Fall 2016

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

A Letter from Executive Director, Jim Hudson

I’m writing this note about 48 hours post-Buddy Walk. Slowly but surely

our office is being put back in order and the DSAGC staff is starting to

recover from an exhausting yet exhilarating event. As a team, Buddy

Walk season truly is our favorite time of the year! This was my fifth

Buddy Walk as DSAGC’s Executive Director and each one has touched

my heart in so many ways. Our staff team is so fantastic that I’m

basically free that whole morning to just walk through the massive

crowds and try to connect with as many people as I can. By 10:45am, I

finally made it through the tunnels and was greeting people along the

river and I couldn’t believe when I looked across the lawn as the wave

of people just starting the walk had no end in sight! To see so many

people come out to our walk to celebrate the extraordinary lives of

people with Down syndrome is both encouraging and humbling at the

same time. I was also moved by the range of people with Down

syndrome with whom I interacted: I got to chat with Ken, who is 54 and who has been to many of our walks; I visited

our friends at Melodic Connections; and I stopped long enough to get in some adorable pictures.

As many of you reading this know, the Buddy Walk is our

largest fundraiser of the year, but to label it “just a fundraiser”

doesn’t do it justice. The Buddy Walk brings so much positive

public awareness that there is no way to truly measure its

impact of changing perceptions and opening up peoples’ minds

to the potential rich lives our friends with Down syndrome can

live. But the way that I’m starting to more fully understand our

Buddy Walk is that it’s a community-building event. Being with

12,000+ people who care about the same mission builds a

certain kind of community, but to see the 10, 20, 50 or even 100

or more people come out to walk alongside the child or adult

with Down syndrome in their lives is also reassuring and

empowering to see. It’s out of these smaller communities that the most significant levels of support that most

families will need will come. So if the Buddy Walk provides a reason to bring all of these people together on that one

day, then I’m glad for the role the Buddy Walk plays in helping us fulfill a part

of the DSAGC’s mission to enhance communities.

Thank you for being part of our DSAGC community as, together, we look

forward to walking alongside our friends with Down syndrome in the days,

weeks, months and years ahead.

Jim Hudson

DSAGC Executive Director

A Letter from Board President, Dave Eberly

Let me take a quick moment to introduce myself. My name is Dave

Eberly. I live in Madeira with my wife Jennifer and our three children. And

I have the impossible task of taking over as Board President for the

amazing Lucinda Hurst, who has served the Down syndrome community

so capably as to be almost literally irreplaceable.

It is traditional for the Board President to share a few words in this

space. It is my goal, however, to not let even this little note be about me,

or Lucinda, or our terrific

board of directors. Because

the DSAGC is not about us

- it is about the community

we serve. We all have

stories about how Down

syndrome has affected our

lives. To the extent I share a story or two about my experiences, I will

try to relate those experiences to our mission, our goals, and our

community.

I say all of this because, this once, I am going to blatantly share a story

which fills me with parental pride. While it seems like yesterday, our

oldest, Samantha was born with Down syndrome 18 years ago. She is

now a senior at Madeira High School, and she is a cheerleader on the

varsity squad. A couple of football Fridays ago, Samantha was elected as Homecoming Queen. The board member

in me was unspeakably touched and proud of our community,

our school district, and most importantly the kindness, maturity,

love, respect, and support her fellow seniors have shown

her. But the father in me was simply proud and happy.

I realize that her being “Homecoming Queen” does not mean

she won’t continue to face difficulties as she approaches

adulthood. But it is something that I confess I would not have

imagined possible that day she was born 18 years ago. Like

our community, she has a long way to go. But sometimes it is

fun to acknowledge how far we all have come.

