Winter 2016 - Down Syndrome Association

Winter 2016
Para una version en Español, consulte nuestra pagina web www.dsagc.com
A Letter from Executive Director, Jim Hudson
2016 will mark 35 years since the DGAGC was formed in 1981 by a
small group of parents who envisioned a welcoming community in
which quality opportunities and services were offered for their children
with Down syndrome. That vision expanded into a commitment to
ensure that programs and services which support and educate families
who have a loved one with Down syndrome are made available to
assist them on their journey. Today, we have emerged from this
grassroots parent movement to be one of the largest and most
influential Down syndrome affiliate organizations in the country.
As an organization, we have much to be proud of. I’m very thankful for
the families who had the courage, vision, and passion to start the
DSAGC and to help it grow through its early years. We wouldn’t be
who we are today and as able to care for hundreds of families in the
ways we do without their commitment and leadership.
Despite our many achievements, however, we still have some gaps and concerns. Many of you
reading this are aware of the 1983 study that said people with Down syndrome had a life expectancy
of just 25 years. Today, most studies are finding that figure has grown closer to 60 - basically in the
timeframe in which the DSAGC and other organizations like it around the country emerged.
Therefore, one of the biggest gaps or concerns we now face is connecting with and caring for the
hundreds of adults with Down syndrome who live in Greater Cincinnati who are 35 and older. Not a
week goes by that our Adult Matters Coordinator doesn’t get a phone call from a parent, adult sibling
or caregiver who needs help and guidance as they deal with all kinds of challenges related to one of
the six core needs we have identified for our adults (housing, transportation, employment, healthcare,
social networking and aging). Because many of these families had to find their own support systems
in the early years, before the DSAGC was formed, their first point of connect with us usually occurs
during a time of crisis. We would like to do a better job serving these families and we’d love your help.
I’m a big believer in the power of making networking connections – that’s where you come in.
If you know of a family that has an adult family member with Down syndrome, please ask them if they
are connected to the DSAGC. If not, we would love to make sure they are at least getting a copy of
DS Press and are on our email distribution list for our monthly Adult Matters E-newsletter. We hope
that these two small steps will, perhaps, help us connect with them in such a way that they will be
made aware of the programs and services available to assist them during what might be a few more
decades of their journey. To get on either of those lists, they can contact our Adult Matters
Coordinator, Christy Gregg, at [email protected] or 513-761-5400. Closing this gap will probably
involve one connection at a time, so thank you in advance for all of your help addressing this concern
in order to better fulfill our mission across all ages.
A Letter from Board President, Lucinda Hurst
We did it! Andy and I had a fabulous mother-son trip to the
Wizarding World of Harry Potter in Orlando, Flordia. Many of you
may recall that we chose not to take Andy to Italy with us over the
summer as his behavior is very unpredictable when he’s surrounded
by too much commotion. Although there are parts of our trip Andy
would have loved (the Amalfi coast for sure), he would have been
overwhelmed by Rome and Venice. Instead, he got to receive the
undivided attention of his grandparents for 2 weeks, and Darren and
I were able to give our other 2 children the wholehearted attention
they often don’t receive
having a brother with Down
syndrome.
Harry Potter World in early
November is awesome!
Manageable crowds, short
lines, good weather. Andy
and I rode a water taxi to the
parks from our hotel. We visited Hogsmeade (pictured) and
Diagon Alley where Andy got a wand at Olivanders, rode the
Hogwart’s Express, and battled dementors and Death Eaters.
We bought candy at Honeydukes and got our picture taken with
the goblins at Gringotts. I could go on and on as we had such a
wonderful time, but I want to end with this: I so valued the time I
got to spend alone with Andy. It was quite possibly one of the
most “normal” things we have ever done. Just a mother taking
her teenage son on a vacation to do something he truly loves.
Unforgettable…
The GIVING TREE helped 36 families, which included
93 children / adults with Down syndrome.
