Jot It Down - Wisconsin Upside Down

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Jot It Down
Jot It Down
Official
Newsletter
of Official Newsletter of the
Wisconsin Upside Down Foundation
EVENTS
VOLUME III
ISSUE IV
JULY 2010
3rd Friday Every Month
It’s Karaoke at This
Great Coffee Place
6:30-9:00
Details page 2
Friday, August 27
2nd Annual
Ice Cream Social
10:30-12:30
Details page 2
Sunday, August 30th
Cookout Fundraiser
Steinhafels 11-3pm
Details page 2
Sunday, September 12
1st Downs For Down
Syndrome Kick-off
Party & Walk Rally
3:00PM Location TBA
Saturday, October 9th
Bank Day
Steinhafels 9am -noon
Details page 5
Wisconsin Upside Down is excited to announce “First Downs For Down Syndrome,” a
new awareness program for Down syndrome. The program, sponsored by United
Healthcare in partnership with The Packer Radio Network, will kick off at the start of
Green Bay’s 2010 football season. Each time the Packers score a first down, the station will announce a “First down for Down syndrome, sponsored by United Healthcare.” United Healthcare will then make a donation to Wisconsin Upside Down for
each first down. Then, the total of First Downs for Down syndrome will be announced
during the post game show and again on the first weekday following the game on Wisconsin's Morning News with John Jagler.
This is a very exciting opportunity to raise awareness of Down syndrome in Wisconsin
and to get to know Wisconsin Upside Down. Many thanks to United Health
Care and The Packer Radio Network for believing that people with Down syndrome
are Down right beautiful.
The money raised from “First Downs for Down Syndrome” will help Wisconsin Upside
Down continue it’s mission of enhancing the lives of individuals with Down syndrome,
while supporting their families, and the community. The Packer season kicks off on
September 12th at 3:45 against the Philadelphia Eagles. So, get your cheese head on
and cheer for the Packers! We’ll have a Packer’s Season Kickoff Party/ Buddy Walk
Rally that day, so watch for details on our website at www.wiusd.org.
Adaptive Arts-A Community Partnership and Success Story
Sunday, October 10
2nd Annual
Wisconsin Upside Down
Buddy Walk
Details page 4-5
Saturday, November 20
Dr. Brian Skotko
Steinhafels Ed Center
9am
Details page 3
Sunday, December 5
2nd Annual Christmas
Party
families”
It’s Buddy Walk Time Again, &
This Year’s Event Is A Perfect 10!
As in 10-10-10!
Save the date for October 10, 2010
At 10am of course!
The Walk will be held at
Steinhafels in Waukesha
Look inside for more information!
The hope is to create a program that can be started in
other communities as well.
Adaptive arts at Lake Country
Fine Arts is offered twice a
month on Saturdays. But,
Robbin and Marlene wanted to
offer it at little or no cost as part
of the school curriculum.
Continued on page 3
PAGE 2
Mangold Center To Offer Down Syndrome
The MANGOLD CENTER for Family Health is proud to announce new hours for the Down syndrome
Clinic. The second and fourth Wednesday of every month from 1pm to 8pm is a primary care clinic
focusing on the primary health care The
needsnames
of our patients
with changed
Down syndrome.
have been
to protect the Guilty
True Stories...
The Mangold Center offers both primary care and cardiology services. Dr. Michael Mangold, MD,
Twas
the middle
night, room
has 15 years of
experience
as an of
emergency
physician,
where
he cared hop.
for patients of all ages in
Fortunately,
Mom
awoke
And hours
beforehas
dawn
critical situations.
Dr. Mangold
been a family
physician
for
3
years
and
enjoys
gettingfor
to all,
know
Fortunately
hehis
with a fright, with that
When
7 yearcare
oldphysician
William andfeeling
patients as both
a primary
as an expert
on
the
health
care
issues
associated
with
didn’t get far. And the
that mom’s get,
awoke
withthea birth
yawn.
Down syndrome.
Since
of his son, Jon,
tensomething’s
years ago, Dr.
Mangolddamage
has been was
actively
minimal to
when
not
researching how
to better
quality
individuals with Down syndrome,
as well
garage
and as
theaddress
car.
right.
Though
his the
family
wasof life for
many medicalsleeping
and psychosocial
all cozy needs.
and
So parents beware when
Off to the garage she
tight, unaware that soon
flew
from
her
bed,
to
beat
The Mangoldthey’d
Centerreceive
is also happy
to introduce Dr. Burton Friedman, MD, placing keys hooks. Lita great
on the
window and
a cardiologistfright.
with over 30 years of experience.
