Summer, 2004 - UPS for DownS

S U M M E R
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few thoughts as I assume the
role as a Co-Chair of UPS for
DownS. First, I want to thank
Pat Shimanek for all of the wonderful work she has done. Her leadership has helped to broaden the role of UPS for DownS in serving
the needs of people with Down syndrome.
A
I am honored to have been nominated for the position. I have been
involved with UPS for DownS since the birth of our daughter
Allie 10 years ago. My wife Lisa and I came to UPS for DownS
as the parents of a newborn child with Down syndrome. We
were looking for support and guidance on this new and unexpected turn that our journey through life had taken. We not
only found support from a group of caring people, we also
found much more.
We found a wonderful group of
families from difNote from the Chair . . . . . . . . . . . . . . . . . .1
ferent backgrounds who
were united by one common bond,
Kane County Cougars . . . . . . . . . . . . . . . .1
the love of someone who had a disability.
UFD Calendar . . . . . . . . . . . . . . . . . . . . . . . . .2
That common bond is the strength of our organization
Parent Social Night . . . . . . . . . . . . . . . . . .2
and why it is my privilege to be associated with UPS for DownS.
Commitment to Excellence .insert/2
As you read this newsletter you will
May/June Meeting Recaps . . . . . . . . . .3
find that it is filled with information
and activities. That is the surface.
“Other families are one Fall Event . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4
Read between the lines of this newsletthe most valuable
NADS Convention . . . . . . . . . . . . . . . . . . . .4
ter: you will see the caring, compasresources for those of us DDC Buddy Walk . . . . . . . . . . . . . . . . . . . . .4
sion, and vision of an amazing group
of people inspired by that common
who are confronting the Looking Ahead . . . . . . . . . . . . . . . . . . . . . . .4
bond.
issues of disability.”
Down Syndrome 101 . . . . . . . . . . . . . . . . .5
Other families are one the most valuJim Gill Music Play Series . . . . . .insert
able resources for those of us who are
Photo Request . . . . . . . . . . . . . . . . . . . . . . .6
confronting the issues of disability.
We have celebrated many wonderful times and been comforted through Kids’ Club . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7
many difficult times by our UPS for DownS family.
The Playhouse Page . . . . . . . . . . . . . . . . .8
Photo Request . . . . . . . . . . . . . . . . . . . . . . .9
I look forward to partnering with Sandy Pazerunas and with all of you
in providing support to families and advocacy for people with disabili- PreTeenScene . . . . . . . . . . . . . . . . . . . . . .10
ties. We have accomplished so much but there is more to be done.
Resource Library . . . . . . . . . . . . . . . . . . .10
Steering Committee Info. . . . . . . . . . .10
, Co-Chair Bowling Thanks . . . . . . . . . . . . . . . . . . . . .11
Family Swim Party . . . . . . . . .back page
Mike Reninger
Saturday
July 24 2004
UPS for DownS
Paren t Social Nigh t
D I G I TA L / P O LA ROID CAMERA SCAVENGER HUNT
2:45 p.m. SibShop
6-9 p.m. Family Swim Party
Yes, you read it correctly! Get a sitter for
the kids and come join us for a fun and
inexpensive night out! We will be meeting at the Graves residence and heading
out with our cameras on a scavenger
hunt. Please bring an hors d’oeuvre or
dessert to share afterward while we assess
who the winners are.
July 31 2004
Parent Social Night
Photo Scavenger Hunt
July 31 2004
Parent Coffee and Playgroup
August 14 2004
TeenScene - Chocoholics Unite!
August 28 2004
Parent Coffee and Playgroup
August 28 2004
Kids’ Club Fun Fair
August 28 2004
TeenScene - Mad Science
August 29 2004
Kane County Cougars outing
September 7 2004
Jim Gill Music Play Series - first session
September 10-12 2004
TimberLee Family Camp Outing
September 11 2004
TeenScene - Game Night
September 14 2004
Janet Rickert - Katie MacDonald Literacy Project
September 28 2004
UPS for DownS meeting
Legislation: Learn to Love It
October 15 2004
Fall Event - Viva Las Vegas!
October 23 2004
NADS Convention
Congress Plaza Hotel - Chicago
U nl e s s o t h e r w i s e i n d i c a t e d , a l l
e v e n t s l i s t e d h e r e i n b o l d pr i n t
a r e p re s e n t e d a n d h o s t e d
b y U P S f o r D ow n S .
Send changes or additions to our mailing list to:
UPS for DownS
Attention Pat Fogarty
1069 W. Golf Road
Hoffman Estates, IL 60194
Phone: 847-885-6216
E-mail: [email protected]
DATE: Saturday July 31
TIME: 6:30 p.m.
PLACE: Graves’ house, Hoffman Estates
THE HUNT WILL BEGIN PROMPTLY AT 7:00 p.m.
Please RSVP to Melinda Zambito 847-466-9953 or
[email protected] by Thursday, July 29.
U PS for Do w nS
Commitment to Excellence Award
In October,
UPS for
DownS will
host its Second
Annual Fall
Event. Last
year at this
event, UPS for
DownS recognized
three individuals and
organizations with the
first ever Commitment
to Excellence Awards.
UPS for DownS would
like to continue to
honor individuals or
organizations that are
committed to our children and adults with
Down syndrome.
Please use the form
enclosed to nominate
those who you feel
should be recognized.
All information must be
completed on the form
before returning.
Questions? Call Patricia
Shimanek at 630-5958147.
Deadline for submission: July 31, 2004.
