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1 OctOber 2016
NewsletterF A L L 2 0 1 6
In this Issue...
C AW S
Caws Contacts 3
CAWS Showcase 4
First days of School 8 Camp News 12
Dream Makers 15
Happenings 19
Donation Form 20
An extraordinary general Meeting
NewsletterCAWS CAWS Family Conference update PAGE 18
As indicated in the spring newsletter CAWS has been working with Benefic to incorporate proposed changes to our bylaws and transition to the new Societies Act that
will come into effect November 28, 2016. The transition to the new Societies Act is mandatory for every society incorporated in British Columbia and CAWS will automatically be subject to the New Act and Regulations. I, with the assistance of Gloria Mahussier and Orvella Small, have submitted the final changes for the bylaws to Benefic and are prepared to present them to the membership to be voting in. Gloria and Orvella have a strong understanding in the interpretation of bylaws through years working with Non profit societies in Canada, Saskatchewan and Alberta respectfully. I am confident that the proposed changes will allow CAWS the flexibility it needs to conduct business on a national scale and provide the foundation necessary to continue to propel us forward. In order to vote the bylaws into effect, an extraor-dinary general meeting will take place on Sunday, November 20 at 2:00 pm CDT. Members are asked to call into the toll free CAWS conference line at 1-855-212-9119. For those interested in learning more about the proposed changes and gain an understanding of the new bylaws, an information session will take place on Sunday November 6 at 2:00 pm CDT. Notification of attendance can be sent to Gloria Mahussier at [email protected], or myself at [email protected]. Upon notification the bylaws will be emailed for your review prior to the meeting.
Coralee CrowePresident
2 OctOber 2016
CAWS Mission Founded in 1984, CAWS exists to provide support and assistance to families with a child affected by Williams syndrome and is a network and family for adults with Williams syndrome.
Attention parents/caregivers of Williams individuals 12 years of age and older
Kings College London and the Cerebra Centre for Neurodevelopmental Disorders (University of Birmingham), are conducting several research studies in the UK to investigate anxiety in adolescents and adults with Williams Syndrome. This research work, headed by Professor Chris Oliver and Professor Patricia Howlin, is funded by the Williams Syndrome Foundation (UK) and the charity Cerebra. We have been asked to participate in an online questionnaire that aims to identify factors that may make anxiety more or less severe for people with William syndrome, including sensory processing deficits, health problems and behavioural difficulties.This questionnaire is accessible via the email link below and will take parents/carers approximately 45 minutes to complete. All families who complete the questionnaire will receive an individualised feedback report. The link to the survey is below. https://lesweb2.bham.ac.uk/surveys/index.php?r=survey/index/sid/195696/lang/en The password to login is: cerebra
Coralee Crowe President
Read more details in the winter newsletter coming in January!