Dr. Friedman
prides him- tle ones are ready to
Tales Of The Down
show off what they’re
scream
off
her
head!
self on taking great care with each and every patient. He enjoys helping
Side, welcomes your
learning and it’s not all
No
one
told
him
that
chilpatients understand their health and how to improve
their well
“No William!
No being.
William!
input. Send your
from books.
dren
shouldn’t
drive
in
Mangold Center is a unique clinic setting. Patients
are welcomed
with
You must
not go out!”
stories to
the
night.
And
he
knew
smiles. The staff is experienced,
kind, and compassionYes, this really hapThe neighbors
all said,
Robbin@wiupsidedown. warm hearts and
that the keys
hang-veterans
all arewere
seasoned
special
needs
parentpened! But as I have
sheatwas
heard
to shout.
org. Be sure to include ate. Most importantly,
sight. at the Mangold Center and would love the
ing. “We loveing
ourinpatients
the phrase, “Tales of
So, William stopped driv- said, the names have
honor of serving
and your
family.”
262-338-8100
So,you
William
decided
to Call ing
schedule
an been changed, and that
the Down Side” in the
and lookedtoat
his
mom sleeps light in bed.
take
a
quick
spin,
in
the
appointment.
subject. line.
mommy. “Perhaps she’s
family van that was waitunhappy, she’s not going
By Robbin Lyons
ing for him.
with me.”Dates:
Don’t Miss the fun on the
see,
knew
third William,
Friday ofyou
each
month
August
20th,
But he
knew that
her
just how to drive it, even
at
voice
her face
meant
“End and
of Summer
Party”
as Wisconsin Upside Down
with Down syndrome,
come
dressed
a Luau!
to stop,
so hefor
finished
his
hoststhere
our monthly
Karaoke
was just nothing to
drive
and
got
out
with
a
Nightit.for teens and adults
September 17,
Third Friday’s
Are
Karaoke Night!
Cookout
Steinhafel’s
in Waukesha
with disabilities.
Rising to the Challenge: Supporting Families & Individuals with Down Syndrome who have Complex Needs
The fun starts at 6:30 at
This Great Coffee Place,
located at 365 Cottonwood
Avenue
in Hartland.
There
The Down
Syndrome
Clinic
is always
a greatHospital
crowd,ofso
at Childrens
Wisconsin,
announces
come
early to get
a good the
seat!first Down Syndrome Clinic
October 15,
“Costume Party”
November 19,
more challenging medical,
December
17th.
behavioral
and mental
Annual
Christmas
health
conditions.
Sing-a-long with Santa
of Wisconsin Research ConThe Instructional objectives
ference, featuring guest
of the seminar are to idenspeaker, Goerge Capone MD, tify examples of “complex”
Director at the KennedyKneeds in individuals with
rieger Institute. The clinic
Down syndrome by identiFriday, August 27
entitled:
fying unique
and defining
Coming
soon!
10:30-12:30
features of common behavThe Gluten
Trading
ioral Free
and mental
health con“Rising to the Challenge:
ditions in individuals with
Supporting
Join us for Ice Cream, Games
and Families & Indi- Company
Down syndrome.
viduals with Down Syn- is moving
Friendship and it’s free!
in withAlso
identifying evidence-based
drome who have Complex
N41W29213 Prairie Wind Circle
Molly’s Gluten
Bakery!
practicesFree
for diagnosing
and
Needs”
South, Pewaukee
treating individuals with DS
Now you
gethave
all developmental
your favorite
Is a workshop is designed
for can
who
families or caregivers
who Free and
behavioral
disorders.
Gluten
Foods
under one
roof!
Please RSVP by August
support individuals with
Then to complete and score
25 so we have enough
Down syndrome, Located
who have
at
Old Lynndale
the Aberrant
Behavior
ice cream
Checklist
on
the childRd
N47 W28270 Lynndale
to go around!
Annual Ice Cream Social
Need Gluten Free?
Pewaukee, WI 53072
262-443-8690
WWW.WIUSD.ORG
Benefits
Wisconsin
Upside Down
adult
and describe August
various
Saturday,
aspects of support, time management, and29th
mental wellness
needs for sustaining caregiv11-3pm.
ers of individuals with DS
who have complex needs.
