled that the first quarter of 2013 at the Canadian Down Syndrome Society has already seen its fair share of successes. We are building on this success by not only meeting the needs of the ever-changing Down syndrome landscape, but also by ensuring that Canadians receive the most relevant and up-to-date information from Canada and the world. I am proud of the staff in Calgary, who give you their best without compromise. As we learn something new every day through our community, Lyn, Jonathan, Kaitlyn, Corrine, and Paul are constantly inspired to serve you better. Thank you to the fantastic volunteers, the Board of Directors, the Affiliate and local groups, and the inspirational VATTA. They all play a large role in meeting our vision: All people are valued, fully participating citizens.
Toronto Stock Exchange for World Down Syndrome Day.
After a successful 25th anniversary of CDSS in 2012, we started 2013 with a focus on the next quarter century by: • Distributing over 1500 copies of the Educator Package—including a copy sent to every school in Manitoba. • Selecting five Canadian Down Syndrome Heroes from across Canada, each receiving a grant of $500.00. These worthy recipients are leaders in their own communities and you can read about them in Voices. • Planning the 2013 Canadian Down Syndrome Conference in Winnipeg, Manitoba. We are excited to have self-advocate Lauren Potter from Glee and Dr. Brian Skotko as our Keynote speakers. CDSS’s own VATTA and Paul Sawka will conclude the conference as Endnote speakers. • Opening the Toronto Stock Exchange to celebrate World Down Syndrome Day (March 21, 2013). • Participating in World Down Syndrome Day activities including the Down Syndrome International video, “Let Us In” (which you can view at www.ds-int.org). • Creating a photo montage video celebrating World Down Syndrome Day titled “See the Ability” (which you can view at www.youtube.com/cdndownsyndrome). CANADIAN DOWN SYNDROME SOCIETY PAGE 3
from the executive director (continued) • Welcoming Regroupment pour la Trisomie 21 (www.rt21.org) from Montreal as an Affiliate member. The Affiliates were established to inform the CDSS Board of Directors about regional and provincial priorities, activities, and issues. They increase the cohesiveness and strength of the organization and are a strong network for sharing information and best practices. With you, the dedicated members, we look forward to our vision by focusing on our mission of empowering Canadians with Down syndrome and their families, by raising awareness and providing information on Down syndrome through the prenatal, early childhood, school years, adulthood, and retirement stages of life. In the photo:
By listening to the voices of our members, CDSS has been able to remain relevant by adapting. Thank you for your tweets, posts, emails, ideas, advice, suggestions, and financial support. Stay connected though Facebook (www.facebook.com/cdndownsyndrome), Twitter (@cdndownsyndrome), and our website (www.cdss.ca). Have a great summer!
The staff celebrating Pink Shirt Day.
Kirk Crowther Executive Director
Thanks to our Sponsors and Major Supporters Federal Student Work Experience Program
Local 2800
Individual & Family: Kaine Family
Whyte Family
Tom Koch
Wilma Gardhouse
Lana Karasiuk (Bequest)
Paul & Brenda Bandiera
Andrew Bell
Evelyn G. Wigham
Kenneth Pearce
Diane Kesteven
Adrien Chan
Mary Tomlinson
Iusi Family
Lorne Paterson
Mark Buller
Irene Mclennan
Marjorie Anne Sauder
Foundations: The Calgary Foundation
Civitan International Foundation of Canada
James N. Allan Foundation
Frank & Yvonne McCracken Foundation
Harry E. Foster Charitable Foundation
F.K. Morrow Foundation
My Gift Tribute Foundation 21 MAGAZINE PAGE 4
the VATTA update
Ready for a new beginning!
In the photo: (from top left, clockwise) Ruth Joseph, Nicholas
Popowich,
Janet
Charchuk,
Ashlee Stone (former VATTA coordinator), Andreas Prinz, Mary Frances Brennick, and Matthew MacNeil. Missing:
Brandon
Thielen
(VATTA
member) and Corrine Grieve (the new VATTA coordinator). Photo by Ashlee Stone.
