February, 2005 - UPS for DownS

S AV E T H E D AT E :
Su n d a y, Feb . 27
F
E B R U
A R
Y
2 0
0 5
he father of a young boy
called the UPS for DownS’
office last week looking for
ways to get connected to other boys with Ds who are the same age as his son. Our conversation led to a discussion of the challenges of meaningful friendships for our children with Down syndrome. It seems in the current
wave of educational inclusion, our kids often get some kind of “exclusion.” Most of the time, a child with
Down syndrome is the only child in his or her class or - as in my daughter’s case - the only person in the
school, who has Down syndrome.
T
Friendships have long been on my list of concerns for my daughter. I
remember my joy the first time Lindsey received an invitation to a
birthday party for one of her “typical” peers. She’s has
been invited to dozens of parties since, however, now
that she is in fourth grade, the invitations are fewer, and
the phone calls for play dates with school friends have
become almost nonexistent.
Lindsey is an active girl, involved in the usual activities of fourth grade
life. She is in Girl Scouts, religious education, piano lessons, and
Special Olympics gymnastics. She sees her friends regularly at these
activities and at school. She always has someone to eat and play with
during lunch and recess. Her school friends are protective, helpful, and
friendly. She really has good friendships at school. But
the phone doesn’t ring any more. I don’t think Lindsey
has noticed that the phone calls or invitations have slowed,
but I have and it saddens my heart.
Date changes:
Special Needs Estate Planning:
Varnet to speak April 26.
State Director of Special Education
presenting on March 22!
Note from the Chair . . . . . . . . . . . . . . . . . .1
Upcoming Events . . . . . . . . . . . . . . . . . . . .2
Februar y Meeting Topic . . . . . . . . . . . . .2
Map to The Playhouse . . . . . . . . . . . . . . .2
January Meeting Recap . . . . . . . . . . . . .3
Looking Ahead . . . . . . . . . . . . . . . . . . . . . . .3
This is why I am extremely grateful to those parents in UPS for DownS
ProKids Show . . . . . . . . . . . . . . . . . . . . . . . .4
who started our social groups such as the Kids Club, PreTeen Scene,
and Teen Scene. These UPS for DownS’ groups, along with other
Teen Scene Schedule . . . . . . . . . . . . . . .4
activities offered at GiGi’s Playhouse, provide fun opportunities for
Coffee and Playgroup . . . . . . . . . . . . . . . .4
kids with Down syndrome to develop and forge friendships with their
UPS for DownS joins The Arc . . . . . . . .5
peers. I know Lindsey loves getting together with the friends that she
has met at UPS for DownS and considers them some of her closest
The Playhouse Page . . . . . . . . . . . . . . . . .6
friends.
NADS Bowl*A*Thon . . . . . . . . . . . . . . . . . . .6
Jeremiah’s Backyard . . . . . . . . . . . . . . . . .7
If you are looking for fun, friendships, and social opportunities for
your child with Down syndrome, consider coming out to one of the
Kids’ Club . . . . . . . . . . . . . . . . . . . . . . . . . . . .8
many activities hosted by UPS for DownS. Every month the Kids
Toilet-Training Workshop . . . . . . . . . . .8
Club, PreTeen Scene, and Teen Scene post their activities, look inside
this newsletter for specific details. Or call Sandy Pazerunas if you have Scotch Doubles Bowling . . . . . . . . . . .10
another idea or opportunity to promote fun and friendships for people
Steering Committee . . . . . . . . . . . . . . . .10
with Down syndrome.
PreTeenScene . . . . . . . . . . . . . . . . . . . . . . .11
Reflections on “UP” . . . . . . . .back page
Co-Chair
Sandy Pazerunas
UPS
TUESDAY
February 22 2005
7:30 p.m.