Steinhafel’s will match the
money we earn up to
$250! So, stop by to check
out the Buddy Walk site,
enjoy a hotdog or brat and
help Wisconsin Upside
Down! Volunteer’s are
needed to man the grill and
sell the treats! Call Robbin at 262-443-8690 if you
are interested in lending a
hand. Steinhafel’s is
located at
I94 and
county
Hwy F.
VOLUME III
ISSUE IV
PAGE 3
YMCA FUN FRIDAYS!
The YMCA at Pabst Farms in Oconomowoc is offering a great program on Fridays that you won’t want to miss. Kidz
Club is for children with disabilities and their siblings and takes place on the third Friday of the month from 5:30-8:00 PM,
Fun Fridays is for those 10 and older and takes place on the second Friday of the month from 6:00-8:00. Both programs
offer arts and crafts and gym activities. Programs are inexpensive and open to the public! $10 for early registration (by
Wed. prior) or $15 at the door! Parents, this is a great time to step out for a quiet meal and know that your loved ones are
in a happy, safe environment! Call The YMCA at 262-567-7251 for more info or visit www.ymcaatpabstfarms.org.
Milwaukee Free
Children’s Clinic
An Anat Baniel Method Clinic will be offered to children in Milwaukee, on August 22nd. Patricia Holman, clinic coordinator,
visited with Wisconsin Upside Down parents and children at the
annual Wisconsin Upside Down Picnic. If you missed the picnic, you can call Pat for more information call 414-535-7283 or
e-mail her at patholman@wi.rr.com.
Save the date for a special breakfast with Dr. Brian Skotko on Saturday, November 20th at 9am in the community room at Steinhafels in Waukesha at I94
and county Hwy F.
New Prenatal Tests for Down Syndrome:
Everything You Need to Know & Should Be Doing.
Dr. Brian Skotko will describe the latest prenatal tests for Down syndrome in terms that everyone can
understand. He will assess the impact of prenatal testing on the number of babies being born with
Down syndrome, and he describe ways in which parents can play an active role in ensuring that new
and expectant parents receive up-to-date, quality information about Down syndrome.
Our members have told us that this issue is important to them, so we are not only bringing him in to meet parents, he will be
spending time on grand rounds at Children’s Hospital of Wisconsin and with residents and local doctors. Too many of us
have received the news in a harsh manner with little information and no hope. Our goal is to help medical professionals in
Wisconsin learn to provide factual information about Down syndrome in a compassionate way to parents whose children test
positive for Down syndrome. We also need your help. If you would like to help sponsor Dr. Skotko’s visit, please call us at
262-443-8690. With your help we can spread the word that Down syndrome is down right beautiful.
Brian Skotko, M.D., M.P.P., a clinical fellow in genetics at Children's Hospital Boston, Massachusetts General Hospital, Brigham & Women's Hospital, and Dana Farber Cancer Institute, has dedicated his professional energies toward
children with cognitive and development disabilities. He is one of the specialists in the Down Syndrome Program at Children's
Hospital Boston. In 2001 he co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard’s John F. Kennedy School of Government. Brian recently authored major research on how physicians deliver a diagnosis of Down syndrome to new and expectant parents. He has been
featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, NPR’s On Point, and ABC’s
Good Morning America. Brian serves on the Board of Directors for the Massachusetts Down Syndrome Congress, the National
Down Syndrome Society, and Band of Angels Foundation. He further serves on the Professional Advisory Council to the
National Down Syndrome Congress.
PAGE 4
Wisconsin Upside Down 2nd Annual
Buddy Walk is a Perfect 10!
Myth: People with
Down syndrome are
severely “retarded.”
Truth: Most people with
Down syndrome have
IQs that fall in the mild to
moderate range of intellectual disability (formerly
known as “retardation”).
Children
withwas
Down synThe Buddy
Walk
drome fully participate in
established
in 1995 by the
public and private educaNational
Down
Syndrome
tional
programs.
EducaSocietytors
(NDSS)
to celebrate
and researchers
are
Down Syndrome
Awareness
still discovering
the full
potential
month educational
in October
and toof
people
with
Down
synpromote acceptance and
drome.
inclusion of people with
Down syndrome.
Today, the Buddy Walk
program is made up of 275
Walks internationally and
raises more than $10.5
million annually to benefit
local programs and services, as well as national
advocacy and public awareness initiatives that serve
individuals with Down syndrome.