Dave Eberly

DSAGC Board President

Enhancement Teams - $1,000 to $2,499

Education Teams - $2,500 to $4,999

Empowerment Teams - $5,000 and up

Will The Thrill, Team Dylan, Brooke’s Bunch, Devin’s Team, Joggin for Joss,

Team T-Train, Leaping for Lily, TAS-Maniacs, Team D.O.T., National Down Syndrome

Adoption Network, Ella’s Angels, Captain Jack’s Crew, Charles in Charge, Wolfies

Wieners, Ryan’s Racers, Team Brooklyn, The Donovanators, Kester’s Krusaders

Gabriel’s Angels, Team Alexander the Great, Gannon’s Groupies, Super C, Johnny’s

Buddy’s, Joe’s Bros, Smoochies2U, All you Need is Love, Wyatt’s Super Heroes,

Harper’s Helping Hands, Ryland Z. and his Rock Stars, Jack’s Birthday Buddies,

Engine T21, Team Lylah Bean, Ella’s Allies, Jakey’s Jaywalkers, Becca and the Funky

Bunch, Spiderfriends, Hannah’s Banana Bunch, Wahoo Will, Sweet Caroline & Diamonds

in the Rough, Callan’s Crew, Harrison’s Hall of Famers, Team Violette,

Team Elliot, Lizzy’s Crew, Grant’s Gladiators, Carson’s Crew, Sophia’s Soles

Alyssa’s Aces, Adam’s Angels, Benjamin’s Buddies, Colin’s Crusaders, Georgia’s

Rockford Peaches, Evie’s Entourage, Claire Bears, Kate’s Kanga’s, Team Lilly, Rohnan’s

Renegades, Team Action Jackson, Regan’s Renegades, Ella’s All-Stars, Bridget’s

Brigade, Riley Bug’s Crew, Jonah & the Whalers, Hailey’s Hurricanes, Wyatt’s Warriors,

Vitamin E, Para Mara, Team Sofia, Apollonia’s Mafia, The A Team, Reid’s Rally,

Anakyn’s Star Warriors, Team Jack Henry, Keeping up with Kate, Rylan’s Rockstars,

Cupcake’s Crew, Team Hoskins, Jilly’s Jellybeans, Doing It For Drew, Lucas’s

Skywalkers; Reach for the Stars, McKenna’s Magnificent Marchers, Thomas Center for

Down Syndrome, Kennedy’s Krew, Archie’s Bunker, Love for Lennan, Viva Natalia, Team

Elizabeth, Allie’s Army, Max’s Mules, Kyle Strong, Jack’s Pack, Team Jacob, Team M-

Train, Isaac’s Family, Josie Smittle, Awesome Andrew’s Allies, Travis’ Tribe, Lil’ Miss

Kathryn’s Crew, Alexander’s Army, Noah’s Ninjas, Sawyer Man’s Fans, Aidan’s Army,

Marina’s Marvel Marchers, Super Sam’s Sidekicks, The Gallagher Connection

Thank you to photographers Dave Jansen and Rick Lohre!

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

Butler/Warren

Community

Group - Ladies

Night Out

6:30 PM

5 6 7

Westside

Community

Group -

Family Event

6 PM

8

Eastside

Community

Group Event -

Fall on the

Farm

10:30 AM

Buddy UP

Tennis

4 PM

9 10 11

D.A.D.S.

Meeting

6 PM

12 13 14

Eastside

Community

Group - Social

Club Mixer

6 PM

15

FAMILY

RESOURCE

CONFERENCE

8:30 AM

16

Butler/Warren

Community

Group - Fall

Family Meet Up

2 PM

K.I.D.S

Community

Group -

Pumpkin Patch

4 PM

17 18 19 20

Westside

Community

Group - Mom’s

Night Out

6:30 PM

21 22

Buddy UP

Tennis

4 PM

23

TEEN CLUB -

Parent Panel

2 PM

——————-

30

TEEN CLUB -

Halloween

5 PM

24

——————--

31

25 26

Cheerleading

(ages 6 - 18)

6:30 PM

27

Early Matters

Play Date

(ages 0 - 5)

6 PM

Adult Halloween

Party (ages 18

& up)

6:30 PM

28 29

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

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

1

Butler/

Warren

Community

Group -

Ladies Night

Out

6:30 PM

2

Cheerleading

(ages 6 - 18)

6:30 PM

3

Holiday

Crafting

(ages 18 &

up)

12:30 - 3:30

PM

4 5

Buddy UP

Tennis

4 PM

6

2015 Birth

Year Group

Playdate

7 8

D.A.D.S.

