Ups and Downs—Calgary Down Syndrome Association
Getting Up On Down Syndrome
Teen and Young Adult Conference!
Points of Interest
Dance Class An- This year‘s conference was a huge hit! With over 35
nounced for teens
and young adults
teens and young adults in attendance, everyone had the
this summer, see opportunity to connect with old friends or meet new
page 3. ones. Our day included yoga, nutrition, personal hy-
Be sure to register giene, hip-hop dance, and Artist trading cards.
for Street Meet
2009 by June 4th The pictures say it all...it was fun! More pictures can
and guarantee your be seen on page 8. A big thanks to all our volunteers
T-shirt size. who put this year‘s conference together.
Did you know that all
our newsletter mail-
outs are prepared by
an individual with
Inside this issue:
Upcoming events 3
CDSS national 7
Helping a Star Shine, 6
words from Krystal Naus-
More Teen & Young Adult 8
Summer camps 9,
Getting Up On Down Syndrome
Schedule of Events June 2009
Sun Mon Tue Wed Thu Fri Sat
June 20th– Street Meet 10k Run & 3K
Walk 1 2 3 4 5 6
Office opens Office
July 18, 25, Aug 8 & 15 Teen & Young at 3:00pm Closed
Adult Hip-Hop Dance lessons
July 25 - BBQ in North Glenmore Park, 7 8 9 10 11 12 13
Snowy Owl Site Office
August TBA—Teen & Young Adult Event
August 7-9th- Our Lady Queen of Peace 14 15 16 17 18 19 20
SUMMER Coffee STREET
Ranch HOURS Morning MEET 2009
August 25th– Golf Event
September 26th– Get UP by getting
21 22 23 24 25 26 26
DOWN with Cooking!
October 30th– Teen and Young Adult
Dance 28 29 30
October 31st– Pumpkin Hunt
November 6th– Dinner & Dance
SUMMER OFFICE HOURS (Start June 14th)
November 29th—Wonder Years Confer- Monday 9:00—2:00, Tuesday 11:30—5:00, Wednesday 9:00—2:00,
ence Thursday 9:00—12:00, Friday 9:00—2:00.
Come join us for our
Ups & Downs Coffee Morning
We‘re serving up the cappuccinos, lattes and espressos for parents
young and old...at our monthly coffee morning. If you have a child
with Down syndrome, this morning is set aside for you to relax, chat
and connect with other families in the community. We love to see the
kids, so feel free to bring them along!
At the June meeting
Our coffee mornings take place on the third Monday of every month at
we will learn some our location in the West Hillhurst Community Centre. Should you have
massage techniques for any questions or would like directions, please feel free to call Amber at
infants & toddlers!
Where: Ups and Downs Office (2nd flr)
West Hillhurst Community Centre,
1940 – 6th Avenue NW
Dates: June 15, July 20, Aug 17, Sept 21,
Oct 19, Nov 16 and Dec 21.
Time: 9:30 – 11:30 am
JUNE MEETING—Massage Therapy Techniques (Learn for FREE!!)
Getting Up On Down Syndrome
STREET MEET 2009!
Date: Saturday, June 20th
Location: Fish Creek Park,
Glenfield site B
Cost before June 4th: $35 (Family),
$10 (Individual), $35 (Runner)
Cost after June 4th: $40 (Family),
$15 (Individual), $40 (Runner)
Be sure to get the sneakers out of the
closet and start stretching those mus-
cles as Street Meet 2009 is going to
be bigger than ever before.
Fish Creek Park is the place to be on Saturday, June 20th. There will be food, fun and
games for the whole family. ...and don't forget the prizes for all the top fundraisers, rac-
ers and raffle winners.
Become a Top
If you miss the deadline date, be sure to arrive early as we will have a few on hand for Fundraiser!
those registering the morning of.
Brochures, pledge forms and on-line registration are available at:
HIP-HOP DANCE CLASS for
TEENS and YOUNG ADULTS
We‘re getting closer
The instructor is Joanna Murphy. The young people who at- to our fundraising
tended our recent Teen conference can all tell you how much fun goal of $20,000 but
we‘re not there yet!
they had at the class Joanna taught that day!
