Step Up for Down Syndrome 2015

Letter from Jeremie Ballinger, Executive Director

Dear Friends:

This letter reaches you as we’re gearing up for the biggest day in the St. Louis Down syndrome community.  Step Up for Down Syndrome is just around the corner on June 7 at Forest Park!

If you haven’t been to SUDS…well, why not?  Our volunteers and staff have worked hard over the years to make our Step Up walk a wonderful experience for everyone involved.  We also have a couple new surprises planned this year that you’ve never seen at SUDS before!

Why Step Up this year, or any year, you ask?  It’s pretty simple. This walk is responsible for nearly half of the support DSAGSL counts on every year.  In other words:

–  Because of this walk, we welcome dozens of new families to our organization every year with information, baskets, events and a supporting community that cares.

–  Because of this walk, we’ve trained over 100 teachers this year and are planning to take our training to several new communities in 2015.  We’re also going to educate more doctors, nurses and other medical staff than we ever have.

–  Because of this walk, self-advocates will learn to ride a bike for the first time – and at a younger age than we’ve ever offered.  They’ll play sports. They’ll learn healthy habits and behaviors. They’ll lobby more than ever for laws that benefit them.

– And because of this walk, we will continue to provide new programming for toddlers, teens and adults at our office this summer and fall.  Our vision has always been to be the most comprehensive resource for individuals with Down syndrome. It’s finally happening thanks to you walking with us!

The other vitally important reason to attend SUDS is that this walk is the largest awareness event our city has for children and adults with Down syndrome.  It’s our best chance to show St. Louis that individuals with Down syndrome are loving, talented, kind-hearted people who change every person fortunate enough to cross their path.  This comes as no surprise to all of the advocates, parents, siblings and friends who read this newsletter.  But not everyone gets it.  SUDS is our chance to make that statement in a big way.

Hope to see you there!

Why You Should Volunteer at Bike Camp – by Ethan Stalhuth

Ethan is a Junior at CBC High School and has volunteered at the Lydia Cox Memorial Bike Camp for two years. This year our Missouri Camp is June 1-5 and our Illinois Camp is June 8-12 If you are interested in volunteering at either of our camps, please contact Abby at 314.961.2504 ext. 101 or by email at

My name is Ethan and I was a volunteer for the DSAGSL bike camp the past two years. I am 17 years old, and I loved the camp from the first time I went. I have gone every year since. The first time I did the camp was to get out in the world and try some new things, and I also needed to get service hours for my school. Instead of just going for service hours, now I go because it is fun, different, and the people I meet are very amazing and intelligent. I love working with kids that have special needs and it gives me a new perspective on life. I like explaining things in different ways to teach the kids.

I was nervous the first time I volunteered, but the workers are very welcoming. They are so kind and thoughtful and they create an amazing environment for the kids involved in the camp. Each kid I was paired with was motivated by different things such as the songs in the movie Frozen or even stickers. The one thing that scared me the first time I volunteered was…What if my buddy falls? I do not want them to be mad at me. When one of my buddies had a small fall, I was there and ready to catch him. Then, he was not scared to fall anymore and was not as tense to ride anymore. When he got super excited to get back on, it made me happy. I knew I was doing something right in making his day. I had earned his trust, and we both had a blast! It really was an amazing feeling and one cannot experience it in a daily life.

This camp opened me up as a person and made me more confident while helpings kids be more confident about themselves. It also made me try something new. Helping the kids succeed was wonderful!  It was the best feeling when my buddy would graduate wheels and finally be able to ride a two-wheeled bike by himself. When that happened, I loved being able to go help other volunteers and their buddies achieve their goal as well. Seeing the smile on my buddy’s face, once he knew he was able to ride a bike all on his own, made me feel very proud in knowing I just played a role in his life.

I plan on volunteering at many more camps and working with kids that have special needs. I encourage others to try something new and volunteer for the DSAGSL camps and make new friends. You might even make their day!