M e e t i n g To p i c
U nd ers t an di ng D u al Dia gnosi s
February 19 2005
Kids’ Club - “Where the Wild Things Are”
Thursday, February 24 2005
Bowling Planning Meeting
February 26 2005
New Parent Coffee/Playgroup
February 27 2005
ProKids Family Show
March 9 2005
Kids’ Club Shamrock Festival
March 12 2005
TeenScene Hip Hop
March 13 2005
PreTeenScene Medieval Times
March 22 2005
UPS for DownS meeting - ISBE Special Education
April 9 2005
TeenScene - Spring Craft
April 16 2005
Kids’ Club - activity TBA
for
Do wn S
Most of us have never done this before, this raising a kid with
Down syndrome business. What is “normal” anyway? Should we
ever be concerned about something more than Down syndrome...?
Attention Deficit Disorder? Autism? Sensory Integration
Disorder? Depression? Share in a discussion of what might be
quirky about your kid - does it rise to the level of something else?
Join us for a stimulating evening as we listen to Dr. Nancy Keck
address the topic of Dual Diagnosis. Nancy Keck, M.D. is a
developmental pediatrician currently in private practice in
Glenview. She is also involved in Early Intervention in Rockford,
Illinois and on staff at the Children's Research Triangle in
Chicago. Dr. Keck began Camp SOAR, a summer camp for children with disabilities, and is entering her fifth season as Camp
Coordinator. For many years, Dr. Keck was the director of the
Developmental Pediatric Clinics at Lutheran General Children's
Hospital and has extensive practical experience in working with
children with special needs.
When: Tuesday, February 22, 2005
Where: GiGi’s Playhouse/UPS for DownS
1069 W. Golf Road; Hoffman Estates
Time:
7:30 p.m.
As always, you are welcome to bring others who might be interested in this topic to the meeting. Very limited child care is available. If you need child care, you MUST RSVP to Melinda at
MommyHasSpoken@aol.com or 847-466-9953 before Monday,
February 21st.
April 24 2005
PreTeenScene
April 26 2005
UPS for DownS mtg - Special Needs Estate Planning
x
April 30 2005
Toilet Training Workshop - Alice Belgrade
May 24 2005
Grandparent Meeting - Diane Gould
June 4 2005
Scotch Doubles Bowling
August 6 2005
Sibshop and Family Swim Party
Items in BOLD face print are
organized by UPS for DownS.
Other dates and items are informational only.
Changes or additions to the distribution list for the
newsletter should be sent to:
UPS for DownS
Attention Pat Fogarty
1069 W. Golf Road
Hoffman Estates, IL 60194
Phone: 847-885-6216
E-mail: MailingList@upsfordowns.org
Please Note: UPS for DownS is a volunteer group consisting
of parents, rat her th an educat iona l, medical, or legal professionals. The UPS for Dow nS newsletter is similarly written
on a voluntee r, non-prof essional basis. Informat ion pr esen ted in the newsletter should not be constr ued to be objective
or def initive, but represents th e opinions a nd un de rstandings
of th e con tributors.
We are n ot respon sible for reliance
made on a ny information in this newsletter. We wish to
bring together those in terest ed in Down syndrome as we
cr eat e and foster an op timistic outlook and attitude about
Down syndrome for our families an d our communities.
2
January Meeting Recap
GET YOURSELF A STEAMCLEANER.
IT’S TIME TO DITCH THE SIPPY CUP!
Communication Development in the Young Child with Down Syndrome
Lora White, M.A., CCC-SLP
syndrome, compared to other children with similar
developmental delays:
T
here are many sensory, cognitive and perceptual concerns that impact the communication
development of children with Down syndrome. White listed several factors in handouts,
cautioning that each child is unique and has his or
her own strengths and challenges.
a. sequencing deficits impact grammar development;
b. slower lexical processing and delays in auditory
processing;
c. expressive language skills lag behind receptive
skills from 24 months of age;
d. poor visual attending;
e. vocabulary development is often a strength
because it is experience driven;
f. pragmatic language (social use of language) is a
frequent strength;
g. strong visual learners - important to teach to
child’s strength;
h. advances in language skills do not necessarily
keep pace with increasing cognitive skills.
