Holiday Weekends are big travel times for families. Check out our recent e-blast that has helpful hints for traveling with your loved one with a disability!
Letter from Jeremie Ballinger, Executive Director
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!
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 email@example.com.
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!
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 bmay@EliteABA.com.
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:
- Inappropriate Vocalizations
- Property Destruction
It has also been shown to effectively promote skill acquisition in areas such as:
- 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.
- 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.
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.
Volunteers are crucial to the success of an organization. As the Volunteer and Event Manager, it’s my job to recruit quality volunteers for our programs and events, ensure that they are well prepared to perform their duties, and are satisfied with their experience.
Volunteers come to the DSAGSL in many different ways. I make sure that all of our volunteer postings on Facebook, VolunteerMatch, and local university websites are up-to-date, since many people find us through these platforms. No matter what, I always respond to a volunteer inquiry within 24 hours. We usually have two different types of volunteers, so my responses vary slightly.
Program volunteers are people who want to make a regular commitment to our organization. They usually have a particular skill or interest area, and almost always have experience with people with disabilities. These volunteers must fill out a basic volunteer application and submit to a background check. We meet with them at least once before they begin volunteering and provide a detailed orientation and summary of the program, and typically plan out the program sessions together. All of our programs are either partially or completely run by volunteers, so it’s important to secure reliable, experienced, enthusiastic people for all of our wonderful programs! We make sure to check in with these volunteers regularly and will begin sending them quarterly surveys so that we can properly assess our programming and overall volunteer experience.
Event volunteers also want to make a regular commitment to our organization, but perhaps not on a weekly basis. Event volunteers must fill out a basic volunteer application, but they do not have to submit to a background check. On event day, we host a brief orientation for event volunteers, providing a brief overview on Down syndrome, our organization, and the purpose of the event. Event volunteers will begin receiving surveys after each event so that we can properly assess our event management and overall volunteer experience.
One of the most important parts of my role as Volunteer and Event Manager is follow-up! I send thank-you notes to all event volunteers no more than one week after the event, and always make sure to maintain email communication; I don’t let more than a month go by without emailing my volunteers! I want to see as many volunteers return to our events as possible and I know making them feel appreciated is a huge part of that. Not only do I want them to know that their contribution matters, I want them to really get to know our members and become advocates for people of all abilities.
I am continually working to improve our volunteer program and really can’t wait to see where it goes from here. To all the volunteers reading this- we cannot thank you enough! You are such an important part of the mission of the Down Syndrome Association of Greater St. Louis and I hope you’ll continue to help us grow and improve as an organization!
I play basketball, softball, tennis, bowling and volleyball.
We had a state basketball tournament in March, and we won both games! We got medals at the end.
For tennis, we have a good coach, Jeremie Ballinger. I also earned a medal for tennis.
My other coaches, Pat Hawkins and Mr. Jack are really fun too and play the sports with us!
In my picture, I have on all my medals!
DSAGSL is proud to announce the formation of a new scholarship program. We are currently the only scholarship granting organization in the state of Missouri under Bryce’s Law, which is legislation passed to provide opportunities for assistance to students with developmental disabilities.
Thanks to the vision and generosity of our Board of Directors, DSAGSL has developed criteria for awarding scholarships. We are also pleased to announce the second recipient of our DSAGSL scholarship, Mike Nester. Mike is a student in the SUCCEED program at the University of Missouri-St. Louis. SUCCEED is a post-secondary program for students with disabilities, and welcomes students from throughout our region.
A limited amount of scholarship funding remains available this fiscal year (through June 30) from DSAGSL. Below is the scholarship criteria we have developed, and we encourage any interested applicants to visit DESE’s site for Bryce’s Law as well for additional info. You can download an application for a DSAGSL scholarship here. Please direct any questions about this program to Jeremie Ballinger at 314.961.2504 or firstname.lastname@example.org.
Criteria for the Scholarship and Assistance Program:
A pool of funds are available annually through the Down Syndrome Association of Greater St. Louis. Please note that all funds are available as they become available each fiscal year, and that each case is considered as it arrives in our office based on the remaining funds available.
