November, 2012 - UPS for DownS

November 2012
In this Issue Note from the Chair
Note from the Chair ............1
Next Meeting .......................1
Baroody is on duty ..............3
Chicago Marathon .............4
The Denna Difference ........5
Ready. Set. Action!..............6
Holiday Party .................insert
Coffee & Playgroup ............7
PNO: Pheasant Run .............7
Escape! .................................8
Winter Swim Party/Sibshop .9
Fiddler on the Roof ............. 9
Commitment to Excellence ..10
I voted! ................................11
Adult Social Club ...............11
Contact List ........................11
Profile ..................back page
Oh, what a month! October was
one month filled with so many
amazing things! To start off the
month, we celebrated National
Down Syndrome Awareness
month. It is a great time to help
spread awareness of that extra
chromosome that we can’t live
without! We
spread the
awareness by dropping off books
that UPS for DownS donated to
Mady’s pediatrician, her home
school, and her future preschool.
At the pasta dinner on October
5, we presented Ashley Jones
with a $2500 scholarship. Then,
UPS for DownS participated in
the Chicago Marathon! We had
OPEN MEETING
Join us for an informal discussion covering the issues
and questions that are important to you and your family.
Light refreshments will be served.
Thursday, November 15, 2012 at 7 p.m.
Schaumburg Township Board Room
One Illinois Boulevard, Hoffman Estates
Cheering on our athletes at
Charity Block Party. Just
about the most fun you can
have at 8 a.m. on a Sunday!
Free on-site child care is available, but space is limited.!
YOU MUST REGISTER FOR CHILD CARE.!
http://ufdnovember2012.eventbrite.com/
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Sunday, November 11, 2012
Holiday Party RSVP deadline!
Thursday, November 15, 2012
Monthly Meeting: Orthopedics
Saturday, November 17, 2012
Adult Social Club - Movie Night
Saturday, November 24, 2012
Teen Scene - Movie Night
Friday, December 7, 2012
Parent Coffee & Playgroup
Sunday, December 9, 2012
Holiday Party
ufdholidayparty.eventbrite.com
Saturday, January 5, 2013
Sibshop & Winter Swim Party
Friday, January 11, 2013
Parent Coffee & Playgroup
so many volunteers there to
cheer on our team.
On October 12th, UPS for
DownS held its 10th Annual
Dinner Dance Fundraiser. We
ate some amazing food and
danced the night away to
music from the Chicago Cats!
We had some of the best raffle
and silent auction items ever
donated. The Cotillion was filled with
many familiar faces, but we were so excited that we got
to meet a lot of first time guests and parents as well! Zane
Herr was our keynote speaker for the evening, and “WOW! !
What an amazing job he did!” Zane got up in front of 400
people and talked about his life and how UPS for DownS
has been a big part of it! We couldn’t
be prouder of him!!
All of these wonderful events
make me reflect on all of the
great things that our kids can
do! It makes me proud to
know so many of these great
individuals with Down
syndrome.
Thursday, January 24, 2013
Monthly Meeting: Sleep Issues
Saturday, January 26, 2013
Parent Night Out - Pheasant Run
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2 - NOVEMBER 2012
UPS for DownS is organized
and operated entirely by
volunteers. This newsletter is
similarly written on a
volunteer, non-professional
basis. Information presented
here should not be construed
to be objective or definitive,
but represents the opinions
and understandings of the
contributors. We are not
responsible for reliance made
on any information in this
newsletter. We strive to bring
together those interested in
Down syndrome and to
create an optimistic outlook
and attitude about Down
syndrome for our families and
others.
Dr. Baroody on duty.
On Thursday, October 25th, Dr. Fuad
Baroody, Director of Pediatric
Otolaryngology, gave a presentation on
nose issues, rhino sinusitis, and sleep apnea ,
in relation to kids with Down Syndrome. Rhino
sinusitis is an inflammation or infection of the
sinuses. Dr. Baroody referred to it as a benign
disease, but it directly affects the quality of
life. Symptoms include nasal blockage, nasal
discharge, sometimes fever, and a cough,
which is a definite sign of a sinus infection.