Thank you sponsors and donors! Thank you for being so giving and nonjudgmental. Thank you
blowing our expectations out of the water. I only wish I could explain to you the difference you have
made in the lives of so many of our families. I wish you could hear the heartfelt "Thank Yous" that
each family says as I tell them their children or loved one with Down syndrome has been
sponsored. I sometimes hear a sigh of relief or a cry of pure appreciation. We were able to touch
more lives this year than ever before and, because of the generosity of so many donors, we were
able to provide each family with a $50 gift card to help with food around the holidays! Again, the
appreciation for each one of you is great!
- Jena Wells, Early Matters Coordinator & Giving Tree Lead
Fall Snapshots!
Early Matters Coordinator, Jena Wells, smiles
with Megan Burger and Charlie Beard at the New
Parent Dinner in November. Twice a year, new
families are invited to attend a dinner to learn
more about our organization’s resources and
meet other families. We welcomed 33 new
families to the Down Syndrome Association of
Greater Cincinnati in 2015!
One of the many empowerment classes offered in 2015 was
our Art Series for adults with Down syndrome. The class met
for five weeks to learn a variety of art forms. Participants
learned about painting, pottery, photography and more!
We had a rocking Halloween party for teens and adults with
Down syndrome! Costumes included a skeleton, Cruella
Deville, a football player, Sandy (from Grease), Michael
Jackson and many more! Everyone had a good time dancing,
eating candy and making crafts!
Our School Age Matters Coordinator, Joanie
Elfers, has been out and about in schools
around Greater Cincinnati. She is available to
attend and advocate at your child’s IEP
meetings. Joanie can also present to your child’s
class about “friendship and Down syndrome.”
Contact Joanie at [email protected].
Please view our online calendar for details at www.dsagc.com/calendar.
SUN
MON
TUE
WED
THU
FRI
1
SAT
2
Happy
New Year!
3
4
5
6
7
8
Butler/Warren
Community
Group Mom’s Night
Out
6:30 PM
10
11
12
13
D.A.D.S
Meeting
6 PM
17
18
19
14
9
Buddy Up
Tennis (ages
5 & up)
4 PM
15
16
22
23
Cheerleading
(ages 6 - 18)
6:15 PM
20
DSAGC
Office Closed
21
Cheerleading
(ages 6 - 18)
6:15 PM
Physical
Therapy
(ages 0 - 3)
10 AM
Buddy Up
Tennis (ages
5 & up)
4 PM
24
31
Westside
Community
Group—
Parents'
Night Out
4 PM
25
26
27
28
Music
Therapy
(ages 3 - 6)
6:15 PM
Cheerleading
(ages 6 - 18)
6:15 PM
29
30
Physical
Therapy
(ages 0 - 3)
10 AM
Advocates in
Action (ages
18 & up)
1 PM
Please view our online calendar for details at www.dsagc.com/calendar.
SUN
MON
1
7
TUE
2
21
FRI
4
Future Is
Butler/
Now (ages 22 Warren
& up)
Community
6:30 PM
Group Outing
6:30 PM
Music
Therapy
(ages 3 - 6)
6:15 PM
Cheerleading
(ages 6 - 18)
6:15 PM
8
10
11
Music
Therapy
(ages 3 - 6)
6:15 PM
Cheerleading
(ages 6 - 18)
6:15 PM
9
15
16
17
Music
Therapy
(ages 3 - 6)
6:15 PM
22
24
23
29
Future Is
Now (ages 22
& up)
6:30 PM
5
SAT
6
Physical
Therapy
(ages 0 - 3)
10 AM
WINTER
DANCE!
Future Is
Music
Now (ages 22 Therapy with
& up)
Melodic
6:30 PM
Connections
(ages 7 - 13)
6 PM
Future Is
Music
Now (ages 22 Therapy with
& up)
Melodic
6:30 PM
Connections
(ages 7 - 13)
6 PM
28
THU
3
Future Is
D.A.D.S
Now (ages 22 Meeting
6 PM
& up)
6:30 PM
Butler/
Warren
14
Community
Group Mom’s Night
Out
6:30 PM
WED
18
12
13
Physical
Therapy
(ages 0 - 3)
10 AM
Buddy Up
Tennis
19 (ages
5 & up)
4 PM
20
Physical
Therapy
(ages 0 - 3)
10 AM
Westside
Community
Group Outing
10 AM
25
26
27
Music
Therapy
(ages 3 - 6)
6:15 PM
Physical
Therapy
(ages 0 - 3)
10 AM
Westside
Community
Group Mom’s
Night Out
6 PM
Buddy Up
Tennis (ages
5 & up)
4 PM
Looking for a night out with friends and family? The
DSAGC Annual Winter Dance has become one of
our signature celebratory events of the year!