Audiological Concerns: Hearing is the primary
learning modality for speech. Audiological concerns
resulting in fluctuating, conductive hearing loss
occur in 75% of young children with Down syndrome. These audiological concerns necessitate
increased vigilance and need for frequent audiological assessments.
Hypotonicity: Low muscle tone adversely affects
respiration, phonation and articulation,
creating difficulty in coordinating the
precise and rapid oral motor move“Speech is the
ments needed for intelligible speech.
highest level,
If someone has low muscle tone, they
most precise
will always have low tone, but
fine motor activity
strength and endurance can be
that the body
increased.
Unique to Down syndrome: Language
learning issues which appear to be
more common in children with Down
L ook ing
Environment: Exposure to experiences
increases language quality and frequency of use. Provide opportunities for
child to be successful in communication.
Often, children’s needs are met with no
need for them to communicate. Set up
must accomplish.” home so child must communicate to get
needs met - even if you and family
Lora White members know what they want - make
the child communicate it. cont. on p. 9
A hea d :
Illinois State Board of EducatioN
March 22 2005
Christopher Koch, director of special education for the Illinois State Board of
Education, will speak about special education in Illinois, opportunities for
parental involvement and problem solving strategies. Bring your questions.
Special Needs Estate Planning
April 26 2005
Terri Varnet, J.D. - parent, attorney, certified teacher, licensed social worker
and nationally known leader in legal and future care planning for people with
developmental disabilities
Grandparent Meeting
MAY 24 2005
Diane Gould will facilitate a special meeting for grandparents and “surrogate”
grandparents. This meeting will provide a forum for them to share their joys,
concerns and insights about loving someone with Down syndrome.
3
ProKids Family Show
The ProKids Show
entertains
children
of all ages
while delivering
important
messages about personal
responsibility, respect for
others and the importance
of self-esteem.
Tim Hannig’s show contains a
unique blend of comedy,
music, magic, puppetry, and
audience participation.
Kids have this show in high
demand across the midwest.
If you or your kids have seen
a ProKids show before, you
know that it is a “DON’T
MISS” event for
the entire family!
ALL AGES ARE
SURE
TO ENJOY THE SHOW !
COFFEE AND
PLAYGROUP
Are you new to United Parent Support
for Down Syndrome? Are you new to
the area? Do you just feel like getting
together informally with other parents
of kids with Ds? If the answer to
any of those questions is yes, please
join UPS for DownS for our monthly
coffee and playgroup.
When:
Time:
Location:
Saturday, February 26
10 a.m. to noon
GiGi’s Playhouse
1069 W. Golf Road
Hoffman Estates
For questions about the
coffee and playgroup this
month, contact Melinda
Zambito at
MommyHasSpoken@aol.com
or 847-466-9953
Winter/Spring
Teen Scene Schedule
February 12 – Valentine Dance
February 26 – Food Night
March 12 - Hip Hop Fitness Night
March 26 – NO TEEN SCENE
April 9 – Spring Craft
As always, we are open to any ideas for
future Teen Scene activities!
RSVP for events to
pfogarty@wowway.com or call Peggy
Grunewald at 847-359-3394.
Date: Sunday, February 27th
Time: 12:45 p.m. - 2 p.m.
Teen Scene is for teens with
Down syndrome ages 12 to 18.
Teens pay $5 for each event;
UPS for DownS pays for the rest!
Location: Alexian Brothers
Conference Center
800 Biesterfield Rd.
Elk Grove Village
Activities are subject to change.
Volunteers are welcomed
and appreciated.
4
of Illinois
UNITED PARENT SUPPORT FOR DOWN SYNDROME
IS JOINING THE ARC OF ILLINOIS!
As a Parent Support Group member of The Arc of Illinois, UPS for DownS is joining a well-established organization, the clear leader in legislative and
community advocacy for people with developmental disabilities in Illinois.