Lessons will run from 10:00 to 10:50. The room will be open There‘s still lots of
time before June 20th
from 9:50 each morning for the kids to be dropped off. Partici-
for you to even be-
pants must be picked up promptly at the end of class. come one of our top
fundraisers at Street
Class size is limited to 16 people, so sign up early to ensure a spot! Meet. For more de-
tails on how to be-
Instructor: Miss Joanna come a top fundraiser
Dates: July 18 & 25 and Aug 8 & 25 just watch our on-line
Time: 10am—10:50am video at: http://
Location: West Hillhurst Community Centre,
Hospitality Room (2nd floor), 1940 6th Ave NW pledgeathon/
Cost: $35.00 Participant.htm
Getting Up On Down Syndrome
Cost: $10/ family
Address: 7305 24th Street
SW, Snowy Owl Site
(marked by star on map)
We‘ll be having fun and en-
joying a picnic lunch with
hamburgers, hotdogs, drinks
and more. Everyone is wel-
come, plan to come and join
2009 Golf Tournament, August 25th
TO REGISTER: You can enjoy a fun filled
Send in your registration day of golf along with
form for our golf tourna- breakfast and lunch
while supporting Ups
Phone: 403-289-4394 and Downs for only
Fax: 403-289-1015 $215. Team registra-
tions and sponsorships
Mailing Address: are also available.
P.O. Box 61180
Kensington RPO This year’s golf
tournament will be held at:
Calgary, AB T2N 4S6
Lynx Ridge Golf Course
On-line registration at:
www.upsdowns.org #8 Lynx Ridge Blvd NW
Getting Up On Down Syndrome
Tell Your Child’s Story in Our Coffee Table Book
Would you like to have beautiful photographs of your child,
taken by a well known photographer, in a coffee table book to
share with your family and friends?
Ups and Down‘s is producing a book that will share uplifting stories and images of our
kids, their friends and families. The magical photographs will be taken by Noah Fallis
and will reflect the individual person-
alities of the children. The stories will
be written by the families. We‘ve seen
examples of Noah‘s work and know The CDSS 22nd
that this book will be amazing! National Conference
To participate, you must submit a
short story (maximum 400 words)
As with any conference, I think there are always highlights for eve-
about a time when the individual
ryone. For me, this year‘s conference was no exception. After
with Down syndrome in your life in-
seeing the CBC documentary about Norm‘s story on TV, I really
spired you, or helped you to experi-
enjoyed the opportunity to hear from Norm, his family and the
ence joy or friendship, or how
producers of the documentary. While Norm is now facing a new
they’ve brought you happiness or a
challenge with the onset of Alzheimer‘s, it‘s his sister‘s love for
new understanding about life.
him that will ensure he will continue to remain in a loving suppor-
Don‘t worry about being a great writer. tive environment. (Don‘t we all wish we had sibling like that?) If
Help is available to polish your story. you missed the TV release of the documentary you can see it on-
It is your experiences and insights that line at: http://www.cbc.ca/documentaries/thelens/2008/norm/
we want to share. In fact, we may use
only a portion of your story or a won- On another note, this year‘s conference also highlighted a great
derful phrase that works well with a teen program in Halifax, Team Possibles. This group of teens
particular photo. comes together every week to produce a new masterpiece in art,
movies, photography or music. Some of their art work is currently
The stories have to be submitted to touring in Ontario and is quite fantastic to see. To see highlights of
Amber in the office by June 30, their accomplishment and work visit their blog at: http://
2009. The photo sessions will be www.teenpossibles.blogspot.com.
scheduled only for those whose sto-
It was also fun to hear Krystal Nausbaum star of The Memory
ries have been received and the fam-
Keeper’s Daughter speak at one
ily must be available for the photo
of the sessions, (see pg 6 for an
sessions between 11:00am and
in-depth story on her rise to
3:00pm on July 12, 2009. We are
fame). I loved how down to
unable to provide any alternate
earth she was, when someone
times for photos to be taken.
asked ―What would you choose
Please call or email Amber with any for a career if you weren‘t act-
questions or help with appropriate top- ing?‖ To which she replied,
ics. Her contact information is on the ―Probably something with little
back page of this newsletter. kids. I love little kids.‖ Me too
Krystal, me too. Amber & Norm
This is going to be a wonderful book so
please consider participating!