Please Note: UPS f or DownS is a v olunteer group consistin g
of parents, rat her than educat iona l, me dical, or le gal professionals. The UPS for DownS newslette r is similar ly w ritten
on a volunteer, non-professional basis. Inform at ion pr esented in th e ne wslette r sh ould not be constr ued to be objective
or definitive, but repre sents the opinion s a nd un de rstandings
of the contributors.
We are not respon sible for r eliance
made on any information in this newsletter.
We wish to
bring togethe r those inter est ed in Down syn drome and
attempt to create an optimistic outlook a nd attitude a bout
Down syndr ome for our fam ilie s and other s.
2
May Meeting Re-Cap
GR A N D PA R E N T A N D E X T E N D E D FA M I LY M E E T I N G
On May 25, Diane Gould, a licensed clinical therapist, facilitated a meeting for grandparents and extended family, along
with input from parents. Ms. Gould has been involved and interested in disability-related issues since her teenage years.
She currently works for Niles Township and has a special interest in the impact that children with special needs has on the
dynamics of extended families.
Gould pointed out that it was likely that the families in attendance at the meeting
were likely not those in which great amounts of family conflict exist and that it
was more likely that those who couldn't get their extended family to participate
would be the ones who could benefit most from this type of experience.
In her experience, concerns of parents of children with special needs as it relates to
grandparents/extended family include:
•lack of appreciation of the stress of parenting a child with special needs;
•wanting more help from extended family;
•unsolicited advice or blame (e.g. if you would only parent differently, behaviors
wouldn’t occur.)
•grandparents are in denial about disability or too cheerful and unrealistic about
outcomes (parents felt that grandparents weren’t “getting it.”)
On the flip side, when Gould met with grandparents, they expressed that their concerns were:
•Grandparents felt that it was their role to be cheerful and encouraging to their kids (that they would be happy and
enthusiastic to their children, but would go home and cry - they didn’t want their kids to see their sadness/worry).
•They wanted to be strong for their kids.
•Grandparents expressed that they aren’t only worried about outcomes for their grandchild, but that they are seeing
their own baby in pain and they can’t do anything to fix it.
•Grandparents expressed that they feel like there is nothing they can do to help.
cont. on p. 6
the Playhouse on September 12th, and Beth
Spenadel from West Suburban Support group
was looking for groups to co-sponsor a math
workshop with that group.
June Meeting Re-Cap
DINNER
AND
A NNUAL MEETING
The annual dinner meeting
was held on June 22, 2004 at
the Prairie Rock Brewing
Company. There was a good
turn out of forty parents. The
evening included dinner, cash
bar, great socializing and, of
course, some business.
One of our struggles this year
has been our inability to provide child care at our monthly
meetings. GiGi’s Playhouse
has been a tremendous
resource to families and people with Down syndrome. We
are fortunate to have the
Playhouse to host our meetThe UPS for DownS 2004ings and other activities.
2005 steering committee was
However, because of space
elected (see steering committee article for details). A
Allison Vargas laughs as Lisa and Tom Boehm limitations and sound issues
at the Playhouse, we have not
questionnaire was distributed
share a story at the dinner meeting.
been able to offer child care
to those in attendance to produring our meetings. We plan to brain storm
vide feedback about past and future programon this issue over the summer. Please let us
ming, activities, items of interest for the
know if you hav e any suggestions or ideas.
resource library, and requests for volunteers to
join committees or share new ideas. Several
This meeting provided an opportunity for parbrief reports and reminders were announced
ents to meet other parents in a fun and relaxfrom the bowling committee, summer events
ing environment. It is a great way to cap off
coming (see dates in newsletter),
the year activities, review what programs and
Commitment to Excellence award nominations
activities benefited families, and to look to the
due July 31, the dinner dance to be held
future for better ways to support families with
October 15, GiGi’s Playhouse announced their
children with Down syndrome.
bowling fundraiser on July 24th and Run for
3
Seco nd
Annual
SAVE THE DAT E :
Fall
Event
Frid ay, Octobe r 15, 2004
UPS for DownS’ Dinner Dance and Fundraiser will be held at
the Cotillion in Palatine and have a glitzy theme, "Viva Las
Vegas!" You may win a trip to Vegas, baby! The room will be decorated with
pictures of our children (send in your favorite - see p. 6 for details). Music
will be provided by Chicago's hottest party band...The Gentlemen of Leisure!
Dig into the back of your closet and dust off those flashy sequined clothes,
pull out the rhinestones and come out for a good time.
Tickets are $50 per person. The dinner ticket includes hors d’oeuvres, a four
course dinner and wine with dinner. Start saving your pennies now for the
Silent Auction & Dutch Raffle.
Do your cardiovascular workouts because you'll be dancing all night. The
Gentlemen of Leisure Band "guarantees a good time.”
Look for invitations the first week of September. We sold out last year!
Tickets will be sold on a first come - first serve basis.
Questions? Contact Stephanie Neri at [email protected] or 847891-3224.
Looking ahead
September 28:
"Legislation: how to
understand it,
befriend it and use it
for our children's
futures."
UPS for DownS
PRET EENSCENE
TEENSCENE
K IDSCLUB
Next outing:
FA M I L Y S W I M P A R T Y
Saturday, July 24th, 6-9 p.m.
SEE BACK PAGE FOR DETAILS
Presenter: TBA
DDC BUDDY WA L K
he DDC's Seventh Annual Buddy
Walk will be Sunday, September
19, 2004. It will be at Lambs Farm
in Libertyville for the third year in a
row. This year's Buddy Walk promises
to be better than ever.
National Association for Down
Syndrome Convention
There will be music, activities, food and ceremonial
walks throughout the day. This event is a fun-filled family day meant to generate greater awareness and
acceptance of people with Down syndrome. We invite
everyone to attend with friends and family.