VATTA has had lots of exciting changes in the last six months. Let’s start with two major announcements. First, we are happy to welcome a new member to the VATTA team, Brandon Thielen from Lethbridge, Alberta. He is 29 years old and owns his own business called, Photos Galore (www.photosgalore.ca). Second, Ruth Joseph, who has been on VATTA for eight years, was elected to be our Vice Chair. We know she will do a great job! Last Fall, we updated our website. The VATTA Blog (www.cdss.ca/network/VATTA), has information on who we are, as well as blog entries about our lives and advocacy work written by us. It’s a great way for us to keep in touch with other self-advocates and people in the community. Also, keep it bookmarked—when we begin to accept applications to join us on VATTA, all the information you need will be on the site. We have also been hard at work for the Canadian Down Syndrome Conference in Winnipeg. We are honoured to have been chosen to be the Endnote Speakers and hope that the Winnipeg attendees find our session inspiring and informative! Finally, we would like to thank Ashlee Stone for being a great VATTA coordinator. Ashlee has left CDSS to pursue other educational opportunities. We will miss her very much and we wish her the best! We’re excited to continue to grow with our new coordinator, Corrine Grieve. Until next time—keep in touch and hope to see you at the conference! CANADIAN DOWN SYNDROME SOCIETY PAGE 5
World Down Syndrome Day in
Toronto at the TSX
Photos by Marc Rochette
21 MAGAZINE PAGE 6
The guide to talking about
Down syndrome
It’s important to make sure you are using correct language when referring to any group of people. Using correct terminology helps reduce prejudice, misconceptions, and stereotypes. This guide will help you when talking about Down syndrome. Share it with the people in your life! For more information visit www.cdss.ca.
It’s “Down syndrome” Why? Down syndrome is named after John Langdon Down. He didn’t have Down syndrome, so it is not possessive (as in Down’s).
Use person-first language Why? A person should not be defined by their disability. Emphasize the person. It’s not “Down’s kid”. It’s not “Down syndrome person”. It’s “person with Down syndrome”.
Be positive Why? A person is not “suffering from” or “afflicted with” Down syndrome. People with Down syndrome can lead fulfilling lives—they can go to university, get married, and have careers!
End the r-word Why? The r-word is often used in everyday speech in a derogatory, offensive, and hateful way. If you stop using it, you help promote the acceptance of people with all disabilities, including Down syndrome.
The Unexpected
Quilting King
In the photos: Jamie selling some of his work, Jamie working on a quilt, and Jamie and The Wild Hogs group. Janice Brawley is the Finance Coordinator at Community Living North Halton. This article appeared, in part, in Canada’s Quilter magazine. 21 MAGAZINE PAGE 8
By Janice Brawley
Jamie Adam is a young man with Down Syndrome who receives support from Community Living North Halton and is employed at their workshop, Horizon Packaging. While working on a group project at CLNH’s Educational Training Centre, Jamie showed a particular interest in and talent for using a sewing machine. When Jamie was asked if he would like to make a quilt of his very own, his infectious grin spoke volumes and with assistance from one of the administration staff, work began on the project. Jamie’s favourite colours were black and red, so that was the starting point for fabric selection. His interests encompass all sorts of sports, machinery and music, so the collection included fabrics with monster trucks, motorcycles, skateboards, basketballs, golf balls and music designs. The golf ball patterns are especially meaningful since Jamie works at a golf course in the summer months as part of the divot crew. Jamie sewed long strips of fabric together, then the strips were cut into blocks, the blocks were stitched into rows and the quilt slowly took shape. His goal was to have the quilt finished in time for an upcoming camping trip. There were many high-fives on tasks well done and the pride in his accomplishment is plain to see. In addition to creating a useful and beautiful quilt of his very own, this project also helped in the development of Jamie’s fine and gross motor skills, socialization, self esteem and even time management – and we thought we were just having fun!
He quickly took ownership of the project and was keen to do the set-up work at the beginning of the evenings as well as the cleanup at the end. His last action of every evening was to gently place his unfinished quilt in the cupboard, kiss it goodnight and say that he loved it. His cheeky grin and sideways glance let the world know that he was really hamming it up.
wonders whether a quilting business may be in his future.
To quote from one of Jamie’s support workers, “I can only be sentimental when it comes to Jamie. I feel very privileged and honoured to know him. Jamie’s tenacious approach to life sets an example for all those who care to take the time to learn from him. Jamie approaches each task with a dogged In addition to creating determination to do Jamie often brought his best. He, himself his red Tim Hortons a useful and beautiful quilt of his very own, is eager to learn, try mug to the quilting new challenges, and sessions, so when it this project also helped in the development of Jacame time to name overcome shortfalls the quilt, his choice mie’s fine and gros mowith humour. There is was “Extra Large tor skills, socialization, no job too big or small Double Double,” to self esteem and even for Jamie as he enjoys match his favourite time management – and seeing things come beverage. As work we thought we were just together for his own neared completion, having fun! sense of accomplishment Jamie’s ambition and to make others extended to thoughts of entering his quilt happy along the way. Everything that in the local fall fair, with the possibility of Jamie embraces in life speaks of how winning a ribbon. He has also offered to success is truly about the journey, not the make quilts for many others who stopped destination.” by to see the work-in-progress, and CANADIAN DOWN SYNDROME SOCIETY PAGE 9
Adventures in Adopting,
Adventures with Lily!