Getting Up On Down Syndrome
Helping a star shine
Reflections of a devoted stage mom, by Madeleine Greey
Years ago, I met TV actor Chris old brother Nick, have served as crucial
Burke, a young man with Down syn- role models. They are sometimes eager
drome who starred as Corky in the to brag about her accomplishments,
popular ABC series ―Life Goes On.‖ As telling people that she starred in the
a volunteer with the Down Syndrome Emmy nominated made-for-TV-movie
Association of Toronto, I‘d scored The Memory Keeper’s Daughter, but
the plum assignment of going to they are also quick to keep Krystal‘s
the airport to greet this famous keynote modesty in check and remind her to
speaker for our national conference. treat them respectfully. And, some-
times, like in any relationship, they‘ve
I was thrilled to meet Chris, especially
as the mother of a six-month-old baby been the victims of her errors.
with Down syndrome named Krystal. Throughout her childhood, Krystal‘s
But in truth, I was a lot more eager to older cousins watched out for her and
meet his dad Frank. were sometimes a little over-protective.
But I always felt the most challenging
At the first opportune moment, I pulled
and confusing familial role was being
Frank aside and bluntly asked, ―How‘d
Krystal‘s younger brother because it
you do this?‖
shook the laws of birth order. Kids
―We always treated Chris like all the have an innate sense of what you
Madeleine Greey rest of our kids,‖ he explained. They ―should‖ be able to do at a certain age.
talks about her have five. That‘s why her six-year-old brother
daughter Krystal’s ―We knew that Chris wouldn‘t be ac- was so perplexed years ago when
rise to stardom in the cepted outside our home if he didn‘t watching a home video taken shortly
learn to act appropriately within. As for after his birth when Krystal was four.
TV movie The He asked me about it at dinner that
being an actor, well, that was always his
Memory Keeper’s night.
desire and we just helped him get there.‖
Daughter. ―Mom, how come Krystal doesn‘t talk
I took his words to heart.
like a four-year-old in that video of me
Flash forward to my 19-year-old daugh- coming home from the hospital?‖
ter Krystal on a recent episode of Can-
ada A.M. She‘s asked by co-host Bev- Krystal, who was 10 at the time of this
erly Thompson, ―Did you ever think conversation, instantly detected a slight
you‘d be able to say to yourself ‗I‘m a and rallied with a spunky reply, ―I had
movie star‘‖? To which Krystal re- a cold that day.‖
sponds, ―Yeah, I am...I‘m a star.‖ But there was no denying it. Four-year
This little moment in television history -old Krystal, captured on our home
always makes Krystal‘s cousins smile. video, had halting, often indecipherable
Her blunt immodesty tickles them, but speech. For Nick, this was a moment
most of all, they‘re proud. When any of reckoning. It was the first time he
child grows up and meets success, had put words to something he‘d
there‘s pride. But when that kid is born probably sensed for a while: his sister
with challenges, pride doubles, even was ―different‖. My first impulse was
triples, spilling over all the people who to avoid this incredibly sensitive topic.
took part in the process. Krystal‘s cous- I felt caught. I knew I owed my son
ins and even more vitally, her 15-year- an explanation but I didn‘t want to hurt
his sister in the process. It helps when Krystal remembers anything she was interested in. The
her triumphs. lucky winner was acting. She took to
―Krystal doesn‘t always do and act
it instantly. Almost more impor-
like other kids,‖ I tried. ―She‘s got Like walking down the red carpet
tantly, the acting community took to
something called Down syndrome in Hollywood last April at the pre-
her. No other community has inte-
and has to try harder than other miere of The Memory Keeper’s
grated her more gracefully and effort-
kids to do stuff. It sometimes takes Daughter where she posed for a
lessly than the acting world, whether
her a little longer.‖ phalanx of shouting paparazzi
it was day camp, Saturday drama
(―Look over here, Krystal!‖), field-
Krystal wasn‘t happy to hear this. classes or most recently, the high
ing three or four interviews with
Who would be? Talking about school ensemble at Toronto‘s
TV reporters, then traipsing off to
Down syndrome felt like airing Lorraine Kimsa Theatre for Young
the after-party in a shiny white
dirty laundry and none of us were People. We feel grateful.
