2006 Winter

PARENT
TO
PARENT
A publication of the London Down Syndrome Association,
serving Elgin, Huron, Middlesex, Oxford and Perth Counties. Winter, 2006
LDSA Website
Address:
www.ldsa.ca
Guest Speaker
At our annual silent auction, dinner and dance,
we were honoured to have as our guest speaker, Russell Hubbard.
During his speech, a pin could have been heard dropping on the floor. As sent to me in an email letter from
Bev Bialik, this pretty much sums it up, in regards to Russell’s speech and the silence while presenting: “He
wasn't expected to speak about anything in particular, just let us know about his life and in Russell's
case he chose to talk about all of the important people that have supported him. Personally, I
thought he did a fantastic job, delivering his speech with confidence and skill. Russell is a very wellspoken young man, and had the crowd in the palm of his hand”. Needless to say, a standing ovation
was given to Russell after his speech was over.
The meaning of self advocate is best described by Ed Hager, and Russell is certainly a self advocate.
A self advocate is one who stands up for themselves, fights for their own rights, addresses
discrimination that they see, and speaks their mind on their own behalf.
One of the best gifts we as parents and grandparents can give is to foster the courage in our
children to be a self advocate.
A copy of his speech can be found on page twenty-two.
Contacts & Representatives, 2006-2007
President
Vice-President
Paul Van Eyk
Randy Bilton
Secretary
Bev Bialik
[email protected]
[email protected]
[email protected]
Treasurer
Sandy Bogart
Peer Representative
Heather Verdun
Newsletter Editor
Bernie Douglas
[email protected]
[email protected]
[email protected]
Thames Valley District School Board
London District Catholic School Board
S.E.A.C. – Public System
S.E.A.C. – Separate System
Andy Loebus
Steve Nadeau
[email protected]
[email protected]
Ed Hager
Lucille Panziera
Advisor to the President
Rose Price
Past President
Ed Hager
[email protected]
[email protected]
Teen Coordinator
Jane Riviere
London Health Sciences Centre
Susan Blass
[email protected]
Sibling Representative
Tiah Eccles
[email protected]
[email protected]
Scrapbook Facilitator
Diane Vieira
[email protected]
LDSA Address: 1129 Gladstone Drive
RR#2, Belmont, Ontario, N0L 1B0
Tel.; (519) 644-1867
E-mail Randy: [email protected]
Tots Coordinator
Sarah Small
[email protected]
Non-profit Charitable Organization
BN: 86694 2493 RR 001
——————————————————————————————————————————
Disclaimer
This newsletter reports items of interest relating to Down syndrome and will provide a forum to others.
We do not espouse any particular political or religious view. ”Parent To Parent” does not recommend any
treatment or therapy. Individuals or organizations referred to do not necessarily endorse this publication
or the editors. We wish to bring together those interested in Down syndrome and attempt to create an
optimistic attitude and outlook. The editor reserves the right to make corrections as required.
Material in this newsletter cannot be reproduced without permission.
London Down Syndrome Assn.
Winter 2006
2
From The Desk of Our President
Well, where do I start !
This has been a very busy fall. We had so much stuff going on that I was glad to be laid off most of the
time. I do not know how Ed or Rose ever did this working at their busy full time jobs. My schedule in
the new year calls for less work and more of me serving you !
Camp Talk About IT
D.S.A.O. Conference
As of deadline time, the speech camp is doing
great and firing on all cylinders. Liz and her
gang have done a great job with nothing but
positive comments coming my way from
parents. It will be my hope that if this program
does continue in the new year, we will keep the
same children, if mom and dad wish, and bring
in a new class next fall.
On the second last weekend of October, five
members of the LDSA attended this conference in
Peterborough. We all took in sessions presented
by professionals from all over Eastern Ontario.
Because all five of us are on the fund raising
committee, Saturday night ended up being a long
fund raising meeting. The topic was “Backup Plans”
and two out of the three plans we developed
actually came into play during the Silent Auction,
Dinner and Dance. Earlier that night I went to the
DSAO board meeting and to dinner with the gang.
Everyone is this group has a slightly different angle
and if you ever get a chance to listen to Dr Ashley
Malloy, Order of Ontario, and President of the
Down Syndrome Association of Toronto, keep your
ears open because he may be the smartest man in
our area, who is dedicated to the cause of Down
syndrome. Ashley is now on the World Down
Syndrome Counsel as the Canadian Rep.
I do realize that however great our camp is, this
format can not work for all children in our
membership. With this in mind I will ask the
LDSA Board to consider reinstating the Speech
Bursary Program in our May budget. We are
not at the stage where we could possibly help
every child but we are close.
Just a reminder, Your $10 membership is due
January 1st, 2007. This is important because in
the future, we may only be able to provide such
programs to registered active members. It has
come up in my fundraising canvassing that the
more active members we have, the more
donations we will get. The more donations we
get the more money we have for speech !
John Labatt Centre
Our watch is on for more upcoming events for us to
take advantage of. Ours teens had their night and
our friends of the association enjoyed Elton John. I
personally had a lot of fun seeing the Wiggles.
Disney On Ice is coming in the new year so please
contact me if you are interested in group sales
tickets.
Down Syndrome Association
of Ontario
In September, I attended my first D.S.A.O.
meeting in Oshawa. I quickly discovered that
this is a forum that could teach us a lot about
everything we need to know about running a
Down syndrome support group. The current
board is a warm supportive group that is more
than willing to help us out. This is my true
feelings. I’m not just saying this because we
will be starting a newsletter exchange and they
are reading this ! They can show us ways to
cut costs, write proposals and lobby more
effectively. The next meeting is early in the new
year and I will be asking one other LDSA board
member to come along to catch anything that
may fly over my head.