Meeting

6 PM

9

Cheerleading

(ages 6 - 18)

6:30 PM

10

Healthy Aging

(ages 18 &

up)

6 PM

11 12

13

CPR

Certification

Class

1:30 PM

14 15 16 17 18 19

Buddy UP

Tennis

4 PM

20

Holiday

Crafting

(ages 18 &

up)

1 - 5 PM

21 22 23 24

Happy

Thanksgiving!

DSAGC

Office Closed

25

DSAGC

Office Closed

26

27 28 29 30

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

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

1 2 3

Buddy UP

Tennis

4 PM

4

DSAGC

Holiday

Party

1 - 4 PM

5 6 7 8 9 10

11

Hispanic

Community

Group -

Christmas

Party

2 PM

12 13

D.A.D.S.

Meeting

6 PM

14 15 16 17

Buddy UP

Tennis

4 PM

18 19 20 21 22 23

DSAGC

Office Closed

24

25 26

DSAGC

Office Closed

DSAGC

Office Closed

DSAGC

Office Closed

DSAGC

Office Closed

DSAGC

Office Closed

31

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

Family Resource Conference

Saturday, October 15 | 8:30 AM - 1:30 PM | $30 per person

Indiana Wesleyan University • West Chester, OH

Parents, professionals, caregivers, extended family members, self-advocates and friends are welcome to

attend. Childcare will not be provided, so we ask attendees to be at least 15 years old. By registering, you will

have the opportunity to attend two educational presentations of your choice and enjoy a keynote speaker.

Session 1 (9:00 - 10:15 AM)

Charting the LifeCourse: An Introduction of How to Create a Full and Meaningful Life Within Your

Community | Presented by Celia F. Schloemer

This workshop will give you an introduction to the Charting the LifeCourse framework and its tools. This framework

was developed to help individuals and families of all abilities and at any age or stage of life develop a vision for a

good life. Over time, working with these tools will help you think about what you need to know and do, identify how

to find or develop supports, and discover what it takes to live the lives you want to live.

Understanding and Writing an IEP | Presented by Robin Bryant

Participants will gain an understanding of the IEP components and the documentation necessary to develop an

IEP. Discussion will focus on who is required to be involved in the development of an IEP and what the parent and

school roles are in the process. Each section of the IEP will be reviewed with an explanation of what information is

required by IDEA 2004 and what needs to be recorded in the various IEP sections.

You are Stronger than You Know: How to Use Your Best Strengths to Be Resilient and to Help Your

Child throughout Their Life | Presented by Dr. Ryan Niemiec

This presentation will focus on learning about character strengths and helping parents identify and encourage

these strengths in their child, even into their adult years. About 15 years ago, something groundbreaking took place

in the social sciences. A new "common language" of character strengths was put forth. A group of 55 scientists

found that there are 24 positive strengths found across all human beings, for example, gratitude, hope, curiosity,

perseverance, teamwork, and self-control, to name a few. These strengths are in everybody – regardless of ability

– and can be developed! These strengths are found to underpin a meaningful life and help us manage stress.

Stable Accounts and Special Needs Planning | Presented by Rick Scheeler

Legislation was passed (the ABLE Act) that allows people with disabilities and their families to set up a savings

account for disability related expenses that have special tax benefits while being excluded from the supplemental

security income (SSI) program, and Medicaid means testing. This presentation will discuss in detail the Ohio

STABLE accounts including how to open one as well as talk big picture about special needs planning in general.

Panel Discussion on Future Planning

Panelists - Jim Singler, Dr. Lauren Wang and Dr. Thaddeus Nestheide

Planning for a future that is sustainable throughout one’s lifespan means always thinking a few steps ahead. This

workshop is an introduction to Future Planning for you and your loved one with Down syndrome. It will review

aspects of guardianship, health care guidelines and provide tools and ideas for future planning.