Saturday, October 23rd is the date for
the NADS Convention. The information-laden day will take place at The
Congress Plaza Hotel in Chicago,
Illinois.
For more information, contact Buddy Walk Coordinator
Deb Pogose at 847-973-1622 or [email protected].
Call NADS at 630-325-9112 for registration information.
T
4
Down Syndrome 101
DS101 session was a huge success! We
had a great group of siblings and cousins
who came to learn about Down syndrome. The kids all did a great job of
listening and asking questions. Some of
the tough questions we talked about
included:
What is DS?
Why do some people have DS?
Why do people with DS have a harder time doing
things?
Do people with DS grow up? and many more.
A huge THANK YOU to all who participated and
provided feedback.
Based on the positive comments received, UPS
for DownS will offer this session again. Watch
future newsletters for a date in January or
February. If you have any questions or comments, please contact Shari Andress at [email protected] or 847-891-6678.
Teen Scene
By Pat Fogarty
UPS for DownS Teen Scene continues to meet and have fun during the summer months. We’ve
got a variety of activities planned, and hope all teens (12 to 18 years of age) are able to join us.
Remember, all activities are just $5 per teen. Thank you UPS for DownS for supplementing any
remaining costs!
In May, Anita Herr taught the girls some make-up tips and gave each girl her own little make-up
case and nail polish. The boys didn’t get away without some attention, however. They all got a
hand-softening treatment despite their protests that that
stuff is for girls! Then they escaped to watch Crocodile
Dundee, with an occasional glance over at the girls to giggle. The Teens also met on May 22 at Lollipots (111 E.
Schaumburg Road, Schaumburg) and painted and decorated their own ceramic plate. The finished plates are
awesome to behold! (Note: If you made a plate and haven’t
receive it yet, you can find it at GiGi’s Playhouse).
June’s activities included miniature golfing at Congo River
Miniature Golf (1325 Barrington Road, Hoffman Estates).
The weather was perfect and the Teens had a great time!
The Teens joined GiGi’s Playhouse Shrek and Pizza Night
and the 4th of July Parade in Hoffman Estates.
Emma and Katrina had a unique method of
golfing each hole at the same time, and with the
same color ball!
Upcoming events:
July 10
July 24
August 14
August 28
September 11
GameWorks of Schaumburg
Swimming at the Schaumburg CRC (details are in this newsletter)
Chocolate, Chocolate, Chocolate (chocolate candy-making)
Mad Science (fun science experiments and demonstrations
Game Night (board and card games)
Does your Teen have an acting bug?! Marguerite Walte is working on a version of The Wizard of
Oz to be performed by Teen Scene. More information will be coming soon!
Need more information? Call Peggy at 847-359-3394 or email Pat at [email protected] or
[email protected].
5
P H O T O RE Q U E S T!
Thank you to those of you who have given me a picture of your child for the dinner
dance. These beautiful faces will be placed around the Cotillion as decoration and
will also be used in the program.
The deadline is August 31st . Any close up picture will do, just send it in.
These pictures and introductions really add to the evening and speak volumes about
our children. Get them in early and mark it off your to-do list.
Guidelines for picture:
1. Provide a photo or digital photo (high resolution) - any size or color.
2. Must be a head shot or close-up of your child
3. Please contact Stacy Graves to arrange delivery of photo (see below)
4. Brief introduction of your child-some examples of things to include- name, age,
accomplishments, hobbies, favorite thing to do, etc. This is intended to be a way for
you to introduce your child to those attending the dance and describe why they are
special. Keep to 150 words or less.
Submit photos or questions to Stacy Graves at [email protected] or call 847608-9781.
MEETING RECAP cont. from p. 3
•Grandparents feel like they have to hide their true
emotions and remain strong and cheerful for their
children. Gould explained that often these hidden
emotions come out in different, less healthy ways.
different ways of interacting with all of their grandchildren and it doesn’t have anything to do with disability, just that each kid has their own personality.
•My parents are always willing and able to babysit or
take the kids overnight. (This was very popular!)
A portion of the discussion centered on extended family
•My parents live far away, but will come and stay
and the lack of support and education for cousins, who
with our kids if we have plans, like a wedding, a
are typically regular playmates and potenweekend away or even the UPS for DownS
tially lifelong participants in the child with
bowling night.
DS’s circle of support. There are often out- Many families aren't •They’ve noticed that it costs more to have a
lets for siblings of kids with special needs,
close emotionally or child with special needs in the family and
but rarely does anyone pull aside their
do things to help out financially
geographically and respectfully
cousins and explain about Down syndrome
as they can - whether it’s to take the kids for
and learning differences. Kids end up hav- therefore aren't in sit- haircuts or shoe-shopping or helping to pay
ing to figure it out on their own (“I guess I
therapy or diapers or dinner.
uations that work for
can’t catch it”) or distance themselves
•My parents live far away, too. It is so cool
because they don’t understand.
well for day-to-day to see them volunteer in ways that they hadn’t thought about before - doing respite care,
support.
Participants then divided into a parent group
helping at their local early intervention cenand an extended family group. Parents
ter or special olympics. They want to do
were given the assignment to come up with things that
more and learn more first-hand about what our life is
they wish that Grandparents/Extended family would do
like 500 miles away from them - and they’ve done it
more of and things that parents wish they’d stop doing.
by helping others in our shoes.
•They see my child as so much more than just Down
The list was interesting. For some parents, proximity of
syndrome.
grandparents was generally a good thing, but didn’t come
•My parents went out and handled the special needs
without some downside. Each family had different expeestate planning stuff for us. They knew it was imporriences.
tant and could tell that we were overwhelmed, so they
just did it. It gave them some peace of mind, too.