London Down Syndrome Assn.
Volunteers
I am very proud of the volunteers that we have, but
we are burning them out.
We are looking for more volunteers for various
events and programs. In the future some programs
that we may offer just might have a volunteer
requirement attached to them. Can you help them
as they help us run various programs?
Winter 2006
3
From the Desk of Our President…..cont’d
Julie’s Journey
Fundraising Report
Shortly after our fundraiser,
we were contacted by an
organizer of another auction
for a worthy cause.
Evan is a four year old boy
with Down syndrome, who is
in the middle of treatment for
leukemia.
There was a gentleman at
our event who is special to
someone in our group. He
lives with his mom and dad near Julie and
Evan and they reported back about the
success of our event and the Julie’s Journey
organizer called for help. For Julie, I built the
evening program since building ours was so
fresh in my head. We also shared information
about both events and we learned from each
other.
On Friday November 24th, my wife, Dianne and
I attended this great event in Burlington, a
silent auction that I could sit back and enjoy;
that has not happened in a few years. We sat
with Allen and his mom and dad and a group
from Hamilton. We ended coming home with a
handmade Teddy for our daughter and an
appreciation of how lucky we are that our girl’s
only issue has been low blood sugar.
Wow ! What a night. This year’s Silent Auction,
Dinner and Dance was our most successful
event to date. Rose, Sandy, Bev, Carol, Lesley,
Kym, Deanna, Ed, Steve, Paul and a whole lot
more people really came through. The one
thing that really showed this year was all the
hard planning.
Thanks goes to Natalie for letting us take over
her basement. The sponsors really stepped up
this year. Please consider them first when you
make a purchasing decision. We could not get
many more into that hall and we have some
tough decisions on next year.
As of right now the Silent Auction will be held
next year on October 27th. We had some
people come out this year to our event just
because they did not want to go to a Halloween
party, so next year we may advertise us as the
alternative to such events.
The fundraising committee will meet regularly
and keep you updated.
Festival of Fashion
The Daughters of Penelope will hold their 17th
annual fashion show at the Hellenic
Community Centre on Southdale Rd, in
London, on Sunday April 15th at 3:30pm.
Bingo
The LDSA has been invited by the Donnybrook
Branch of The Royal Canadian Legion,
Dorchester, Ontario to volunteer at one of their
bingo’s in the new year. We then would
receive a portion of the proceeds. As of right
now, I am suggesting that the Moms’
Scrapbooking Program send in their moms and
this is how we can fund that group for the next
year. If we do well, we may be asked back and
I will ask people who receive other programs to
take part.
This year we, The LDSA, will be the beneficiary
of this event.
We will have two of our members well dressed
in front of the crowd and if you ask Sandy, Bev,
Ed, Steve or myself, we will tell you that they
serve a great meal as we attended this year’s
function. We will also get a chance to have a
display table, so again SEND US PICTURES
(with permission to use)!
The fundraising committee has lots of other
great ideas on the go and we will keep you
updated.
We would like to add members to our fund
group, so if you are interested please let me
know.
We will be selling tickets as soon as we get
them, and I hope to see you there.
London Down Syndrome Assn.
Winter 2006
4
Down Syndrome Awareness
Week Declaration and Stroll
From the Desk
of Our Treasurer
The big news for this newsletter
edition is the success of our Silent
Auction, Dinner & Dance. There
were 238 people at the event,
which is an increase of 60% in
attendance. It was a totally amazing
night. I loved to see all of our
members up dancing and especially
enjoyed watching the breakdancing teens. The net profit of the
fundraiser was approximately $16,400.00. I want to
say a big “thank-you” to all the members of the
fundraising committee and all the volunteers that made
that night such a great success and a wonderful
memory.
On Saturday, November 4th, a small but fun loving
group of our members got together at the Covent
Garden Market in London.
The Town Crier announced Down Syndrome
Awareness Week and we were off around the
block!
This was one of three events that day. The other
two were speech camp in the morning and Teen's
Night that afternoon. Everyone can not make them
all.
Thanks to those who came and next year we will
defiantly do this bigger!
As we now have approximately $17,838 in the bank,
the budget needs to be determined for the upcoming
year. This is where you, the members, should become
involved. As members of this association, the Board of
Directors, require your input as to what services you
would like us to provide for your child. Please feel free
to contact me via email at [email protected] or by
phone at (519)268-1666 to express your ideas.
Thanks also goes out to the manager of the market
who allowed us to move the event closer to the
building and farther away from the road for safety
sake.
There is a photo of the event on page 16.
In connection with voicing your opinion on how the
LDSA spends their money, members should be
advised that only PAID UP members are entitled to
vote at any general meeting. Our membership list has
over 160 families on it, yet only about 20 families are
members in good standing. Of course, we welcome any
and all opinions, but only those members in good
standing will have a vote. The membership fee is $10
per year and is due January 1st of each year. If you are
unsure if you have paid your dues, please contact me.
If all members were to pay the nominal $10 per year
dues, then our association would have extra money to
put into programs that the members want.
January 13, Line dancing, Hamilton Road Seniors
Centre (Teen/Young Adult outing)
January 22, LDSA Board Meeting (General
business)
February, Disney on Ice (Dates not available at
deadline)
February 16, Cooking class, Loblaws Superstore
South (Teen/Young Adult Outing)
March 5, LDSA Board meeting (Budget)
March 21, United Nations World Down Syndrome
Day and DSRI Fundraiser
May 7, LDSA General Meeting
July 14, LDSA Annual Summer Picnic at
Springbank Park
I know I harp on this subject with every newsletter, but I
cannot stress enough that the LDSA needs more
volunteers. As this association grows we need more
people to be involved in the running of various
programs. We cannot even consider the idea of
increasing our existing programs if we do not have the
volunteers and committed people to run them.
