Summer 2010 - Canadian Association for Williams Syndrome

SUMMER
NEWSLETTER
2010
Conference 2013
S
ummer is here! Time for Change! Plans to be
made!
Spring arrives and we think of
cleaning the yards up, planting the gardens and crops
and getting ready for summer. Spring also seems to
be when the most physical moves happen to families,
or at least this is when I see the most houses go up for
sale on the market and then all of the sold signs start
appearing.
As we go through these changes in
life they become annual “transitions”. Our families
are also going through transitions at this time of
year. Families who have children/youth in school are
preparing for the next step. In education, is it a grade
transition, is it a school transition, or is it a transition
into adulthood – looking at employment or post
secondary options? Are our sons or daughters ready
to move out and be included in the community we
live in? Even our typical family members are looking
at those same transitions and then I think we start
thinking as to how these moves are going to affect the
rest of the family at home. Either way we, as families,
always seem to be in transition which, in a lot of ways
is a natural occurrence but for some of us it feels like it
happens way too often.
Inside ue...
this Iss
3
5
13
In this newsletter, you will find an
article from the STEP by STEP document (which is
available on line) for youth with disabilities. This
document on transitions is written by the Cerebral
Palsy Association in Calgary but is a very generic
document. The document can be a very useful “tool”.
It may not be for everyone but it is there as a resource.
Now for a bit of an update. My
first year as President is over, man did it go by fast! I
am not sure that I have followed through on all of the
duties of the President of CAWS but I am working on
it and will enjoy the opportunity to represent you for
another year. I have had the mentorship of Diane and
Gloria, thank goodness for that.
National CAWS Week – I had a
meeting arranged with my local MP to continue the
work that Diane began on the National CAWS Week
but we had to cancel due to the MP being called back
to Ottawa. We haven’t been able to reschedule to date
but hopefully soon there will be some time available.
CAWS sent out a music survey in partnership with
JB Music as a follow up from the conference and we
await the next step.
CAWS Contacts
Helpful Resources
Bulletin Board
Summer newsletter  June 
4
6
14
Across the Country
AGM meeting minutes
Donation Form
Mike (membership) and I continue to work on the
membership and to work on figuring out the best way
to link everyone. A work in progress!
CAWS Directors held the annual
general meeting on June 24 by conference call. Thank
you to the directors and members that joined the
meeting. You will find the minutes in this issue. I
am very excited to announce the location of the 2013
CAWS Family Conference will be Saskatoon,
Saskatchewan. Now the planning and fund raising
starts…
I continue to have opportunities
to communicate with many families across Canada
and recently with a young lady from Alberta, Jenny
Parkins. Jenny made contact regarding her brother
and a video that she has put together. I am very
impressed that she took her passion and put it to work.
This video is part of a competition and she hopes that
many people will visit the video, if she is the winner
she will donate a portion of the winning to CAWS. Her
video has made the top 20 and will be posted on the
website: whoinspiresu.ca. Voting starts on July 12.
Take some time to visit the website and vote for Jenny
– she will inspire you.
Toonies for Time
... the impossible takes a little longer for the dream
Help support CAWS awareness
Interested in selling
Toonies for Time hearts
to help support CAWS?
Contact Orvella at 403.649.5604 or
[email protected]
“A journey of a thousand miles begins with a single
step.” Chinese philosopher Laozi
Everyone enjoy your Summer!
Orvella Small
President
Dream Makers
Consider becoming a Caws Dream Maker
Summer newsletter  June 
ASSOCIATION
PRESIDENT
Orvella Small
Box 5025
High River, AB T1V 1M3
(403) 649-5604
(403) 652-0716
[email protected]
PAST PRESIDENT
Diane Reid
209 Inverness Park SE
Calgary, AB T2Z 3K6
(403) 257-3581
(403) 660-2155
[email protected]
TREASURER
David Olson
248B East 21st. Street
North Vancouver, BC
V7L 3B6
(604) 990-7718
[email protected]
EDITOR/SECRETARY
Gloria Mahussier
19 Pereverzoff Place
Prince Albert, SK. S6X 1A8
(306) 922-3230
(306) 922-3457 (fax)
[email protected]
MEMBERSHIP
Mike Mahussier
19 Pereverzoff Place
Prince Albert, SK. S6X 1A8
(306) 922-3230
(306) 922-3457 (fax)
[email protected]
VIDEO LIBRARIAN
Barbara Morawski-Bergeron
(514) 697-0178
[email protected]