If you can remember the
the Pewaukee River.
number 10, then you’ll re-
It’s a wonderful nature
member the 2nd annual
preserve with paved
Wisconsin Upside Down
paths and natural
Buddy Walk,
walks.
because this year the
event is a perfect 10!
The Buddy Walk is the
That means the walk
main source of income
takes place in October, on
for Wisconsin Upside
the 10th day, in 2010.
Down and therefore
That’s a trisomy! 10-10-
important, so that we
10, just like Down syn-
can continue to offer
drome is a trisomy of the
programs at little or no
21st chromosome! So our
cost to our member-
10-10-10 walk will kick of
ship. Though mem-
at 10am! So Remember
bership is free, we
10 and you know the date
hope that most of our
More photos
of our fun at
and time of the walk.
Avalon Tec
that you are going to love
tinue to make the state
this year! The event is
of Wisconsin aware
that Down syndrome is
down right beautiful!
of their superstore and
corporate offices in Wau-
But the best part of a
kesha. If you haven’t vis-
Buddy Walk is the way
ited them before, the store
it just feels like a family
and offices are circled by
reunion. It is so nice
a lovely park and walk full
to get together with
with a path that winds
Buddy Walk 2009
www.wiusd.org
around the park along
making the lives of people
with Down syndrome better.
pate and help us to
raise money to con-
of whimsical sculptures,
who are all committed to
members will partici-
We have a new location
being hosted by StienKelly can ride while doing a puzzle!
hafels Furniture at the site
other families and friends,
This is your chance to meet
people with Down syndrome
from across Wisconsin.
You’ll
have
ball, while you
Oh
my gosh!
Sam
is riding
backward!
make
a difference
in the
lives of some very special
people! So, start a team
and join in on all the fun!
VOLUME III
ISSUE IV
STEP ONE
Register online by going to:
www.wiusd.org an clicking on the Buddy
Walk icon!
Once you register online, you can
 Start or join a team
PAGE 5
STEP TWO
Raise donations
Ask friends and family to
visit your webpage.
Set a goal to raise a certain amount per week.
• Create your own Web page, upload 2
photos and personalize your message.
Link your Walker webpage to your MySpace,
Facebook, or Twitter accounts.
• Collect and track online credit card or
check/cash donations.
Find out if your employer offers a matching gifts
program.
• Use e-mail tools to communicate with
friends, family & co-workers.
There will also be on-site registration the day of
the Buddy Walk, but t-shirts are not guaranteed
if you do not register in advance.
All Walkers will need to check-in at the Buddy
Walk Registration table when they arrive to sign
a waiver, pick up t-shirts and turn in donations
not already mailed in.
Volunteer Opportunities!
We have lots of opportunities for
volunteers, especially great for groups like:
Teens, Employee Groups, Kiwanis, Rotary,
Scouts, Women’s groups, Etc.
Advance Opportunities:
T-shirt packing and sorting, Bank Day/ T-shirt
Distribution, Donation pick ups, Prep October 9
Walk Day:
Early Morning Tent Set Up, Resource Fair,
Children’s activities, Lunch servers, Walk helpers, Registration, Stage help, First Aid, Raffle,
Clean up, Tear Down Tents, etc.
Call Diane Moede to sign up as a group or
individual. 414-525-1376 or info@wiusd.org
Checks should be made payable to:
Wisconsin Upside Down or WIUP
STEP THREE
Mail in or bring your donations, sign a
waiver and join the fun at the Buddy Walk!
There are five ways you can turn in your
donations:
1. Collect credit card donations online
using your secure online webpage.
2. Mail in your donations to Wisconsin Upside
Down, 155 East Capitol Drive, Suite 10A,
Hartland, WI 53029
3. Bring cash or checks with you to Our Buddy
Walk Rally on September 11, watch the website for
more info.
4. Bring you money to Bank and t-shirt day on October 9th at Stienhafel’s from 9am till noon.
5. Bring it all to the walk on October 10th!
Don’t fret if you don’t have internet!
Call Robbin at 262-443-8690
and she’ll get you signed up or use the unclosed
sign-up sheet to mail in!
Wisconsin Upside Down is recognized as a 501c3 charity.
VOLUME I11
ISSUE IV
PAGE 6
Cornerstone Stars Camp
Offers Individuals With Disabilities A Chance To Get Into The Game!