Remember, this association is run solely by volunteers.
So, if you are interested in volunteering in any way,
please contact me.
In closing, I wish you and your family a happy
holiday season and a great new year.
I hope that everyone has a safe and happy holiday
season.
Randy Bilton
President
Sandy Bogart
Treasurer
London Down Syndrome Assn.
Winter 2006
5
Financial Statement
4th Annual Silent Auction, Dinner and Dance
SALES
2005
2006
Ticket Sales (2005=149 and
2006 = 264)
1,800.00
5,280.00
Bar Sales
1,294.00
0.00
Auction Sales
7,302.00
12,026.00
Mystery Gift
540.00
545.00
50/50 Tickets
470.00
310.00
Yellow Brick Road Sales
0.00
1,000.00
Bracelet Sales
0.00
111.00
Calendar Sales
0.00
140.00
Balloon Pop Sales
0.00
500.00
T- Shirt Sales
0.00
191.00
60.00
20.00
Cash Donations
0.00
3,110.00
TOTAL SALES
11,466.00
23,233.00
195.12
2,659.07
Elton John Tickets
0.00
2,159.50
Calendar Costs
0.00
84.00
T- Shirt Costs
0.00
100.70
Membership Renewal
EXPENSES
Meal
Liquor License
75.00
0.00
Bar (See "details")
804.99
0.00
General & Supplies
81.18
368.99
100.00
658.67
0.00
249.98
50.00
0.00
225.00
397.50
Decorations
Cutlery Rental
Bartender
DJ (450-225 reimburse DSRI)
Gas
55.00
0.00
0.00
153.68
Candle Holders, Mirrors
36.35
0.00
Glasses
48.58
0.00
TOTAL EXPENSES
$ 1,671.22
6,832.09
NET PROFIT
$ 9,894.78
$16,400.91
Materials for Signs
Actual attendance for 2006 was 238 people.
London Down Syndrome Assn.
Winter 2006
6
Framed Certificates Were Presented In Recognition
Of Their Leadership As Past Presidents and Their Dedication To The
London Down Syndrome Association,
Its Members and Their Families.
October 28th, 2006
For those of you who were unable to attend our annual Silent Auction, Dinner and Dance, a certificate of recognition for
past services was handed out to Ken Sumnall and Kevin Henderson.
Also, honourary mention was given to Rose Price (our current advisor to the president) and Andy Loebus (our Thames
Valley District School Board S.E.A.C.—Public System representative) for being the co-founders of our annual Silent
Auction, Dinner and Dance.
Ken Sumnall (left) is being presented with a framed certificate of
recognition at our annual Silent Auction, Dinner and Dance. The
presenter is our current president, Randy Bilton.
Ken was president of the "Parent-to-Parent for Down Syndrome”
support group from 1985 to 1990 and attended with his wife Joan
the first public meeting that was held at the former Scatcherd
Children’s Centre on Sarnia Road in September 1983.
Parent-to-Parent for Down Syndrome was founded in January 1983 by a group of five mothers who were involved in
gross motor sessions with their infant children with Down syndrome. They all felt a real need to get together and share
there needs and emotions. Meetings were held at the homes of these mothers.
Two of these mothers, Brenda Atchison and Lorraine Hewett, became the driving force behind the creation of Parent-toParent and were the groups first Coordinators or Co-Presidents. A radio interview followed by a newspaper article in the
London Free Press documented parents concerns about the lack of support and information available in the hospital at
the time of birth and that building on the collective experience of parents, they could act as a resource group to local
hospitals and offer support to new parents. With those two objectives in mind Brenda and Lorraine set out to organize
the group. Of course in the background were there spouses Al and Jim.
Some other early members were Linda & David Vince, Helen & John Olthoff, Myrna & Jim Fisk, Cathy & Dwayne
Hubbard, Marie & Randy Hatherall and Deidre & Grant Monteith.
Kevin Henderson (right) accepts his framed certificate of recognition
from Randy.
Kevin was our president for a two year term from December, 1999 to
December, 2001.
Kevin also created the Bylaws and Constitution, our website and
acquired the charity status. In March, 2000 under Kevin’s leadership,
the “Parent to Parent for Down Syndrome” name was changed to
"London Down Syndrome Association".
London Down Syndrome Assn.
Winter 2006
7
Thank You To Our Donors
LDSA acknowledges the generosity of all its donors, including those individuals,
businesses, corporations, and employee groups, which offer support for the work we do.
Your gift to LDSA will make a huge difference in the life of someone with
Down syndrome. It is through the community-minded generosity of people like you
that we can continue to serve those living with Down syndrome. We thank you!
3M Canada
A & A E-Z Brush & Oiler
A & M Garden Centre Ltd.
A&P
Adkins Financial Services Inc.
Ahepa Family Charity
Appliance Canada
Athletic Club
Battlefield Equipment Rentals
Beauty Total
Belmont Foodland
Bialik Family
Bilton Family
Black Creek Pioneer Village - Toronto
BOB FM
Body Essence Tanning
Brad Troop
BrassCraft (Masco Canada)
Buckland Customs Brokers Ltd.
BX 93
Cabral Family
Canada Post
Canadian Geographic Enterprises
Canadian National Exhibition
Canadian Tire
Candace Loosley
Carolyn Rintoul
Carpet Place Flooring Centres
CAW Local 1520 Hall
Centennial Hall
Charm Diamond Centre
Checker Limo
Cindy Dearmo
Cindy Taylor
Co Operators Insurance
Collins Formal Wear
Core Industries
Cousins Family
Coyle & Greer Awards Canada Ltd.