Scholarships are available based on the criteria outlined in Bryce’s Law (Section 161.825 RSMo). Full details can be obtained through the Missouri Department of Elementary & Secondary Education via phone, email or the DESE website. DSAGSL has identified the following criteria in addition to Bryce’s Law standards:
DSAGSL Scholarship Determination Criteria
- Scholarship recipients will have a diagnosed genetic / chromosomal condition
- Including, but not limited to: Down syndrome, Fragile X Syndrome, Turner syndrome, Williams Syndrome, Angelman syndrome
- Recipients, within their application packet, will present a documented need both financially and educationally
- Scholarship recipients will reside within the Greater St. Louis area. In addition to the defined metro area, Greater St. Louis includes cities that have a recognized DSAGSL Community Group.
- Scholarships are available to applicants of any age, given they meet our additional criteria
- Additional criteria may be determined by DSAGSL, its board and staff based on any combination of factors, such as the amount of scholarship funding available or the number of applications received.
- The scholarship funds awarded are to be used solely to pay for educational and job training expenses.
- All scholarship awards will be paid directly to the institution or service provider.
- Scholarship awards must be used in the 12-month period following the date of application. Should an award winner seek the renewal of a scholarship, a new application must be submitted. Previous receipt of a DSAGSL scholarship does not guarantee nor prohibit a person from receiving an additional scholarship.
Receiving the News…
We had waited almost 10 years before deciding to have another child. I had two other healthy children with little complications, so I never gave much thought about possible issues. I didn’t consider myself to be an “older” mother at age 34. When my doctor first asked if we wanted an amnio because of my age, we said no. We waited this long and didn’t want to run the risk of a complication from an amnio as the results wouldn’t have made a difference. However, our triple screen came back as a high probability that our baby would have Down syndrome. So, again, he recommended an amnio to confirm and either put it to rest or help prepare. We agreed even though the outcome would not make a difference.
One evening during church, something happened to both my husband and I that we felt was God’s way of letting us know we were about to receive a special gift. Our church gives a blessing to each expectant mother, along with a rose to put in a vase at the feet of the Blessed Mother. Something made both of us look at that vase at the same time and we realized our rose was the only one different from the rest. It was white, pure and beautiful! I think we knew then what our results would be.
Our official results came sooner than we expected which in fact only meant one thing. It was a long quiet drive to the appointment, and it was far from typical. The tech was somber asking if we needed anything, and I wasn’t in the same waiting room as other moms. When the doctor came in and gave us the news, and I immediately burst in to tears. I wasn’t sure if I was crying because my baby was not going to be like my other children or just relief I had an answer. My husband asked “What is it?”, meaning Down syndrome, and the doctor misunderstood and said, “It’s a girl!” From that moment I was suddenly filled with an immense feeling of joy! Not that I wouldn’t have been if he said it was a boy, but for some reason I felt a bit more peaceful and excited. The choice had already been made for us, God has made the choice.
The joy I had felt earlier left me for a while. For many days I was afraid, I felt guilty – asking what I had done wrong, and mostly thinking our lives were going to change forever. I went through all of the emotional stages of grief and loss. So many people told us they were so sorry when they heard the news. Then I would get angry with them for saying they were sorry. Sorry for what? What’s that supposed to mean? Are people going to feel sorry for us and Emily for the rest of our lives? I never showed my anger but it was certainly there. I had never had anyone feel sorry for me in my life, I didn’t want to start now.
I tried to read up on Down syndrome and become “educated and prepared,” but I found myself being overwhelmed and would throw the books down, never wanting to read anything in the pages. Then, I spoke to someone at the DSAGSL and they told me to stop reading and focus on having a baby. It was the best advice I ever received. I began to enjoy my pregnancy as much as I could. I knew Emily was going to be special from the time I saw that white rose. I was right, our lives have never been the same since, and we love it! I’ve often been asked if I would have preferred not knowing her diagnosis until after she was born. I think it’s different for different people. Personally, I was happy knowing ahead of time. I could focus on my tiny, new, baby girl and not the shock of a diagnosis. I learned how strong I could really be.