There were lots of positive remarks and experiences,
•My mom always told me it would be okay and that
agreed upon by many:
our life would be normal again. I remember scream•I love that my parents have educated themselves
ing at her when my son was tiny “He has Down synabout Down syndrome and estate planning issues;
drome, mom. We will never be normal again.” Mom
•My parents treat all of their grandchildren fairly.
was right. It is okay. But she allowed me to vent
•My parents don’t treat all of their grandkids the same
and was supportive and accepting of the feelings that
- and that’s a good thing. They are fair, but they have
I was having.
6
cont. on p. 7
KID'S CLUB
is underway!
We have had two fun events this summer already. We had a play
date at Gigi's playhouse and a picnic at the park.
We will generally meet on the 4th Saturday of each month.
All kids with DS ages 3 - 8 are invited to attend - siblings are welcome.
O UR S UMMER
Kid’s Clubbers Heather A. and
Cristina C. became fast friends!
S C H E D U L E:
July 24 - Swim with UPS For DownS at Schaumburg CRC
August 28 - Back to school fun fair at Gigi's Playhouse 1:30 - 3:00
(We will set up all sorts of fun fair games for the kids to play and win prizes)
If you have any questions or want to be put on the Kid's club e-mail list, please contact Shari
Andress at [email protected] or 847-891-6678
cont. from p. 6 During the discussion about the negaable about it.
tive side, some of the following com•My extended family aren’t supportive. My brother
ments were heard:
and sister-in-law have told their kids to distance them•My parents won’t take care of my child with DS, but
selves from my daughter. They just don’t appreciate
they will take care of their other grandkids. They seem
the challenges our family faces and are dismissive of
to be afraid of him.
the desire that our daughter has to be with her cousins.
•I don’t understand their desire to “fix” him. They
They don’t invite her to sleepovers or birthday parties
keep talking about growth hormones, special diets,
anymore. It really, really hurts me to see her excluded.
facial surgery and this or that new
•Our family seems to think that our child
cure...enough already. He’s perfect.
“My parents are no with DS gets too much of our attention.
Let’s accept who he is and give him the
What they don’t realize is that they are
longer living.
things he needs to succeed (therapy, eduusing a completely different lens when
cation, orthotics, glasses, etc.) without
Technically, I don’t have they look at him. He’s under such scrutiny
fundamentally altering who he is.
he has a bad day. What they perceive
family here tonight. when
•My parents don’t have the same expecas too much attention is really dramaticaltation for behavior from my daughter
I do, however, think of ly less than our other kids get. It’s just at
with DS as they do for their other grand- UPS for DownS as my different times and usually really obvious.
kids. They let her get away with everyMost of the time, he entertains himself,
extended family.”
thing and say she doesn’t understand.
plays appropriately and it’s the other kids
She hit her brother in the head with a
who are swinging from the chandelier,
shoe - she knows better. She also knows that she can
bickering, making demands and getting grounded!
get away with it with Gramma.
•My parents always invite the other grandkids to spend
•It’s not intentional. No malice is involved. And I
the weekend or extended time with them, but exclude
know it’s probably a generational thing, but my in-laws
my child with DS.
keep talking about my son as a downs, and have
referred to people with DS as “it.” Hello?...what’s that The two groups then came together again to debrief and
about? I wish they’d use “people-first” language. My
share their discussions.
son has Down syndrome and is not a “downs” or a
It is obvious that families need to communicate clearly to
“downie,” ugh.
one another what their expectations and needs are. If you
•This is going to sound ungrateful, but my in-laws and are a grandparent who doesn't want to babysit, say it. If
parents all live less than five minutes away. They are
you are a parent that needs more support, ask for it. But
too helpful. They are always calling to help and comacknowledge that each of you is an adult and has to make
ing over to help. I just want to parent my kids. I’d like choices for yourselves.
to feel like I can ask for help when I need it, and not
that I have to accept it every time it is offered.
Many families aren't close emotionally or geographically
•My family just won’t talk about it - to me or to others. and therefore aren't in situations that work well for day-toIt’s like this big secret that we can only whisper about. day support. What makes up your system of support need
It’s almost as if they are ashamed to have a grandnot reflect traditional family relationships. As stated by
child/nephew/niece with a disability.
one of the participants during introductions,"My parents
•My parents think they are helping, when they aren’t. I are no longer living, so technically, I don’t have family
need someone to learn about my child’s needs and take here tonight. I do, however, think of UPS for DownS as
the lead so I can leave her with them and feel comfort- my extended family.”
7
T HE P LAYHOUSE P AGE
1069 West Golf Road
Hoffman Estates IL 60194
Located 3 miles west of Woodfield, next to
Schaumburg Toyota in the Brandess Center
Remember your friends and families are
Polish group meets the 4th Sunday of each month from 1-3
always welcome at GiGi's Playhouse events. Our
p.m. See our beautiful mural behind them!! Thanks to our kids
There is no charge and the walls are full of and artist Marilyn. Also, the Spanish playgroup is growing fast!!
wonderful pictures and posters for them to
learn from!! If you are not on our mailing
list, leave a message with your info at the Playhouse (847-885-PLAY).
Our Thursday picnics in the park are a great time (even if they have to be inside because of
the weather)! Every Thursday is a new adventure! All ages!!
SUPPORT OUR TROOPS!! In August we are going to be writing letters to the troops and
sending pictures of the kids saluting, waving a flag, or just blowing them a kiss! Don't
worry if the kids can't write; we will have lots of volunteers and the Schaumburg Jaycees
helping out!! A picture is worth a thousand words!! Call for the date and to reserve your
spot! Bring the family: this is going to be a wonderful experience.