Session 2 (10:30 - 11:45 AM)

Intro to Applied Behavior Analysis: Basic Behavior Reduction Strategies for Home, Community and

Educational Settings | Presented by Cara Brown

A review of basic ABA strategies designed to help parents and educational professionals identify the reason for

challenging behavior as well as how it is being maintained in the current environment. This process will equip

parents and professionals with a variety of techniques and strategies to select interventions that directly address the

problem behavior.

Post-Secondary Transition: Partnering with Your School

Presented by Sharon Rieke, Ed.D. and Patrick Wong

This presentation will cover what parents need to know about post-secondary transition services as it relates to

middle and high school students, IEP development of goals, and transitioning on to employment, college or adult

services after graduation. Also addressed is how parents and their children can advocate for their preferences,

needs, interests and skills.

Understanding Sensory Processing Differences | Presented by Joan V. Dostal OTR/L

Sensory differences can impact the lives of children including those with Down syndrome. Sensory seekers and

sensory avoiders engage with their world in ways that can limit participation in daily routines. Challenges with

praxis and postural control complicate how children learn and develop new motor skills. Understanding some of the

behaviors of children with sensory processing disorders allows the parent to start problem solving around common

sensory based concerns and possible tools to explore.

Sexuality, Puberty and Relationships

Presented by Dr. Thaddeus Nestheide, Amanda Tipkemper, Lisa Reebals and Christie Stewart

These speakers will share their knowledge about puberty, relationships and sexuality in adolescents with

developmental disabilities. In addition, they will offer practical strategies and a variety of resources to help families

and caregivers support their loved ones through this challenging stage of life. Pubertal changes and the start of

menstrual periods are many times both anticipated and dreaded. This presentation seeks to inform participants

about pubertal and menstrual norms and discuss options for menstrual management.

Panel Discussion on Supporting Individuals with a Co-Occurring Diagnosis

Panelists - Dr. Jenny Motley, Heidi Nunemaker and Anne Tapia

This workshop is an introduction to the topic of Supporting Individuals with a Co-Occurring diagnosis. You will be

given suggestions and resources to be an advocate for the best care possible. Areas to be discussed will be a co-

occurring diagnosis in areas of complex medical conditions, mental health challenges and Autism.

Lunch and Keynote Speaker (Noon - 1:30 PM)

Keynote Speaker – Rob Snow

Rob is an established stand-up comedian and motivational speaker from the

Cleveland area, who just so happens to have a 7-year old son with Down

syndrome. Rob founded a nonprofit called Stand Up for Downs that uses comedy to

raise money and awareness for Down syndrome-related causes. He has put together

three hilarious shows that are very relatable for those in the special needs community

and are ideal for anyone who has had to overcome any kind of life obstacles.

www.dsagc.com/conference Register and learn more about presentations, speakers and the conference at

Empowerment Classes

Employment Series (ages 16 & up)

Saturdays | October 29 - November 19

10 - 11:30 AM

DSAGC Hatton Foundation Community

Room

$20 fee for 4 weeks

The Employment Series is a 4-week

program that provides the tools necessary

to obtain and strengthen skills for finding

meaningful employment. One will learn

about resumes, determining and utilizing

their character strengths, professionalism in

presenting yourself, and interviewing skills.

Each participant will take part in mock

interviews in the final week of the series.

Registration is required— register online at www.dsagc.com or call 513.761.5400.

Healthy Aging Dinner & Dialogue (ages 18 & up)

Thursday | November 10

6 - 8 PM

DSAGC Hatton Foundation Community Room

There are many aspects and milestones of life that are celebrated as one grows older; however, aging can also

bring with it challenges and uncertainty. These challenges may arise when adults with Down syndrome, their

families and their caregivers do not feel prepared. Accurate information and education about what to anticipate in

an aging adult with Down syndrome is essential.

The evening will be hosted by Clarissa Rentz. Clarissa Rentz is a Registered Nurse with a Masters in Nursing. She

is board certified through the American Nurses Credentialing Center as a Gerontological Clinical Nurse

Specialist. In 1997, while at the Alzheimer’s Association, Mrs. Rentz began to see individuals with Down syndrome

who had a diagnosis of probable Alzheimer’s disease.

Registration is required— register online at www.dsagc.com or call 513.761.5400.