stretch limo with her ―hot‖ buddy,
enjoying the process. Yet this was
American actor Dermot Mulroney. It‘s a sentiment I often feel in this
a pivotal point in Krystal‘s child-
journey that was just getting started
hood. It was the moment when her But for me, all of this is super
the day I shared a limo ride with
―differentness‖ was verbalized, rec- sweet icing on a fluffy kind of cake
Chris Burke and his dad. After shak-
ognized and ironically, normalized called fleeting fame. In my paren-
ing their hands, I watched Chris so
in our house. Before that day, we tal book, what really counts is
intently I‘m sure his father sensed I
never uttered the words Down syn- Krystal‘s happiness and self-worth
was the parent of a baby with Down
drome in front of Krystal or Nick. and she reaped oodles of that play-
syndrome. I was kind of nervous,
Bur after that day, my husband and ing Pheobe in The Memory
too, hoping to see what I was ready
the kids and I all slowly got used to Keeper’s Daughter way before it
to see in this person with a disability
rolling those clunky, previously went to the editing room. On the
movie set in Halifax, Krystal was that my baby shared.
taboo words around in our mouths.
It felt clumsy at first, but with prac- respected as a valuable team But it was Chris who picked up on
tice, it didn‘t. Over time, Down player. She made friends. She my discomfort first. As his dad
syndrome lost its bogeyman status worked hard. She had the experi- looked out the window of the limo,
and settled into our reality- ence of a lifetime and was accepted Chris waved at me frantically to get
especially Krystal‘s- and once we‘d for who she was. That‘s all we my attention, pointed at his dad, then
accepted it, it was a lot easier for want for our kids. twirled his finger dramatically
other people to, as well. around his right ear, making that un-
Raising Krystal has challenged us.
mistakable sign language for ―he‘s
Our approach isn‘t Pollyanna-ish. It‘s not always easy for my hus-
band Don and me to understand crazy!‖.
Krystal often breaks into tears of
frustration and says, ―I hate being how some things can confuse her Chris was laughing at his joke and I
Down syndrome.‖ We talk about so. knew then that I was in for quite a
her challenges, how math feels like When that happens, our saintly pa- ride.
a monster, how difficult it is to tell tience flies out the window like a Reprinted with permission from
the truth all the time and how deep renegade angel. Using money, Exceptional Family , Canada’s Re-
the jealousy runs when her cousins navigating directions and decipher- source Magazine for Parents of Ex-
get driving licenses and university ing the subtleties of social etiquette ceptional Children . To subscribe to
degrees, things she can only dream can all dumbfound her at the best Exceptional Family , visit
of. of times. Of course, when we are www.exceptionalfamily.ca
My heart breaks alongside hers. I inspired to bestow ―teachable mo-
don‘t want to acknowledge that she ments‖, Krystal responds with a
won‘t reach those milestones and disinterest so large it growls.
the instant I do, a scratchy knot One thing that does work is moti-
builds in my throat. I look into her vation. You can‘t teach it, but you
tearing eyes and want to wipe away can do your darndest to harvest it.
all the injustices. My motherly so- When Krystal was young, we tried
lutions feel hugely inadequate: to capture that elusive learning in-
warm arms, wet eyes and a sharing gredient by exposing her to
of the pain.
Getting Up On Down Syndrome
...more pictures from the Teen & Young Adult conference
“I learned a lot and had fun.
The speakers were interesting
and I enjoyed the activities.”
a t a ing
Wh u go ?
The H s of fun!!
Getting Up On Down Syndrome
Other Community Events
Therapy Express Camps
Therapy Express camps are half-day, week-long therapeutic expressive arts experi-
ences for children with special needs and their parent or aide. Therapy Express
camps incorporate music therapy, art therapy, movement, drama, and relaxation.