Crabby Joes
Crozier Family
Curiosities Gift Shoppe
Dale Downie Pontiac Buick
Deb Henshaw
London Down Syndrome Assn.
Winter 2006
Delaware Speedway
Delta Faucet (Masco Canada)
Dillon Consulting
Doctus of London
Dollarama – Wellington Road
Domino Pizza
Donna Wood
Dorchester Farm & Pet Supplies
Dr. Doan
Dr. Clive Friedman
Dr. Manfred Friedman
East Park
East Side Mario's
Electro Graphix Printing
Esthetics Salon
Fadi's Beauty Shop
Falconwood Farms
Fanshawe Pioneer Village
Flagswipe Paintball
Fleetway Bowling Centre
Forest of Flowers
Framing & Art
Fresher's Sports Car
Friend of Bobby Orr
Global Spectrum Entertainment
Grand Theatre
Hack Family
Harmony Grand Buffet
Heeman Greenhouses
Henderson Gallery
Hera’s Beauty
Heritage Country Gardens
Holdaway Family
Home Styles/Z Group
Hooks Restaurant
Hubbard Family
Hully Gully
IBM Canada
ICI Paints
Jazzercise
Kathleen Price
Keiper Ltd.
Kelly Armstrong (Author)
Ken Lusk
8
Kenworth Trucks
Laura Durston
Lavender Home Décor
LDSA Executive Committee
Leon's Furniture
LGL Automotive
Loblaws Wonderland Market
Lois Bogart
London Chiropractic Health Centre
London Custom Concrete
London Free Press
London Honda
London Speech & Language Centre
Loving Country Creations
M.P. Window & Door Store
Marineland
Marjorie Edigar
Mark's Work Wearhouse
Marlene Henshaw
Marshall’s Pasta Mill
Mary Eccles
Maton Family
McLean-Taylor Construction
Medieval Times – Toronto
Memories on Main Street
Methadone Associates
Michelle Hartle
Mr. & Mrs. Rintoul
Mustang Drinkware Inc.
National Ballet of Canada
New Orleans Pizza
Nimbus Water Depot
Nunes Family
Ontario Place - Toronto
Ontario Science Centre - Toronto
Orchestra London
Oxford Learning Centre
Performance Unlimited
Phil Robb
Precision Health Care
Presstran Industries
Price Family
Queen’s Inn at Stratford
Ralph Bos Meats Ltd - Strathroy
Rehab Place
Romick Family
Rosemary Hill
Royal Dalton - White Oaks Mall
Keiper Ltd.
Kelly Armstrong (Author)
Ken LuskSandra Dallaire
Scholar's Choice Toy Store
Scrapbook Studio
Scrappin’ Great Deals – Kilworth
Sean Horrell, Photographer
Sharpe Family
Sherri Stevens, Stampin’ Up
Sladek Family
Smitty’s Restaurants
Spikes
Springbank Garden Centers
Stan Tracey
Station Park All Suite Hotel
Sterling Trucks
Stratford Festival of Canada
T D Bank
The Glass Cutter
The London Hunt Golf & Country Club
The Reader’s Digest Association of Canada
Tim Echart
Timbers Chop House
Tony Roma’s
Trojan Technologies
TSC Stores
UPS
Van Eyk Family
Van Horik’s Greenhouses Ltd.
Vision Hair Studio
Walmart
Wayne Gretzky’s Restaurant -Toronto
Western Meats & Deli
We would like to express our appreciation to the following volunteers!
Jessica Dearmo
Micheal Dearmo
Elana Delaney
Jonathon Durston
Sharon Durston
Kimberly Durston
London Down Syndrome Assn.
Jordon Eccles
Tiah Eccles
Nick Findlay
Denis Sevaris
Malan Sevaris
Fundraising Committee Members
9
Tips from life – Bricks and Bouquets
Ed Hager
2006-11-26
I was approached the other day from one of our LDSA members, thanking me for being so candid about being a parent
with a child with Down syndrome. Accomplishments are awesome, but so too be the hard knocks, embarrassments
and situations of real life that come along. I believe we need to share, openly, our bricks and bouquets.
Bouquets -- to Glencoe District High School, Mrs. Sharon White, and the Senior DC program. When presented with
the concept to create a Halloween costume, Mrs. White stated, YES, and the result was the Student of the Week award
for one of our teens. Together, Mrs. White and Art gathered the materials, sewed up a shark outfit, added the eyes and
blood. Alas, the “Shark Attack” was born. (see picture). This could turn into a rental fundraiser!
Bouquets -- to the teacher and educational assistant who requested a meeting with the parents of one of our teens.
This year, for the first time females were in an all male class. The boys had to learn new social skills. One day, one of
the boys grabs the derriere of one of the females in the class. Three things could have happened. The young lady could
have smiled and accepted the invitation by the young man. Or, the young lady could have turned around and slugged
the young man. Or, the young lady could have told her parents, who could have called the police and charged the young
man with assault!
The best thing happened. The school called the parents first, and together they worked out the
discipline for the inappropriate conduct. Then, future education for both boys and girls, and immediate social skill support
for all involved.
Bricks -- to the executives of Ontario Special Olympics who decreed that volunteer coaches are not to be on the playing
field during provincial play down competitions. So only, able bodied, high functioning developmental delayed athletes
need apply. The rest of us, the majority, who exude the Special Olympic oath, can watch on the side lines. Athletes
requiring the necessary supports, should have a right to compete too!