The Adoption Council of Canada estimates there are between 30,000 and 40,000 children who are legally available for adoption. While there are no statistics about children with Down syndrome who are available for adoption, we know of many families who have chosen to adopt a child with Down syndrome. This is the story of Crystal Trumper and her wife, Jessica, who chose to adopt a baby with Down syndrome. Through the process, they gained a daughter named Lily. Their lives are documented on the blog Lily’s Big Adventure, which you can follow at lilysbigadventure.wordpress.com lilysbigadventure.wordpress.com..
In the photos:
“‘What about a child with Down syndrome?’
Above: Lily
Jessica answered before I did: ‘Absolutely!’
Right page: Jessica, Lily, and Crystal.
Photos by Trina Hoadley Photography (www.trinahoadleyphotography.com) and Crystal Trumper.
21 MAGAZINE PAGE 10
I shouldn’t have been surprised that she answered the way that she did. In all of our discussions about adoption we had come back to the idea of a child with special needs over and over again and Jessica’s opinion had never changed. She was confident that we could do it and that we should do it. She believed, with her whole heart, that raising a child with special needs was not only something we could do but it was something we could do well. Of course, it was a much easier concept for her—this is what she did for a living. She works with special needs kids at school and has respite clients. She adored them and saw so much potential in each and every one of them. I, on the other hand, had just entered this world. I had no choice when I fell in love with Jessica—Down syndrome was just part of the package.
In all of our conversations though, I could never find enough enough and Children’s Aid wanted a family in place before the courage to just say yes. I was hesitant—there were things that surgery was scheduled. Before we had even finished reading I had envisioned for my life with a child and I was under the the file or even seeing a photo of her, Jess was smitten. She impression, as so many people are, that having a child with knew that this was our daughter. Nothing could deter her from Down syndrome would change that. I had already experienced believing it. We waited three months before we got the call that the loss of one dream when my son, Ben, was stillborn at 20 we had been chosen and it was another two weeks before we were able to bring her home. weeks followed by several miscarriages. “Before we had even When I finally decided that I was Life with Lily has been its own adventurous done putting my heart on the line with finished reading the file or even seeing a rollercoaster. While her second surgery went pregnancy, I gave up the dream of having photo of her, Jess was incredibly well, she was diagnosed with a condition my own child—a child who looked like smitten. She knew that called Pulmonary Vein Stenosis. It’s a terrifying me and laughed like my sister. I didn’t this was our daughter.” diagnosis. We had gone into the adoption knowing know if I was ready to give up on the rest of that dream, but something about how excited Jess was about that we were getting a beautiful baby and we thought we knew the idea and how much she truly believed that we would love what to expect—Down syndrome and a heart condition. With this life won me over and I agreed, ‘We’d love a child with the new diagnosis, we found ourselves in a world that neither of us were prepared for—but we know we are doing everything Down syndrome.’ we can for her. It took two weeks. Two weeks, almost to the day, when our adoption worker called and said the words we will never When I look back on that time now, when I was fearful of forget: ‘I think I have a baby for you.’ We met a few days what Down syndrome would mean for our lives, I laugh at that later, opened the file folder and began to learn about Lily—a person. I wish I could go back and tell her that the minute you two-month-old baby girl who had been surrendered at birth. become a parent, you just roll along with what life hands you. Lily’s heart condition had been diagnosed at the twenty-one Life will send you roadblocks and giant hurdles but somehow week ultrasound and she had her first open heart surgery at you find a way to climb over and start the road again. You the Hospital for Sick Children when she was seven days old. already see the ability in your child—you just have to see it in Her heart would require a second surgery when she was big yourself.” - Crystal Trumper CANADIAN DOWN SYNDROME SOCIETY PAGE 11
“Buddy Walk”
around Canada!
By Jonathan Bateman In the photos: The 2011 and 2012 DSAS Buddy Walks. Thanks to Lisa Wright for the photos.