The Arc of Illinois is committed to empowering persons with disabilities to
achieve full participation in community life through informed choices.
What does this mean for you?!
Part of our commitment is to have at least ten individual members join The Arc of Illinois at
the cost of $8.00 per member for annual dues. THIS IS A REAL SAVINGS.
The usual fee for individuals to join The Arc on their own is $25.00!
As part of your membership, you will receive:
•regular e-mail legislative and issue updates from the Arc of Illinois
•membership in The Arc of the United States
•reduced rates for members at Arc trainings/workshops
•a strong voice in Springfield and Washington, DC
•knowledge that you are supporting the efforts of an organization that can make
changes for the better for people with developmental disabilities in Illinois
For more information, www.thearcofil.org
Yes! I want to join The Arc of Illinois. My check in the amount of $8.00 is enclosed.
Name: _______________________________
_____________________________________
Address:____________________________________________________________________
City/State/Zip:________________________________________________________________
E-mail:____________________________________ Phone:____________________________
Thank you for helping UPS for DownS in our support of The Arc of Illinois,
Illinois’ largest statewide advocacy organization for people with developmental disabilities.
Complete and send this form with your $8 dues
(checks should be made payable to The Arc of Illinois) to:
UPS for DownS; c/o Terri Devine; 14003 Blackhawk Lane; Orland Park, IL 60462-1839
Questions? Call Terri at 708-349-9669 or e-mail Info@upsfordowns.org
5
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
Don't forget the Calling all Greasers, Pink ladies, Letterman and poomonthly birthdle skirt lovers!! This party is for you!
day parties the
February 18th 7-9 ADULT SOCK HOP!!
first Saturday of The Frida y friends gang is ready to party and they
every month
want you to come part y with them!! Ages 18 and up
from 10-12!
Please RSVP so we ha ve enough food and drinks.
Even if it is not
your birthday month come for the cake, fun and goodie bags!! If it
is your birthday month you get a present and everybody sings to
you!!
The 2 and under playgroup meets the 2nd Saturday of the month at
10 and they are looking for some new friends!! Come join them!
Don't forget about Sundays!! The 2nd Sunday is the Hispanic play
group from 11-1 and the 4th Sunday is the Polish play group from
1-3!!
March 19th 1-3 Pictures with the Easter bunny and
the egg hunt! Talk about fun!! This is event is
great for all ages and our friendly bunny knows
what she is doing! RSVP required space is limited.
"GiGi's Playhouse too" is opening in the
Naperville/Plainfield area April 23rd! If you
are interested in helping out or maybe helping them fill their wish list call 630-778-PLAY
Please save the date and plan on attending
this ground breaking event!!!
R em e mbe r , G iG i 's P la yh o us e i s yo u r p la y ho u s e , t o o !
There is no charge to host a Down syndrome-related event. Call 847-885-PLAY to schedule.
N A T I O N A L A S S O C I A T I O N F O R D O W N S Y N D R O M E’ S B O W L * A * T H O N
Sunday, March 6th
Registration 11:00 a.m.
Bowling Begins at 12 noon
Stardust Bowl
37 E. Lorraine Avenue
Addison, Illinois
Contact NADS at 630-325-9112
or info@nads.org
to obtain registration
materials and start
collecting pledges
6
Jeremiah’s Backyard
Jeremiah’s Backyard will be Chicago’s urban
playhouse version, open to all families of
children with special needs. Carol Hill,
inspired by the excitement and interest generated by GiGi’s Playhouse, has partnered
with Chicago Arc and Chicago Park District
to create a customizable program for
neighborhoods in Chicago. Other
organizations that have offered support
include Lekotek, the Fifth Dimension,
and the Mayor’s Office for People with
Disabilities.
Jeremiah’s Backyard will provide a place
for parents to network and for children
with special needs to play and develop
friendships. Jeremiah’s Backyard is
intended to re-create a neighborhood environment similar to that
of days gone by, when going outside to play was a feasible and
safe option for children in urban
neighborhoods.