Bouquets -- to the school team who read the report from this year’s DSRI summer school. In particular the integrated
daily speech therapy provision and the concept of continuous expressive language implementation! This particular
student required daily practice to maintain conversational speech. So the school provided the student with a walkietalkie, and required the student to report regularly, back to his teacher, his whereabouts and situation.
Bouquets – to the educational assistant who noted that one of the real challenges of our children with Down syndrome
was during transitions that required immediate and distinctive action and reaction; the school fire drill! The answer was
to assign our student to the main school door to be held open. Along with that task, add the before mentioned walkietalkie, and you have an empowered teenager, participating at a high level and making an impact to his/her fellow
classmates!
Accomplishments are truly awesome.
Guess whose son was “Student of the Week”?
Here are the proud father’s own words:
“Ahh! Time to brag”.
London Down Syndrome Assn.
Winter 2006
10
From The Desk of Your Newsletter Editor:
Well! here it is December, already. Christmas is just around the corner and so is a brand new year.
It is hard to believe that it has been a year since I was nominated and elected as your newsletter editor. My
first newsletter, Spring, 2006, was very challenging for me as I never tackled anything like this before. After
many hours of adding, deleting and moving things around, I was ready for publication. It doesn’t matter how
many times you proofread your work before you send it to the printer, as soon as you pick up a finished
product, bam! all the errors just seem to pop right out at you. I must admit that this job does get easier with
every newsletter that I do, and hopefully the errors that you notice become less and less.
Now comes the real fun part, the stuffing, sealing, stamping and addressing of the envelopes. I would have
preferred self-sealing envelopes but the cost of them is just out of this world. Thank God for a little damp
sponge; it sure saves a lot of licking and an awful taste in your mouth. I must say that our Canada Post did
something right when they came out with the self-adhesive stamp. Now that it is time for my fourth newsletter,
I have this part of the work down pat. My two older grandchildren, Trenton and Tara, ages seven and five
respectively, come over and we all have assigned jobs. In no time, we have the 160 plus newsletters ready for
mailing.
I usually do not insert an article in the newsletter other than the deadline date for the next newsletter, but I had
this one little article that had to go in and no room to squeeze it in. I had to insert another page and after
putting in the article, I had this big empty space left over, so needless to say, this article was written and
added.
We are always looking for stories or articles pertaining to Down syndrome, especially stories from you, the
parents, about your child. Also, pictures are always needed. I know that my three year old granddaughter,
Trinity, who has Down syndrome, just loves looking at pictures, so I try to include as many as I can into the
newsletter. So, please; if you have anything, send them to me. My email address is [email protected]
Any article or photo has to be submitted with permission to publish. Wouldn’t you rather read an article about a
child or look at some pictures, instead of reading an article from me; the choice is yours.
At this time, I would like to wish everyone a Merry Christmas and a Happy New Year.
Oh. I almost forgot. The deadline for the Spring, 2007 newsletter is set at March 16th, 2007.
Bernie Douglas
————————————————————————————————————————————————--
Hi everyone:
Its time again to put our special somebodies in our memory
books again.... I have the following dates booked for
South Loblaws, Wonderland at Southdale….
January 19th, February 9th, March 9th, and April 13th….
The times are from 6pm until 10pm.
Hope to see you there.
Diane Vieira
London Down Syndrome Assn.
Winter 2006
11
Halloween has
come and gone.
London Down Syndrome Assn.
Winter 2006
12
Boy! did we
have fun.
London Down Syndrome Assn.
Winter 2006
13
The Wiggles Come to Town
Submitted by Randy Bilton
On November 1st, a group of LDSA members took in the Australian Children's group, The Wiggles. If you thought
that these kids might have been worn out from Halloween, you were wrong. Our LDSA kids never stopped dancing.
We were not hard to miss in our new LDSA T-Shirts.
——–——————————————————————————
Sir Elton John Comes to Town
Submitted by Bev Bialik
On the evening of November 6th, fourteen people, all family and friends of the LDSA,
were excited to be in attendance at Elton John’s first London concert, at the John Labatt
Centre. We were fortunate to be seated in the City of London’s Community Box to
which the LDSA won access, through a draw at City Hall. The concert tickets were
distributed at our Silent Auction Dinner and Dance fundraiser on October 28th.
What a thrill it was to hear Elton sing live, all of the songs that so many of us grew up
with! There was a lot of singing, and yes, some dancing in the crowd! It was a night
we won’t soon forget!
London Down Syndrome Assn.
Winter 2006
14
TEEN TALK
WOW, what a busy fall we’ve had!
In September we played mini-golf at East Park and some of the braver members in the group went rockclimbing. October found us at Michael’s Arts & Crafts where we made ghoulish candy pots. Then November
found us at the JLC for a Knight’s game, in a box no less; what a cool way to watch the action. Everyone had a
blast; there were munchies galore and the Knights were kind enough to pull off a win, just for us of course! Then
the icing on the cake; when it came time to settle up the tab for the evening, Ed and I were informed that an
anonymous donor had taken care of the food & drink portion of the bill. The individual had seen our group arrive
for the game and told the staff that we were not to leave without him settling up for us. Even though we would
have loved to thank the individual personally he wished to remain anonymous. Who says angels don’t exist? I
just wanted to share this lovely story with everyone.
Jane Riviere
[email protected]
Upcoming events:
January 13th
February 16th
London Down Syndrome Assn.
Line dancing, Hamilton Road Seniors Centre
Cooking class, Loblaws Superstore South
Winter 2006
15
Did you know?
•
Frequently used, but incorrect, past terminology for the condition was Down’s Syndrome. Correct, and current
practice, is to use the term Down syndrome. In 1866, Dr. J. L. Down identified a group of common characteristics in
a number of his patients. The condition is named for this physician, who first described it.