Attendees range from couples on a date night, to
groups of friends, to teens and adults with Down syndrome. It's a packed party with good food, cocktails, live
music and dancing.
We will welcome Candygram 4 Mongo (formerly Weezy Jefferson but with a twist), who will entertain to get us
moving and grooving! They are a six piece funk/rock/party band that includes an energetic female vocalist
and a trombonist. Tickets will sell out, so we encourage you to purchase them early.
Ladies with Down syndrome - come get GLAM with
your friends before the Winter Dance from 2 - 4 PM at
the DSAGC Hatton Foundation Community Room. We’ll
provide snacks, drinks and have people on-site to help
with make-up, hair and nails. If you’d like to prep before
the dance, please RSVP to [email protected] or
513.761.5400.
Please view our online calendar for details at www.dsagc.com/calendar.
SUN
MON
Butler/
Warren
Community
Group Mom’s Night
Out
6:30 PM
TUE
WED
THU
1
2
3
Music
Therapy
with Melodic
Connections
(ages 7 - 13)
6 PM
Music
Therapy
(ages 3 - 6)
6:15 PM
Kitchen
Skills (ages
18 & up)
6:30 PM
8
9
10
6
7
Westside
Community
Group Annual Pizza
Party
5 PM
Toddler Talk D.A.D.S
(ages 18 mo - Meeting
6 PM
3 years)
6:30 PM
Kitchen
Skills (ages
18 & up)
6:30 PM
Sit to Fit (18+)
6:30 PM
Sit to Fit (18+)
6:30 PM
13
14
15
16
Toddler Talk
(ages 18 mo 3 years)
6:30 PM
Music
Therapy
with Melodic
Connections
(ages 7 - 13)
Sit to Fit (18+)
6 PM
6:30 PM
20
21
Butler/
Warren
Community
Group World DS
Day
Celebration
2 PM
WORLD DOWN
SYNDROME DAY!
27
28
3/22 •
Westside
Community
Group Mom’s Night
Out | 6 PM
22
Music
Therapy
Toddler Talk with Melodic
(ages 18 mo - Connections
3 years)
(ages 7 - 13)
6:30 PM
6 PM
Sit to Fit (18+)
6:30 PM
Toddler Talk
(ages 18 mo 3 years)
6:30 PM
29
17
FRI
SAT
4
5
11
12
Buddy Up
Tennis (ages
5 & up)
4 PM
18
Kitchen
Skills (ages
18 & up)
6:30 PM
19
Buddy Up
Tennis (ages
5 & up)
4 PM
Sit to Fit (18+)
6:30 PM
23
24
Dramakinetics Kitchen
(ages 3 - 5)
Skills (ages
6:30 PM
Advocates in
Action (ages
18 & up)
1 - 4 PM
30
18 & up)
6:30 PM
Sit to Fit (18+)
6:30 PM
31
Dramakinetics Kitchen
Music
(ages 3 - 5)
Therapy
Skills (ages
with Melodic 6:30 PM
18 & up)
6:30 PM
Connections
(ages 7 - 13)
Sit to Fit (18+)
Sit to Fit (18+)
6 PM
6:30 PM
6:30 PM
25
26
Empowerment Classes
Physical Therapy (ages 0 - 3)
Saturdays | January 23 - February 27
10 - 11 AM
ABC Pediatric Therapy Network, 4325 Red Bank Road Cincinnati, Ohio
$20 fee for 6-week session
Pediatric physical therapists will work with your child to enhance overall strength
and mobility. The efficiency of a child’s strength and mobility allows a child to
maximize their independence. Skills such as rolling, sitting, crawling, standing,
walking, running, jumping, climbing, and skipping are the foundation of gross
motor development. Each new class will build upon the previous class.