Our 2005 "Living it UP" inspirational calendar is in production and will be ready for sale in
August! The price is $10.00 This calendar is going to be as educational as it is beautiful!
We lowered the price (but not the quality) so we could spread the word to even more people
about our beautiful children (and adults too
this year)!!
Heidi Aldama is heading up GiGi's Playhouse
5k fun run or 1 mile walk on Sunday
September 12th! Call for details
SAVE THE DATE!! Sunday October 3rd is
GiGi's Playhouse's ONE year anniversary
party!! Bring your family and friends to show
them how far we've come!!
Our July birthdays will be celebrated at the August party
because of the parade! (Our open B-day parties are always
the 1st Saturday of the month) Look at this group in June!!
The Playhouse Prom is July 24th from 7-10!
Dinner, dancing and it's FREE! (ages 18 & up)
RSVP ASAP to reserve your spot!
R e m e mb e r , Gi G i ' s P l a yh ous e i s yo u r p l a yh o u s e , t oo !
There is no charge to host a Down syndrome-related event. Call 847-885-PLAY to schedule.
8
Don’t see your name? Send corrections and additions
to Pat Fogarty at [email protected]
Kiera Breault . . . . . . . . . . . . .8/28/81
Brandon Bird . . . . . . . . . . . . .8/26/87
Jenna Pomykalski . . . . . . . . .8/25/91
Joel Lenart . . . . . . . . . . . . . .8/25/90
Jack Erb . . . . . . . . . . . . . . . .8/25/01
Blake Peacock . . . . . . . . . . . .8/24/86
Sabrina Zurita . . . . . . . . . . .8/24/00
Joshua Talbot . . . . . . . . . . . .8/23/01
Jennifer Shafer . . . . . . . . . .8/21/02
Leo Guzman . . . . . . . . . . . . . .8/20/90
Angela Picchi . . . . . . . . . . . . .8/20/80
Kevin Stith . . . . . . . . . . . . . .8/19/85
Jack Ford . . . . . . . . . . . . . . .8/18/92
Lauren Ovsey . . . . . . . . . . . . .8/17/95
Tori Moore . . . . . . . . . . . . . .8/16/96
Jack Taaffe . . . . . . . . . . . . .8/15/96
Ashley Fortman . . . . . . . . . . .8/15/03
Mary Goodenaugh . . . . . . . . .8/15/03
Zachary Zambito . . . . . . . . . . 8/11/95
Elizabeth Gottlieb . . . . . . . .8/10/88
Derek Miles . . . . . . . . . . . . . .8/11/93
Jennifer Adkins . . . . . . . . . .8/10/86
Molly Veach . . . . . . . . . . . . . . .8/9/81
Seth Boehm . . . . . . . . . . . . . . .8/8/03
Francesca Maddock . . . . . . . .8/7/96
Britton Rickerson . . . . . . . . . .8/7/86
Gina Rotondi . . . . . . . . . . . . . .8/5/95
Jeremy Johnson . . . . . . . . . . .8/3/03
Giuliana Gianni . . . . . . . . . . . . . . .8/02
Danny O’Connell . . . . . . . . . . . . . .7/01
Christopher Rinaldi . . . . . . . .7/31/79
Mitchell Brandon . . . . . . . . .7/29/92
Marissa Pastore . . . . . . . . . .7/27/00
Zach Fuller . . . . . . . . . . . . . .7/26/02
Jennifer Everett . . . . . . . . . 7/25/87
Nicole Paradise . . . . . . . . . . .7/23/96
Alec Shafer . . . . . . . . . . . . .7/23/94
Austin Kremer . . . . . . . . . . . .7/21/90
Eric Oberlin . . . . . . . . . . . . . .7/21/83
Carolin Jackarir . . . . . . . . . .7/21/00
Anthony Coppola . . . . . . . . . .7/20/87
Danny Orlando . . . . . . . . . . . .7/17/95
Lisa Draxler . . . . . . . . . . . . . .7/17/86
Chad Fabian . . . . . . . . . . . . . .7/17/79
Christie Pelos . . . . . . . . . . . .7/14/97
Dylan Dunlap . . . . . . . . . . . . .7/12/95
Elie Eaton . . . . . . . . . . . . . . .7/12/02
Justin Ross . . . . . . . . . . . . . . .7/11/91
Bret Vybiral . . . . . . . . . . . . . .7/8/97
Melissa Aiken . . . . . . . . . . . . .7/8/78
Elizabeth Faillo . . . . . . . . . . . .7/7/90
Michael Tierney . . . . . . . . . . .7/5/84
Gus Roeser . . . . . . . . . . . . . . .7/3/98
Daniel Svachula . . . . . . . . . . . .7/3/96
Steven Varey . . . . . . . . . . . . .7/3/89
Brendan Pawlowski . . . . . . . . .7/3/87
Jennifer Pavlik . . . . . . . . . . . .7/1/84
Emily Lavin . . . . . . . . . . . . . .6/30/96
Michael McCarthy . . . . . . . .6/28/87
Nicholas Pesce . . . . . . . . . . .6/27/97
Alexandria Musielski . . . . . .6/24/95
Judd Mika . . . . . . . . . . . . . . .6/24/78
Victoria Aldama . . . . . . . . . .6/24/03
Joshua Lawson . . . . . . . . . . .6/24/99
Kelsey Nolan . . . . . . . . . . . . .6/21/94
Tyler Russo . . . . . . . . . . . . . .6/21/01
Matt Rhodes . . . . . . . . . . . . .6/20/99
Brett Benes . . . . . . . . . . . . . .6/20/81
Anthony Zaharopoulos . . . . .6/16/86
Christina Napoli . . . . . . . . . .6/13/98
Nicole Elsey . . . . . . . . . . . . . .6/13/93
Katrina Daly . . . . . . . . . . . . . .6/13/90
Steven Antonacci . . . . . . . . .6/12/92
Gianna Peluso . . . . . . . . . . . . .6/11/01
Emma Kuzera . . . . . . . . . . . . . .6/9/94
Aaron Poucher . . . . . . . . . . . .6/9/87
