Our Parent Outreach Chair Says Goodbye

Author: Casie Schlueter, DSA Parent Outreach Chair

I had my son Vollen in April, 7 years ago. They did not have the testing they have now, so we found out after he was born that he had Down syndrome. It was a huge shock, but he was our baby and we loved him no matter what.



We spent 7 days in the hospital NICU before he got off oxygen.

I knew I wanted to get involved in the Down Syndrome Alliance of the Midlands right away. My very first mom’s meeting that I attended was Saturday, September 19th 2009 (Vollen was almost 5 months old). I LOVED my first meeting and hit it off so well with the moms that were there. I said in my personal blog post that, “I have a feeling we are all going to be great friends the rest of our lives and go through everything with our kids together!!! It’s so nice to talk with other moms who are going through the same things you are. We have a special bond already.”


The very first meeting I attended

From the feelings that I had from those meetings, I knew I wanted to give that special feeling to other moms. I started out taking over leading the mom’s group even before I was on the board.

On Tuesday, January 4th, 2011 (Vollen was 2 ¾ years old) I became the Parent Outreach Chair on the DSA board. This December my time on the board comes to an end (for now). I will continue to be the head of the moms group and we will continue to have meetings and night outs as usual.


I was 7 1/2 months pregnant with my last baby when I became Parent Outreach Chair!

I have been on the board and involved with DSA for a long time. I tell everyone this all the time, but my favorite thing about DSA is the mom’s facebook page. The reason I love it so much is because all the moms can be involved even if they can’t make it to the meetings or events. They can always get answers to questions they have that they need help on. All of our moms are so caring and helpful. They want to help out other moms who are going through the same things they once struggled with. With it being my favorite thing, it also frustrates me that there are moms out there in our area that haven’t joined our group. I know they could benefit so much and find such a huge support system that they didn’t even know they needed.


One of our biggest Moms Round Table meetings ever. Twenty four moms attended! 

My other most favorite thing about DSA is our Education Series. This is the best thing in my opinion that DSA has done. The only thing better than connecting with other moms/families in our area, is being taught by experts from around the country that specialize in Down syndrome related topics. I just don’t understand why there is not standing-room-only seating when we bring these nationally known experts into our city to speak to us at NO CHARGE to the parents!!!!! I have learned so much since the beginning. I just wish everyone in our area would make it a priority to get to these.


Mom’s Craft/Wine Night Out March 2014

I just want to thank you all for being so wonderful and I hope that in my time as the Parent Outreach Chair that you felt welcomed with open arms and some of your fears were reduced or eliminated. I wanted nothing more than to help parents feel like they were not alone in this journey. I hope I succeeded.
I will see you at the next moms meeting or Down Syndrome Education Series!
Love, Casie


Wow, I have had a lot of different hair styles over the years!


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November 2016

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Little Grayson checking out his first Buddy Walk® shirt at the New Parent Connection on November 3. What a cutie! Updated Buddy Walk® Total: $135,615 This is due primarily to matching gifts! Team Photos & Candids are now posted on … Continue reading

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October 2016 Newsletter

Announcing our Diamond Sponsor!

Enable Savings Plan has entered an agreement with DSA to be a Diamond Sponsor for three years! Did you know that with the launch of Enable, Nebraska became one of the first states to offer a nationwide ABLE plan sold directly to the public? Stop by the Enable Tent to learn more!

We still have a lot of money to raise to hit our goal of $115,000 in online fundraising. That’s the only way we can dream of matching last year’s grand total of $147,000. Find the program or outreach information that is most important to your family and share it with your potential donors. Ask me for help! That’s why I’m here.

We are low on registrations.

I KNOW that there will be more than 1400 people there. Please, if you have family and friends coming, encourage them to register. $6 registration fees pay for the CARNIVAL. Donations pay for DSA PROGRAMS. You won’t find another party in town that offers face painting, photo booths, games, bounce houses, and a DJ who lets you climb on the stage for SIX DOLLARS.

We can do this! We always do! See you in a few days!


Browse the fresh look of our website!
It’s where most new moms, dads, and even grandparents first meet us and start to gather information on Down syndrome. And you guessed it! It’s paid for by donations!