Music Therapy (ages 3 - 5)
Wednesdays
January 27 - March 2
6:15 - 7 PM
DSAGC Hatton Foundation
Community Room
$20 fee for 6-week session
Music Therapy provides a unique
range of music-based experiences
tailored to meet the needs of each
individual. These are designed in a
purposeful and developmentally
appropriate manner to produce
positive changes in a child’s behavior
and facilitate growth in communication, sensory-motor and/or cognitive skills. Music therapists work with a wide
variety of client populations. Essentially, a music therapist is using music and music-based strategies to address
non-musical goals.
Register at www.dsagc.com/programs/classes.
Toddler Talk (ages 18 months - 3)
Mondays | March 7 - April 11
6:30 - 7:30 PM
DSAGC Hatton Foundation Community Room
$20 fee for 6-week session
Jennifer Bekins of the Thomas Center for Down Syndrome will lead six educational sessions focused on how children
learn to talk and ways to support communication during play. Each week, Toddler Talk will focus on a specific activity
that parents will practice with their child and interactive feedback will be provided. Families will learn critical building
blocks of early language and have opportunity to discuss at-home communication strategies.
Dramakinetics (ages 3 - 5)
Wednesdays | March 23 - April 27
6:30 - 7:30 PM
DSAGC Hatton Foundation Community Room
$20 fee for 6-week session
Dramakinetics uses drama, dance and music to allow
your body, voice and imagination to express itself
creatively. Your child will learn ways to be more
confident, enhance friendships and learn new
skills. Dramakinetics makes magic happen through
the arts by always
keeping the “fun” in
function and the joy in learning.
Cheerleading (ages 6 - 18)
Thursdays | January 14 - February 11
6:15 - 7 PM
DSAGC Hatton Foundation Community Room
$20 fee for 5-week session
By participating in Cheerleading classes, participants will learn the basics of
cheerleading! Former Ben-Gal, Debbie Schroeder, will teach chants, cheers, a
dance routine, sideline etiquette and more. Each participant will receive their own t
-shirt, pom-poms and have the opportunity to perform at two high school basketball
games during halftime.
Music Therapy with Melodic
Connections (ages 8 - 13)
Tuesdays | February 16 - March 29 | no class on March 8
6 - 7 PM
DSAGC Hatton Foundation Community Room
$20 fee for 6-week session
Melodic Connections is a community music therapy studio that
provides services to all ages and abilities. Their primary goal is to
create an environment that prepares students for their communities
and communities for students. Their classes fill this mission
through instrument play, vocalization and, perhaps most
importantly, socialization.
Future Is Now (ages 22 & up)
Mondays | February 1 - February 29
6:30 - 8 PM
DSAGC Hatton Foundation Community Room
There is no fee for this class.
“Future Is Now” is a future planning curriculum for families and their adult loved ones with developmental
disabilities. Through this class, attendees will identify future aspirations, prepare a letter of intent and learn the next
steps to take as a family unit. Parents/relatives and adults with Down syndrome are strongly encouraged to attend
each session.
Kitchen Skills (ages 18 & up)
Thursdays | March 3 - March 31
6:30 - 8 PM
DSAGC Hatton Foundation Community Room
$20 fee for 5-week session
By participating in this 5-week course, participants will gain hands-on experience in the
kitchen! They’ll learn how to use tools and appliances to prepare meals for the whole
family! Tips for choosing healthy meals will also be discussed.
Class full. Please contact Christy Gregg at [email protected] to be on the waiting list.
Register at www.dsagc.com/programs/classes.
Sit to Fit (ages 18 & up)
Mondays & Wednesdays | March 7 - April 30
6:30 - 7:15 PM
Various Bob Ronker’s Locations
$60 fee for 8-week session
If you’ve ever felt motivated to begin an exercise program, to get out
and walk or run, and then lost interest, here is something just for
you. Join other beginners – runners and walkers – and discover
the benefits of getting fit. This eight-week exercise program, with
convenient locations throughout Greater Cincinnati and Northern
Kentucky, offers you an enjoyable way to train and experience the
power, benefits, and enjoyment of training with a group of other
runners and walkers.