CONTACTS
MUSIC CAMP COORDINATOR
Basia Morawski-Bergeron
102 MacDonald St.
Kirkland, QC
H9J 3Z7
(514) 697-0178
[email protected]
Alberta
Jaimie Tinling
32 Cascade Place
Cochrane, AB T4C 1G6
(403)855-1115 (403)837-7408
[email protected]
British Columbia
Cindy Sanford
Box 26206
Richmond, BC
V6Y 3V3
(604) 214-0132
[email protected]
Manitoba
Position Vacant
Volunteer required
MB Convenor for Family Events
Lucille Beaudin
Box 30
St. Eustache, MB R0H 1H0
(204) 353-2551
[email protected]
Youth Correspondent
Sheena Small
[email protected]
Visit our website
www.CAWS-CAN.org
Nova Scotia
Anne Louise Desrosiers
1675 Cambridge St.
Halifax, NS B3H 4A5
(902) 422-0270
[email protected]
New Brunswick
Marianne Mepham
44 Calais Crescent
Lower Coverdale, NB E1J 2K9
H: (506)384-9426
W: (506)860-2374
Marianne.Mepham-Newton
@horizonnb.ca
[email protected]
Newfoundland
April Williams
1680 A Torbay Rd
Torbay, NL A1K 1H2
(709)437-7596
[email protected]
Ontario
Monique & John Plessas
163 Wolverleigh Blvd.
Toronto, ON M4C 1S1
[email protected]
Quebec
Postion Vacant
Volunteer required
Saskatchewan
Kelly Fraser
3434 Eagle Crescent
Prince Albert, SK S6V 7N5
(306) 922-3783
[email protected]
Nunavut/N.W.T.
Position Vacant
Volunteer required
IF YOU WOULD LIKE TO fiND OUT M ORE ABOUT THE ROLE OF A PROVINCIAL CONTACT
contact Orvella Small, CAWS President
If you would like to volunteer in your province, call your Provincial contact person.
Summer newsletter  June 
ACROSS
OUR
Saskatchewan
New Provincial Contact
My name is Kelly Fraser and I am your new
Saskatchewan contact for CAWS. My family and I
live in Prince Albert. My husband James (carpenter),
son Donovan (11 yrs), daughter Lexi (9 yrs – has
WS), son Tyson (7 yrs) and daughter Kirtsen (4 yrs)
and myself (an Educational Assistant) love living
up north where you have access to a dozen lake
and campgrounds within an hour drive. We love the
outdoors!
My daughter Lexi was diagnosed on Mother’s
Day, 2001. She was only 8 1/2 months old at the time.
We were very thankful to have a diagnosis after many
hospital stays and her
constant weight loss and
lack of development. We
now knew why.
It was a
rollercoaster of emotions
when we first heard of
her diagnosis and still
is to this day! She has
had a feeding tube since
9 months old. She is
starting to learn how to
eat solids foods but it is
a long struggle for her.
She now only needs the
tube when she gets sick
and we need to keep the nutrients in her. I guess it does
come in handy at times. Medications that taste gross
can just go straight into the tube and she doesn’t have
to taste them.
Lexi is now in grade 2. She did two years of
kindergarten and two years of grade one. She will now
move along with this classroom and do a modified
program as needed. She is fully integrated into our
neighbourhood school and has an EA (Educational
Assistant) that is with her full time to help. In her spare
time she enjoys going to a girl’s group. She started in
Sparks and has now moved up to Brownies. They sing
songs, work towards badges and do crafts. She LOVES
it.