Christopher Hebein . . . . . . . .6/9/72
Braden Graves . . . . . . . . . . . . .6/8/01
Heather Anderson . . . . . . . . .6/7/85
Emma & Sara Goff . . . . . . . . .6/5/96
Brayden Spence . . . . . . . . . . .6/4/96
Mackenzie McMillion . . . . . . . . . 5/03
Jack Hollister . . . . . . . . . . . .5/30/93
Kenneth Komistra . . . . . . . . .5/30/83
Julie Halfen . . . . . . . . . . . . .5/28/90
Jared Worden . . . . . . . . . . . .5/28/01
Christian Murray . . . . . . . . . .5/27/01
Justice Peters-Farrell . . . . .5/26/92
Logan Davenport . . . . . . . . . .5/25/99
Jonah Neher . . . . . . . . . . . . .5/24/96
Rebecca Ornoff . . . . . . . . . .5/24/91
Farzin Sharyari . . . . . . . . . .5/22/86
Mallory Miller . . . . . . . . . . . .5/20/90
Giovanni Capistrano . . . . . . .5/20/99
Ela Stoklosa . . . . . . . . . . . . .5/19/90
Ashley Jones . . . . . . . . . . . . .5/18/89
Jordan Janus . . . . . . . . . . . .5/17/00
Marty O’Neal . . . . . . . . . . . . .5/15/88
Crystal Acosta . . . . . . . . . . .5/14/84
Brett Schatzman . . . . . . . . .5/12/92
Michael Novy . . . . . . . . . . . .5/12/85
Ashley Costigan . . . . . . . . . . .5/11/00
Michael Ortiz . . . . . . . . . . . .5/10/80
Caroline Lyons . . . . . . . . . . . . .5/4/98
Stephanie Paradowski . . . . . .5/2/95
Michael Lund . . . . . . . . . . . . . .5/1/95
Brian Boldt . . . . . . . . . . . . . . . .5/1/94
Kamile Aviles . . . . . . . . . . . . . .5/1/01
KATIE M ACD ONALD DOWN SYNDROME L ITERACY P ROJECT
MARK YOUR CALENDARS - TUESDAY, SEPTEMBER 14, 2004 - 7:30 P.M. AT GIGI'S PLAYHOUSE
As part of our ongoing mission to promote literacy for all children with Down syndrome, we have invited Janet Rickert to come and speak with us. She has an
exciting presentation entitled, "It's All In How You Look At It." Janet is a local
author who wrote the Russ series books. Her son Russ, has Down syndrome.
UPS For DownS has distributed her books to local area schools and
libraries during our annual book donations for Down syndrome
awareness month.
After Janet's presentation, we will be offering examples of books
that you can make for your child to help them learn to read. We
will also be offering follow-up workshops where we will help you
make your own books.
If you have any questions or comments, please contact Shari
Andress at [email protected] or 847-891-6678.
NOT
ON THE E -GROUP ? UPS for DownS has a list-serve that allows users to participate in e-mail discussions and get reminders about upcoming events.
To join, send an e-mail to [email protected]
9
It’s that time of the year when we look for new
Anixter. He is a Boy Scout leader, hockey coach,
ideas and commitments from our members to forVice President at UBS Financial, and most impormalize the steering committee. The steering comtantly DAD of twelve years. Mike and wife Lisa’s
mittee is a group of people responsible for
commitment to this group and their community
officially running the programs and carrying out
have been an inspiration to me since I first met
the ideas, activities, and programs of UPS for
them at an UPS for DownS’ meeting nine nine
DownS. The success of this organiyears ago.
zation has been in the hearts, hands,
The strength of We also welcome Allison and Luis
and minds of parents willing to
this group
Vargas as hosts of our New Parent
dream, network, and put forth their
time. Lori Boldt has volunenergy to support other parents and
has always been Coffee
teered to maintain and update the UPS
children with Down syndrome.
ordinary parents for DownS website; Kim Kowalczyk
This year we say good-bye to Pat
with extraordinary and Annie Quiroz will maintain the
Shimanek , who has been the covideo/resource library; Marylynn
children.
chair for three years. With warmth
Cassata is taking over the DS
and personality, she has been a wonAwareness Month Book Donation
derful resource. UPS for DownS has seen much
Project. A complete listing of Steering Committee
growth during Pat’s tenure. She has been there supmembers and their contact information can be
porting and organizing programs. A special thanks
found below.
to Pat for putting together our new parent mentorI want to thank all the members of the steering
ing program and folders. Thank-you for the time,
committee, as well as all of those who have voluntalent, and energy you put forth as the co-chair.
teered their time1 and energy to support families
You will be missed.
with children with DS. The strength of this group
Our new co-chair, Mike Reninger, comes to UPS
has always been ordinary parents with extraordifor DownS with exceptional organization experinary children. Thanks for making it all happen!