All participants must be partnered with a walking buddy. Walking
buddies can be siblings, parents, friends, etc. or the DSAGC can
provide a trained volunteer. At the end of the of the Sit to Fit
training, we will celebrate by participating in the Flying Pig 5K on Saturday, April 30th.
There is a $60 fee to participate in the Sit to Fit program plus a fee for the Flying Pig 5K. Note, "walking buddies" do
not have to pay the $60 fee. If a scholarship is needed, please contact Lisa Steele at [email protected]. Questions?
Please contact Christy Gregg at [email protected].
World Down Syndrome Day | March 21
World Down Syndrome Day is on 3/21 to symbolize a third copy of the 21st chromosome in people with Down
syndrome. Celebrate the value, acceptance and inclusion of people with Down syndrome on March 21!
Butler/Warren Community Group Celebration
Sunday, March 20 | 2 - 5 PM
Mason Community Center
6050 Mason Montgomery Road Mason, OH 45040
Please RSVP to [email protected].
Adult Matters Celebration (ages 16 & up)
Sunday, March 20 | 4 PM
Location TBD
Please register at dsagc.com/events/321party.
2015 321 Pizza Party for teens & adults.
Year - Round Adult Activities
YOUNG ADULT 'SOCIAL CLUBS'
Social clubs are for individuals with Down syndrome ages
16 & up. They plan and execute social outings with peer
mentors (”peer partners”) each month. Social outings may
include dinner, bowling, movies, sporting events and more!
Each member of the social club takes a turn planning an
activity for the group. The social clubs are based on
geographical location, so it is convenient for everyone to
attend each month. There are currently eight social clubs
throughout Greater Cincinnati and Northern Kentucky.
Westside Co-Ed Group - "Big Time Rush”
Westside Ladies Group - "Westside Ladies" - group is looking for new members!
Eastside Ladies Group - "Eastside Ladies"
NKY Co-Ed Group - "SuperStars"
NKY Ladies Group - "Cheetah Girls"
Butler/Warren Ladies Group - "BW Ladies" - group is looking for new members!
Central Co-Ed Group - "Super JJAMBS"
Northside Men's Group - "Superheroes" - group is looking for new members!
Are you or someone you know interested in joining a social club? Please contact Christy Gregg
at [email protected] or visit www.dsagc.com.
ADVOCATES IN ACTION
Advocates in Action is a NEW program for adults with Down
syndrome ages 18 & up. Throughout the year, the Down
Syndrome Association of Greater Cincinnati will offer volunteer
opportunities with the goal of spreading awareness and giving
back to the community.
If someone participates in THREE volunteer opportunities,
they’ll get a t-shirt; if someone participates in FIVE volunteer opportunities, they’ll get recognized at our end of
the year Holiday Party. *These volunteer outings will have volunteer and staff support, but transportation will
not be provided.
For more information and to register, visit www.dsagc.com/programs/advocates-in-action.
Thomas Center Updates
It has been an exciting year at the Thomas Center for Down Syndrome at Cincinnati Children’s Hospital. One
of our goals is to be a premier center for research and clinical care for children with Down syndrome. We are
always excited to partner with the DSAGC, and wanted to share some of our updates as we work towards our
goals.
Clinical Updates
Susan Wiley, MD, co-Director of the Division of Developmental and Behavioral Pediatrics is serving as the
interim-Medical Director of the Thomas Center after Dr. Sonya Oppenheimer’s retirement. Anna Esbensen,
PhD, has been appointed as the Research Director for the Thomas Center. Michelle Day, MS, MSPT, will be
joining the Thomas Center in the New Year as our Physical Therapist. Stay tuned for updates as she joins our
team!