Natalia, age 21

Social Opportunities

Early Matters Play Date (ages 0 - 5)

Thursday | October 27

6 - 8:30 PM

PogoPlay - Blue Ash, OH

$6.50 (kids 3+) | $3 (crawling - 2)

*child with Down syndrome is free

Meet fellow parents while the kids play! This event is perfect for

all ages, so siblings are encouraged to attend! The DSAGC will

provide pizza, snacks and drinks.

Registration is required— register online at www.dsagc.com or call 513.761.5400.

Adult Matters Halloween Party (ages 18 & up)

Thursday | October 27

6:30 - 8:30 PM

DSAGC Hatton Foundation Community Room

No cost to attend

Wear your favorite Halloween costume & join us for MONSTROUS music, FRIGHTENING fun and FREAKY food!

The DSAGC will provide pizza, snacks and drinks - as well as awesome music to keep the dance floor packed!

Registration is required— register online at www.dsagc.com or call 513.761.5400.

CPR Certification Class

This class is designed for caregivers of all ages.

Sunday, November 13

1:30 - 4:30 PM

DSAGC Hatton Foundation Community Room

$20 participation fee

This course will be video based, instructor-led, and feature group interaction and hands-on coaching and feedback

from American Heart Association Instructor, Kevin Uhl. Skills are taught with the AHA’s research-proven practice-

while-watching technique that allows students to practice skills as the video guides them. This course is for anyone

interested in learning CPR and AED with limited or no medical training, and/or anyone who needs a course com-

pletion card in CPR and AED use to meet job, regulatory, or other requirements.

Since the class is instructor-led, participants are encouraged to ask any questions they may have, especially about

any special concerns. Kevin will address anatomical concerns unique to people with Down syndrome.

Registration is required— register online at www.dsagc.com or call 513.761.5400.

Holiday Crafting for Adults Thursday, November 3 | 12:30 - 3:30 PM

Sunday, November 20 | 1 - 3 PM or 3 - 5 PM

DSAGC Hatton Foundation Community Room

Adults with Down syndrome 18 & up

Join us as we team up with Vantiv employees to make

and assemble gifts that will be distributed to families at

our Holiday Party. Crafting experience is not required.

You can join us for both crafting days or just one.

Parents and caregivers are welcome to come too!

Special thanks to Vantiv for volunteering with us!

Registration is required— email Brianna at

Brianna@dsagc.com or call 513.761.5400.

DSAGC Holiday Party

Holiday Giving Tree The Giving Tree program is offered during the holiday season as a means of support to our families. If you are a

family in the local Down syndrome community and need assistance this holiday season, please consider reaching

out to us for support. We are able to provide for ALL children in a family unit from newborns to 18 years of age (we

also provide for adults with Down syndrome ages 18 & up). If you need some assistance or would like to sponsor a

family through the Giving Tree program, please visit www.dsagc.com/givingtree for more information. We are in

need of gifts and monetary donations.

Families that would like to receive a helping hand.

We are happy to support you and your family this holiday season. All children in a family unit (and adults with Down

syndrome 18 & up) are eligible to be a part of the giving tree program. You can register for the giving tree at

www.dsagc.com/givingtree. If you have any questions, please contact Jena Wells at 513.761.5400

or jenaw@dsagc.com.

Families that would like to sponsor the Giving Tree program.

There are two ways that you can help: you can either sponsor a family by shopping for gifts or give a monetary

donation for someone else to shop for gifts. If you choose to do the shopping, you are able to select how many

children/adults with Down syndrome that you would like to sponsor. The suggested gift range is $40-$60 per

person. You can drop off your gifts at the DSAGC Office on Dec 8, Dec 9 or Dec 10. Please note, after you sign

up, you will receive a confirmation along with more information and wish lists. You can register to sponsor the

Giving Tree program at www.dsagc.com/givingtree.If you have any questions, please contact Jena Wells at

513.761.5400 or jenaw@dsagc.com.

