Behavioral challenges and individuals with Down syndrome

Discovering working behavior strategies for your family

Although the behavioral challenges seen in children with Down syndrome are often not much different from those seen with typically developing children, they may occur later in life and have a longer duration of presence. While the definition of a behavior problem may vary by child, certain guidelines can help in determining if a particular behavior may have developed to be significant – such as if it interferes with development or learning, is disruptive to others in the family/school/workplace or may be potentially harmful to the child.

When deciding how best to approach behavior management for a child, parents should first consider if there are outside factors contributing (i.e. health issues) and then understand  what should be expected when making a transition into strategies to change behavior.

Recently, the DSAGSL was lucky enough to have Lisa Gilbertson, BCBA, LBA, from Behavior Solutions in St. Louis attend our second Education Specialist session to talk about effective behavior strategies for children with Down syndrome. Lisa’s presentation provided our attendees with valuable information to take back to their schools and parents. We summarize some of the key understandings about approaching behavior strategy implementation:

What to expect when changing behavior and understanding behavior characteristics

  • One of the most important things to realize is that behavior didn’t become a problem overnight and won’t be fixed in that timeframe, either. It is possible that the behavior could get worse before it gets better, can change or can improve more quickly than expected – so be prepared to roll with the punches.
  • All behaviors serve a purpose – they are the result of an interaction between biology and environment. Identifying the function and replacement for the behavior will help to start change it. The focus of changing the behavior should be on decreasing the likelihood of future behaviors.
  • The correct use of behavior strategies can lead to rapid changes in behavior – although some behaviors of concern may not cease quickly even with correct implementation. If the environment reinforces the behavior, it becomes more likely to occur; conversely, if punished with a consequence the behavior becomes less likely

Goals and steps in behavior intervention

  • Behavior intervention has two main goals: teach skills that are needed that meet the same needs as the behavior and reduce the behavior itself.
  • As stated above, defining and measuring the behavior will help to understand specific behaviors and any external causes, but is also useful in measuring the effectiveness of a future behavior strategy
  • Once the behavior is identified, a parent can work with a behavior specialist to develop and implement a behavior intervention plan which is both cause specific and individualized for the child.
  • Established behavior plans should be closely monitored, consistent and adjusted as needed.

Developing and using a behavior plan to teach new behavior

  • Behavior plans should identify function based strategies for the child and specify what to do for all possible outcomes of the tactics used.
  • Everyone involved, including parents and other caregivers, should be trained to be consistent in strategy and know how to monitor effects of the strategies on the recurring behavior.
  • If there is no initial improvement, first check with the consistency of the strategy implementation and then consider revision or change.

Changing behavior can seem overwhelming but it is important to know you and your child are not alone. If your family or school needs help or advice in determining behavior management solutions for an individual with special needs, contact the DSAGSL office at  314.261.9504.

Presentation on 10/18/2012 by Lisa Gilbertson, BCBA, LBA on behalf of Behavior Solutions: Effective Behavior Strategies for Common but Difficult Behavior Problems in Individuals with Down Syndrome, Managing Behavior

Down syndrome and autism spectrum disorder

Learning and growing with a dual diagnosis

As many parents of children with Down syndrome already know, there is a unique experience that goes along with parenthood. Outside exploring working strategies for learning, socialization and behavior, health issues continue to be something of a mystery in the early stages of a family’s life. Multiple pediatrician visits, screenings, tests and sometimes surgeries can accompany the beautiful first years of a child’s life when they are beginning to discover the world around them – bringing surprises around every turn.

St. Louis area mom Adrienne Bievenue, whose son Russell (14) was diagnosed with autism along with Down syndrome at a young age, knows all about that journey and what comes with the surprise of a dual diagnosis.

“We knew something was different about Russell before the medical diagnosis of autism but equated it to his poor vision,” Adrienne said. “Probably by the time he was 2 or 3 yrs old, another mom helped me to realize what Autism was and by the time Russell was 4 1/2 we saw Dr. Mantovani who confirmed Russell was autistic.”