Stars Camp is brainchild of Coach Dave Christman. His sister, Megan, who has Down syndrome, inspired
him to start the basketball camp ten years ago. This year, with the help of Wisconsin Upside Down,
he was able to offer two camps, one for children under 12 and one for teens and adults. Pictures here are of
the children’s camp that took place in early July. Campers learn basketball skills with
their peers and have a great time doing it.
Stars Camp is free to anyone who wants to go and finishes with a big family dinner and
award ceremony that’s always fun for all. Thanks to all the sponsors that helped make
this a great camp: Caring Hearts, Pizza Hut, Lake Country Women’s Club, Kirsten’s
Salon, Jenson Motors, Marquette Basketball, Town Bank, Robb Brinkman Construction,
Competitor Awards & Engraving, Village Graphics, XPEDX, M&I Bank, First Insurance
Solutions, Midwest Twisters, Hair and Image Plus, Mark’s Select Pest Control, Niceware,
Pat’s Heating and Air Conditioning, Mark’s Select Pest Control, and Ruby Inc. A special thanks also to the
volunteers, who seemed to have as much fun as the campers! Thank you also to Kelly Johnsen for taking
photos of the camp.
Photos by IllustrationsPhotos.com
Merton, A Story Of Inclusion
by Jan Jorjorian
Monday, I had the experience of running the ½ mile with Mitchell, one
of the kindergarten students I work with. Now it is a fact, that someone
did run piggy back with him for a spell, and yes, we walked for a spell;
but for a great portion of the jog, this little guy ran on his own, holding
my hand and the hand of a helpful classmate. I fully expected to walk
a great portion of this race, or cheat and take a short cut, but nope…
this little tyke was happy, willing , and driven to run. All along the way,
Primary and Intermediate students cheered him on, gave high fives and knuckles while chanting…Go
Mitchell….Go Mitchell…..Go Mitchell…..Every time he started to slow down, there were more supporting
cheers from students at all grade levels who motivated him to pick up the pace.
Along the Intermediate School back parking lot, Intermediate students were lined up to cheer the kindergartners on, and although we were the last of the kindergarten runners, the cheers for Mitchell were the loudest!
As he approached the flags at the finish line, the chants from classmates continued and the smile on his
face reached from ear to ea r. I’m sure I wiped more than one tear away! It’s amazing what kids can do with
a little help from their friends! ! No amount of encouragement from me would have had the same impact as
what his peers could do for him.
I’ve been in this profession for a long time and worked in many different schools, but I have never before
seen the honest, caring support that Merton students offer to one another, and particularly to our children
with special needs. We are truly a school of inclusion and a community of caring learners! I am privileged
to be able to share the small successes and great accomplishments of all of our learners. Thanks to all of
you who support student leadership, compassion, respect, and honest caring for ALL students. It makes all
the difference in the world and is a fundamental part of what makes Merton Schools so great!!
A big thumbs up goes
to our annual picnic!
The day was gorgeous,
the kites were flying
and families and smiles were abundant! Special thanks to Kelly
Johnsen for capturing images of
much of the fun. The noodle relays were hysterical, especially
when the moms and dads tried it
out! The picnic is held annually on
the first Sunday in June.
155 East Capitol Drive
Suite 10A
Hartland, WI 53029
N41W29213 Prairie Wind Cir. S.
TO:
Pewaukee, WI 53072
Down Syndrome Is Downright Beautiful!
Board Members
Robbin Thomas Lyons-President
Amy Elfner-Treasurer
Diane Moede- Secretary
Tracy Boden- Self Advocate
Heidi Conrad-Member at large
Kathy Richards-Member at large
Marlene Millevolte-Arts Chair
Albe Heinen-Kenosha Chair
We Need You! Volunteer Today!
262-443-8690
www.wiusd.org
Sign Up for a Pick-N-Save
Advantage Plus Card & register
#942656. Wisconsin Upside Down
will benefit every time you purchase
Roundy’s products!
Wisconsin Upside Down
Membership Application
Membership is free of charge, however
donations are always appreciated.
This is a:
□ new membership □ member renewal
□ change of information
Name: ______________________________
Address:
______________________________
City:
State:
Zip:________
Home Phone:_____________________
Cell Phone:
Email: __________________________
Mail to : Wisconsin Upside Down
155 East Capitol Drive, suite 10A
Hartland, WI 53029 or register on-line at
WWW.WIUSD.ORG