3 OctOber 2016
A S S O C I A T I O N C O N T A C T S
PRESIDENTCora Lee Crowe27 Regis DriveWinnipeg, MBR2N 1J9(204)[email protected]
VICE PRESIDENTVolunteer required
TREASURER David Olson248B East 21st StreetNorth Vancouver, BCV7L 3B6(604) [email protected]
SECRETARY/EDITORGloria Mahussier19 Pereverzoff PlacePrince Albert, SK. S6X 1A8(306) 922-3230/ (306) 922-3457 (fax)[email protected]
MEMBERSHIPMike Mahussier19 Pereverzoff PlacePrince Albert, SK. S6X [email protected]
MUSIC CAMP COORDINATORRick Chmilar160 Watson CourtGarson, ON P3L 1K8705 [email protected]
YOUTH CORRESPONDENTVolunteer required
FUND DEVELOPMENTBailey [email protected]
Self AdvocateJill [email protected]
Alberta Nicole DessureaultSherwood Park, AB(780) [email protected]
British Columbia Cindy SanfordBox 26206Richmond, BC V6Y 3V3604 564 [email protected]
ManitobaCoralee Crowe27 Regis DriveWinnipeg MB R2N 1J9(204)[email protected]
Nunavut/N.W.T.Volunteer required
Nova Scotia Jodie [email protected]
New BrunswickBlaise and Michelle Dobbin28 West AveSackville, New BrunswickE4L 4P1(506)536-0821 - home(506)540-0821 - [email protected]
Newfoundland Volunteer required
Ontario Melanie Coté[email protected]
Quebec Voluteer required
Saskatchewan Nathalie Bérubé331 Brooklyn crescentWarman, SKS0K 0A1(306) [email protected]
Visit our website: http://caws.sasktelwebhosting.comRegistered office: P.O. Box 2115, Station Terminal
Vancouver, BC V6B 3T5
4 OctOber 2016
This past May, the Ontario Special Olympics Spring Games were held in Guelph. There were over 1000 athletes participating. Events included basketball, swimming, bowling
and rhythmic gymnastics. Our son Patrick, 20 (WS) was part of the basketball team representing the hometown of Guelph. They went three games undefeated into the gold medal game, only to lose a heartbreaker final 19-15. It was an incredible, emotional experience watching that silver medal placed around Patrick's neck. Patrick has been playing basketball for close to 10 years, they are a dedicated, hard working team, that dreams of heading next to the National Games in Halifax. As I sit here watching the Olympic Games in Rio, I can tell you as a parent, there is no greater joy than watching your child be rewarded for their endurance, dedication and love of sport.
Ann AldertonGuelph ON
Showcasing individuals in the CAWS
Visit our websitehttp://caws.sasktelwebhosting.com
5 OctOber 2016
heena is enhancing SHEENA'S SWEETS AND SUCH this year by working at the High River Farmers' Market year. She motors down on her scooter and sells surprise bags and cotton candy! What a great way to see the community from an exciting busy street. Sheena travels downtown on 4th Avenue in front of her old store location!! This year at the Farmer’s Market, she had help from her nephews, Tycen and Joshua.
Sheena rode with her Dad, on the motorcycle, as I wasn't riding this year. They rode in the Leather 'N' Chaps which is the Ridin for SNAPS Motorcycle Poker Rally. The ride this year was through the Kananaskis - one of the top 10 best rides in Canada for 2017. Great fun!
Orvella SmallSheena’s mother
She’s Ridin’ & Working
S
6 OctOber 2016
My daughter, Keera Lyall was accepted to the Project Search program that just
launched at HSC (Health Sciences Cen-ter hospital), in Winnipeg. The Health Sciences Centre Winnipeg has become the first hospital in Canada to launch a student job program for kids with intel-lectual or developmental disabilities. Under Project SEARCH, 11 kids will rotate through work placements at the HSC, learning marketable business skills in the workplace. Project SEARCH is an American-based organization which started at Cincinnati’s Children’s Hos-pital and now includes over 300 sites across the United States, Canada, Eng-land, Scotland, Ireland and Australia. Project SEARCH’s primary objective is to secure competitive employment
ProjectSearchbegins at theWinnipegHealth Services Centre
for people with disabilities. The proposal to offer Project SEARCH at Winnipeg’s largest hospital was met with overwhelming support, with over 40 departments offering internship positions. This is Winnipeg biggest and busiest hospital, and every department here has accepted this program with enthusiasm. The students will each attend a classroom provided by HSC, and each student will have an opportunity to intern in three different departments over the next school year. Students will spend six hours each day learning employable skills, interning in various departments, reviewing their day in the classroom and writing in journals. The students will also be supported by job coaches. Each of the students already has completed their credits
toward their high school diploma. This extra year of work experience will help each of them make the jump from high school to adulthood. Students will be matched with placements that best suit their interests and skills. Some of the possible placements include depart-ments such as patient services, patient records, housekeeping, medical device reprocessing, and more. The ultimate goal is to support students to be successful in their post-graduation search for competitive employment, utilizing the skills learned on the work experiences and throughout the program.