All programs cost $275 per week per child, plus GST. There are camps available for
Preschoolers (6 and under), Elementary (7-12) and Teens (13-17). All programs are
located at the JBMT Clinic, 5232 4th Street SW (within Providence Children‘s Cen-
Persons who Benefit from Therapy Express Camps:
Children and teens with communication challenges including developmental dis-
abilities, autism, learning challenges and brain injury.
For more information about how to register visit their website at: www.jbmusic.ca
Inclusive Education Summer
Institute Community Rehabilita-
tion & Disabilities Studies
The University of Calgary, in cooperation with
the Alberta Association for Community Living,
offers, as part of the Community Rehabilitation
and Disability Studies Summer Institute, three
half courses on Inclusive Education.
These courses will be of interest to teachers, ad-
ministrators, parents and others who are commit-
ted to educating students with developmental
disabilities in the regular classroom and are of-
fered for credit and audit.
Ethics of Caring and Inclusion: Implications
for the Education Reform
Adapting Curriculum in Schools from K-12
Addressing Challenging Behaviours in the
For more information:
Phone: 403-220-2271 (Beth Parrott)
Independent Living Calgary Parent Advisory Committee
The Calgary Parent Advisory Committee (CPAC) is
Summer Adventure Program composed of 12 parents, who have a current agree-
ment with the Family Supports for Children with
The LEARN and Peer Support Program with the Inde- Disabilities program (FSCD), together with repre-
pendent Living Resource Centre of Calgary (ILRCC) sentation from management from Calgary & Area
have combined programs for the summer months to Child & Family Services Authority (CFSA). The
offer a variety of exciting and interesting day trips in purpose of the CPAC is liaison between families of
and around Calgary for adults with disabilities. Some children with disabilities and CFSA and related
of the activities include: visits to the Glenbow Mu- agencies to insure input to policies, procedures, ser-
seum, Telus World of Science, the Calgary Zoo, a visit vices and future developments of the FSCD pro-
to Heritage Park and much, much more! The day trips gram.
are meant to be interactive and educational for partici- For further information e-mail the Parent Advisory
pants who attend. There are a variety of trips planned Committee at: Calgaryarea.PAC@gov.ab.ca.
to tailor to everyone‘s likes. So if you feel like keep-
ing busy during the summer months and having fun at
the same time, sign up for some new and exciting day Children’s Link
trips. Come out and meet new friends and see what Holds regular coffee socials for parents and caregiv-
Calgary has to offer for recreation and leisure pro- ers of children with special needs. Various times and
grams. locations are offered. Call 230-9158 for details.
For more information or to register please visit their
website at: www.ilrcc.ab.ca Down Syndrome Clinic
If you have a child with Down syndrome who is
three years of age or younger and is not accessing
Resource Section Program Unit Funding (PUF) to attend a program,
this group may be of interest to you.
This section is a selection of exceptional and useful re-
sources for our membership. If you are aware of any Families have been enjoying our Friday morning
that you feel should be included in this section please groups where they have been able to access support
contact email@example.com. from our full team (Physiotherapy, Occupational
Therapy, Social Work, Speech Language Pathology,
Brilliant Beginnings Clinical Nutrition and Nursing). We are now able to
Brilliant Beginnings Educational Centre, run by add an alternative to our Friday group sessions for
Melanie Gushnowski, MSc, is a new addition to parents who want to focus on motor skills only.
the Calgary landscape of early education. Just
The ACH Down syndrome team invites you and
down the street from Ups & Downs‘ main office, it
your child to attend our motor treatment group to
provides programs designed for children at birth to
address any concerns you may have that you feel
the age of 4. Children with special needs as well as
require the advise or input from an Occupational or
typical children are all welcome to partake in the
Physiotherapist. Group sessions with will be offered
specialized programs offered in a separate or inte-
on designated Thursdays from 10:00 a.m.–12 noon
grated setting. Other services provided include
in room B2 200 at Alberta Children‘s Hospital. No
Shantala baby massage, baby signing classes, par-
appointment is needed, just feel free to ―drop by‖ on
enting consultation and workshops, and special
the date or dates that work for you.