We welcomed a new Nurse Coordinator to the Thomas Center. Victoria (Vicki) Hardy-Murrell joined us from
Virginia and has brought her experience working with children with special health care needs and coordinating
care for patients and their families. Coordination can include assistance in scheduling appointments,
explaining procedures, helping to ensure the American Academy of Pediatrics Guidelines for Down syndrome
are followed, and being a resource to community partners. Vicki can be the point person to contact for
questions, needs, concerns, etc. She can serve as a “one-door access” to services in the Thomas Center,
while supporting families along the way. [email protected] or 513-636-4611, option 1 for
nursing and ask for Vicki.
Research Updates
Funding: Anna Esbensen received $429,000 funding from the National Institute of Child Health and Human
Development (NICHD) to test two new interventions to support families of children and adolescents with Down
syndrome. She is actively looking for families to participate in this project (see summary below). Initial work for
this study was helped by the great support of the DSAGC’s partnership with the Thomas Center and
charitable contributions by the Thomas Family and the Rubinstein Foundation. Please consider participating
in this research project to help sustain the strong clinical, community and research contribution of Cincinnati to
individuals with Down syndrome.
National Presence: We have been partnering with the NICHD in evaluating clinical outcome measures in
Down syndrome. It was a huge honor to be invited to represent leading experts in the field of Down syndrome,
in order to provide guidance in how we measure improvements in treatment studies. Can you imagine if we
had a treatment that worked, but we couldn’t
detect the changes in individuals with Down
syndrome? With the recent focus on
pharmacological and behavioral trials, there is a
more urgent need to make sure we are accurately
measuring improvements to support individuals
with Down syndrome and their families.
In connection with the work with NICHD, the
American Journal on Intellectual and
Developmental Disabilities is dedicating a special
issue on “Development in Individuals with Down
Syndrome Throughout the Lifespan.” Anna
Esbensen is an Associate Editor for the journal,
and will be serving as the Guest Editor for this
special issue on Down syndrome. Having a
member of the Thomas Center serve in this role
helps elevate the research presence of our Center.
[email protected] | 513-636-0520
Save the Date - April 23!
Down Syndrome Research 101:
A Day With the Experts
Down Syndrome Research Conference
Saturday, April 23
9 AM - 1 PM
Indiana Wesleyan University
West Chester, OH
This free conference will feature national and regional speakers who are outstanding in their field of Down
syndrome research and clinical care. This unique opportunity will allow individuals with Down syndrome and
their families to learn about new Down syndrome biomedical and clinical research opportunities and
advances, and will provide a forum to discuss important healthcare and research topics related to Down
syndrome.
Topics will include:
 Overview of national and state advocacy efforts to improve the quality of life of individuals with Down
syndrome and increase biomedical research on Down syndrome
 Cognitive and receptive communication techniques
 Improving healthcare standards that will extend life expectancies
 Identifying the correlation between Alzheimer’s and Down syndrome and recognizing what further
research is needed to improve the quality of life for our family members with Down syndrome
 Importance of DS-Connect, the Down syndrome patient registry, participation
The host organizations are committed to improving health outcomes for individuals with Down syndrome so
they may live longer, healthier and more productive lives. As a community, we want to work to ensure
individuals with Down syndrome have access to the best possible treatments, diagnostics and therapies for
improving their quality of life.
Register at www.dsagc.com/events/researchconference.
How to Talk to Your Doctor
Written By: Kathleen Ferarra, Health Outreach Coordinator
With the increasing number of patients physicians are scheduled to see for a shorter period of time, you may
feel reluctant to take time to ask the questions you have about your child’s health. As the parent of a child
with special needs, you will most likely have more questions than other parents. This need should be
anticipated by your caregiver so don’t feel uncomfortable for
taking extra time to ask relevant questions. You are paying this
provider for her time and she is there to help you, not
intimidate you.
In order to make the most of your visit, prepare for the
appointment by writing down the questions you have for your
child’s doctor. While there is a lot of inaccurate, biased
information on the internet, there are many reputable websites
that can help you in preparing your questions. Accurate
information is based on evidence based findings, and not just
testimonials. An example of websites that base their info on
research studies include Medlineplus.gov, aap.org, NIH.org,
and familydoctor.org. For questions directly related to Down
syndrome, you a can also go to the DSAGC website to find the
latest American Academy of Pediatrics’ medical guidelines, up
to date research findings, and the name of other medical resources. Visit www.dsagc.com/resources/healthwellness for this information.
