Para una version en Español, consulte nuestra pagina web www.dsagc.com

A Letter from Executive Director, Jim Hudson

I’m often amazed that some of the most powerful programming initiatives start as small ideas with big heart. Joanie

Elfers started working at the DSAGC in June of 2014 as our School Age Matters Coordinator. That fall when we

were doing some programming planning for 2015, she said that her sister, Debbie Schroeder, wanted to do a

cheerleading clinic for kids with Down syndrome. You see, Debbie had been a Bengals cheerleader at one point in

her life and she has a daughter, Payton, who has Down syndrome. She had always dreamed about bringing those

two passions in her life together.

At the time, I think Joanie and Debbie thought this would simply be a fun activity for a few nights to get kids moving

with great music and dancing. At the end of one of the practices, one of the kids (Ela Tuzun), asked “When’s my

game?” This sparked an idea in Debbie so, for 2016, she reached out to some cheerleading coaches she knew at

two high schools and asked if they would consider having the kids from the clinic come to one of their games and

perform a halftime dance/cheer with their basketball cheerleaders. In the winter of 2016, the kids performed at

LaSalle and Turpin High Schools and both times the energy and joy in those gyms was magical. The DSAGC kids

loved being center court, but another powerful byproduct emerged – we created a highly impactful inclusion

opportunity for those high school cheerleaders. And the crowds erupted and gave our kids standing ovations!

In 2017, Debbie lined up seven area schools to participate. One of the school’s cheerleaders even came to the first

practice at our office to help the kids learn their dance. Debbie also found official cheerleading uniforms and, with the

help of Payton’s grandmas, they put really cute DSAGC logos on the uniforms. Each time the kids performed, a very

positive message of who the DSAGC is and those we celebrate was organically being spread throughout the city.

This simple idea to do a few fun cheerleading clinics was never a part of our strategic plan outreach efforts yet,

heading into 2018, the DSAGC Cheerleading Team has 21 participants and will be performing for the Special

Olympics and at nine high schools throughout

Greater Cincinnati. The icing on the cake is that

this year’s team will be performing at Xavier

University’s Women’s Basketball halftime at the

Cintas Center on Sunday, January 7th at 2:00

pm.

Guarantees are tricky, but I guarantee that if you

want a joy-filled experience one day this winter,

you should come out to any of the games listed

in this in DS Press and cheer on our

cheerleaders. Thanks Debbie for coming up

with a simple idea that has had more positive

ripple effects beyond what we could have ever

imagined!

With Appreciation,

A Letter from Board President, Dave Eberly

Do you think human beings are tribal? I am not sure that is the right

word – tribal, but I think you know what I mean. I think we are tribal. I

think we are wired to support our “team”, to protect our own, to defend

our group. I think it is true in many walks of life: politics, sports, culture,

religion, ethnicity, etc. I know I am this way, personally – if I meet a

Pittsburgh Steelers fan, well, let’s just say I tend to think of him as guilty

until proven innocent, rather than the other way around.

You are of course wondering what in the world this has to do with the

DS Press or the DSAGC, I am sure. I bring this up because I recently

had the privilege and pleasure of attending the New Parent Breakfast

the DSAGC hosts every year. I truly love that event for all of the

reasons you’d expect – it is great to see new families interact with each

other, with the DSAGC, etc.

There is another reason I love the New Parent Breakfast in particular, and it is because I remember being in those

new parents’ shoes. My wife and I have a sort of long-standing, running joke between us – when we first had

Samantha, and we’d see or talk about another family with Down syndrome, we used to say that they were part of

“The Club.” At first, I confess, we used the term a little ironically as not many people choose to join this exclusive

Club willingly. We don’t even remember applying, quite frankly.

But a funny thing has happened over the years. We still refer to our friends being in The Club, but we do it without

irony. Being part of The Club – the DSAGC community – is a term of pride and joy. We may not have applied to

be in The Club, but in part because of the DSAGC and the bonds we have forged with our friends, we are happy

we’re members.