Alison LyallKeera’s mother
7 OctOber 2016
Supporting Pupils on the Autism Spectrum in Primary Schools – A Practical Guide for Teaching Assistants
Written to meet the needs of teaching assistants and learning support assistants, this book provides a practical toolkit for supporting students on the autistic spectrum in mainstream primary schools.
The book offers a clear, jargon free explanation of autism spectrum conditions and examines the difficulties arising from these conditions and how they can impact on students’ learning. Addressing issues which arise on a daily basis, it is full of practical advice and strategies for supporting students socially and academically across all areas of the curriculum.
Features include:• advice on supporting students through examinations• examples and case studies to illustrate how the strategies described work in practice• forms to help with information collection and evaluation• templates to scaffold students’ comprehension and learning in different subject areas
Packed with photocopiable resources that can be adapted to suit individual students’ needs, this book is essential reading for teaching assistants that want to help their students’ on the autism spectrum to reach their full potential.
If you are interested, you can find more information at: https://www.amazon.co.uk/Supporting-Pupils-Spectrum-Primary-Schools/dp/1138838896
Join our Facebook pageWilliams Syndrome Support Group - Canada
8 OctOber 2016
Kendal's first day in Grade 7. Both nervous and excited because she is going to be bused to a new school this year for their awesome develop-mental skills program.
Grade 1 for Maddy and grade 4 for her big sister Chloe. Full day classes in a typical classroom... a big change from 1/2 day kindergarten!
First day of high school for Waylan! Mom is having anxiety. (lol)
Cole’s first day
First days of School
9 OctOber 2016
Here is a collage of Paul’s first day of school a n d s u m m e r adventure. There was a lot of camping fun!
Christian WS - Grade 2 on first day of SchoolChristian on the left from brother LiamLiam - Grade 1 on first day of School
10 OctOber 2016
• Provide teachers and educational assistants with copies of the different materials on your child’s diagnosis that you have so that they can become more aware of the disability.
• Make sure that the right people (classroom teachers, resource teachers, educational assistants) know what your child needs to be successful. Parents should never feel pressured by school staff to make a decision. Ultimately, you’re in the driver’s seat. So while it’s important to be receptive to the school staff’s thoughts, don’t agree to something you think goes against what’s best for your child.
• Talk to the school and the teachers prior to school starting. This will allow you to provide them with some infor-mation and tips that can help them bet-ter understand in advance. Get to know your child’s teachers as well as the school psychologist, speech therapist and anyone else who can help you help your child. Building relationships with these people will help keep the lines of communication more open. There’s less of a chance of misunderstanding if everyone knows each other.
• Always communicate with your child’s
As a parent, you are your child’s best education advocate—until he’s old enough and informed enough to speak up for himself. You know your child’s strengths and challenges, and you can help identify and push for the resources your child needs to succeed. Here are some tips to help you advocate for your child at school.
Suggestions for Success Advocating to Education Professionals
teacher, whether it be through phone calls, emails, or daily communication books.
• Always make sure that you have extra support when you can, whether it be from family or friends. Having support can help you keep your strength while advocating. Contact agencies such as the Association for Community Liv-ing in your province, they can provide nformation and resources to schools and teachers as well as be a support in meetings to you. In Saskatchewan, you can contact the SK Association for Community Living at 306-955-3344 and ask for a Community Consultant in your area.
• Create a individual program plan for your child with all of the people who may need to be involved. This allows everyone to be on the same page and to know what direction things are mov-ing in. It’s important to work with the school, but make sure you’re in agree-ment before you give your approval. Don’t be afraid to ask for clarification, request further testing or challenge the school’s decision regarding services. It’s a good idea to submit in writing any requests for additional testing. Keep copies of these requests that include the date you sent them. It might also
be helpful to keep a log of whom you spoke to and when.