We have attended the last two CAWS Family
conferences and had a blast. We were able to meet
other families and learn new things. We quite enjoyed
talking to friends and families that are going through
the same things. Lexi enjoys seeing all of the people
COUNTRY
she knows. This year she met a good friend from B.C.
named Riley. They write back and forth to each other
and she can’t wait to get mail from her “just like me”
friend!! It is very cute.
I am hoping to get everyone together in
the of summer of 2011. If you have any suggestions
for place, events, activities or you have a place you
would like to volunteer for us to use as a gathering
spot, please don’t hesitate to let me know. It would be
nice if I could get everyone to email me their contact
information so I can have a list of whom to contact
when we have the details figured out. If you could
include the ages of the children it would be easier to
plan things as well. Thanks.
If you have any
questions, new families
you know of, or
suggestions please feel
free to call or email me.
We are always eager
to meet new families
and always excited to
see the ones we already
know.
My information is:
3434 Eagle Crescent
Prince Albert,
Saskatchewan
S6V 7N5
(306) 922-3783
[email protected]. Please write “Williams”in
the subject line so if it goes to my junk mail I will
know to forward it and mark it as safe. Thanks.
Hope to hear from everyone soon.
Kelly, James, Donovan, Lexi, Tyson and Kirsten
Summer newsletter  June 
Visit our website
CAWS-CAN.org
HELPFUL
RESOURCES
CAWS Youth Correspondent
Hey everybody!
Guess what – I think most of you know I have a candy
store called, Sheena’s Sweets and Such, at least my
mom always talks about it. Well, this past January I
paid off my loan for my business 6 months early.
YIPPEE!
I have volunteered to be the CAWS Youth
Correspondent. I would really like to hear what some
of you are doing out there? Tell me your story! You can
submit it to [email protected] and I will respond to
you in the next newsletter or you can send a story right
to Gloria at [email protected] and she will let
me know you sent something in.
Stay Sweet !
Sheena Small
from High River
Visit our website
www.CAWS-CAN.org
The Saskatchewan Association
for Community Living has an
online tranisition handbook,
“School to Life
Transition - 5 Steps to
Successful Planning”.
Transitions
Transition is the adjustment, development and
change experienced when an individual moves from
one phase in their life to another.
Transition planning is necessary for youth
with disabilities to ensure that they access all
necessary supports to fulfill their needs and to
familiarize themselves with the programs, services and
information available within their respective
communities.
If you are a young person moving toward
adulthood – or a parent, teacher or a friend of one,
this manual is designed to help you.
The activities in the process must be
coordinated among and by everyone involved. The
activities must be designed to produce an outcome.
The young person select goals for adulthood, and
the activities and services in the plan are designed to
reach these goals – whether employment (integrated,
supported, ndependent), higher education, vocational
training or independent living or community
participation that confer maximum independence for
the young person.
The outcome must be based on the
individual’s needs, preferences and interests. The
activities in the process can include instruction, related
services, community experiences, the development
of employment and other post-school, adult living
objectives, functional vocational evaluation, and,
when needed daily living skills. A well-managed
transition plan gives young people with disabilities
the chance to have the greatest possible independence,
competence, enjoyment and participation in life.
The document includes
outlines of when to
do what and is very
helpful. You can
access the document at
http://www.cpalberta.
com/ToolsForLifePDF/
StepByStep.pdf. It is
free to download and use
it as a guide.
You can access the handbook
through the website: www.sacl.
org or for a copy, telephone:
(306) 955-3344.
Summer newsletter  June 
ANNUAL
GENERAL
MEETING
Minutes of the Annual General Meeting
Canadian Association for Williams Syndrome
Thursday, June 24, 2010
Members present: Basia Morawski-Bergeron, Gloria Mahussier, David Olson, Yves Pheoret, Diane Reid, Cindy
Sanford, Orvella Small
Regrets: Mike Mahussier, Basia Morawski-Bergeron, Sheena Small, Marianne Mepham-Newton, April Williams,
Kelly Fraser
The annual general meeting was held via telephone conference call. A quorum being present, Orvella Small,
Chairperson called the meeting to order at 4:05 PM and welcomed everyone.