So, when I go to the New Parent Breakfast, I think of it as an initiation of members into our wonderful, exclusive,

weird Club. It is a Club unlike the other tribes or teams I root for. It is a lifetime bond of friendship and

togetherness unlike any other. I may quit the Bengals, or vote across party lines, but I will always be a member of

our community. Whether they know it yet or not, these new parents are now part of a new Club. I’m sure they are

scared and have a lot of questions. I’m sure they are wondering how they got there. But I’m also sure that they

are part of a team that they will root for, defend, and love for a lifetime.

Sincerely,

S u n M o n T u e W e d T h u F r i S a t

1

2 3 4 5 6

7 8 9 10 11 12 13

14 15 16 17 18

6:30 PM

Westside

Community

Group • Mom’s

Night Out

19 20

21

2 - 3:30 PM

21 Series

Communication

Devices

22 23 24

6:30 - 7:30 PM

Communicating

Through Music

and Movement

(ages 6 - 12)

25 26 27

28 29 30 31

6:30 - 7:30 PM

Communicating

Through Music

and Movement

(ages 6 - 12)

Please view our online calendar for details at www.dsagc.com/calendar.

JANUARY

presented by Sherry Lanyi, M.A., CCC/SLP

What is AAC? It is the acronym for Augmentative and Alternative

Communication. There are many examples of AAC Devices. How do you

know if your child would benefit from an AAC Device? What should you

expect from an evaluation and where should you go to complete an

evaluation? How do you determine which AAC Device would be best for

your child? What are the top AAC Devices that are most commonly used

and what are the pros and cons for these? Come to this parent workshop

and get answers to these questions. There will be 45 minutes of

presentation and 45 minutes of Q & A.

The afternoon will be hosted by Sherry Lanyi, M.A., CCC/SLP, who is a

Speech-Language Pathologist and the Coordinator of Speech Pathology

at the Perlman Center at Cincinnati Children’s Hospital Medical Center.

She has worked at the Perlman Center for over 20 years. She has

experience serving kids with a variety of diagnoses including CP, DD and

other physical conditions. She has provided service to patients with

complex communication needs in Early Intervention, Early Childhood and

school-age Tech groups. She specializes in the area of augmentative and

alternative communication, and completes comprehensive evaluations

and treatment for both children and adults who present with significant

communication deficits and difficulties with access. In addition to serving

patients, she also provides training, advocates for funding and supervises

a staff of eight speech language pathologists at the Perlman Center.

S U N M O N T U E W E D T H U F R I S A T

1 2 3

9:30 - 10:30 AM

Physical Therapy

(ages 0 - 2)

6 PM

DSAGC

Winter Dance

4

3 - 3:45 PM

Gymnastics

(ages 3 - 5)

5 6 7

6:30 - 7:30 PM

Communicating

Through Music

and Movement

(ages 6 - 12)

8 9 10

9:30 - 10:30 AM

Physical Therapy

(ages 0 - 2)

11

3 - 3:45 PM

Gymnastics

(ages 3 - 5)

12 13 14

6:30 - 7:30 PM

Communicating

Through Music

and Movement

(ages 6 - 12)

15 16 17

9:30 - 10:30 AM

Physical Therapy

(ages 0 - 2)

18

3 - 3:45 PM

Gymnastics

(ages 3 - 5)

19

20 21

6:30 - 7:30 PM

Communicating

Through Music

and Movement

(ages 6 - 12)

6:30 - 8 PM

21 Series

Puberty and

Sexuality

22 23 24

9:30 - 10:30 AM

Physical Therapy

(ages 0 - 2)

7 PM

Westside

Community

Group • Adults

Night Out

25

3 - 3:45 PM

Gymnastics

(ages 3 - 5)

26

6 - 7:30 PM

TEEN

Kitchen Skills

(ages 13 - 17)

27 28

6:30 - 7:30 PM

Communicating

Through Music

and Movement

(ages 6 - 12)

Please view our online calendar for details at www.dsagc.com/calendar.