Why Down Syndrome Awareness is Important…
The biggest thing I can think of in promoting Down Syndrome Awareness is the fact that Down syndrome is a diagnosis, it doesn’t define who the person is. I’ve heard people refer to Emily and people like her as a “Downs Kid.” What’s that supposed to mean? You wouldn’t go around saying “cancer kid” or “Cystic Fibrosis kid”. It’s not who they are! Emily has the same sense of humor as my husband and daughter, and she looks just like her big sister, Ellen. She’s part of our family like anyone else is a part of our family. Several years ago, a co-worker said to me, “You know, I’ve never known anyone with Down syndrome before. The more I get to know Emily the more I realize she’s just a Diveley, she’s just like you guys! But she happens to have Down syndrome!” That’s the way I want other people to see her and others like her. I want people to become more aware, so they see the person FIRST as a person and the Down syndrome LAST.
How We Make a Difference…
We have never sheltered Emily. When we go somewhere, she goes along. We let her experience as much in life that she’s physically able to as we did her older sister and brother. We do this for two reasons. First, we want to make sure she has the socialization skills to interact with people in the real world even after we’re gone. Coddling her, treating her like glass will do her no good. She knows how to act when we go to a restaurant because we have taught her from early on, just like we did our other children. We want her to enjoy the same things in life like everyone else to the best of her ability, especially now since she’s in high school. Second, when we take her out, the world gets to see what people with Down syndrome are really like, which is pretty much like you and me. I push for integration in her school (fortunately I don’t have to push hard) so she can have the same experiences the other kids have.
I’ll never forget letting her go to the Homecoming Dance this year at school. I was nervous because the supervision would be a bit different than a normal day at school. But I knew she could hold her own and she was going to be with the kids she walks the halls with at school every day. And because of the interaction she has with the other kids in school on a daily basis, I knew they would look out for her and make sure she had a great time. She is their friend, their peer. They think she is funny. They know she loves to dance. She’s just another one of them, but she happens to have Down syndrome. Bringing kids together from very early on makes a big difference in how they will interact with each other and how our kids will get along in the real world. Because we’ve always included her and the kids at school include her, when we go out in our community, we are referred to as “Emily’s Mom and Dad,” we no longer have names, and she knows everyone!
About my Emily…
Emily’s personality is my favorite thing about her as a whole person. There are so many wonderful aspects of her personality that it’s hard to name just one. But if I had to, it would be her quick and very witty sense of humor! She always has us in stitches. She is the knock-knock joke queen and laughs just as hard at herself as we do at her! She has the ability to change the entire atmosphere in a room when she walks in. When Emily is around, you know she’s there! She lights up the room with her smile and will pull you up when you didn’t think you had anything left in you to smile about!
If I Had One Thing to Share…
I would want people to know that having Emily in our lives has brought us more joy than we could have imagined. As afraid as we were when we received the news one October day in 1998, we would have never thought we would be where we are today. She has taught us more about life, compassion, love, thoughtfulness and patience. We have learned to slow down and enjoy the smallest of things. There is no reason for anyone to be sorry for her or for us. We have been fortunate that she has not had near the health problems that some kids with Down syndrome can have.
We should never assume that anyone with Down syndrome can’t do what other people can do. We all have our strengths and weaknesses, but that doesn’t make us any more or less of a person than anyone else. For all the new parents reading this, slow down! Love your baby because they are after all a baby first, and never put limitations on them.
I learned this valuable lesson at one of Emily’s genetics appointments when she was a baby. The doctor told me to not expect her to roll over any time soon and I accepted that. That very night, she rolled over. That was the last time I let anyone tell me what Emily “COULDN’T” do!
Lindsey: I plan to hangout with my friends at a bowling event.
Paige: I donated my art work to St. Louis Children’s Hospital as a random act of kindness, and I plan to hang out with friends.
2. What does the day mean to you?
Lindsey: It means helping others like I do at the Down Syndrome Association office to celebrate the day.
Paige: I feel it is a day to create awareness for people with Down syndrome.
3. Why should everyone celebrate World Down Syndrome Day?
Lindsey: It shows kindness and helping each other to our community.
Paige: To me, it is really fun to help others.
4. What are your plans to celebrate for this year?
Lindsey: Encourage others by sharing stories and events. I hope to inspire others to do activities, too!
Paige: My plan is to gain more information on how to help others!