•
When making reference to children who have Down syndrome, if you are careful to say “the child with Down
syndrome” rather than “the Down syndrome child” or “a Down’s child” or “he is Down’s”, parents know that you see
the child first, not the disability. Of course, this applies to adults as well.
•
When making inquires of, or speaking about a person with Down syndrome in their presence, it is only polite to
speak directly to the individual, not to the family members, caregivers, or friends that are around them. It is
demeaning to a person to have questions asked of other people when the question or comment is specifically
related to oneself. If you do not understand what someone with Down syndrome has just said to you, tell him or her
so, and ask them to please repeat what they said, just as you would with anyone else.
•
It is accurate to say that individuals were born with Down syndrome, rather than to say that they “suffer form” or “are
afflicted” with it. Down syndrome is not a fatal or painful condition. People with Down syndrome “live with”,
“overcome the challenges of”, “manage” and “prevail” despite their diagnosis.
• The term “Group Home” conjures a negative image. Try using residential home, or simply “home’, instead.
—————————————————————————————————————————————————————-
New Member
The London Down Syndrome Association extends a warm welcome to the following new member:
Harry & Marianne Frielink, a child with Down syndrome—Reuben—born in January, 2006
Reuben has three siblings—Isaiah (7), Peter (5), and Elissa (3)
—————————————————————————————————————————
Down Syndrome Awareness Week
London Down Syndrome Assn.
Winter 2006
16
Promoting Workplace Safety to the Disabled Community
Everyone working in Ontario has the right to a safe and healthy workplace. But, for the tens of thousands of
disabled people employed or seeking employment in this province, getting the information they need to ensure
their health and safety at work can be a challenge.
To provide people with disabilities with vital knowledge about their rights and responsibilities in the workplace, as
well as to help them recognize and avoid hazards at work, the Workplace Safety and Insurance Board (WSIB)
offers a range of resources. All of these are intended to produce safer, better-informed and more knowledgeable
disabled workers (whether seeking employment or currently working) who have the confidence and knowledge
they need to work safely.
Information Centre (Toronto)
This Centre, located on the ground floor of our office at 200 Front St. W. in Toronto, provides information using
formats, languages and technologies that meet the diverse needs of WSIB clients. Resources include:
• Walk-in personalized customer service in several languages
• WSIB publications in alternative formats
• Special needs equipment [computer with access software (i.e. Zoomtext), CCTV(closed circuit), Pocket
Talker]
• Braille, large print and CD/MP3/Daisy Fact Sheets
Access to the WSIB website and other health and safety sites
Multilingual Hotline
We respond to a wide range of calls in several languages ensuring that all clients have access to, and the ability
to better understand, the workplace safety and insurance system. The TTY is also always available for our deaf
or hard of hearing clients.
·
Tel: (416) 344-2000, or toll free: 1-800-465-5606
·
TTY: 1-800-387-0050
·
E-mail: [email protected]
SafeAbility – Safe and Able to Work
SafeAbility is a health and safety awareness training program for disabled people as they enter the workforce,
and for employers who hire people with disabilities. It was developed jointly by the WSIB, Linkup Employment
Services, and representatives from various organizations within the disabled community.
·
http://www.safeability.ca
Website Information
The WSIB’s new website, www.prevent-it.ca, is designed to help people find out why "There really are no
accidents" by providing a variety of workplace health and safety information and resources in an interactive
format. Visitors can put their hazard recognition skills to the test and learn about their role in building a
prevention culture in their workplace. In addition, the site contains a collection of the WSIB's prevention
resources and provides links to our health and safety partners.
Text versions of prevent-it.ca are also available to provide people with learning or physical disabilities another
format for accessing the information. This is an option for people who are not comfortable browsing websites.
London Down Syndrome Assn.
Winter 2006
17
Medical Tips from the Down Syndrome Clinic
How does Sleep Apnea Occur?
by Dr. Mary Pothos, C.H.E.O.
Treatment of Ear Wax Buildup:
Earwax is made by glands in the outer part of the ear
canal. It is healthy to have some earwax inside the ear
canal. Sometimes earwax can be a problem because
too much earwax has collected in the ear canal. It may
then act as an earplug, blocking sound vibrations
entering the ear and causing a hearing loss. This can
also be a problem because your doctor cannot see
your child’s eardrum at the time of fever to see if there
is an infection. It can also cause a feeling of fullness or
an uncomfortable sensation for your child. There are
safe ways to remove earwax if there is a constant buildup or if it is causing pain or loss of hearing.
1. Three to four drops of mineral oil in the ear canal
twice a week or once a month for 3 - 5 consecutive
days. Try this at bedtime and have your child let
the oil sit in the eardrum for 1 – 2 minutes before
moving. This is especially good for dry wax in the
ear canal. The oil helps soften the earwax and get
the excess wax to slowly move out of the ear. The
wax will fall out or may be cleaned safely from the
outer ear with a washcloth.
2. Hydrogen peroxide – a small dropper full in each
ear at bedtime twice a week or once a month for 3
– 5 days. This is especially good for earwax that is
soft. It helps break up the wax so that it can slowly
move out of the ear canal.
3. If either of the above does not work, your doctor
can help by using irrigation (ear washes), a curette
(tiny spoon shaped tool) or suction. If these
methods don’t work, your doctor may refer you to
an ear – nose/throat (ENT) specialist for earwax
removal.
*Do not do the above if your child has ear tubes or
a hole in the eardrum (perforations are usually due
to repeated ear infections, trauma to the ear drum
or previous ear tubes).