Jeremiah’s Backyard will address this critical
need with neighborhood-based locations
which may offer things such as:
• Center to experiment with and develop
training for the latest assistive technology;
• Computer center to provide
internet access resources to
underserved families;
• Networking and advocacy
forum for families;
• Safe indoor and outdoor therapeutic play areas for physical
exertion;
• Training ground for child
development educators and
therapists;
• Center-based option for Early
Intervention therapies;
• Entrepreneurial opportunities
to service families (e.g. technology, coffee house, legal consulting,
social services, etc…)
There is a critical need to bring the
In its initial stages, Jeremiah’s Backyard
neighborhood environment back
will create a community center as a
to our communities. Children need Carol and Jeremiah model for best practices for people with
to get out from behind their televidisabilities. After its initial implementasions and computers to play with other chil- tion (targeted for early Spring, 2005),
dren; parents need to network with other
Jeremiah’s Backyard will be replicated and
parents; student teachers need an opportuni- evaluated at select sites throughout the city.
ty to experiment with new ways of teaching Each implementation will be carefully evalchildren with special needs.
uated to create a comprehensive model for
replication in other urban communities. The
In the 21st century, communities are largely mission of Jeremiah’s Backyard addresses
defined by common threads, common needs, many critical issues: special education pracand common issues. The common threads of tice and advocacy, child obesity, character
the Jeremiah’s Backyard community are the
education, friendships, parental involvement,
social, spiritual, educational, and economic
and inclusion in the community.
experiences of living with a person who has
a disability.
For more information or to provide comments or ideas,
contact Carol via e-mail: chill196 0@comcast.net
7
F EBRUARY KIDS’ CLUB
IS GOING
"WILD"
AT THE THEATRE!
Where the Wild Things Are and Other Bedtime Adventures
The Metropolis
111 West Campbell Street
Arlington Heights, IL 60005
RSVP deadline has passed. Those who have reserved a spot, be at the theatre at 10:45.
The show begins at 11:00 a.m. on Saturday, February 19, 2005
K ID ’S CL U B I S GO IN G T O GET A B IT O’ T HE B L A RN EY
WITH A S HA MR OC K FES TIV A L!!
Date:
March 19, 2005
Time:
1:30-3:00 p.m.
Location: GiGi's Playhouse
Kid's Club is looking for a volunteer to lead the fun in April!
All ideas are welcome.
Date:
April 16, 2005
Time:
1:30 - 3:00
Location:
GiGi's Playhouse
Contact Shari Andress for more information. 847-891-6678 skandress@aol.com
Barney was a BLAST in January!
Lots of families came to dance and play.
K IDS’ CLUB IS DESIGNED FOR PRESCHOOLERS AND EARLY ELEMENTARY AGE
CHILDREN WITH DOWN SYNDROME AND THEIR SIBLINGS!
UPS for DownS is heading to the toilet!
Don’ t get c aught with your pants down!
Join us for a presentation on toilet-training with
our favorite behavior expert, A li ce Bel gr ad e.
Date:
Saturday, April 30, 2005
Time:
9 a.m. - No on
Location: Alexian Brothe rs Medical Center
Elk Grove Village, Illinois
Further information and registration form will be available soon!
8
MEETING RECAP cont. from p. 3
Sensory Integration Dysfunction - the ability to organize input received from the various senses and
apply that information to everyday life. The child
may have difficulty processing more than one sense
at a time or difficulty interpreting what sensory input is the most important.
Oral Motor/Feeding Delays
a. There are parallels between the
movements and coordination that
develop in feeding and those that
emerge in speech development.
Tongue thrust due to sippy cup use may
cause immature motor movements causing inefficient swallow. The child has an
immature swallow in the use of sippy cups
and is actually suckling, not swallowing. A child
cannot get a mature swallow with tongue under the
spout of sippy cup or under the rim of open cup.
b. It is important to consult with a licensed
speech/language pathologist with training in oral
motor/feeding development. There is a normal
developmental pattern for eating and drinking.