1.
Adoption of Agenda
Moved: Cindy Sanford
Seconded: Yves Pheoret
That the agenda be adopted as distributed. Carried.
2.
Adoption of AGM June 2009 meeting minutes
Moved: Diane Reid
Seconded: David Olson
That the annual meeting minutes held June 25, 2009 be adopted as distributed. Carried.
3.
Reports
Upon motion duly made it was unanimously resolved that the members do hereby ratify and confirm all the
director’s and officer’s acts and proceedings during the fiscal year ended December 2009.
Moved: Gloria Mahussier
Seconded: Yves Pheoret
4.
Presentation of Financial Statements
Moved: David Olson
Seconded: Diane Reid
That the financial statements be accepted as distributed. Carried
Signing authorities for the 2010 – 2011 fiscal year
Motion: That the signing authorities of the Canadian Association for Williams Syndrome be Orvella Small,
Chairperson, Diane Reid, Past Chairperson, David Olson, Treasurer, Cindy Sanford, Director. Any two of the
above listed may sign on behalf of the association.
Moved: Gloria Mahussier
Seconded: Yves Pheoret
5.
Election of Directors
Nominations were opened. The following persons were elected to act as directors of the Association until the
close of the next Annual General meeting.
Orvella Small
President
Diane Reid
As Past President
Gloria Mahussier
As Secretary
David Olson
As Treasurer
Cindy Sanford
BC contact
.
Summer newsletter  June 
6.
Auditor
Moved: David Olson
Seconded: Cindy Sanford
That the appointment of an auditor of the Association be waived effective for the current fiscal period of the
Association. Carried.
7.
Bylaws
Moved: Diane Reid
Seconded: David Olson
That the Bylaws of the Association be reviewed and revisions to be presented at the 2011 Annual General
meeting. O. Small and Y. Pheoret offered to lead the bylaw review.
8.
OTHER BUSINESS:
o
Brochure
G. Mahussier is developing a new brochure. Y. Pheoret will do the French translation of the new brochure.
o
Fundraising
The topic of Planned Giving was discussed. O. Small will discuss financial implications with D. Olson.
o
Family Conference 2013
Motion: That the 2013 conference be held the first weekend of August 2013, in Saskatoon, Saskatchewan.
Moved: Gloria Mahussier
Seconded: Diane Reid
o
Membership
Motion: That provincial contacts or CAWS families can request subsidies from the Chairperson to host local
events to increase CAWS awareness.
Moved: Diane Reid
Seconded: David Olson
CAWS will run a pilot project in Ontario over the coming year to develop membership so that families can be
connected. Y. Pheoret and O. Small will lead the pilot project.
o
Newsletter
The “Toonies for Time” hearts will be included in the newsletter membership mailout.
o
CAWS Awareness Day/Week
O. Small is working on this event.
o
Website
Terri McKenny continues as webmaster.
Motion: That a place for online donations be added to the CAWS website.
Moved: Diane Reid
Seconded: Yves Pheoret
o
Registered Disability Savings Plan
O. Small will send information to be placed in the newsletter.
9.
Orvella Small adjourned the meeting at 6:45 PM. Carried.
Orvella Small, Chairperson
Gloria Mahussier, Secretary
Summer newsletter  June 
SUPPORT
CAWS
My differences
My face may be different
But my feelings the same.
I laugh and I cry
And take pride in my pains.
To God I’m no different.
His love knows no bounds.
It’s those here among you,
In cities and towns
That judge me by standards
That man has imparted.
But you I have chosen
To help me get started.
For I’m one of the children,
Unique and so few,
That came here to learn
The same lessons as you:
That love is acceptance,
It comes from the heart.
We have the same purpose
But not the same start.