• Make sure that your child’s teacher has information about your child and how best to handle stressful situations in the class room. This will make it easier for substitute teachers to under-stand your child.
• Never stop talking and advocating. Communication is very important. Make sure that the people who need to know are always reminded of your child’s abilities. Remember that the teachers and other school staff members involved are there to help, even if you disagree with them. The process will go more smoothly if you listen and keep an open mind. Make a list of the topics you want to cover in important meetings.
11 OctOber 2016
My name is Congxiao Wang and I am 17 years old.
On Saturday, August 6, 2016, I finished my one-week music enrichment camp in U.S.A. It was a little bit hard for me to say goodbye to my new friends and counselors there, now I start to miss them already. On the first day, I was a little bit nervous, I was worried that I wouldn’t have anyone to hang out with. But the campers there were so friendly, and the counselors were very nice to me. They made me feel like home not long from the time when my parents left. During the week, I had different activities everyday. I learned how to play ukulele, I learned three songs on the ukulele, and performed at the talent show! I was very nervous, but I did it! Everybody cheered so loud for me, I was very happy for that. I also had drama classes,
This summer saw both Amelia Howe and Congxiao Wang attending Whispering Trails Music Camp with scholarships awarded by CAWS. Congxiao was awarded the scholarship in 2015 but complications prevented her from at-tending that summer. Whispering Trails Music Camp generously offered to keep her scholarship on file and hold a spot for her for this year. Amelia was awarded the scholarship this year and attended the music camp along with Congxiao.
Also, just a reminder that CAWS will be offering a music camp scholarship in 2017. Keep an eye out for the CAWS' winter newsletter in January for a call for applications. In the meantime, if you have any questions about the scholarship, please feel free to phone me at 705 693-5003 or email [email protected].
Rick ChmilarMusic Camp coordinator
and played two different roles in two plays, and really enjoyed it. I also performed in a choir singing the songs that the campers, including me, wrote the words for. I also enjoyed riding a horse! Even though I was quite nervous at the beginning, the counselor there encouraged me a lot, after the first ride, I wanted to do it again and again. I did some archery, and played some games in a group. I loved the campsite too, so beautiful! There are lots of trees and water, and bugs too, but the bugs didn’t really bother me because of the bug spray. Most importantly, I made some new friends there! I love the people there, and I hope to go back next summer. My parents told me that we should be
Music Camp Coordinator
Music Enrichment Camp Experiences
thankful to CAWS of Canada for the scholarship, so I got the opportunity to experience that. I know that, I am very thankful for the support. A big thank you to CAWS!
Congxiao Wang
12 OctOber 2016
This was my second time going to Whispering Trails Music and Enrichment
Camp in Oscoda, Michigan. I was excited to go this year, because I could go see the friends that I made last year. Some of the girls I met last year were in my cabin again this year, so that was nice for me. We got to go swimming, learn new songs and play the ukulele, go horseback riding and dance and laugh ALOT!!! And the food that they cooked for us was so delicious!
The best part about WSA Camp is that I get to be with people just like me and we get to spend a whole week together! I have included some photos from this year:
1. My dad and sister drove me to camp - a 4 1/2 hour drive from our house!2. We were getting ready to throw a shaving cream pie at one of our counsellors - an annual tradition "getting pied"3. One of the beautiful evenings on the lake
4. Me and one of the counsellors - Carrie5. A cabin-mate selfie!!
P.S. Thank you to the CAWS for awarding me the music scholarship to go to Whispering Trails this year! I can't wait till next year!