Specific oral motor techniques can be used during
feeding to improve oral motor development.
STRATEGIES AND HOME ACTIVITIES TO
ENHANCE LANGUAGE/COMMUNICATION
Respond to a young child’s communicative attempts and build on
it.
Describe, label, comment on
activities around you.
Use simple language, two or three
word phrases. The child’s processing system may be slower.
As the child reaches the one word level (signing, picture boards or speech), use expansion and modeling
to increase the level of language development. The
child says “milk” and the caregiver says “more milk”
or the child says “Daddy car” and Dad responds
“Daddy’s blue car.” Modeling is an important tool in
a young child’s language development. But don’t
constantly question the child or ask them to
repeat what you’ve said. You’ll end up
in a power struggle that you cannot win!
Work to establish “communicative
intent.” This is the realization by the
young child that his/her communication
(verbal or nonverbal) gets his or her
wants or needs met.
Work to establish imitation skills - gross
motor such as stomping feet or clapping hands, then
nonspeech sounds such an animal sounds, and then
speech sounds /m/, /b/, /p/.
Speak slowly, don’t overload the young child with
too much language. He will become disinterested or
begin to feel it requires too much work to engage in
communication with you.
Wait for a response from a child. Pause after you
initiate communication with your child. Too often,
we fill the space with our works and do not give the
child the time he/she needs to vocalize, babble, sign,
etc. Parents - we overtalk!
AUGMENTATIVE, MULTIMODAL AND TOTAL COMMUNICATION DEVELOPMENT
Parents are often frightened that if
they use sign, picture boards, etc.,
that their child will never speak.
Research has shown that the opposite
is true. Augmentative forms of communication actually jump start
speech and language development in
young children. Always use the spoLora White ken word with the sign or picture.
Total communication is usually a
temporary and transitional system. Be patient with
yourself in learning to use alternative/augmentative
communication. It is not the normal way to communicate and requires more thought, time and effort, but
the rewards are worth it.
If your speech language
pathologist doesn’t
understand or know
about oral motor
and feeding issues,
they are not the SLP
to be treating a child
with Down syndrome.
Play routine games like Peek-ABoo so the child will learn turntaking, an important foundation for conversational
skills.
If there is a place where the child is more responsive
(attentive/vocal/verbal), increase the time the child is
in that environment - bath time, riding in the car, listening to a favorite tape). Respond to the communication to encourage turn taking in the child’s
communicative exchange with you.
Lora White, M.A., CCC-SLP
Pediatric Speech/Language Pathologist
Long Grove, Illinois
847-215-0270
9
Hey, when’s that bowling thing?
It was so much fun...my neighbors are still talking about it.
LOOKING FOR A SOME FUN THAT WILL ALSO SUPPORT A GREAT CAUSE? LOOK NO FURTHER .
UPS FOR DOWNS’ 21ST ANNUAL SCOTCH DOUBLES BOWLING IS COMING SOON!
Mark your calendars for
S ATURDAY, JUNE 4 TH
The fun begins at 5:00 p.m. and will last until 9:00 p.m.
Start looking for a babysitter now and gather your
friends, family and neighbors for an evening sure to please.
You won't be disappointed. Raffles will also accompany the fun.
We would love to have you join us as we work on this event.
Our first planning meeting will be on Thursday, February 24th at GiGi's Playhouse at 7:00 p.m.
This is a great way to get involved and meet new people. Please RSVP to Stacy or Diane.
If you know of someone who would like to donate a gift, time-share, service or
anything else for our bowling raffle, contact Stacy Graves.