The post nasal drip leaks into the back of the
throat and causes the child to have a raspy
cough during the night, causing a loss of
sleep s well. In general, children get 6-8 colds
per year. Most resolve themselves
spontaneously, within 1-7 days. It is important
not to treat with antibiotics at this stage, as
the drugs will not be effective in treating a
cold, which originates from a virus. Tylenol or
Motrin and a salt water wash would be
appropriate treatment. If your child can
tolerate a Neti pot, Dr. Baroody suggested its
use. However, he cautioned about cleaning
the item thoroughly, as improper cleaning
can cause a re-infection, as the bacteria
may still be in the pot. If your child seems to
recovering but has a relapse of symptoms at
day 5-6, this may indicate that it is not a cold,
but indeed a secondary infection of the
sinuses, and antibiotics should be prescribed.
If your child also has asthma, this can
exacerbate the sinus issues. There are three
areas of sinus in the skull: the maxillary, near
the cheeks; the frontal, near the forehead;
and the ethmoid, which separates the eyes
from the nose. The sinuses drain into the nose
through a channel called the middle meatus.
It is when we produce too much mucus and
the sinuses become filled that the nasal
blockage occurs. The job of the sinus is
believed to be that of a filter to help keep
foreign debris out of our lungs. The average
adult produces about a liter of mucus a day,
so the body is familiar with its production.
When we encounter a virus or bacteria, the
mucus production
goes into
"overdrive" and the
sinuses become
filled. Down
Syndrome children
can seem to have
more runny noses
than normal
because the facial
structure is flatter,
the sinuses can be
affected, and they
can become filled
much more quickly.
Fuad Baroody, M.D.
Director of Pediatric
Otolaryngology, University
of Chicago Comer
Children’s Hospital
Structures that help
the sinuses are the
adenoids, which
are spongy tissue that sit behind the nasal
cavity and above the roof of the mouth. The
adenoids filter the germs and bacteria that
we breathe. They contain cells that produce
antibodies that fight infection in our bodies.
They are helpful to use, particularly when we
are young, and they shrink with age.
Because they can become enlarged with
repeated infections. This can sometimes
travel to the tonsils. The swollen adenoids
and tonsils cause the trouble with breathing,
sore throats, ear problems, swollen glands
and snoring. Otolaryngologists rate the size
of adenoids and tonsils on a scale of 1-4. The
higher the number, the larger the adenoid or
tonsil. If the condition is chronic, and the
child is experiencing discomfort, removal
through surgery may be the best option to
bring relief. Dr. Baroody did suggest that if
the tonsils are swollen, an ENT (Ear, Nose and
Throat) doctor could also check the
adenoids, but this would require a scope
through the nose. While an adenoidectomy
or tonsillectomy may not bring 100 percent
relief, if is often the best way treat the chronic
nasal infections. Dr. Baroody did stress that
selecting the option of surgery is a family
decision, and the procedure is relatively
NOVEMBER 2012 - 3
UPS for DownS RUNS CHICAGO!
Over one hundred people gathered to carbo-load
and encourage our team of 55 Charity Athletes from
around the world as they prepared for the 2012
Chicago Marathon. Many of these individuals also
joined us at Charity Block Party where over 100
spectators ate breakfast and cheered the runners.
Receiving the Founders Award from Jim Uggla and
Nancy MacDonald Uggla were Pat and John Fogarty.
Pat and John work hard behind the scenes, expecting
no ackowledgement or kudos. We are all honored to
know them and pleased that they received this honor.
Congratulations!
uncomplicated, but the family should be
aware of any heart issues or cervical spine
issues regarding their child and updated
information concerning these items would need
to be shared with the surgeon.
obesity. Snoring may be the only indication a
parent may have to suspect sleep apnea, but,
again, because the child does not have severe
snoring, it does not mean that he or she does
not have sleep apnea, only a sleep study will
determine whether a person has sleep apnea.