Donations also fund programs such as medical and new parent (prenatal and postnatal) outreach! Anne, Nick Norton and Beth Gard met with social workers and patients at Children’s Hospital on October 1.






Monroe Meyer Institute Starting a New Group for Young Adults with Down Syndrome
This group is designed for individuals who are in transition programs up to age 25, need to work on conversational skills, and are reading at a second grade level. Please contact Korey Stading if you would like more information or are interested in participating at kstading@unmc.edu or 402-559-6263.

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Your Dollars DO Make a Difference

Dear DSA Friend,

I know there are many, many worthy organizations that deserve your support. The fact that you are considering supporting one of “my” children means the world to me. I’d like to tell you a little bit more about DSA and let you know exactly what your dollars can do in our community.

14137972_10210255872731621_5589803318993496626_oThe Down Syndrome Alliance of the Midlands (DSA) is committed to connecting those touched by Down syndrome through education, advocacy and support. We serve over 400 families, plus their educators and health care providers, across Eastern Nebraska and Western Iowa.

DSA was founded in 1999 by a handful of parents who felt the need to associate with other families of children with Down syndrome. For ten years it functioned as an all-volunteer organization. The first employee was hired in 2009. The second and third were added in 2014 and 2015, bringing total staff hours to 65 per week.

In 2012 DSA leaders made a concerted effort to become very active in the national Down syndrome community. DSA is an affiliate of the National Down Syndrome Society (NDSS), the National Down Syndrome Congress (NDSC), and the Global Down Syndrome Foundation. DSA is also a member of the Down Syndrome Affiliates in Action (DSAIA) and the Heartland Genetics Services Collaborative. DSA’s Executive Director is the President-Elect of the DSAIA Board of Directors and DSA’s Board President is a co-winner of the 2015 NDDS Ambassador of the Year Award. These commitments have enabled us to bring professionally-developed programs and resources to our local community.

To help children, we support the whole family.

Parents are supported as soon as they reach out to us, which is often early in a pregnancy with a prenatal diagnosis of Down syndrome. Peer support is crucial as some of our newborns face medical issues that result in NICU stays or even heart or abdominal surgeries.

Our flagship program is the Down Syndrome Education Series (DSES). Each month, a speaker in the field of Down syndrome education, health care, or research is brought to Omaha to present information to DSA members that will positively impact the well-being of their children. Separate sessions are offered for professionals, usually educators who will take information to disseminate to schools in 20 districts. DSA created this program in 2014 and received a start-up grant from the Global Down Syndrome Foundation. No other Down syndrome organization has a program of this caliber and format that is free for parents and professionals to attend.

In the fall of 2016, DSA launched a tutoring program for preschoolers and school-age children. Parents will be instructed on how to support each lesson at home in between sessions.

Individuals with Down syndrome and their families are eligible for scholarships and stipends to attend NDSS and NDSC annual conferences. Both offer self-advocate trainings and breakout sessions. DSA offers $500 scholarships to teens and adults with Down syndrome to support their efforts to grow in independence and self-expression.

DSA hosts social events and roundtables throughout the year to foster relationships among our members. Many of these opportunities include activities that might be out of reach for families struggling to manage the financial burden of caring for a child with special needs. We offer respite for parents and siblings, as well.

DSA is also one of 16 organizations in an 8-state region with facilitators to train parents in creating a medical home for children with genetic disorders. A second grant from the Global Down Syndrome Foundation allows us to include a generous childcare stipend for parents attending the all-day training.

What will your dollars do?

Welcome 15-25 babies to the Omaha Metro each year

Your dollars will support presentations to OBs, Geneticists and Genetic Counselors, Maternal-Fetal Specialists, Labor and Delivery Staff, NICUs, and Pediatricians to ensure that current, relevant, and accurate information about Down syndrome is available to all patients who receive a prenatal or postnatal diagnosis of Down syndrome. You will encourage the use of neutral language (“I have the result of your test” rather than “I have bad news”) and emphasize the importance of local support. Your dollars also purchase nationally printed and medically reviewed materials for physicians and patients, DSA’s own Guide for New Parents, and beautiful board books for the little ones.