During normal sleep, throat muscles relax. If or when
this happens, there is too little room inside the throat, or
has too much tissue pressing on the outside of the
throat, the airway can become blocked. This blockage
stops the movement of air and this causes the brain to
send a signal for your child to wake up so they open up
the airway in their throat and start breathing again. If
your child has sleep apnea, this cycle may repeat many
times in an hour. Generally they will not remember
waking up but the many arousals will make them sleepy
and tired the next day. As the airway becomes narrower,
there will be snoring. When the airway is completely
blocked, there will be pausing in breathing. If this
pausing lasts greater than 10 seconds, especially if this
is happening several times a night, it is significant and
needs to be brought to the attention of your physician.
What are the Symptoms of Obstructive Sleep
Apnea?
If your child has obstructive sleep apnea, their body may
get less oxygen during sleep and they won’t sleep well.
Common symptoms of obstructive sleep apnea are:
•
•
•
•
•
•
•
Loud snoring interrupted with pauses in
breathing, followed by loud gasps
Not feeling rested when they wake up in the
morning
Morning headaches
Tiredness or sleepiness during the day
Trouble concentrating
Anxiety, irritability or depression
A strong desire to take afternoon naps
Many people who snore do not have sleep apnea, but
nearly everyone who has OSA snores.
How is Obstructive Sleep Apnea Diagnosed?
Your health care provider may:
——————————————————————-•
Obstructive Sleep Apnea:
•
We are currently identifying a lot of children and
adolescents with Obstructive Sleep Apnea (OSA). This
is a serious sleep problem and needs to be identified
and addressed. Please notify your child’s physician or
our clinic if you feel your child may have Obstructive
Sleep Apnea so that we can organize the appropriate
testing and treatment. OSA occurs in up to 50 – 60 %
of individuals with Down syndrome due to the preexisting floppiness of the muscles of the back of the
throat and crowding of the mouth. Being overweight
can make this worse.
London Down Syndrome Assn.
Winter 2006
•
Examine your child, especially their throat and
nasal passages
Order blood tests, including a check of the
function of their thyroid gland
Do a sleep study at a sleep disorders clinic or
sleep lab. The heart rate, brain waves, chest
movement and blood oxygen levels will be
measured while your child sleeps
The study will help determine if the movement of air
slows during sleep or if the air movement stops
completely during sleep. It will also show how often this
happens during sleep.
18
How is Obstructive Sleep Apnea Treated?
It is very important to treat OSA. Untreated sleep apnea can have very serious long-term effects on health especially if
there is a pre-existing heart condition.
•
•
The most common treatment for young children is removal of the tonsils and adenoids if they are enlarged. This
often leads to temporary or permanent relief of obstructive sleep apnea.
If your child’s tonsils and adenoids are not enlarged, the next most common treatment is the use of a machine
that sends pressurized air into the nose and throat at night.
This treatment is called Continuous Positive Airway Pressure (CPAP).
—————————————————————————————————————————————————————
Ontario Disability Support Program Changes Announced
On February 08, 2006 the Minister of Community and Social Services announced a number of changes to
the Ontario Disability Support Program (ODSP). These changes will be phased in with items 1 and 2 below
effective April 01, 2006.
The remaining changes took effect on November 01, 2006.
Following is a summary of those changes as they affect ODSP recipients.
Finding work:
1. Improved access to a range of employment services such as job placement and job retention services to
help recipients to find jobs
2. Requirements that spouses who do not have a disability and are not primary care givers look for work
3. $500.00 one time grant to help recipients cover the costs of participating in a training program, looking
for work, starting or changing jobs (e.g., uniform, equipment, professional fees)
4. Up to $600.00 per child informal child care costs while recipients look for a job, participate in training, or
start a new job
Keeping more of what is earned:
5. 50% of all earnings are exempt from clawback
6. $100.00 per month for each adult family member who is working
7. Up to $600.00 per child (under the age of 18) per month for informal child care costs
8. Up to $300.00 per month deduction for disability work-related expenses (e.g., attendant care, specialized
technology/equipment)
Moving toward financial independence:
9. Ongoing drug, dental and vision care benefits to recipients leaving ODSP for employment unless
coverage is available from the employer
10. One-time employment transition benefit of $500.00 to cover the costs of starting a job for recipients
leaving ODSP for employment
11. Improved rapid reinstatement into the ODSP program for recipients at any time if their job does not
work out
Information compiled from Ministry of Community & Social Services documents. Further details available at:
www.cfcs.gov.on.ca/CFCS/en/newsRoom/newsReleases/060208.htm
London Down Syndrome Assn.
Winter 2006
19
Department of Finance
—————————————————————————————————————————————————————-
News Release
——————————————————————————————————————————————–——————-Immediate release
Ottawa, July 31,2006
2006-035
Minister of Finance Appoints Expert Panel to Advise
on Children’s Fitness Tax Credit
The Honourable Jim Flaherty, Minister of Finance, announced the appointment today of a panel of health and physicalfitness experts to advise on programs of physical activity that should qualify for the children's fitness tax credit proposed
in Budget 2006. Plans to establish the panel were announced in Budget 2006.
“Studies show that regular physical activity has many positive effects on children, including balanced growth and
development and improved physical fitness,” said Minister Flaherty. “At the same time, the escalating costs of organized
sports make it difficult for many parents to afford these activities.”
The tax credit is proposed to come into force on January 1, 2007. It will apply to fees paid for an eligible program of
physical activity for children under 16 years of age.
“The tax credit is an important element in the Government’s ongoing investment in sport development and
participation,” said the Honourable Michael Chong, Minister for Sport. “This is good news for Canadian families.”