F o r m o r e i n fo r m at i o n , e -m a i l u s a t B o w l i n g @ u p s f o r d o w n s . o r g
o r call D ia ne Pa ra dise a t 6 3 0 -4 8 3 -8 1 1 3 or St a c y G rave s a t 8 4 7 - 6 0 8 -9 7 8 1
POSITION
NAME
PHONE
E-MAIL
Co-Chairs . . . . . . . . . . . . . . . .Sandy Pazerunas . . . . . . .847-705-0715 . . . . . . . .CoChair@upsfordowns.org
Mike Reninger . . . . . . . . .847-301-0702 . . . . . . . .CoChair@upsfordowns.org
Program Co-Coordinators . . .Kim Orlando . . . . . . . . . .630-483-6903 . . . .Programming@upsfordowns.org
Anne Cardascio . . . . . . . .847-520-0623 . . . .Programming@upsfordowns.org
Treasurer . . . . . . . . . . . . . . . .Lisa Reninger . . . . . . . . .847-301-0702 . . . . . . . . . . . .ReningeL@alexian.net
New Parent Coordinator . . . .Allison & Luis Vargas . . .847-342-0041 . . . . . . .AllisonVargas@hotmail.com
Special Events Coordinator . .Melinda Zambito . . . . . . .847-466-9953 . . .SpecialEvents@upsfordowns.org
Bowling Event Coordinators: Diane Paradise . . . . . . . . .630-483-8113 . . . . . . . .Bowling@upsfordowns.org
Stacy Graves . . . . . . . . . .847-608-9781 . . . . . . . .Bowling@upsfordowns.org
Dinner Dance Coordinator . . .Stephanie Neri . . . . . . . . .847-891-3224 . . . . . . .FallEvent@upsfordowns.org
Teen Club Coordinators . . . . .Peggy Grunewald . . . . . .847-359-3394 . . . . . .TeenScene@upsfordowns.org
Pat Fogarty . . . . . . . . . . .630-893-6740 . . . . . .TeenScene@upsfordowns.org
PreTeen Club Coordinator . . .Lori Boldt . . . . . . . . . . . .847-818-1717 . . . . . . . . . . .loriboldt@hotmail.com
Kids’ Club Coordinator . . . . .Shari Andress . . . . . . . . . .847-891-6678 . . . . . . . . . . . . . .skandress@aol.com
GiGi’s Playhouse liaison . . . .Nancy Gianni . . . . . . . . . .847-885-7529 . . . . . . . . . . . . .gianni4567@aol.com
Newsletter Printing . . . . . . . .Mike Grunewald . . . . . . .847-359-3394 . . . . . . . . . .peggy@frankcooney.com
Webgroup Moderator . . . . . . .Terri Devine . . . . . . . . . . .708-349-9669 . . . . . . . . . .devineford@comcast.net
Video/Resource Librarian . . .Kim Kowalczyk . . . . . . . .630-893-7391 . . . . . . . . . .k2kowalczyk@msn.com
Annie Quiroz . . . . . . . . . .847-985-0579 . . . . . . . . . . . . . . . .Jamz710@cs.com
Hospitality/Refreshments . . . .Joanne Stark . . . . . . . . . .847-879-6070 . . . . .Joanne.Stark@labeldollars.com
Newsletter Editor . . . . . . . . . .Terri Devine . . . . . . . . . . .708-349-9669 . . . . . .Newsletter@upsfordowns.org
Mailing List Information . . . .Pat Fogarty . . . . . . . . . . .630-291-6740 . . . . .MailingList@upsfordowns.org
Webmaster . . . . . . . . . . . . . . .Lori Boldt . . . . . . . . . . . .847-818-1714 . . . . . . . . . . .loriboldt@hotmail.com
Katie MacDonald Literacy . . .Shari Andress . . . . . . . . . .847-891-6678 . . . . . . . . . . . . . .skandress@aol.com
10
PreTeenScene
M
O
D ate:
Time:
M ovie:
L o c at ion:
V
I
E
N
I
G
H
S u n d ay, F ebruary 13 th
l ate af ternoon (around 4 :00)
R acing Stripes
L o ews S treets of Woodf iel d Movie Th eat e r
T
!