Support education advocacy

Sustain DSA’s flagship program and help implement the new tutoring program for school children. Your dollars will also grow the tutoring program by adding a second level in our 2017 / 2018 school year.

Increase organization capacity

Increase total staff hours, allowing DSA to develop and deliver more programming while transitioning the board of directors from a working to a governing board. Invest in the professional development of staff members to strengthen the service they provide to members.

Increase stipends and scholarships

Currently the stipends to attend the National Down Syndrome Buddy Walk on Washington and the National Down Syndrome Congress Annual Conference are $250 and the self-advocate scholarships are $500. Increasing the stipends and scholarship budget will allow for either greater payouts or a concerted effort to encourage more applicants because more funds will be there to award.

Send families on fun excursions

You can imagine that a family whose budget must consider multiple therapies and adaptive devices that aren’t necessarily covered by insurance might have to pass on buying tickets for a trip to the world’s best zoo. Your dollars can increase the special events budget to include a day at the Henry Doorly Zoo, as well as other events and attractions in Omaha.

Your dollars will connect our parents and children to education, to advocacy efforts, and to each other. Your dollars, donated to one team, will impact hundreds of families.

Thank you for your generosity.

Anne Mancini, Executive Director


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September Newsletter

And the top fundraising prize for the 15th Annual Omaha Buddy Walk® is …


You read it right. My friend with Down syndrome and two adults will be DSA’s guests at the NDSS Buddy Walk® on Washington or the NDSC Annual Conference. Winner’s choice. Trip includes conference fee, airfare, hotel, and meal allowance. This goes to the team that raises the most money.*

*Board and staff not eligible to win.

The team that raises the next highest amount will win Creighton Men’s and Women’s Basketball season tickets and the team with the most members will win a family pass to the Henry Doorly Zoo.


These volunteers spent a crazy night working at the Foam Glow 5K to earn an incredible $4740 for DSA! THANK YOU!


The Learning Program Omaha will start this month with a lead teacher, assistant teacher, occupational therapist, speech-language pathologist, lots of volunteers, parents, and twelve little students! It was very exciting to see the session fill within hours of opening. There are still options for parents and educators to learn the material. Do you like to work with little students? Contact Leah Janke for more information.  janke@dsamidlands.org

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Back to School

Author: Buffy Beightol, DSA Board Vice President



Middle School. A parallel universe. A place where ‘babies and blossoming teenagers’ coexist under the same roof. New things and words like lockers, modules, Industrial Technology, Foreign Language, school dances, team sports are all a part of the experience of middle school. My daughter Bailey started 6th grade this week. Until now, she’s been in this wonderful, positive, warm fuzzy cocoon of elementary school where teachers, friends and paras ALL knew her name, her family, her dog Ozzy, her love of painted nails and wearing bling, her picky eating habits, and when and how to assist her best.

Now we start over. Can I tell her teachers enough about her or too much? Will they realize what may be overwhelming or scary for her? Will they try something new and if it fails, try it again, and again? Will they be able to discover new things about Bailey? Will she make new friends, continue developing her social skills, expand her knowledge, increase her independence, improve her communication skills, maintain her self-respect and dignity, with few setbacks, little resistance and lots of smiles?

At our transition meeting, we wanted her new support team to know just enough about Bailey to help her adapt to the new environments, yet not tell them too much so that they can discover new things about her and to develop new bonds that she has not had before. It’s a slippery-slope, forging into new territory like this, but we have positive attitudes, open minds, and realistic expectations for the school, staff and Bailey. It is a joint effort between us as parents (advocates) and the school. It is an effort that is constant and ongoing. It requires open-communication, mutual respect and shared expectations. It is a relationship between professionals and parents that keeps Bailey’s needs as our top priority.

It was just yesterday, we dropped her off for the first day of kindergarten. At least it seems that way. She has changed so much and so have our expectations. But something that has never changed, is our goal of wanting her to be happy, to be safe and to enjoy going to school.
We’ve only had 3 days of school, and I am sure that if other parents saw how Bailey runs out of school and into our arms with the biggest smile and hugs while yelling “Daaaaaaaaaad. Mooooooooooom.”, they’d be jealous. It is the highlight of our day. So far, so good.