Panel members, who will receive a salary of $1, will provide advise on the working definition of an eligible program for
this credit. This definition will need to take into account the many activities Canadian children pursue, while ensuring that
eligible programs meaningfully contribute to children’s physical fitness.
The panel will be chaired by Dr. Khristinn Kellie Leitch. Dr. Leitch is Chair of Paediatric Surgery at the Children’s Hospital
of Western Ontario / Schulich School of Medicine and Dentistry. The other two members are Mr. Michael Weil, President
and Chief Executive Officer of YMCA Canada and Mr. David Bassett, Senior Investment Executive at Scotia McLeod
and co-Chair of Sports Break, an organization that promotes a tax credit for organized youth sports.
The panel will report to the Minister by October 6, 2006.
Canada
London Down Syndrome Assn.
Winter 2006
20
London Down Syndrome Association
1129 Gladstone Drive, RR#2, Belmont, Ontario, N0L 1B0 Tel: (519)644-1867
[email protected]
Membership Application Form
(Please Fill Out All Applicable Sections)
First name/Organization:
Last Name:
Mailing Address:
City:
Postal/Zip Code:
Residential Telephone Number:
Relationship to child or organization contact name:
Internet E-mail Address:
Child’s name with
Down syndrome
London Down Syndrome Assn.
Female
Winter 2006
Male
Birth date
(MM/DD/YY)
21
The Speech of Russell Hubbard:
“You must be the change you wish to be in the world.”
Ladies and Gentlemen:
This is a famous quote by Gandhi. I learned
about Gandhi in my Grade 11 World Religion class.
Right away, I knew I wanted to know more about him,
so I asked for the movie “Gandhi” and a book about
him for Christmas. I liked him because he never took
the easy way out and he tried to make a difference in
people’s lives.
But I am not here to talk about Gandhi, I am
going to talk about making a difference. You don’t
have to be a famous person like Gandhi to make a
real difference in people’s lives. There are a great
number of people who have made a positive
difference in my life and helped me to reach my goals.
Right at home my family has supported me all
the way. My younger sisters Meredith and Martha are
always there for me, even if we do our share of
arguing over who has to do the dishes. Meredith who
is 2 years younger than me, has introduced me to lots
of new music, theatre, TV shows, and movies.
Martha, who is 7 years younger, likes playing
basketball with me. They like to give me tips about
what is “cool”, especially with regard to clothes.
My mom and dad have always tried to give
me as many experiences as possible and because of
them I have had a chance to travel to a lot of different
places and try many different ethnic foods. At home
on our farm we work together, and they have taught
me about tractors and other machinery, mowing
grass, gardening, cooking and cleaning.
My mom is the person who helped me the
most to graduate from high school with an Ontario
Secondary School diploma. She was there every night
to help me research projects, work on homework and
study for tests.
My Grandma and Grandpa Chychrun live
close by and I have spent a lot of time with them over
the years. They have always loved and encouraged
me. When I was younger they played road hockey, Tball and badminton with me for hours. They read
books to me and helped me with learn my math facts.
I especially loved it when Grandma made my favorite
foods and Grandpa and I washed the car together.
Sadly, my Grandpa died in 2000. I miss him a lot.
From the beginning the Huron – Perth
Catholic District School Board made sure I always got
the help I needed at school. There were lots of good
teachers but three special people really stand out:
London Down Syndrome Assn.
Mrs. Carine Morrow was my E.A. through most
of elementary school. She always made the time to
help all the kids in the class if they needed it and didn’t
just help me. She didn’t just help with math and
English either. She could be counted on for things over
and above the call of duty, like organizing crafts for us
to make for mother’s day, helping with our fundraisers
for school trips, and helping us to learn about the
important things like friendship and getting along. We
are still great friends and go out for lunch sometimes. In
fact, she is here tonight to support me, as always.
Two E.A.s in high school, Mrs. Lori Burlingham
and Mrs. Tina Vandenheuvel also went the extra mile
for me, in and out of the classroom – from finding my
lost gym clothes to helping me sign up for clubs.
Like everyone else I had some good and not so
good co-op work experiences in high school. But Ron
at Sobeys and Barb at Cozyns Garden Center were
especially good about making me feel part of the work
team, not just someone with “special needs”. Even
though they didn’t have to, they kept an eye out to
make sure I was getting from school to work safely.
I was lucky to have a great friend all through
school. Dean Podbury and I met in kindergarten. We
used to have fun playing video games and making
movies of ourselves. We had some good times. Now,
he is going to Fanshawe College to learn how to make
video games himself. I don’t see much of Dean
anymore, now that he is away at school but know he
would always be there for me because that is the spirit
of a friend.
Kurtis VanMassenhoven was another good
friend in elementary school. He would often drop by
and we would hang out together doing fun stuff.
Fr. Chris Bordeau was a special priest in our
parish, who recognized my abilities and allowed me to
be a reader at Mass. It was a great experience even
though I had to practice a lot at home to make sure I
got it right. The whole church community was so
supportive of this and would often say what a good job
I had done.
I’m not sure what the future will bring. I hope to
get a job in food services and maybe go to college to
be a baker or chef assistant. I am thankful for all the
people who have made a difference in my life and I
know that to reach my dreams I will have to rely on a
few more people to make that difference in my life.
Maybe someday I will make a difference in someone
else’s life and help them to reach their dreams.
Thank you
Winter 2006
22
Your Elected Representatives, 2006—2007
Standing (L to R): Steve Nadeau, Andy Loebus, Bev Bialik, Paul Van Eyk, Randy Bilton, Bernie Douglas.
Seated (L to R): Sandy Bogart, Ed Hager, Rose Price.
Absent from the above photo, but shown in the photo below is our
peer representative, Heather Verdun.