FEBRUARY

S U N M O N T U E W E D T H U F R I S A T

1 2 3

9:30 - 10:30 AM

Physical Therapy

(ages 0 - 2)

4

3 - 3:45 PM

Gymnastics

(ages 3 - 5)

5

6 - 7:30 PM

TEEN

Kitchen Skills

(ages 13 - 17)

6 7 8 9 10

9:30 - 10:30 AM

Physical Therapy

(ages 0 - 2)

11

3 - 3:45 PM

Gymnastics

(ages 3 - 5)

4 PM

Westside

Community

Group • Annual

Pizza Party

12

6 - 7:30 PM

TEEN

Kitchen Skills

(ages 13 - 17)

13 14 15 16 17

3 PM

African American

Family Network •

Easter Family Fun

18 19

6 - 7:30 PM

TEEN

Kitchen Skills

(ages 13 - 17)

20 21 22 23 24

4 - 6 PM

321 Party

(ages 16 & up)

25

10 AM

WDSD 5K

26

6 - 7:30 PM

TEEN

Kitchen Skills

(ages 13 - 17)

27 28 29

6:30 - 8 PM

ADULT

Kitchen Skills

101

(Ages 18 & up)

30 31

Please view our online calendar for details at www.dsagc.com/calendar.

MARCH

World Down Syndrome Day is celebrated on March 21

(3/21) to symbolize the 3rd copy of the 21st

chromosome present in people with Down syndrome.

Highlights (Oct, Nov, Dec)

We had great participation in our Empowerment Classes this fall.

Classes included Gymnastics, Beginning Beats, Cheerleading and

Exposure to Art (pictured above).

We celebrated our annual Holiday Party at Oasis Conference Center in

Loveland, Ohio. Santa, Mrs. Clause, the Christmas tree ladies and a

dance mob all made an appearance. The party also had crafts, gifts and

awards. A fun time was had by all!

We welcomed new interns,

Rebecca Reed and

Natalia Garcia. We hosted our annual Holiday Party for adults with Down syndrome and their friends. There were a lot of great

costumes! If you are interested in more social opportunities for adults, visit www.dsagc.com.

Our Outreach Coordinator has

been busy advocating for our

community!

Through our 2017 Giving Tree program, we helped 51 families! This means 129 children will receive gifts this

Holiday season and their parents will receive a food gift card. A huge THANK YOU to our sponsors, monetary

donors and the Giving Tree committee (Jena Wells, Teresa Cracas, Laura Tuzun and Charlene Ware).

Also, THANK YOU to Target (Western Hills) for donating wrapping paper, Legos® for donating Lego sets and

Tracy Smith for donating diapers to families with children four and under.

Winter Dance Saturday, February 3

Newport Syndicate |18 E 5th Street Newport, KY

6 PM - 10:30 PM

*ages 15 & up

Our 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 out with their social clubs. We encourage you to join us

for an evening of good food and drinks, dancing, and of course,

fun!

Your ticket to the dance includes admission, light appetizers,

buffet dinner, soft drinks, dessert and 2 drink tickets for beer or wine. You can purchase tickets at www.dsagc.com.

LET’S GET FANCY! Teens and adults with Down syndrome, we invite you to some pre-dance pampering.After

getting glam (hair, nails and make-up done by professionals), a limo will pickup participants and escort them to the

dance that evening. This pre-event takes place at the DSAGC office, 4623 Wesley Avenue, Suite A Cincinnati,

OH. Females arrive at 2:30 PM and males arrive at 4 PM. This is a FREE event, but you must RSVP to

EmmaG@dsagc.com. Limited space is available.

Empowerment Classes Physical Therapy (ages 0 - 2)

Saturdays | 9:30 - 10:30 AM Feb 3 - Mar 10

ABC Pediatric Therapy, 4325 Red Bank Road Cincinnati, OH

Physical Therapy is a therapist-facilitated, progressive-building gross motor program focused on core strength (abdominal and back). Each class builds on the previous one, so you don't want to miss out! This is a group therapy session. There will be one therapist and one PT intern floating around during the session to speak with every family. There will be weekly information sheets emailed to you as a follow up about the topic discussed in class.

At this time, you may ask the therapist about specific questions or concerns pertaining to your child. Each week, a different topic/technique will be discussed as a group and then you will have time to practice with therapists nearby! Due to safety concerns, we kindly ask that you keep siblings home during this class.