Also, it is good idea to print out two copies the American Academy of Pediatrics Guidelines for Down
Syndrome to bring with you to your child’s appointment. Keep one copy for yourself as a check sheet and
give the other copy to your pediatrician. If you are worried about offending her by suggesting she needs a
reminder of the necessary, age-appropriate guidelines, it is ok to say, “you probably already know about
these, but I was wondering if we could go over them together.” Your pediatrician will be impressed with your
proactive approach to your child’s health. (Also, remember that many pediatricians do not see a lot of children
with Down syndrome, so this will be helpful to them in maintaining current standards of practice.)
At the Appointment

When the physician or nurse practitioner initially comes into the room, make sure to let her know that you
have questions, and then ask her if she wants you to ask the questions before or after the exam. It is ok
to say, “I read that….is this true?”, “Can you explain how that applies to my child?”, “Are there any
alternative options I should know about?”

Remember that while the physician may be an expert in her particular field, you are the expert on your
child. Make sure to consider all the information and advice you hear, but also make sure your input is
being considered by the physician.

If you feel like your questions are not being addressed properly, ask the nurse, who will likely be happy to
help find answers to your questions. If you are still unsatisfied, ask other parents who they use and if they
are happy with them. If the physician is a specialist, ask your primary pediatrician for the name of a
different specialist.
Here are some other suggestions for a successful visit:

Making sure you are on time for your appointment is important to ensure your full appointment time. If you
want to avoid waiting, ask for the first appointment of the morning or the first one after lunch.

Provide as much information as you can about the problem you are concerned about. This includes timing
of the problem, what makes it better or worse, and your specific concerns. The more information you can
provide, the better assessment and diagnosis your doctor can make. If needed, make a journal of your
concerns in the weeks before the visit.

Stick to the reason for your appointment. If you require an in-depth evaluation regarding behavior or a
complicated health problem, schedule a separate visit and let the office staff know that a longer
appointment time should be prearranged. Many offices will allot 30 minutes for a consult. Also, make sure
that distractions are minimal by leaving other children at home (if possible) and by turning off your cell
phone.

Make sure when you are leaving the office you understand the medicines prescribed, the plan of care
including labs and diagnostics and when to follow-up. If you are unclear, ask the nurse or medical assistant
to clarify.

Finally, do not feel intimidated or feel the need to apologize for your questions. If you feel like your doctor
is frustrated, a good tactic to defuse the situation is to ask her what she would do if her child had the same
medical obstacle. Chances are, she would have just as many questions.
Community Groups
A Community Group is designed to create opportunities for families that have children with Down syndrome to
network and share common interests, concerns, challenges and information. They do this through community
events, informational meetings, Facebook webpages or playgroups.
AREA SPECIFIC GROUPS
B & W Group
Serving families in Butler and Warren counties
BACH Group
Serving families in Brown, Adams, Clinton, Highland and surrounding
counties
BIRTH YEAR
GROUPS
serving families of children
with Down syndrome born in
specific years
2011
Eastside Group
Serving families in the Cincinnati Eastside area and downtown
Cincinnati
(Extra) Ordinary Friends
KIDS Group
“Kentuckians Interested in Down Syndrome” serves families in
Northern Kentucky
12T21 Group
Westside Group
Serving families in the Cincinnati Westside area and downtown
Cincinnati
SPECIAL INTEREST GROUPS
African American Family Network (AAFN)
Serving families by providing information, support and networking
D.A.D.S. Group
Discussion and networking on the aspects of
being the father of a child with Down syndrome
Hispanic Family Group
Social and educational opportunities for Spanishspeaking families
*please contact Marina at 513.490.2834
Community Groups Coordinator
Amy Iten | [email protected]
www.dsagc.com/programs/
community-groups
2012
2013
T21QTs
(aka T21 Cuties!)
2014
T21QTs - ‘14
(aka T21 Cuties!)
2015
Mr. D Said So!