Behavior Strategies and Solutions – by Brandon May, MSW, BCBA, LBA

Expanding skills and improving behavior are goals for many families caring for an individual with a Developmental Disability. Applied Behavior Analysis (ABA) provides a structured approach to improving challenging behaviors and promoting skill acquisition in the home, school, and the community. In this blog Brandon May, President of Elite ABA Services, provides his personal experiences with Developmental Disabilities as well as an overview of ABA including defining the approach, the causes of behavior, and outlining basic behavioral principles to change behavior. For more in depth information or to schedule a FREE consultation, please visit Elite ABA’s website or contact Brandon at
Being the father of a son with a Developmental Disability, as well as a Board Certified and Licensed Behavior Analyst, gives me a unique perspective on treating behavior challenges and skill deficits in a family setting. I understand the challenges families face because I have experienced them first hand. I know what it is like to have a child who did not speak until the age of 3. I know what it is like to have my child cry for hours and not know why. I know what it is like to have my son struggle to socialize with other kids. But I also know the joy of hearing my son say, “I love you,” for the first time. These moments led me to establish Elite ABA Services. I want to use the skills I have gained through my personal experiences and 11 years working with individuals with Developmental Disabilities to help other families experience success.

About Our System
Elite ABA Services is an agency providing family focused behavior support and skill building to individuals of all ages. We use a 10-step method for creating behavior change that is based in Applied Behavior Analysis (ABA). Our Behavior Specialists use an approach that has proven to be effective through decades of research and has helped our clients become more successful at home, school, and the community.

ABA is a treatment that utilizes the principles of learning to create meaningful and sustained behavior change. It creates behavior change through positive reinforcement and environmental modifications. Children, adolescents, and adults participating in ABA therapy show an increase in skill acquisition and a decrease in challenging behaviors. ABA has been shown to reduce challenging behaviors such as:

  • Tantrums
  • Aggression
  • Self-injury
  • Inappropriate Vocalizations
  • Property Destruction

It has also been shown to effectively promote skill acquisition in areas such as:

  • Communication
  • Daily living skills
  • Eating programs
  • Academic skills

ABA has been endorsed as an effective treatment by, The American Medical Association, The American Psychological Association, The National Institute of Mental Health, and The Center for Disease Control.

Causes of Behavior
All behavior happens for a reason. Behavior is created and maintained by environmental events that surround it. There are 4 functions or reasons for behavior:

  • Attention-kid screams, mom checks to see if she is ok.
  • Tangible-child throws a temper tantrum in the candy aisle. Dad buys him a candy bar.
  • Escape-student makes inappropriate joke during math. He is sent into the hall.
  • Automatic-rocking back and forth, hand flapping, etc.

Creating Behavior Change
Because behavior happens for a reason, we can teach more appropriate alternative behaviors that serve the same purpose.

For example:

  • A child who screams and cries to get his mother’s attention could be taught to raise their hand to more appropriately request attention.
  • An individual who becomes aggressive during chores to escape this task can be taught to appropriately request a break.

Reinforcement is the key to promoting behavior change! Positive reinforcement is providing something contingent on behavior that increases the future likelihood of that behavior. If behavior change is not occurring assess the effectiveness of the reinforcer. You may need something more valuable. There are many strategies used to create behavior change. The key to any system is reinforcement.

Success Stories
Our Behavior Specialists will help identify the causes of behavior and develop customized programs to change it. Some examples for how we have created behavior change include:

  • When treatment began with a 4-year old boy, his vocabulary was 1-2 words. In the first month of treatment he began spontaneously requesting items.
  • An adolescent diagnosed with Autism, Bi-Polar Disorder, and Obsessive Compulsive Disorder increased his independence in showering while decreasing the time necessary to complete this task.
  • An 8-year old boy decreased his levels of inappropriate language from 15 incidents per day, to 0 over a 30-day period.
  • An adult in a Day Services Program has gone from complete isolation and engaging in no skill programs to working on functional skills with his peers for an entire 6 hour day.
  • An adolescent in an Independent Living Center increased the frequency he completed hygiene tasks and cleaned his room.