Sunday | December 4

1 - 4 PM

Oasis Conference Center - Loveland, OH

Families of all ages

The Down Syndrome Association of Greater Cincinnati celebrates the

holiday season every December by bringing together our families for a

visit with Santa and Mrs. Claus,

arts and crafts, holiday decorating,

gifts and more. We will recognize members in the community that contribute

to our mission, honor a self-advocate’s accomplishments and highlight good

things to come in 2017! We hope to see you there!

Registration is required— register online at www.dsagc.com or call

513.761.5400.

McKenna Meets KISS! By: Emily Jefferson

Meet McKenna Jefferson! She is one amazing little girl that

has had multiple challenges throughout her young life. She

is now 5 years old and thriving! She is going to go places

and is one of the strongest kids around. McKenna had an

amazing night that will never be forgotten.

McKenna was treated like a rock star recently by her

favorite rock band, KISS. Thanks to some of her close

family friends, who also have a love for KISS, McKenna

was able to go to their recent "Freedom to Rock" concert in

Dayton. These friends secured a ticket for her to see the

concert but then also decided to shoot the band an email

featuring McKenna singing along to their songs to see if she

could get a picture with them.

Sure enough Gene Simmons and the band saw the video

and approved three backstage VIP passes for McKenna,

her mom and dad. Once there, McKenna was able to

interact with KISS and the crew. She was given a

backstage tour and was also upgraded to the best seats in

the house.

McKenna loves how the concerts start off with, "You wanted the best, You got the best! The hottest band in the

world, KISS!" and has memorized the phrase and loves to say it. She performed this for a few crew members and

then got to meet the actual crew member who kicks off the concerts with this phrase. The word got back to KISS

about this so when she went

to get her picture taken with

them, they asked for her by

name and talked to her

about "wanting the best,"

and how she was getting the

best.

They all loved her and

adored her as much as she

did them! Her picture even

made the Facebook pages

of some of the band and

crew! When McKenna sees

their picture or videos now

she says, "KISS, my good

friends." It was definitely a

night of dreams coming true

and KISS giving the best!

Mary Lubbers Hardman, great-aunt of Alyssa Trame

John H. “Jack” Boiman, grandfather of Michael Boiman

Kim Kroger, mother of Johnny Kroger

Holly Rauh, individual with Down syndrome

George Louis Reser, great-grandfather of Ella Morgan

Dolores King, grandmother of Koehl Meyer

Margaret Dillon, great-aunt of Payton Schroeder

Cecilia Sabers, great-grandmother of Brooklyn Schmitz

Mary E. Helmkamp, grandmother of Jackson Scudder

Patricia Willcox, grandmother of Owen Willcox

Mary Jane Brannen, grandmother of Chris Hemberger

Mike DiStaola, grandfather of Will Miller

Ronald Miller, grandfather of Will Miller

Donald “Don” Grove, grandfather of Colleen Dixon

Richard Breitfelder, grandfather of Kristen Beilke

Donald Greene, grandfather of Mike Meehan

Eric Forbriger, father of William Forbriger

Florence Williams, great-grandmother of Megan Schulz

Frances Slater, sister of Beth Slater

Franklin O. Kammerer Jr., grandfather of Ellen Kammerer

Robert Schlarman, great-uncle of Carson Vieth and Gabe Lawrence

Rose Strickley, individual with Down syndrome

Rosemary Geers, mother of Andrew Geers

Shirley Smothers-Hardin, great-grandmother of Noah Koshover

Thomas Anderson Sr., great-uncle of Noah Koshover

Steven Grace, uncle of Matthrew Grace

Tim Tyler, father of Kyle Tyler

Henry Draper, individual with

Down syndrome

James Nathan Winter

Dorothy Mehas

Nora Hart

Alma Soloman

Anna Louise Mullen

Joan Sprague

Barb Grothjan

Charles Jenkins

Patricia Crutchfield

Margie Smith

Eugene Schwartz

Lillian Staggs

Dolores Young

James R. Phillips

Robert Koehlke

Peter Bonno

Phil Henry

Timothy McMahan

Please accept our sincere apology if your memorial gift was left off this list

and contact us at 513.761.5400 so we can make the correction.

My Journey to Holland By Jamie Robertson

Holland has windmills....and Holland has tulips. Holland even has

Rembrandts.