Please bring along a snack for your child & his or
So if you are a new parent be sure to check out
her favorite toy.
and/or register at their website
www.brilliantbeginnings.ca , call 283-KIDS Since space is limited, we regret that we are un-
(5437), or visit their establishment at 207A 19th able to have brothers and sisters come along so
Street NW. please make alternative arrangements for their
care. You may wish to use Emily‘s Backyard (the
short term child care service at ACH) 955-2500.
Since treatment will occur in a group, we will
be reminding families of the need to honor the Family to Family Connections
privacy & confidentiality of other families in Family to Family Connections orients, supports and
attendance. If you wish to speak privately with encourages family volunteers to connect with a re-
any of the therapists, please let us know & a pri- questing family member who needs to talk, ask ques-
vate conversation can occur on the day of the tions and receive support regarding the health and
group (if the concern can be addressed with a well being of a child or youth.
brief conversation) or at a later time.
Call the Coordinator to set up a time to talk about
If an interpreter is needed, we do require at your family and your need for information and sup-
least one week advanced notice to make ar- port.
rangements. Please contact our clinic secretary
(943-7340) who will endeavor to organize in-
The Coordinator will connect you with a Sup-
portive Family Volunteer who will call you.
Educational or information sessions may also
be offered based on the group‘s wishes if there Typically, families and volunteers will connect
are common themes, and in this case advance through one to four phone calls over two months, but
notice will be provided. this can vary. To learn more, call 403-955-2456 or
Please call Donna Heerensperger at 955-7275 if you see www.fcrc.sacyhn.ca
have further questions or concerns, or talk to your
Child Developmental Specialist.
2009 Group Dates:
June 11, June 25, July 09, July 23
Getting Up On Down Syndrome
Chatterbug Casino Volunteers Needed
Summer We are urgently needing volunteers to fill spots
for our upcoming Casino on August 21st and
Camp 22nd. As this is our biggest funding source for
The Chatterbugs— Ups and Downs, volunteers that help out are
Articulation Camp definitely appreciated. We are looking for vol-
will focus on speech sound development and unteers to do shifts on either day at any of the
practice. Specific sounds will be targeted at lev- following times:
els appropriate for each child, as determined prior
to camp. Sounds will be practiced through August 21st August 22nd
games, art, stories, songs and physical activity. 10:30—7pm 10:30—7pm
Children whose primary challenge is articulation 10:30pm—3:30am 10:30pm—3:30am
are most appropriate for this camp.
WHEN: July 27—31, 12:45—3:15pm Volunteer positions include:
Banker, Cashier, Chip Runner, and Countroom
COST: $350/week ($100 non refundable deposit)
WHERE: Renfrew‘s Main School,
2050 21St NE To volunteer please call
our office at 403-289-4394.
AGE: 5-6 years old
BOARD of DIRECTORS
President— Melanie Grant e-mail: firstname.lastname@example.org
Vice President—Sherrill Rechner, e-mail: email@example.com
Treasurer—Chin Wei Eow, e-mail: firstname.lastname@example.org
Secretary—Chantal Petersen, e-mail: email@example.com
West Hillhurst Community Centre Communications—Jacquie McKechnie, e-mail: firstname.lastname@example.org
1940 6th Ave NW Program Co-ordinator— Jeannie Ing, e-mail: email@example.com
Member at Large—Marcia Bufford e-mail: firstname.lastname@example.org
Visiting Parents Co-ordinator—Sherrill Rechner, e-mail: email@example.com
P.O. Box 61180
Calgary, AB T2N 4S6
Phone 403-289-4394 Executive Director—Amber Boyd, e-mail: firstname.lastname@example.org
Fax: 403-289-1015 Book keeper—Maldeline Chua e-mail: email@example.com
Office Assistants—Jody Roll and Jamie Bufford
Web Site: www.upsdowns.org
Statement of Policy and Disclaimer
The opinions and views expressed in this publication may not necessarily be those of the organization or its members.
Ups and Downs does not promote or recommend any therapy, treatment, service or product. Where service providers
are mentioned, please be advised that Ups and Downs has not conducted any checks on these services. Therefore, it is
up to the individual accessing services to ensure the security and safety of the individual they are accessing these