Gymnastics (ages 3 - 5)

Sundays | 3 - 3:45 PM Feb 4 - Mar 11

Richard E. Lindner YMCA, 2039 Sherman Avenue Cincinnati, OH

This is a 45-minute class with emphasis on movement education. Focus will be to: Vault) Run and jump off spring board with one jump; Bars) Hold front support and hanging tuck, pike and straddle on bar three seconds with minimal help and perform a chin-up hold with help; Beam) Mount beam and walk forward and sideways with help, jump off low beam and land on feet; Floor) Learn to do a forward roll down an incline to feet, backward roll down incline to feet with help, begin lunge and lever for handstand, perform monkey jump for cartwheel progression and hold a bridge position for 3 seconds. The exercises and activities will help children develop muscular strength, flexibility, balance, coordination and body awareness. There will be 2 YMCA gymnastics instructors for each class as well as many volunteers.

Communicating Through Music and Movement (ages 6 - 12) Wednesdays | 6:30 - 7:30 PM Jan 24 - Feb 28

DSAGC Office

The focus of this class will be on social and emotional learning objectives as well as communication using music and dance. The class will be taught by professional instructors from Dramakinetics.

Register at www.dsagc.com

21 Series Workshops

Communication Devices

January 21 | 2 - 3:30 PM DSAGC Hatton Foundation Community Room

Presented by Sherry Lanyi, M.A., CCC/SLP

What is AAC? It is the acronym for Augmentative and Alternative Communication. There are many examples of AAC Devices. How do you know if your child would benefit from an AAC Device? What should you expect from an evaluation and where should you go to complete an evaluation? How do you determine which AAC Device would be best for your child? What are the top AAC Devices that are most commonly used and what are the pros and cons for each? Come to this parent workshop and get answers to these questions. There will be 45 minutes of presentation and 45 minutes of Q & A.

Puberty and Sexuality

February 21 | 6:30 - 8 PM DSAGC Hatton Foundation Community Room

Presented by Amanda Tipkemper and TJ Nestheide

TJ Nestheide, who is on the Behavior Support Team for Hamilton County DDS, and Amanda Tipkemper, Autism Services Manager at The Children’s Home of Cincinnati, will be speaking about puberty and sexuality - the emotions/feelings/urges involved and how to explain puberty to your child with DS and how to work with the changes that puberty brings. They’ll be available to answer your specific questions.

Register at www.dsagc.com

TEEN Kitchen Skills (ages 13 - 17)

Mondays | 6 - 7:30 PM Feb 26 - Mar 26

DSAGC Office

Participants will learn basic kitchen and cooking skills from professional chefs while also interacting and communicating with same age peers!

ADULT Kitchen Skills 101 (ages 18 & up)

Thursdays | 6:30 - 8 PM Mar 29 - Apr 26

Bauer Marketing, 5508 Fair Lane Cincinnati, OH

This is our entry-level Kitchen Skills class. It can be repeated each year to strengthen skills in the kitchen. Participants will gain hands-on experience! A professional chef and his assistant will teach adults how to use tools and appliances to prepare meals and oversee participants as they create their very own dishes! Throughout the 5-week session, adults will also learn about kitchen safety and tips on healthy eating.

2017 Award Recipients

Volunteer of the Year

Clarissa Rentz became a DSAGC board member in 2016, but for years

she has been doing behind-the-scenes work to help us better understand

and figure out how to best support aging adults with Down syndrome in

our community. Starting back almost 20 years ago, Clarissa has been a

visionary in terms of recognizing the importance of supporting adults with

Down syndrome, especially for those who are experiencing cognitive and

functional changes associated with the aging process.

Through the years, she has written articles for the DSAGC and spoken at

workshops, but perhaps her most important contribution as a volunteer is

the collaborative/mentoring role she has taken on with Christy Gregg, our

Adult Matters Coordinator.

One of the projects Clarissa and Christy have been working on is an

Aging Binder and Baseline Assessment Tool. This is really ground-

breaking stuff! Now, some volunteer roles are more visible than others, but visibility doesn’t mean more important

or mission critical.