In 1987 Emily Perl Kingsley wrote a short essay called “Welcome to

Holland.” Several years back, long before our Holland (or even our Italy

plans), someone shared this with me. It struck a chord with me. It has

become somewhat of an analogy to my journey to motherhood, and

more recently becoming Max’s mom. This is the essay:

“Welcome to Holland”

When you're going to have a baby, it's like planning a fabulous vacation

trip - to Italy. You buy a bunch of guide books and make your wonderful

plans.

The Coliseum. The Michelangelo David. The gondolas in Venice. You

may learn some handy phrases in Italian. It's all very exciting. After

months of eager anticipation, the day finally arrives. You pack your bags

and off you go. Several hours later, the plane lands. The stewardess

comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean

Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing

is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a

different place. So you must go out and buy new guide books. And you must learn a whole new language. And you

will meet a whole new group of people you would never have met before.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while

and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland

has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and

they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes,

that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away... because the loss of that dream is a very significant one. But...

if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special,

the very lovely things ... about Holland.

In late 2012, my husband and I made the decision to register as a waiting, adoptive family with the National Down

Syndrome Adoption Network. A decision that would forever change our lives. The NDSAN provides

support to birth families who’ve received a Down syndrome diagnosis. They help them either in their journey to

parent or to navigate the road to adoption, if that’s what they decide is best. Their mission is to ensure that every

child born with Down syndrome has the opportunity to grow up in a loving family. They work tirelessly and do so

much good. We are forever grateful for all they’ve done for our family.

When we made the decision to be added to the NDSAN registry, we had already been approved and hoping to

adopt again for a little over two years. We were registered with a private adoption agency. We had been

considered by several different birth families over that time, but for different reasons we were never able to

successfully adopt. Something just didn’t feel right and I couldn’t shake the idea that we would have a child with

special needs. I had felt that way since we first started talking about having children, before I even knew, that my

journey to motherhood would be through adoption. It took my husband a little longer to be fully on board. Let me be

clear, it wasn’t that he was against having a child with Down syndrome, it was only the timing. We both understood

what a huge and expensive undertaking it is to adopt a child, let alone a child with special needs, and we wanted to

be sure that we were as prepared as we could be.

This was never our “Plan B.” You know, we did this because there were no typical children available. Not at all. This

is what we wanted. This was my dream. My heart ached for the day I would get to hold our special little angel. The

one I always felt was waiting for me in Heaven. See, David and I had both spent significant time with children and

adults who have Down syndrome. We understood the physical, mental and emotional needs these individuals can

have. We knew that although a child with Down syndrome has different needs than a typical child, the reward of

love and joy that comes with the extra time and effort is worth every minute of hard work. I was excited and ready to

do my absolute best to give our next child everything they would need to grow up happy, healthy and successful.

Fast forward to Spring 2014. We were again contacted about being considered by a birth family for a baby boy who

would be born with Down syndrome. We had been through this several times previously. Like always, we said we

wanted to be considered and within 20 minutes, we were in contact with the birth mother and the rest is history!

That was Max. This was our little guy. It was finally our time.

Max is 20 months old now. We have an amazing relationship with his birth mom and all of her family. We are so in

love with Max and just can’t imagine our life without him. I can say without a doubt that, although my journey in

Holland hasn’t been long, it’s been worth it. It truly is one of the best things that has happened in my life. I never

knew I could love this deeply. Max has given me a totally new outlook on life and a much greater appreciation for

the little things. When I envisioned my path to motherhood, I never in a million years would have expected it to lead

here, but there are no words to express the gratitude for where I am today and what I’m blessed with. It’s different

here. It’s not Italy, but it’s so beautiful.

Although we are so in love and so very happy, it’s not to be mistaken that everything is perfect or easy. Let’s be

honest, it’s hard to be a parent to a child with special needs. Some days are really, really hard. Most days there is a

therapist coming, or a therapy to go to, or another doctor’s appointment to be at. It’s stressful and can be

overwhelming, but what’s the most difficult is watching Max struggle with the physical and developmental obstacles

that are in his way. Max’s “team” of physical

therapists, occupational therapists, play

therapist, speech therapists, his pediatrician

and many, many specialists help him face his

challenges head on. Slowly, but surely, he’s

doing it. Each milestone or goal met is a huge

celebration! Milestone by little milestone, goal

by small goal he’ll overcome the obstacles he

faces. He’ll be the very best Max he can be.