In addition to nasal infections, Down Syndrome Dr. Baroody suggested that parents have their
youngsters and teens can suffer from sleep
child participate in a sleep study, if sleep apnea
apnea. Sleep apnea is usually identified by
is suspected . Select a pediatric sleep specialist
snoring, when the air cannot move smoothly
who can test your child. The probes will allow
through the nose, mouth or throat. The amount the specialist to monitor your child during
of snoring and the loudness of the snoring do
sufficient REM sleep and gather information to
not always correlate to the level of sleep
suggest a course of treatment. Again, removal
apnea, as the condition may be quite severe
of the adenoids or tonsils may be the solution.
for the quiet snorer. With sleep apnea, the
The removal of adenoids and tonsils may not
person often stops breathing momentarily, and completely eliminate to problem, but it will
awakens briefly from sleep to gasp air. This
generally offer immediate relief of a restful sleep
leads to unrestful sleep. A person does not
to the person. Prolonged sleep apnea can
usually recognize that he or she has sleep
eventually lead to cardiovascular problems
apnea, and the person needs to notice the
such as heart palpitations and heart failure. It
symptoms of drowsiness during the day and dry can also lead to reduce amounts of oxygen
mouth or a sore throat. In children, behavior
reaching the bloodstream, which can lead to
problems can arise in school due to being over compromised brain function. Should you have
tired. Sleep apnea is more prevalent in persons questions concerning rhino sinusitis or sleep
with Down Syndrome because of the smaller,
apnea, you may contact Dr. Baroody at The
flatter mid-face region, narrower airways,
University of Chicago Comer Children's Hospital,
generalized hypotonia, and predisposition for
1-888-824-0200.
4 - NOVEMBER 2012
THE DENNA DIFFERENCE: One school (but many students) at a time
For the past three years, math teacher Shannon Denna (mother of Riley Denna,
almost 3), has worked to raise awareness about what Down syndrome is and how
it impacts the individual with DS and their family. 10-15 students sell candy and
awareness ribbons to students and faculty at Fremd. !Each person making a
purchase gets an informational flyer about DS including a list of organizations
where they can volunteer. Denna set up an information table where people can
pick up brochures and ask questions about Down syndrome. !There is a poster
displaying pictures of students, siblings of students with DS as well as children of
teachers with DS. !The goal of the event is for students to learn that individuals
with DS are more like their peers than different and to open their eyes to
opportunities to volunteer with people having special needs. !Lindsey Pazerunas
has assisted Shannon with the project since its inception and is an excellent
advocate for all people having DS. All profits raised are donated to UPS for
DownS. !
NOVEMBER 2012 - 5
Ready. Set. Action!
“Wash… wash…wash,” I hesitated going into the
other room in fear of what Nick might be doing.
Would it be a pair of my shoes in the sink under the
faucets running full blast yet again? To my
surprise, I went into the laundry room to witness
him taking the dirty clothes off the floor and one by
one plunking them into the washing machine and
with each one saying the word “wash!” It
hasn’t just been the laundry either. For
the past year, he has stepped up in
other household chores. Trying
to get his brother, Hank to
unload the dishwasher was
like trying to pull teeth. But
Nick completely enjoys his
role that he took over since
his brother left for college
last fall. Nick is eighteen
years old and has Down
syndrome and autism. He
is unable to read, but
understands and communicates
through the use of a picture exchange
system and icons he follows on his schedule.
His desire to help with household chores has
blossomed over the last year. In January I plugged in
the vacuum to clean up the fallen needles from the
Christmas tree and Nick grabbed the handle and
turned it on. To my surprise, he not only navigated it
but held the cord appropriately off to the side and
did a nice job running the vacuum across the carpet.
I knew he was doing this for his school job at the
elder care home, but had no idea how proficient
he was performing this task.