Advocate of the Year

Allie has been working in the mail department at Cincinnati Children’s Hospital

for 6 years and has progressively taken on more tasks, which now includes

some database work. Her most recent performance review came back a “5”,

which is the highest mark you can get at the hospital.

Allie is also a budding entrepreneur and artist. She started her own business

called “Allie Art.” She uses colored pencils and she fills intricate patterns with

bright hues to create graphic landscapes – each with unique qualities of

movement and emotion. After completing a design, the artwork is either

framed for display or turned into wearable art in jewelry and accessories.

In addition, last October she traveled to Washington D.C. to attend the National

Down Syndrome Society’s Leadership Summit, where she met fellow

advocates and entrepreneurs from across the country. She spent a day on

Capitol Hill advocating for laws that will better support employment for adults

with Down syndrome, and will also ensure that they are able to work and earn

income without losing their essential medical benefits.

She met with the staff of Senators Portman and Brown, and spoke directly with Congressman Chabot and

Wenstrup – she was even invited to sit in Congressman Chabot’s office chair where she told him that she would re-

design his business cards for him!

Clarissa Rentz

Allie Guard

Community Contributor of the Year

We value collaborating with other organizations who have a heart to

care for and support children and adults with Down syndrome. In the

fall of 2014, the Cincinnati Ballet and Cincinnati Children’s Hospital PT

Department started a program called Ballet Moves. The class was

designed to foster a love of dance and creative expression for kids with

special needs. It is led by Cincinnati Ballet faculty and supported by

experienced physical therapists. Because these classes are led by

such skilled and passionate professionals, the kids feel safe, their

confidence is being built up and real progress is being made with their

gross motor and social skills….not to mention the kids and teachers are

have a lot of fun!

Julie Sunderland, the Director of Education for the Ballet, has been the

heart and soul of this program.

“Julie truly loves our kids and believes in them so strongly and it shows

constantly in her interactions with all of them. Julie, Amy, Donna,

Michelle, and all the volunteers who spend their Saturday afternoons

dancing with our children because they see the so much potential and ability in them.”

Pamela A. Butler ‘Heart of Giving’ Award

This past year, we lost someone who was very dear to the DSAGC - Pamela Butler. In her honor, we started a new

award, the “Pamela A. Butler – Team Captain: Heart of Giving Award.”

Pamela embodied the spirit of giving. She not only gave of her resources, but she also gave her time and energy in

so many ways. She was a great aunt, whose love for her Dylan and all individuals with DS was ever-abundant in

the way she lived her life. Her Buddy Walk team, Team D.O.T., was a perennial Top 10 Team, she served on the

BW Committee for years and if felt like she was advocating and raising resources

on our behalf 365 days a year.

Pamela was selfless, generous, considerate, compassionate, hard-working and oh

so giving. So, in honor of Pamela we have chosen to give this award to Carl and

Linda Dragan, Team Captains for Ryan’s Racers.

Carl and Linda are grandparents to Ryan, who has Down syndrome. After Ryan’s

birth, they immediately jumped in and created a Buddy Walk Team to celebrate

him. In that first year, they were our top fundraisers!

Then they joined the Buddy Walk planning committee. Carl recruited a group of

friends and family, who are our grill team that flip and turn literally thousands of

burgers, hot dogs and chicken patties at the Buddy Walk. Linda is one of our most

familiar faces during t-shirt week and the tireless advocate for their team, Ryan’s

Racers. Each year, they host a bunco night and a corn hole tournament to

support their team. Pamela’s commitment to serve the DS community was

because of Dylan, but it allowed her to spread her wings and impact so many

other lives and families.

Ballet Moves

Carl and Linda

DSAGC in Washington D.C. By Mariclare Hulbert, DSAGC Outreach Coordinator

I was lucky enough to join the DSAGC in July and my job focuses on outreach

in many forms. I support our school, medical, employment, and government

outreach efforts. In early October, I traveled to Washington D.C. to represent

our organization at a Leadership Summit hosted by the National Down

Syndrome Society.