Amelia Howe
13 OctOber 2016
Dream Makers Helen Deckert Kitchener, ON Bronze sponsor
Wandrienna Everdiena Shibley Calgary, AB Silver sponsor
Sharon McColl Edmonton, AB Silver sponsor
Don & Jean MacDonald Grand Forks, BC Silver sponsor
Marianne & David Newton Lower Coverdale, NB Silver sponsor
Stephan & Elaine Wisemen Dundas, ON Silver sponsor
Winnipeg Group Sales Office, Great-West Life Winnipeg, MB Gold sponsor Jim & Diane Reid Calgary, AB Platinum sponsor
Carol & David Lajoie Grand Forks, BC Platinum sponsor
Kelly, Donovan, Lexi Fraser Prince Albert, SK Platinum sponsor
Claudia & Markus Rebmann Woodbridge, ON Platinum sponsor
Jean MacBride,Cumberland Centre, Maine Platinum sponsor
Fraser Small, High River, AB Platinum sponsor
14 OctOber 2016
We would like to help make dreams come true by committing to CAWS.
Dream Maker level of _________________________________________________ For a total of $ ___________________________________________
___ in celebration of or ___in memory of _________________________________(please submit your story separately with photos if possible and elaboration of the occasion)
Date: Name: Phone #:
Address:
Email:
Have you considered becoming a
Dream Maker
Do you feel like making dreams come true? You can help dreams come through by giving to CAWS Dream Makers. Your donations to Dream Makers goes to research, scholarships and our national Family conference. Thank you!
15 OctOber 2016
Level Dollar Amount Family Reward Platinum $2000 $1000 a year for 2 years
Recognition on CAWS website Your story in newsletter (CAWS will help you to write your story) Hotel room for 2017 Family Conference 3 nights (Conference room rate)
Gold $1500 $500 a year for 3 years
Recognition on CAWS website Hotel room for 2017 Family Conference 1 night (Conference room rate)
Silver $1000 $200 a year for 5 years Your story in newsletter (we will help) Recognition on CAWS website
Bronze $500 $100 a year for 5 years
Your story in newsletter (we will help)
Recognition on CAWS website
Family Dream Maker
16 OctOber 2016
Thank you for your generosity in support of CAWS. Your personal commitment is incredibly helpful in helping the Association do our work.
You can donate by visiting: https://www.canadahelps.org/en/charities/879205516RR0001-the-canadian-association-for-williams-syndrome/
CAWS is registered with CanadaHelps.org. CanadaHelps.org is a one-stop shop for Canadians to donate and fundraise online for any registered Canadian charity.
DID YOU KNOW? When you order through the QSP magazine program, over one-third of the subscription price “stays at home” to support CAWS. visit http://caws.sasktelwebhosting.com and enter our Group # 17436 to place your order.
We have signed up with a website called Flipgive, which is a website that allows you to shop from many different websites and earn money back for CAWS at the same time. Please try to utilize this website, especially with the Christmas season coming up, you can also purchase gift cards from the site! Also, in Alberta we are having a fundraiser Painting Night- I will keep you all posted with what we are able to raise. As always, please contact me anytime with fundraising ideas, I will try me best to explore every option. Have a very happy fall everyone!
Bailey WalshCAWS Fundrasing Coordinator
New Fundraiser!FlipGive
visit https://www.flipgive.com/tour to see how it works and purchase to donate to CAWS.
Fundraisers!
17 OctOber 2016
Thank you for your generosity in support of CAWS. Your personal commitment is incredibly helpful
in helping the Association do our work.
United Way of Toronto and York, Nancy DeCorte and Anonymous, Ontario Power Generation Employee Charity Trust, United Way of Alberta Capital Region, Randy Chidley, United Way of Central Alberta Region, Jodie and Timothy Connors, Dolores and Richard Chmilar
Tribute to Lorraine Poplonski: John and Irene Porr
Tribute to Travis Mahussier on his dedication to the Prince Albert Raiders: N & J McGill On the occasion of Alysia Roy 21st birthday: Roy, Barbara and Gordon Zuik
On behalf of Brenda Scruton whose nephew has WS Robert Scruton and Jane Topham
In memory of David Lajoie: Laura Lodder
In memory of Trevor Scullion: Margareta Momciu In memory of Robert Darge: John and Patricia Titos
Stephan & Elaine Wisemen Dundas, ON Silver sponsor in celebration of James Thomas Wiseman
18 OctOber 2016
Visit our websitehttp://caws.
sasktelwebhosting.com
Call for Pictures!