ence from being on the board of directors for the
, Co-Chair
National Association for Down Syndrome and
Sandy Pazerunas
POSITION
NAME
PHONE
E-MAIL
Co-Chairs . . . . . . . . . . . . . . . .Sandy Pazerunas . . . . . . .847-705-0715 . . . . . . . [email protected]
Mike Reninger . . . . . . . . .847-301-0702 . . . . . . . [email protected]
Program Co-Coordinators . . .Kim Orlando . . . . . . . . . .630-483-6903 . . . [email protected]
Anne Cardascio . . . . . . . .847-520-0623 . . . [email protected]
Treasurer . . . . . . . . . . . . . . . .Lisa Reninger . . . . . . . . .847-301-0702 . . . . . . . . . . . [email protected]
New Parent Coordinator . . . .Allison & Luis Vargas . . .847-342-0041 . . . . . . [email protected]
Special Events Coordinator . .Melinda Zambito . . . . . . .847-466-9953 . . [email protected]
Bowling Event Coordinators: Diane Paradise . . . . . . . . .630-483-8113 . . . . . . . [email protected]
Stacy Graves . . . . . . . . . .847-608-9781 . . . . . . . [email protected]
Dinner Dance Coordinator . . .Stephanie Neri . . . . . . . . .847-891-3224 . . . . . . [email protected]
Teen Club Coordinators . . . . .Peggy Grunewald . . . . . .847-359-3394 . . . . . [email protected]
Pat Fogarty . . . . . . . . . . .630-893-6740 . . . . . [email protected]
PreTeen Club Coordinator . . .Lori Boldt . . . . . . . . . . . .847-818-1717 . . . . . . . . . . [email protected]
GiGi’s Playhouse liaison . . . .Nancy Gianni . . . . . . . . . .847-885-7529 . . . . . . . . . . . . [email protected]
Newsletter Printing . . . . . . . .Mike Grunewald . . . . . . .847-359-3394 . . . . . . . . . [email protected]
Webgroup Moderator . . . . . . .Terri Devine . . . . . . . . . . .708-349-9669 . . . . . . . . . [email protected]
Video/Resource Librarian . . .Kim Kowalczyk . . . . . . . .630-893-7391 . . . . . . . . . [email protected]
. . . . . . . . . . . . . . . . . . . . .Annie Quiroz . . . . . . . . . .630-980-3418 . . . . . . . . . . . . . . . [email protected]
Newsletter Editor . . . . . . . . . .Terri Devine . . . . . . . . . . .708-349-9669 . . . . . [email protected]
Mailing List Information . . . .Pat Fogarty . . . . . . . . . . .630-291-6740 . . . . [email protected]
Webmaster . . . . . . . . . . . . . . .Lori Boldt . . . . . . . . . . . .847-818-1714 . . . . . . . . . . [email protected]
Katie MacDonald Literacy . . .Shari Andress . . . . . . . . . .847-891-6678 . . . . . . . . . . . . . [email protected]
10
Bowling Event Nets Profit and FUN!
It was a very successful night, all because of you.
Thank you to all the volunteers and behind-thescenes people who made this event happen.
Don’t miss the fun! Mark your calendar for:
Saturday, June 4, 2005.
Please thank these donors by patronizing their businesses when you are able.
It is through the generosity of these businesses and individuals that UPS for
DownS is able to provide a variety of fun, creative, and meaningful activities
to support our families and children.
4our Seasons Indoor Golf
Abt Electronics
Adler Planetarium
Admiral Heating & Ventilating
Ahern-Gross Plumbing
Ala Carte Entertainment, Inc.
AmeriSuites
AppleILLINOIS, L.L.C.
Arlington Park
Bahamas Breeze
Believe You're Worth It
Bob Chinn's Crab House
Bubba Gump - Navy Pier
Buca Inc.
Burger King/BNB Land Venture,
Inc.
Cernan Space Center
Charlie Trotter's
Chicago Architecture Found.
Chicago Bears Football Club
Chicago Blackhawk Hockey
Chicago Bulls
Chicago Children's Museum
Chicago Cubs
Chicago Wolves
Comedy Sportz
Concep Machine Co., Inc.
Country Sampler Store
Dave & Busters
Des Plaines Park District
Design Toscano, Inc.
Doubletree Guest Suites DuPage
Children's Museum
Edy's Ice Cream
Elgin Symphony Orchestra
Elk Grove Bowl
Embassy Suites Hotel
Fondue Stube
Forest Grove Athletic Club
Frank Lloyd Wright Trust
Garibaldi's
Grand Victoria Casino
Headlines Hair Services
HealthWorld Children's Mus.
Hilldale Golf Club
Holiday Inn - Glen Ellyn
Holiday Inn O'Hare
Hollywood Casino
Hugo's Frog Bar & Fish House
Illinois Railway Museum
Jiminee's Doll Clothes
Jockey International, Inc.
John G. Shedd Aquarium
Kane County Cougars
Kingston Mines
Lands' End Direct Merchants
Lettuce Entertain You
Levy Restaurants
Loews Cineplex Entertainment
Lou Malnati's Pizzeria
Lover's Lane & Co.
Lynfred Winery
Magic Waters
Medieval Times
Michel's Frame Shop Inc.
Mr. & Mrs. Dennis Devine
Mr. & Mrs. Kevin Armstrong
Mr. & Mrs. Mike Grunewald
Mr. & Mrs. Steve Herff
Mr. & Mrs. Steve Swierski
Mr. Joseph V. Roddy, J.D.
Mr. Peter Lewicki
Ms. Allison Vargas
Ms. Diane Paradise
Ms. Julie Orlando
Ms. Stacey Nowak
Museum of Science & Industry
Northbrook Symphony
NWSRA
Oak Brook Marriott
Orbit Skate Center
Palm Court Restaurant
Panera Bread
Park Hyatt Chicago
Phoenix Air Control, Inc.
Pilot Pete's
Piper's Alley
Pops for Champagne
Prairie Rock Brewing Co.