The two-day conference focused on the importance of employment for adults

with Down syndrome. I met and heard from so many fantastic, accomplished

individuals who contribute to their communities through jobs, advocacy,

volunteering, and a vibrant entrepreneurial spirit. The conference culminated

in a surprise dinner event, which was fully-staffed by adults with Down

syndrome. Men and women from all over the country showed off their talent

and professionalism as servers, bartenders, chefs, hosts and hostesses,

musicians, and artists. One of the servers at our table was Kayla McKeon, a

dynamic young woman who recently made history as the first registered

lobbyist with Down syndrome.

Another impressive young woman was Allie Guard. Allie is from Cincinnati and

has worked at Children’s Hospital for seven years. She works in the mailing

department and coordinates returned mail as well as data entry – this is all very important due to HIPAA privacy

laws. Her coworkers and supervisors have commended her hard work and she has been given new responsibilities

and high performance rankings.

In addition to her work at Children’s Hospital, Allie and her mom Sharon

also create and sell colorful art pieces through their company Allie Art

Designs. They sell these beautiful and bright pieces in shops, at a

number of regional art fairs, and even at the Buddy Walk!

I was lucky to be in Allie’s group as we visited elected officials from Ohio.

We spent a day together on Capitol Hill advocating for laws that will better

support employment for adults with Down syndrome, and will also ensure

that they are able to work and earn income without losing essential

medical benefits. We met with the staff of Senators Portman and Brown,

and spoke directly with Congressmen Chabot and Wenstrup. Allie was

able to share her personal story and tell these lawmakers how important it

is to support employment and a living wage for people with Down

syndrome. Everyone we met with was deeply impacted by Allie’s story --

she was even invited to sit in Congressman Chabot’s office chair and

redesign his business cards!

It was wonderful to meet advocates from all over the country. Ashley

Meier Barlow, DSAGC Board Member and mom of Jack, represented the

DSAGC and the state of Kentucky in meetings with Senators McConnell

and Paul, Congressmen Massie, Guthrie, and Yarmuth.

I am grateful for the opportunity to participate in this conference and to

deepen our relationships with advocates and elected officials. I hope this

work will continue to help our families for years to come!

Advocates, Allie and

Sharon Guard

DSAGC Outreach Coordinator,

Mariclare Hulbert

From NDSAN….

The National Down Syndrome Adoption

Network would like to extend blessings to ALL

families who contacted us in 2017.

Una Reflexión Por Marina Viña, Voluntaria Grupo Hispano DSAGC

Las decisiones tomadas en el pasado nos han llevado a dónde

estamos hoy, han moldeado lo que somos y nos han permitido

crecer y madurar como individuos.

Cuando se toma la decisión de crear una familia, las implicaciones

son más grandes de lo que imaginamos. Tenemos en nuestras

manos la posibilidad de abrir caminos y crear oportunidades para

nuestros hijos. Hacemos planes de la ruta a seguir y las metas

hacia donde llegar, midiendo cuidadosamente nuestras decisiones:

el preescolar que queremos para ellos, las clases de arte o música

que van a recibir, la escuela que van a atender. Todo para sentar

las bases de su éxito personal.

Cuando tenemos un hijo con capacidades especiales, las

decisiones que tomamos como padres y madres de familia no son

diferentes. Pero siento que somos más arriesgados, pues estamos

dispuestos a abrir nuevas puertas, probar nuevas ideas y abrir

nuevos caminos, todo para que nuestros hijos sean exitosos y

disfruten su travesía.

Mi esposo y yo tomamos la decisión de trasladarnos a vivir en Los

Estados Unidos. Tomamos la decisión, no solo pensando en el

éxito profesional que podríamos alcanzar, sino en las posibilidades que le podríamos abrir a nuestra hija Natalia.

Era una bebe cuando dejamos atrás nuestra familia y amigos, para empezar de nuevo en Cincinnati.

No fue una decisión fácil, pero no nos hemos arrepentido. Natalia disfruta intensamente a su familia en Colombia

cada año, cuando viajamos de visita, pero también le dan ganas enormes de regresar a Cincinnati, donde están

su hogar, sus amigos y ahora, su trabajo.