UPS for DownS wi ll rei mburse you for t he cost of the movi e ticket for each PreteenScene particip ant . S nacks and admi ssion
for other sibl ings or fam ily m embers are the responsi bi lity of
the fam ily. T hese out ings a re great opportuni ties for our k id s
t o practice wh at they’ve learn ed. E xpect t hem to buy the p o pc orn on t heir ow n .
S u n d ay, March 13 t h
S u n d ay, Ap ril 24t h
S u n d ay, May 22nd
S u n d ay, June 26th
M e d i eval Ti mes (see below for det ai ls)
Ac t ivity to be determined
Ac t ivity t o be determ ined
" Where t he Wi ld Things Are"
A rl ingt on Heig hts Metro poli s Theat e r
P reteenS cene is for 8-12 year olds (3 rd graders through 6th graders) with Dow n
s y n d rome and thei r sibl ing s who are also in that age group. E vent s i n t he comm unit y require a parent/adult chap e rone to remain with the grou p. We ask that ,
when po s s i bl e, a lternate arrange ments be made for yo u n ger chi ldren to allow
for better fac i l i t at ion for the Pret een’s ac t iv i t i e s .
UPS for DownS presents a PreTeenScene Knight to Remember!
If your kids are picky
about eating with their
hands or need straws,
bring your own utensils!
Sunday, March 13, 2005
Show begins at 4 p.m.
Plan to arrive at 3:30 p.m.
2001 N. Roselle Road, Schaumburg, IL 60195
J OUSTING, K NIGHTS, P RINCESSES, H ORSES, A RMOR AND AN A MAZING FEAST!
If you’ve ever been to this event or looked into it, you know that it can break the family budget in a
hurry. PreTeenScene is excited to offer this opportunity for our participants
(ages 8-12/3rd-6th grade) and their chaperones to attend for only $15 each!
UPS for DownS will pay the remainder of the cost of admission.
Souvenirs or extras will be your responsibility. Others are welcome to come at the group rate of $35.
Name of PreTeenScener(s)
Age/Grade
Other Family Members:
___________________________ _________ $15
_________________________________ $35
___________________________ _________ $15
_________________________________ $35
Chaperone____________________________ $15
_________________________________ $35
PreTeenScene rate: ____ x $15 = $________(A)
Group Rate:
____ x $35 = $ ________(B)
TOTAL ENCLOSED: (A)$_______ + (B)$_______ = $___________
Checks should be made payable to UPS for DownS. Money and RSVP form must be RECEIVED no
later than Friday, March 4th. RSVP to Stephanie Neri at 312 Stock Port Lane, Schaumburg, IL
60193. For more information, contact Stephanie at 847-891-3224 or jneri@wideopenwest.com
Reflections on the word “UP”
The w ord UP perhaps has m ore meanings than any other two -letter w ord.
It's e asy to under stand that UP m eans toward the sky or at the top of the list.
But when we arise in the mor ning, we also wake UP.
At a meeting, topics come UP.
We spea k UP for ourselves.
We cal l UP our frie nds.
Politicians are UP f or e lection.
We brighten UP a room, polish UP the silver, wa rm UP the leftovers and c lean UP the kitchen.
Pe ople stir UP trouble , line UP for tic kets , work UP an appetite, and think UP excuses.
UP can be confusing:
A dr ain must be opened UP because it is stopped UP.
We open UP a stor e in the mor ning, but clo se it UP at night.
When our chil dren are bo rn, they open UP our hearts.
As we pass through a life that includes dis abil ity, our res olve can dry UP.
Ther e is also the use of UP a s an abbreviatio n,
as in UPS for DownS where UP stands for United Par ents.
It is UP to us to change the world, one person , one c ommunity at a time.
It is UP to us to op en UP the m inds of o the rs.
U nite d Parent Support for Do wn Syndrom e,
where we stand UP for others until they are empowered to stand UP fo r themselves.
UPS
N
FOR
D OWNS
EWSLETTER M AILING LIST
C/O PAT FOGARTY
1069 W. GOLF ROAD
HOFFMAN ESTATES, IL 60194