What is a Buddy Walk? A Buddy Walk is when a community comes together to raise awareness and show their support for Down Syndrome! It is a 1-3 km walk in a public space to demonstrate the participation of people with Down syndrome in Canada. It is a great place for kids to make friends in your community, and a fantastic place for parents to find other parents who know what is like to have a child with Down syndrome. Buddy Walks are put on by hard-working volunteers and parents from all over the country to raise money for their local group and for the Canadian Down Syndrome Society. There are Buddy Walks in communities all over Canada throughout the year. You can find Buddy Walk listings on ww.cdss.ca. If you want to have a Buddy Walk in your community, then contact info@cdss.ca and we can send you all of the information you need. Here are some photos from the Down Syndrome Association of Sudbury’s past few Buddy Walks. The Sudbury community has one of the largest Buddy Walks in Canada! Visit their website at www.dsas.ca for more information.
21 MAGAZINE PAGE 12
CANADIAN DOWN SYNDROME SOCIETY PAGE 13
Teach all students through
Inclusive Education An excerpt from the Educator Package by CDSS.
Diversity in the classroom enhances the learning, lives, and citizenship of all students. Students with Down syndrome benefit from the experiences of learning with their peers in inclusive educational settings. WHAT IS INCLUSION? Inclusion means all students learn together, in the same class, for the majority of the day. Students with Down syndrome learn and grow best when they are included in the regular classroom and the same goes for their peers. Inclusive teaching allows students to learn from each other and gain exposure and an appreciation for the uniqueness of all people. Inclusion is for everyone. Inclusive education is welcoming, empowering, and supportive.
INTEGRATION VERSUS INCLUSION As students with labels enter the education system, the words “integrated” or “included” are often used to describe the classroom setting they will experience. In some cases the terms are used interchangeably, referring to students being “integrated into a regular classroom” and “included in a regular classroom”. There are, however, significant differences between the two. Knowing these differences can help you foster an inclusive environment that will help all students learn. Integration models assume there is something wrong that must be fixed in order to fit into the present system of education. Conversely, successful models of inclusion believe that ALL students are different, and ALL students can learn. There is nothing about a student that needs to be “fixed” in order for that student to fit into a system. This enables the school system as a whole to change in order to meet the individual needs of ALL learners. Integration
Inclusion
needs of “special students”
rights of ALL students
changing/remedying the subject
changing the school
benefits to the student with “special needs”
benefits ALL students
professionals, specialist expertise, and formal support
informal support and the expertise of mainstream teachers
Inclusion = Good teaching for ALL You will change the lives of many people by including one!
21 MAGAZINE PAGE 14
WHAT ARE THE BENEFITS? According to Dr. Gordon Porter, Director of Inclusive Education Canada, research has shown that students who have attended segregated schools are less prepared for the future than those who have attended a regular school. This is because a segregated school does not properly represent a true community. A true community consists of multiple abilities working together. Research has shown that inclusion benefits everyone—with or without disabilities. Benefits include: • Learning social skills from their peers • Learning interpersonal skills such as active listening, turn-taking, reading emotions, and leadership • Improvements in the student’s speech, language, and communication • Increased likelihood of attending college or university • Preparedness for meaningful employment after high school • Increased self-esteem and sense of belonging for all students • Reduced stigma and misconceptions of individuals with disabilities through peer acceptance • Learning age-appropriate behaviours • Greater personal and professional satisfaction for teachers
For more information on educating people with Down syndrome, CDSS, in partnership with Civitan International Foundation of Canada, is proud to present our latest information booklet,
By providing inclusive education, we are ensuring today’s students create an inclusive society tomorrow. Inclusive education provides the foundation so that all students, once they have left school, are valued members of their communities.
the
Educator
Package. This
resource
assists educators and parents in their journey
towards
a
fully
inclusive
classroom. Visit www.cdss.ca to order
ADAPTATIONS TO PROMOTE INCLUSION IN YOUR CLASSROOM • Many of these adaptations are suitable for all students, but particularly for students with Down syndrome. • Shorter desk/chair or an elevated foot rest • Slanted desk top • Laminated timetable • Smaller, spring-loaded scissors • Triangular pencil grip or larger pencils • Visual aids • Digital timer for transitioning activities • A pillow or back rest for a student if he or she is unable to sit on the floor without support • A calendar to plan and understand schedules and timelines • Larger print and type so the student can easily read any materials
your free copy today.
CANADIAN DOWN SYNDROME SOCIETY PAGE 15