Buffy is a mom to three children, Bailey, Brooke and Ryan. Her and her husband Larry’s oldest child has Down syndrome. Buffy has been involved in DSA since Bailey was quite little and joined the board in 2011. Having left behind an 18-year career in retail management to stay home with her children, Buffy is now re-inventing herself as a paraprofessional in the Millard Public School District.

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August Newsletter

This gallery contains 6 photos.

  Sept 3, 9 – 11:30AM Roddy Field, Bellevue East HS New this year! Our Buddies are invited to the Storm Chasers game in the evening and will get to walk out on the field with the players for the … Continue reading


July Newsletter


Buddy Walk® Kickoff Party!

August 4th

It’s everyone’s favorite time of year again! It’s time to get your teams registered and start fundraising for the Buddy Walk®. Join us on August 4th from 5pm – 8pm at Walnut Grove Park. Enjoy a free pizza dinner while you learn about what’s new for 2016. There will be a video game truck for the kids and everyone who registers their team will have a chance to dunk their favorite board members in the DUNK TANK! All teams will also have a chance to win a highly coveted team tent spot! Click HERE to register for the party.

unnamed (15)Dr. T.J. Holmes Memorial

DSA’s Board and Staff would like to express their condolences to the Holmes family on the passing of Marci Franzen’s father. Marci’s family and friends have made generous contributions to DSA in memory of Dr. Holmes to benefit Sophie Franzen and all of her friends with Down syndrome.



July 24

unnamed (16)Looking for some FREE fun in the sun? This year’s Swimming Party will be Sunday July 24th from 7-9pm at Zorinsky Pool. Snacks and water will be provided. Click HERE to register.


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August 6

Volunteer at the Foam Glow 5K – if we can get to 40 volunteers (max 50), each will earn a $75 donation to DSA! We have 18 so far.

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June Newsletter

New Educational Programming

DSA is proud to offer The Learning Program™ Level 1 in the 2016-2017 school year! Certified teachers will work with both parents and children one Saturday per month. Instruction will be specifically tailored to the manner in which young children with Down syndrome learn best.

The Down Syndrome Foundation of Orange County, CA partnered with educators, researchers, therapists and administrators to develop a program that uses effective teaching strategies and customized materials to support parents, teachers and children in the educational process. The goal of The Learning Program™ is to empower parents as advocates for their children and improve academic outcomes. The Learning Program™ complements formal instruction in literacy and math, and includes occupational and speech therapy components.

This program is open for children ages 4-7 and their parents. Students in the classroom receive monthly small group instruction with a focus on literacy, numeracy, fine motor, and language development. Parents in the program receive monthly instruction on a wide range of topics such as “Teaching Your Child to Read”, “Introduction to Math” and “Creating an Effective Learning Session”. Teachers affiliated with the program receive information about effective teaching strategies and cognitive, developmental and educational research.

The program will run September – May (excluding December). Registration will open in July with 12 available spots. Tuition is $200.

DSA’s staff and board offer their deepest sympathies to the Ashchi family on the passing of Aja Trinity, who lit up our community for a short but immeasurably adorable time. Aja will always be part of our hearts, and Carrie, Tristen, Brianna, and Sophia will always be DSA family.

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NDSS Times Square Video Contest runs through June 17. We love to see DSA faces on the Jumbo Screen! Click HERE for details


Storm Chasers Gameunnamed
Registration is now open! Join us on July 16th when the Down Syndrome Alliance of the Midlands will be the community organization of the night at theStorm Chaser’s game. Tickets are just $5 each! Children 2 and under do not require a ticket if they don’t need a seat. There will be a limited number of tickets sold and registration will close June 23rd so don’t wait! ClickHERE to register.