I have to give the credit to his high school. His
teacher brought in Northern Illinois University
(NIU) to do a study. The abstract was about
maintaining vocational skills of individuals with autism
and developmental disabilities through video
modeling. Video modeling involves a student
observing a video of a model engaging in a target
behavior and subsequently imitating it. It can be used
to teach a variety of social, academic and functional
skills both in the school and at home. Research has
6 - NOVEMBER 2012
shown that using video modeling helps to promote
independent work-related behaviors and
decreases reliance on staff. Video based supports
often result in fostering independence and
generalization of job related skills. This means there
is less reliance on job coaches and co-workers, all of
which are critical for sustaining competitive
employment.
Each video breaks down the tasks that need to be
performed. These short videos are narrated with
simple verbal prompts. Nick watched them
every day for two weeks and again before
he was to perform a particular task. The
NIU study videos were for loading the
dishwasher and washing machine.
Nick enjoyed watching them over and
over again. They are much more
interesting to him than looking at a
task strip. Task strips were simple icons
showing step by step the progression
of the target behavior. Since using the
videos I have noticed a significant
increase in Nick’s initiative and
accuracy in helping out around the house.
He can also perform these tasks without any
visual prompts (i.e. task strips) and therefore less
prompt dependent when doing his jobs.
While the jobs are pretty basic, for Nick they mark a
milestone. His goals are no longer academic in
nature for the most part they are all functional.
Functional goals are non-academic and generally
understood to refer to skills used in the context of
routine activities and daily living. Anything he can do
independently gives him not only a better chance to
work upon graduation but also a placement into a
group home someday. Right now, he also has many
other jobs at school including shredding, washing
windows, loading the dishwasher, recycling and
washing clothes for the PE department. I have been
very pleased with the success of using video
modeling and plan to expand this to home tasks. I
think the first one we’ll make will be lifting the toilet
seat, because the "lift the toilet seat” icon isn’t doing
the trick!
Teresa Unnerstall lives in the far west suburbs of Chicago with her
husband and two boys, one of whom is 18 year old Nick, with Ds and
autism. This is his world. The rest of us are just trying to keep up!
JANUARY PARENT NIGHT OUT!
Pheasant Run Dinner Theatre presents…!
ESCAPE 2012
THE ART OF MURDER, the
award-winning whodunit about a
frustrated artist, his wife, their insane
art dealer and the odd housekeeper.!
When successful artist, Jack, learns
that he has been wronged by his
flamboyant art dealer Vincent, he
plots a devious plan to kill him.!
Nothing is quite as it seems in this
comedic game of clue, full of twists,
turns and deception!
!Saturday, January 26th
Dinner begins at 6:00, play begins at 8:00
!
Pheasant Run Theatre
4051 E. Main St, St Charles, IL 60174
!
After play, we will gather in the Harvest Lounge for drinks (Harvest
Lounge is at your own expense). Book the sitter late; you won’t want
to go home early.
!
$25 per person (UPS for DownS covers the balance of the cost for the
dinner and play). Limit 30 people.
!
RSVP by December 13th to Stephanie at 847-891-3224 or email
[email protected]
!"#$%&'()**++','!-"./#012
NOT for new parents only!
11:30 a.m. - 1:00 p.m.
Friday, December 7, 2012
Friday, January 11, 2013 (2nd Friday)
Friday, February 1, 2013
First United Methodist Church
1903 E. Euclid Avenue, Arlington Heights
Childcare and light lunch provided.
Child care is provided courtesy of UPS for DownS.
For more information, contact Shannon at 847-788-1138 or
[email protected].
NOVEMBER 2012 - 7
Did you ESCAPE with us?!
The 10th Annual UPS for DownS Dinner Dance delivered
another magical evening and was a huge success! Thank
you to all who participated and contributed. We are
already planning for 2013 programming, meetings,
workshops, family activities, activities for kids and young
adults, and parent nights. If you have not been involved with
us yet, consider doing so in 2013. We have many things to
choose from. Hopefully, you will find an event that fits. At
UPS for DownS, all the money we raise is spent to benefit you
and your family!