El apoyo y las herramientas que encontramos en DSAGC nos ayudaron a trazar el mapa para nuestra familia.

Tomamos la decisión de estar muy involucrados en la educación de Natalia y encontrar un balance adecuado

entre las actividades de recreación y su tiempo libre en casa. Escogimos el preescolar que debía atender y el

distrito escolar donde queríamos verla crecer. Participamos activamente en las reuniones de su escuela y

construimos un equipo sólido de trabajo con sus maestras.

Ahora, cuando Natalia se prepara para entrar en el mundo de los adultos, la apoyamos y guiamos en sus

decisiones para alcanzar sus metas de vida. De la misma forma que lo hacemos con su hermana. Como muchos,

hemos aprendido que las metas de nuestros hijos con necesidades especiales son muy parecidas a las de sus

hermanos.

No sabemos cómo será el mañana de Natalia. Hoy, vive y disfruta intensamente cada día; planea y crea lo que

será su siguiente día, y eso es lo importante. Paso a paso la apoyamos en su travesía.

Marina and her

daughter, Natalia

A Reflection By Marina Viña, Hispanic Community Group Leader

Decisions and choices taken in the past lead us to where we are now

and in part they shape who we are. The choices we have made on our

journey let us grow as individuals.

When you make the choice of having a family, the implications are

much bigger and broader than you have ever imagined. We have in our

hands the possibility of opening new paths and creating new

opportunities for our children. We plan the map and route to follow, the

goals we want them to achieve, measuring carefully our choices and

decisions: the preschool they should attend, the enrichment classes we

want them to be enrolled in, the school we want them to go. All to build

a safe nest for them to be successful.

When we have a child with special needs, the choices we make as

parents are not that different. But I feel we are more eager to take risks,

try new ideas and open a whole new way of doing things, just to see

our kids succeed and be happy in their journey.

My husband and I made the choice to move to the U.S. We made this

decision, not only thinking about our careers but also in the possibilities

we would be able to create for our daughter Natalia. She was a baby

when we moved to Cincinnati, leaving behind our family and friends, to

start a new journey.

It was not an easy decision, but we have no regrets. Natalia enjoys

immensely visiting her family in Colombia every year, but she is also

happy to come back to Cincinnati, to her home, her friends and now,

her work.

The support and the information we found in DSAGC helped us trace

the map for our journey as a family. We made the decision to be very

involved in Natalia’s education and finding the right balance between

keeping her busy after school and enjoying quiet time at home. We

chose the preschool we wanted her to attend and the school district

where we wanted her to grow. We participated very actively in her

school meetings and built solid work teams with her teachers to make

sure she was going to be successful.

Now, as Natalia gets ready to navigate the adult world, we support and

guide her in her own decisions along the journey she has planned. The

same way we do it for her sister. We have learned that the goals of

children with special needs are not that different from the ones of their

siblings.

We don’t know what tomorrow is going to look like for Natalia. But we

know that today, she lives and enjoys every minute of her day; she

plans and creates what her next day will look like, and that’s what

matters. Step by step we support her journey.

Our hearts are with the Malohn-Pollitt family. The family of five was killed in a car accident in November 2016.

They were part of our local Down syndrome community , as their oldest daughter, Hailieann, had Down syndrome.

The family lived in Alexandria, Kentucky and the children attended Grant County schools.