F Y IWhat you need to know
Hi everyone, Melanie, who volunteers to look after our media communication is looking for pictures of our children to include in the upcoming, newly revised and updated brochures. Please send your photos to Melanie Coté at [email protected]
Follow us on FacebookWilliams Syndrome Support Group - Canada
Alberta
October 22, 2016 Alberta Painting Night fundraiser 7:00 p.m. It’s going to be lots of fun! Contact Bailey Walsh for more details. [email protected]
CAWS 6th Family Conference 2017
“Bright Lights, Big Dream”Bright Lights…Big Dreams…dream the vision!
Hi everyone, with Diane attending the 21st Inclusion Alberta family conference (formerly AACL) in April and the WSA national conference this past summer, she has had lots of time to reflect on building and structuring our 6th CAWS Family Conference scheduled for August 2017. In past conference evaluation forms, our families have told us that a full 3-day conference, starting with registration on Thursday evening with full-day sessions on the Friday and Saturday is what families want. We hope, once again, we can meet all your
needs by having presenters from the medical and health area and inclusive education and how the world might look for a Williams syndrome individual and their family. If you have any ideas or suggestions for the CAWS con-ference please forward them to Diane Reid, Conference Chair at 403-660-2155 ; [email protected] as soon as you can. By attending this conference we hope you will become inspired, just as all the families of the CAWS have been over the years.
19 OctOber 2016
it’s happening here
October 22, 2016 Alberta Painting Night fundraiser 7:00 p.m. Contact Bailey Walsh for more details. [email protected]
November 6, 2016 Bylaw Information Session 2:00 p.m. CDT call toll free 1-855-212-9119. RSVP Gloria at mahussier.m@sasktel. net or Coralee at [email protected]
November 20, 2016 Extra ordinary CAWS membership meeting 2:00 p.m. CDT call 1-855-212-9119 to vote on the revised bylaws.
August 3-6, 2017 CAWS 6th Family Conference, Toronto, ON
What is happening in your province? Give your provincial contact a call!
Save the Date! A
ugust 3-6, 2
017
CAWS 6th Fam
ily Confere
nce
Toronto Ontario
Newsletter CONTRIBUTIONSNext deadline January 15, 2017. Please send your contributions for future newsletter to : Gloria Mahussier, 19 Pereverzoff Place, Prince Albert, SK. S6X 1A8 E-mail: [email protected]
CAWS newsletter is published quarterly. Due to limited space, we may not be able to print every item received. We report items of interest relating to WS and will provide a forum for other items of interest. CAWS does not promote or recommend any therapy, treatment, professional system, etc. The Editor reserves the right to edit all material.
Moving?Please send your address changes
and corrections to Mike at: [email protected]
20 OctOber 2016
Thank you for your generosity in support of CAWS. Your personal commitment is incredibly helpful
in helping the Association do our work.
from the editor: Thank you to Rhonda Levesque, PA Fast Print for securing another year’s donation of paper from Unicsource Inc., Saskatoon. Please add Mike Mahussier’s new email address in your contact list to send your change of addresses or notify him of new CAWS families. Also, please note the change to our Registered office address. The deadline for next issue is January 15, 2017. Gloria Mahussier
D O N A T I O N F O R M
$100 $65 $35
As A memoriAl to _____________________
A tribute to __________________________
on the occAsion of ____________________ (Birthdays, Anniversary, Graduation, etc.)
Attached is my cheque payable to CAWS in the amount of:
Your donations to CAWS will go to research, scholarships
& our family Conference.
All donations may be forwarded to: CAWS National Office,
P.O. Box 2115, Station Terminal Vancouver, B.C. V6B 3T5