8 - NOVEMBER 2012
CASTING
Jr.
CALL!
Join the Cast: Looking for theater peers and ensemble actors
Casting Ages 9 through adult
REGISTRATION REQUIRED.!http://fiddler.eventbrite.com
Rehearsals start Sunday Nov. 11 in the Atrium at Conant H.S.
Cost: $60 per actor. Service Hours for theatre peers.
Tuition is underwritten by UPS for DownS
Future Schedule: Ensemble rehearsals: 2-4 pm, Sundays,
November 11 through December 9, off Thanksgiving.
Tuesday, January 8 and Saturday, January 12:
Movie Viewing & Sing Along
Tuesday 6:30-8:30 and Saturday 1:30-3:30 rehearsals begin
January 15th at Conant High School
Rehearsal Location: Conant High School!
Anticipated Performance dates: April 25 & April 27
Performance location: Conant High School
http://fiddler.eventbrite.com
SATURDAY, JANUARY 5
Schaumburg CRC/Waterworks Indoor Water Park
2013 Winter Sibshop
2:45 - 5:45 p.m.
http://sibshop.eventbrite.com
2013 Winter Swim Party
6 - 9 p.m.
http://winterswimparty.eventbrite.com
NOVEMBER 2012 - 9
2012 Commitment to Excellence Winners
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10 - NOVEMBER 2012
Adult Social Club
Saturday, November 17 - Dinner and a Movie
Jack Ford, Allie Reninger
and Allison Fogarty are just 3
of many young adults with
Down syndrome who voted
in their first presidential
election. The right to vote is
an important part of being
an informed, involved
citizen. Adults with
disabilities have opinions,
ideas and important points
of view on issues that are
critical to their future - and
yours.
Bring money for dinner at Chipotle and any movie
snacks. UPS for DownS will pay for movie
admission.
Meet at 6 p.m. at Chipotle in Streets of Woodfield,
and walk over about 7:00 to the Lowes movie
theater to watch The Twilight Saga: Breaking Dawn
Part 2. Movie times not yet released, so it is hard
to say when pick up will be.
Questions, contact Steve at (847)977-3398.
Sign up at http://ufdtwilight.eventbrite.com/
2012 CONTACT INFORMATION
Co-Chairs
MaryLynn Cassata
Vicki Kirkpatrick
847-927-8906
815-444-1348
[email protected]
[email protected]
Program Coordinator
Marybeth Sanchez
773-736-7335
[email protected]
Treasurer
Peggy Grunewald
847-359-3394
[email protected]
Newsletter Editor
Terri Devine
708-349-9669
[email protected]
Next Chapter Book Club
Melinda Zambito
847-466-9953
[email protected]
Membership Mgmt.
Pat Fogarty
630-291-6740
[email protected]
New Parent Coordinator
Shannon Kersemeier
847-788-1138
[email protected]
Bowling Event
Diane Paradise
630-483-8113
[email protected]
Dinner Dance
Stephanie Neri
847-891-3224
[email protected]
TeenScene
Kim Orlando
630-483-6903
[email protected]
Adult Social Group
Steve Stoklosa
847-977-3398
[email protected]
Education Committee
Lisa Reninger
847-301-0702
[email protected]
Down Syndrome Plus
Sandy Pazerunas
847-705-0715
[email protected]
NOVEMBER 2012 - 11
1070 S. Roselle Road
Schaumburg, IL 60193
For changes or additions to our distribution list:
[email protected] or 847-895-2100
Follow us on Twitter @ups4downs
Adilyn Helen
Date of Birth: June 19, 2009
Nickname: Adi
Occupation: Big Sister/Student
Last Book Read:
Llama, Llama, Mad at Mama
Favorite movie(s): Signing Time
Favorite food: Noodles and French Fries
Favorite thing about school:
I love all of it!
Hobby:
Perfecting my iPad swipes,
reading and playing
Latest Accomplishment:
Walking!
Quote: “Okay.”