Written By: Nancy Goetz, mother of Donovan Goetz
Approximately three years ago at our local fall festival, we won a TKD
free trial at Dominach’s Taekwondo Academy in Independence, KY. I still
remember sitting by the phone, holding the certificate and wondering how
the call would start, how it would end and how I would feel. I began to
run scenarios through my head on delivering the perfect approach to
asking if they would take Donovan, my son with Down syndrome, into
their program. I kept thinking, why do I always have to make the “Down
syndrome” disclaimer about by son. I picked up that phone, dialed the
number and left a message. It wasn’t but a half hour later that I received
a call back from the owner, Michael Dominach. I remember speaking with
a man who seemed to be very open-minded and didn’t even hesitate
when I asked him about signing up BOTH of my boys. I remember him telling me “Donovan will probably need
a little more help, but that’s ok,” and so it began - our life journey with Taekwondo.
Because of Michael Dominach (Mr. D) and his amazing staff, we have learned the true meaning of inclusion.
I’ve always believed that “we” as parents of children with different abilities are the greatest teachers of
inclusion, but at TKD I have learned that it’s not always the case. One of the most emotional and memorable
moments for us was the very first time Donovan completed his testing in front of all of the students and
families. All we could think was “Donovan please pay attention, don’t mess up, do it like we practiced!” After
testing, we waited for the call, the one that told us that Donovan didn’t pass his first testing...but the call never
came.
The following Wednesday, as we sat with all of the other families at the promotion ceremony, we hear
Donovan’s name get called and I see this proud little boy run up to get his new belt. At testing when you do an
outstanding job and “wow” the instructors you get a shiny silver tape around your new belt and when you don’t;
the tape is white. Donovan runs over and shows me his belt with a
SHINY SILVER TAPE. I sit there for a moment staring at the belt and
think he may have received the wrong one. Mr. D sits on the floor next
to me, looks me straight in the eyes and says “Donovan did a fantastic
job. He earned and was deserving of the silver tape. There was no
mistake.” He also proceeds to tell me that I shouldn’t doubt his abilities.
This is just ONE example of many instances where we learned about Mr.
D’s exceptional values, the love for his craft, his focus on all student
success and his genuine love for our children.
We have seen both our boys flourish and become very successful,
Gavin currently a probationary black belt and Donovan working up the
ranks at his pace as a current green belt. It is very evident that Mr. D and
his staff are dedicated to our children. His expectations are consistent
across the board and no one, including Donovan, gets any special
treatment. Since joining TKD, I’ve seen Donovan’s growth in stamina,
lower and upper body strength and discipline. Donovan has the upmost
respect for Mr. D and the staff, so much so that sometimes we must use the phrase “Mr. D said so” in order for
him to agree to do things around the house.
The DS Press is published four times a year. The purpose of
the DS Press is to share current information about various
topics relating to Down syndrome and to publicize the activities
of the DSAGC. The DSAGC does not endorse, recommend or
support any particular regime, therapy or treatment. We
welcome articles from parents, professionals and other
interested parties.
Jim Hudson
[email protected]
Executive Director
Kerin Caudill
[email protected]
Event Manager
Joanie Elfers
[email protected]
School Age Matters Coordinator
Kathleen Ferrara
[email protected]
Health Outreach Coordinator
Amy Fleming
[email protected]
Development Associate
Christy Gregg
[email protected]
Adult Matters Coordinator
Amy Iten
[email protected]
Community Groups Coordinator
Patrice McHale
[email protected]
Self-Advocate Intern
P - 513.761.5400
F - 513.761.5401
4623 Wesley Avenue, Suite A
Cincinnati, OH 45212
www.dsagc.com
www.facebook.com/dsagc
Brianna Reising
[email protected]
Public Ally Apprentice
Amie Smith
[email protected]
Administrative Assistant
Lisa Steele
[email protected]
Business Manager
Stephanie Thompson
[email protected]
Director of NDSAN
Sally Tilow
[email protected]
Grant Coordinator
Krissy Vinson
[email protected]
Volunteer & Communication Coordinator
Kristen Vonderbrink
[email protected]
Self-Advocate Intern
Jena Wells
[email protected]
Early Matters Coordinator