Every time I look at Max, he’s a reminder that

landing in Holland was one of the best things

that’s ever happened to me. He’s absolutely

perfect. He’s my Holland Tour Guide. I’m a

Holland Tourist…and it sure is beautiful here.

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.

AREA SPECIFIC GROUPS

Butler/Warren Community Group

Serving families in Butler and Warren counties

BACH Group

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

counties

Eastside Group

Serving families in the Cincinnati Eastside area and downtown Cincinnati

KIDS Group

“Kentuckians Interested in Down Syndrome” serves families in Northern

Kentucky

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 Spanish-speaking families

*please contact Marina at 513.490.2834

DSAGC Teen Group

Serving teens ages 13—18 through social opportunities and

networking

Grandparents Group

Get connected with other grandparents and share great stories about

your grandchildren

We also offer….

BIRTH YEAR

GROUPS 2011 - 2016

Meet families with children born the

same year as your little one!

Community Groups

Community Groups Coordinator | Amy Iten

www.dsagc.com/programs/community-groups

DSAGC Staff Spotlight

Jena Wells | Early Matters Coordinator

What does your job entail?

As the Early Matters Coordinator, I have the honor of meeting all the new

families and their gorgeous babies. Every person/family has their own feelings,

situation, orientation, etc. I meet them where they are at in the process of

starting this new, exciting, and scary journey that is ahead of them. I do this

through emotional support,

education, information, and

connection opportunities. My

hope is that they feel a sense of

community and know that they

are not alone. And then I get

the opportunity of continuing to

support families through age

five through social events, resources, and finding answers to

questions/concerns. I think I have the BEST position here at the

DSAGC!

Did you have a connection to Down syndrome

before working at the DSAGC?

Well, let’s just say that Ashton, my six-year-old son, has connected

me to a whole new world that I never knew existed. I feel so blessed to be part of this community. My eyes have

been opened and I learn something new every single day. I can’t even imagine life without Down syndrome now.

What inspires you about your job?

These children and adults inspire me! The challenges that I see people

face and then to come out on the other side feeling stronger, healthier,

and happier. It’s pretty amazing that we rally together, as a community,

and the support that I have the pleasure of witnessing each day. The

devastation that one may feel in the beginning to then realizing all of

the amazing possibilities that Down syndrome brings. The sacrifices

that parents and family and friends make can be challenging and to

see our community come together and really “get it.”

What are your hopes and goals for the DSAGC?

My hope for the DSAGC is that it continues to be the catalyst and

connector and the place where families feel trust and support. I hope

the DSAGC never stops growing and learning and following the

mission. Above all, my goal is that the DSAGC continues to serve the

families and meet their needs whatever they may be. I am so blessed

to be a small part of the DSAGC. Thank you for believing in me as the

Early Matters Coordinator!

Jena and her son, Ashton

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

Kerin Caudill kerin@dsagc.com

Event Manager

Joanie Elfers joanie@dsagc.com

School Age Matters Coordinator

Kathleen Ferrara kathleenf@dsagc.com

Health Outreach Coordinator

Amy Fleming amy@dsagc.com

Development Associate

Christy Gregg christyg@dsagc.com

Adult Matters Coordinator

Amy Iten amyi@dsagc.com

Community Groups Coordinator

Kari Kester karik@dsagc.com

Donor Relations Manager

Brianna Reising briannar@dsagc.com

Public Ally Fellow

Amie Smith amies@dsagc.com

Office Coordinator

Lisa Steele lisa@dsagc.com

Business Manager

Sally Tilow sally@dsagc.com

Grant Coordinator

Krissy Vinson krissyv@dsagc.com

Volunteer & Communication Coordinator

Jena Wells jenaw@dsagc.com

Early Matters Coordinator