Summer newsletter  June 
Dream Makers
Helen Deckert Kitchner, ON Bronze sponsor
Wandrienna Everdiena Shibley Calgary, AB Silver sponsor
Sharon McColl Edmonton, AB Silver sponsor
Marianne & David Newton Lower Coverdale, NB Silver sponsor
Jim & Diane Reid Calgary, AB Platinum sponsor
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: ____________________________________________________
Summer newsletter  June 
Family Dream Maker
Level
Dollar Amount
Platinum
$2000 & Up
Family Rewards
$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 2013 Family Conference
3 nights (Conference room rate)
Gold
$2500
$500 a year for 5 years
Recognition on CAWS website
Hotel room for 2013 Family Conference
1 night (Conference room rate)
Sponsor on Conference T-shirt
Silver
$1000
$200 a year for 5 years
Your story in newsletter (we will help)
Recognition on CAWS website
Award Trophy for CAWS Canadian Idol
(CAWS to provide trophy)
Bronze
$500
$100 a year for 5 years
Your story in newsletter (we will help)
Recognition on CAWS website
Summer newsletter  June 
Your gifts are what keeps us active and operating. CAWS would like to
gratefully thank individuals for their recent contributions. Thank you.
In memory of Johanna Mary Reid (Jodi’s grandmother) who passed away January 4, 2010
* James & Joy Storey of Sherwood Park, AB
* Wayne & Irene Welsh of Rocky Mountain House, AB
* Norman Welsh of Rocky Mountain House, AB
* Juanita & Terry Davies of Rocky Mountain House, AB
* Diane & Kevin Olmstead of Rocky Mountain House, AB
* Hilda Welsh of Innisfail, AB
* Rita Steele of Drayton Valley, AB
* City of Powell River on behalf of Karen Prentice
* Adela Griffith of Innisfail, AB
* Anna Pulsifer and co workers of Karen Prentice
* Dianne & Albert Tink of Condor, AB
* Susan & Charles McCallum of Powell River, BC
* Colleen O’Hara of Delta, BC
* Duane & Susan Mather of Calgary, AB
* Claude & Janice Albert of Warburg, AB
Your gifts are what keeps us
* Allan & Nancy Gruninger of Warburg, AB
active and operating
* Barb & Harold Lesser of Camrose, AB
* Betty Paukstat of Warburg, AB
* Madeleine Dressler
Thank you for supporting CAWS.
Francoise Trudel of Aylmer, QC for Toonies for Time. Thank you for all your efforts and thanks to the
following for filling out our Hearts....lets show the world.
* Chantal & Auerrui
* May Chow
* Tyrrne Wilson-Om
* Sophie
* Mirela
* Angelique Lucas-Witte
* Simon Bryan
* Esther Liulo
* Ghazala Amir
* Chandra Suchak
* Ela Raposo
* Joy Raymer
Toonies for Time hearts sold by Barbara Morawski brought in an incredible donation amount for CAWS.
Wow Barbara -- thanks for all your efforts and getting out there to spread CAWS awareness.
Summer newsletter  June 
Donatons received
In Loving Memory of Joanne Reid
Jodi Reid’s Grandmother
Hilda Welsh
Duane & Susan
Mathers
Ria Steele
James & Joy
Storey
City of
Powell River
Wayne & Irene
Welsh
Adela Griffith
Norman Welsh
Anna Pulsifer &
coworkers of Karen
Madeline
Dressler
Diane & Albert
Tink
Susan & Charles
McCallum
Collen O’Hara
Betty Paukstat
Diane & Kevin
Olmstead
Allan & Nancy
Gruninger
Barbara &
Harold
Lesser
Summer newsletter  June 
Claude & Janice
Albert
Juanita & Terry
Davies
BULLETIN
ADDRESS CHANGES
BOARD
COLUMN CONTRIBUTIONS
Please send your contributions for future newsletter
features to :
Gloria Mahussier
19 Pereverzoff Place
Prince Albert, SK. S6X 1A8
Phone: (306)922-3230
Fax: (306)922-3457
E-mail: [email protected]
Please send your address changes
and corrections to:
Mike Mahussier
19 Pereverzoff Place
Prince Albert, SK S6X 1A8
phone: 306-922-3230
fax: 306-922-3457
[email protected]
Across the Country: A column to share with families
events across the country and encourage parents to
write about accomplishments their child or sibling
has made in regards to the individual with WS.