Samantha, 27 • Rodney, 26 • Hailieann, 9 • Brenden, 8 • Cailie, 6

Cecil Baker

Tommy Benedict, Individual with Down syndrome

Eleanore M. Brigger, great-grandmother of Caroline Hodapp

Pamela Butler, great-aunt of Dylan Tomlin

Maggie Campbell, individual with Down syndrome

Mark Collins

Corinne Comarata

Dale Cordie, grandmother of Teddy Kremer

Peggy Creamer, mother of Michael Creamer

Ken Czillinger, brother of Tom Czillinger

Danika Fern Dapper, individual with Down syndrome

Eileen Dean, grandmother of Robert Hunt

William Eckhoff, grandfather of Carmen Eckhoff

Theodore J. Fleming, great-uncle of Devin Fleming

Katherine Gray Flynn, grandmother of Brody Flynn

Randy Gray, grandfather of Georgia Rellahan

Edgar William “Bill” Gregg

Martha Grimm, great-grandmother of Gracie Tate

Edward M. Haake

Sue Hayes, grandmother of Emily Hayes

Stephen Heilman, uncle of individual with Down syndrome

Dawn M. Heitfeld

Carl Heitkamp

Marion Eileen Kistner, individual with Down syndrome

Albert Knollman

Kyle Kohler

John Matusak

Rita McCloy, grandmother of Sam McCloy

Mary Ann Meyers, great-aunt of Kaitlyn Gonzalez

Jackie Moore, individual with Down syndrome

Rox Panetti, indivudal with Down syndrome

Leonard Partusch, grandfather of Hannah Castle

Hailieann Pollitt, individual with Down syndrome

Alberta Raphael, aunt of Gloria Raphael

Martha “Marty” Reser, great-grandmother of Ella Morgan

Jimmy Ritter, individual with Down syndrome

Antoinette Titchener, individual with Down syndrome

Billy Joe Tollett, grandfather of Leightyn Tollett

Brianna Ware

Jeffrey Ziegler, individual with Down syndrome

Memorial Donations October 2016 - December 2017

If you’d like to set-up a memorial or donate in memory of someone, please contact Amie Smith at amies@dsagc.com.

AREA SPECIFIC GROUPS

SPECIAL INTEREST GROUPS

BIRTH YEAR GROUPS • 2011 - 2017

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 and Facebook groups. All of

our community groups are led by service-minded volunteers with the

help of our Community Groups Coordinator, Amy Iten.

Butler/Warren

Serving families in Butler and Warren counties

BACH

Serving families in Brown, Adams, Clinton, Highland and surrounding

counties

Eastside

Serving families in the Cincinnati Eastside area and downtown Cincinnati

K.I.D.S.

“Kentuckians Interested in Down Syndrome” serves families in Northern

Kentucky

Westside

Serving families in the Cincinnati Westside area and downtown

Cincinnati

African American Family Network (AAFN)

Serving families by providing information, support and networking

D.A.D.S.

Discussion and networking on the aspects of being the father of a

child with Down syndrome

Hispanic Family Group

Social and educational opportunities for Spanish-speaking families

*please contact Marina at 513.490.2834

DSAGC Teen Club

Serving teens ages 13—18 through social opportunities and

networking

Grandparents

Get connected with other grandparents and share stories about your

grandchildren

Community Groups

P - 513.761.5400 F - 513.761.5401

4623 Wesley Avenue, Suite A

Cincinnati, OH 45212

www.dsagc.com

www.facebook.com/dsagc

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 jimh@dsagc.com

Executive Director

Andy Baker andyb@dsagc.com

Bookkeeping Assistant

Kerin Caudill kerin@dsagc.com

Event Manager

Emma Daniels emmad@dsagc.com

Adult Matters Engagement Coordinator

Joanie Elfers joanie@dsagc.com

School Age Matters Coordinator

Amy Fleming amy@dsagc.com

Development Associate

Emma Ganiban emmag@dsagc.com

Program Assistant

Natalia Garcia nataliag@dsagc.com

Self-Advocate Intern

Christy Gregg christyg@dsagc.com

Adult Matters Coordinator

Mariclare Hulbert mariclareh@dsagc.com

Outreach Coordinator

Amy Iten amyi@dsagc.com

Community Groups Coordinator Kari Kester karik@dsagc.com

Donor Relations Manager

Rebecca Reed rebeccar@dsagc.com

Self-Advocate Intern

Amie Smith amies@dsagc.com

Office Coordinator

Lisa Steele lisa@dsagc.com

Business Manager

Sally Tilow sally@dsagc.com

Grant Coordinator

Stephanie Thompson stephanie@ndsan.org

NDSAN Director

Krissy Vinson krissyv@dsagc.com

Volunteer & Communications Coordinator

Jena Wells jenaw@dsagc.com

Early Matters Coordinator