Pro Football Hall of Fame
Prospect Bikes & Trains
RAM Mechanical
Renaissance Oak Brook Hotel
Ristorante Amalfi
Rivers
Rolling Meadows Park District
Roman, Inc. Outlet Store
Roselle Greenhouse
Salton/Maxim Housewares
Santa's Village
Sherman Mechanical, Inc.
Six Flags Great America
Southwest Airlines
Spring Hill Mall
Starbucks Coffee Company
Stoney River
Sybaris
Target
Teddie Kossof Salon and Spa
The Belt Railway Company
The Cheesecake Factory
The Eli's Cheesecake Company
The Living Room
The Second City
The Signature Room
The Talbott Hotel
The Tasting Room at Randolph
Wine Cellars
Tiffany & Co.
Timber Lodge Steakhouse
Trails Entertainment Centers
Tru
Turtle Wax Car Wash
Wa-Pa- Ghetti's Pizza
WhirlyBall
WICU-TV Chicago
Wyndham Lisle
Wyndham Northwest Chicago
Zanies
Fa m il y F un E ven t
Wh en : S a t u r d a y, Ju l y 24th
T im e: 6 - 9 p . m.
Location:
Schaumburg Waterworks
505 N. Springinsguth Road
Call 847-490-2505 for directions
Pack up the kids and swimsuits and join other UPS for DownS’ families
for a private party! We've got the whole place to ourselves! It will be fun
for the whole family.
This is an indoor facility so there's a party, rain or shine! A concession stand will be available to purchase food items.
Please make sure your child wears a swim diaper or plastic pants if you have any uncertainty to their ability to “hold it” in the pool.
RSVP to Melinda at 847-466-9953 or [email protected] by Monday,
July 19th with the total number of people and ages of all children attending.
NOTE: Springsguth is currently under construction and only open to traffic traveling Northbound.
Your best bet is to enter Springinsguth from Schaumburg Rd and go North.
UPS
N
FOR
D OWNS
EWSLETTER M AILING LIST
C/O PAT FOGARTY
1069 W. GOLF ROAD
HOFFMAN ESTATES, IL 60194
Prepare to sing, dance sneeze and even "stick together like glue" on Tuesdays when Jim Gill leads workshops in
family music play. These workshops are filled with imaginative songs and play activities that are meant to be
played by children and parents together.
Jim will sing songs from his four recordings for young children and lead games that he has developed in his work
with families over the last twenty years.
ABOUT JIM GILL
Jim Gill has led programs in family music play for the last twenty years at various family
support and therapeutic agencies in the Chicago area. His programming is based on the
idea that all children best develop and express their abilities through play. Play is also, by
nature, an inclusive activity and Jim's programming has always served a wide range of ability levels.
Jim speaks to early childhood educators throughout the country about the many benefits of
play in young children's lives. He has a Master's Degree in Child Development from the
Erikson Institute of Chicago.
WHO:
WHAT:
DATES:
WHEN:
LOCATION:
COST:
Children with Down Syndrome, ages 2-9 (with a parent or other adult)
8 week session starting Sept 7 and every other Tuesday after that
September 7, 21
October 5, 19
November 2, 16, 30
December 14
Alternating Tuesdays 4:00 - 4:45
GiGi’s Playhouse, 1069 W. Golf Road, Hoffman Estates
$25 for the 8 week session (Scholarships are available)
Questions? Call or email: [email protected] or 630-483-6903.
This class has a maximum of 18 children with their parent. To reduce distractions, please make other arrangements for siblings during sessions.
This is first come, first serve, so register early! We will create a waiting list, if necessary.
PLEASE REGISTER MY CHILD WITH DOWN SYNDROME FOR THE JIM GILL MUSIC PLAY SERIES:
CHILD’S NAME:______________________________
CHILD’S Date of Birth:______
ADULT PARTICIPANT:_________________________
CONTACT (if different):_____________________ Phone:______________ E-Mail:______________________
_____ My check in the amount of $25.00 payable to UPS for DownS is enclosed.
_____ I am requesting a scholarship due to financial need.
In the unlikely event that space is available, please register the sibling/s listed below. Unless I am contacted, I will
make other arrangements for siblings. I understand that children with Down syndrome have priority.
Name_______________________ DOB________
Name_______________________ DOB________
Make checks payable to UPS for DownS and mail along with registration form to
UPS for DownS; c/o Kim Orlando; 1413 Whitefence Rd; Bartlett, IL 60103
UPS for DownS
Commitment to Excellence Award
Many of us who are parents, friends or family of a person with Down syndrome have had our lives
touched in many wonderful ways by others.
UPS for DownS would like to formally recognize the people or organizations that have enriched
the lives of people with Down syndrome. In an effort to do so, UPS for DownS has established
the “Commitment to Excellence” Award for recognition of those who have helped people with
Down syndrome, their families and/or this organization. We encourage you to nominate your
educators, medical professionals, organizations, coaches, or volunteers.
The awards will be presented at the UPS for DownS Fall Event on October 15, 2004. We look forward to saying “thank you” to the many wonderful people and organizations that make the world
a better place for people with Down syndrome through the gifts of their time, talent, treasure or
love.
Questions? Call Patricia Shimanek at 630-595-8147.
Nomination Form
I nominate _________________________________ for the United Parent Support for
Down Syndrome “Commitment to Excellence” award. The above named has
enriched the lives of people with Down syndrome and/or the Down syndrome community through the following significant contribution:
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
____________________________________________________________________________________________
Name, address; phone # of nominee:
_______________________________________
Your Name, phone number; e-mail address:
__________________________________________
_______________________________________
_________________________________________
One nomination per household. Nomination form limited to one page.
Nomination Deadline: July 31, 2004
Return to: UPS for DownS; c/o Patricia Shimanek; 123 W. Florina Court; Wood Dale, IL 60191