Swimming Party
Looking for some FREE fun in the sun? This year’s Swimming Party will be Sunday July 24th from 7-9pmat Zorinsky Pool. Snacks and water will be provided. Click HERE to register.

unnamed (1)Many thanks to those who supported DSA through Omaha Gives!
Elizabeth Bailey
Kim Bainbridge
Rollin Biel
Kurt Boustead
Charlotte Curry
Ervin & Smith on behalf of Nicole O’Neill
Alan Gard
Sherri Harnisch
Nick Heinrich
Mary Beth Holmes
Justin Hope
Richard Hunt
Sharon Jabens
Rebekah Jerde
Renae Kirby
Marlys Lien
Mary Lukaszewicz
Jane Oaken
Therese Paladino
Amanda Patrick
Jeanna Pine
Jennifer Rohacik
Todd & Jennifer Scholz
Alexis Stearns
Dori Wanitschke
Lisa Webb
Bill & Judy Wimmer
Ellen Yates
Tira Zech


The Sikora Family boasts more than one writer!

The Parent’s Guide to Down Syndrome, by Mardra Sikora and Jen Jacob, is reviewed by Anne Mancini and Trisha Stibbe on DSA’sDownRight Perfect.

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Book Review: The Parent’s Guide To Down Syndrome

Review by Anne Mancini, Executive Director and Trisha Oyos Stibbe, Parent – Down Syndrome Alliance of the Midlands, Omaha, Nebraska

Full disclosure! We know – and love – Mardra, and her son Marcus Sikora.  

Anne: When I schedule a meeting with Mardra, I block out some extra time, because I know we are going to find more to talk about than what’s on our agenda. Marcus and I are in a book club together. I got to see these two in action when I attended an author reading of Black Day: The Monster Rock Band. They are joyful and fun to be around, but Mardra isn’t afraid to tell the hard truths. She is not apologetic about her choices and opinions. She is a well-educated and passionate advocate for Marcus and his peers. So I knew before I opened the book that there would be a lot of Mardra’s heart in it.

bookTrisha: Claire was only a few months old when I first met Mardra and Marcus. My husband and I listened to this power duo talk about advocacy and were so inspired. Seeing a young adult with Down syndrome being fully engaged and immersed in the “real world” gave both of us such hope about Claire’s future. After speaking to Mardra, my passion for advocacy grew, and I know it was due to her setting such a strong example.

Anne: The very first thing I appreciated about The Parent’s Guide to Down Syndrome is the advice to seek out a local Down syndrome association. As the director of the Down Syndrome Alliance of the Midlands, I have the privilege of watching my families welcome each other to the community and share stories and support. This book will provide that sense of community for any parent not quite ready to dive into a local organization or who unfortunately does not have one geographically accessible.

Trisha: My husband’s work causes our family to move quite often. In the next three years we will live in three different states. Finding the Down Syndrome Alliance of the Midlands was finding “my people.” There was no prefacing feelings, I met people who understand that sometimes laughing is the best medicine, and we compare and recommend physicians, therapists, hospitals, etc. Having a local support system has been invaluable. When I am about to lose my mind over this new life, I talk to the other moms, go to the get-togethers, and yes, even cry. Because these friends get it like no one else does.

Anne: Just like most organizations, this book features the voices of parents of all walks of life, with children of all ages. There are stories about hearing the news, breastfeeding, having more children, becoming a community advocate, and sending your child to college.

Trisha: Reading the birth diagnosis stories took me back to the day Claire was born. I thought, “So, it wasn’t just us?!” Other parents had experienced the same joy-combined-with-grief that so few understand. I was able to identify with all of those stories, good and bad.

Anne: In our community, we know that when faced with a diagnosis of Down syndrome, there are many things about which a new parent doesn’t even know yet what to ask. I was pleased by the explanation and discussion of topics such as the blue and yellow colors, school acronyms, and guardianship issues. Because it is presented chronologically, the information can be digested in the early days and referred to again later, or taken in bit by bit as the child approaches those transitions.

Trisha: The format of this book was easy to read and digest, given the vast amount of information. I read it all in one sitting and dog-eared several pages. While Claire is only 9 months old, it was still invaluable to read some stories of those with older children with Down syndrome. I don’t think one can ever be too prepared.

Anne: Trisha and I are proud to recommend this book to parents of children with Down syndrome. We think wherever a parent might be on the journey, a connection to information and other parents’ stories is extraordinarily helpful and can be found in these pages.

The book is available at Barnes & Noble (in stores and online) as well as Amazon. For special offers, click here.


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