Achievements, no matter how great or small, can be
enthusiastically shared!
Happenings
July 7 - 10, 2010
2010 National Convention
will be held at the
Ballpark Hilton, St. Louis,
MO
August, 2013
CAWS Family Conference
Saskatoon, Saskatchewan
What is happening in your province?
Give your Provincial Contact a call!
Helpful Resources: Resources such as video tapes,
computer software, games, books, etc., that parents or
the family’s interagencies have found to be helpful in
assisting our children meet developmental milestones
and achieve specific learning concepts.
Medical/Educational information: Articles
concerning research and information pertaining to
ongoing projects on medical and education issues.
Youth Voice: A page to place and share works by
individuals with WS, be it an art sample, a photo, an
essay, poem, stories, etc.
Website Bulletin Board: Ask a question or share
information. Please forward your bulletin board
contribution to [email protected] with the words,
“Bulletin Board” in the subject line of your email.
Please allow one week for your posting to appear on
the bulletin board. All questions to be posted will be
edited and reviewed before posting.
Have you ordered yet?
DID YOU KNOW?
When you order through the QSP magazine program,
over one-third of the subscription price “stays at
home” to support CAWS programs.
Visit CAWS-CAN.org and enter our Group # 17436 to
place your order.
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. We reserve the right to edit all
material.
Visit our website
www.CAWS-CAN.org
NEXT SUBMISSION DEADLINE
Please support our national fundraiser.
Summer newsletter  June 
October 15, 2010
THANK
YOU
from the editor:
Thank you to Weyerhaeseur Canada, Prince Albert Division for the paper for this printing of the newsletter and to those that
sent in contributions. The deadline for next issue is October 15, 2010.
Gloria Mahussier
Your gifts are what keeps us active and operating. CAWS would like to gratefully thank
individuals for their recent contributions. Thank you.
Lloyd & Beverley Findlay of Danville, QC a tribute to their granddaughter Amy-Lynn.
on the occasion of our granddaughters birthday. Happy Birthday Amy-Lynn!
Donation made
Mark Slater of Toronto, ON a donor-designated gift via Canada Helps.
Donation made via United Way of Lethbridge & South Western Alberta, Donor Choice Program.
Donation made via Ontario Employees’ & Pensioners’ Charity Fund of Toronto, Ontario
Barbara & Gordon Kizuik of Clandeboye, MB on the occasion of Alysia Roy’s birthday on October 21st.
Happy 16th Alysia!
Mary and Rene Malo of Pine Falls, MB on the occasion of Travis Mahussier’s birthday on May 14th.
Kojo Tuula & GS Burrard via The Hydrecs Fund of Vancouver, BC
Nancy De Corte of Toronto a donor-designated gift via United Way of Greater Toronto.
Orvil Swayze of Carnduff, SK (Sheena Small’s grandpa) donated in honour of his granddaughter and her
accomplishments. Way to Go, Sheena! You Go Girl!
Gingerbread House Tickets sold via Sheena Small raffle at her store. Gingerbread sleigh & reindeer
donated by Diane Reid. Thank you Sheena for all your work and thank you Diane for your beautiful
creation.
DONATION FORM
Attached is my cheque payable to CAWS in the amount of:



As a memorial to _____________________
A tribute to __________________________
On the occasion of ____________________
(Birthdays, Anniversary, Graduation, etc.)
Donations to the Canadian Association for Williams Syndrome are tax deductible. Canada Customs & Revenue
Agency #879205516 RR001. All donations may be forwarded to: CAWS National Office, P.O. Box 2115,
Vancouver, B.C. V6B 3T5
Thanks for your support!
Summer newsletter  June 