A dual diagnosis of autism spectrum disorder (ASD) and Down syndrome (DS) can potentially be part of the answer to some of the questions a parent has about behavior, cognitive skills and health. In Russell’s case, it means he can struggle with transitions, situations, noises and communication skills – he has never spoken, but has communication skills to get his point across. However, even with the advancements in understanding a dual diagnosis, there are still times when questions pop up.

“Understanding what autism was and how it affects those who have it helped me,” Adrienne said. “Joan Medlen wrote a piece for Disability Solutions* about her son and the dual diagnosis years ago and that has been most helpful! As far as learning to help Russell, my best educator is Russell himself. I am his voice since he doesn’t have one. I am always ‘collecting data’ on him and relaying to others what his needs are. And when all else fails….Google is my friend.”

For families of children with a dual diagnosis of ASD-DS, the diagnosis can bring uncertainty and a lot of questions. For Adrienne, it has been learning that her son Russell had the diagnosis that has made her an advocate for her family and others who face the same questions she once did.

“My first step I took [after learning the dual diagnosis] was to educate the school and our family on how the autism combined with the DS is affecting Russell,” Adrienne said. “I always tell parents to go see a good developmental pediatrician, developmental psychologist or psychologist versed in autism and/or a pediatric neurologist to confirm the diagnosis of autism if they are concerned.”

Adrienne also makes sure to relay to new parents to make sure there is no medical issue masking as autism, such as obstructive sleep apnea, and encourages them to understand how autism affects learning and some habits can overlap with Down syndrome and not be autism. Most importantly, she says, those behaviors have to be dealt with, especially at school, or a child won’t learn to his/her potential.

If you are the parent of a child with a dual diagnosis of autism spectrum disorder and Down syndrome, please join Adrienne and other area parents, along with Life Skills/TouchPoints Autism Services and the DSAGSL, in a new support group meeting November 8. If interested, RSVP to Sherry Bowen at  314-432-6200

*To access the Joan Medlen piece Adrienne references, click here. (

National Down Syndrome Society, Dual Diagnosis of Down Syndrome and Autism;–Autism/
Interview with Adrienne Bievenue; mom of Russell

Teaching with a partner in technology

iPads give way to learning advancements for children with special needs

Gone are the days of books, paper and pencil being a teacher’s only tools in education. New technologies through the years have paved a path to more possibilities for educators and administrators alike, though some of the same challenges still faced special education teachers. Enter the iPad.

Since its release in April 2010, the Apple iPad has been widely used in special education classrooms around the United States (and beyond) to customize learning for students with special needs. Applications available for the iPad address some of the biggest barriers facing teachers and parents, including communication, speech, motor skills and much more. Naturally, districts, educators and parents are embracing iPad technology for individuals with special needs and searching for more resources to fill their need for information.

In the metro-area the Touch Technology Applications Conference, which was held in mid-September, brought together app developers, parents, professionals, parents and special educators to learn the ins and outs of specific applications before putting them to use. St. Louis area parents Lori and David Holbrook had the chance to speak at the conference and share how this technology has changed their daughter Hannah’s life.

“The Touch Technology conference here in St. Louis was a great tool for parents, therapists, teachers…to learn about new apps as well as using the iPad, or another computer tablet, as an AAC Device and/or a learning tool,” Lori said. “This technology is changing the future for our special needs kids as a wonderful tool for education and communication.”

Hannah has the diagnosis of Down syndrome, autism and apraxia of speech and her parents wanted to share her story to help others considering other forms of communication for their child with special needs. They say having the iPad has been a phenomenal tool that has opened up the door to her daughter’s world.

“It has changed our lives.  Hannah is able to interact with us, her peers, request food, toys, etc. She even orders her own food at McDonalds,” Lori said. “The iPad has given Hannah a voice, some independence, and has opened the door for us to understand and be able to see what she knows and understands.”

If you are interested in getting an iPad for your child, but are worried about the cost, there are a host of possibilities to obtain them for a reduced cost – or even for free. Apps for Children with Special Needs ( is currently doing a 40-day iPad giveaway and Variety Children’s Charity in St. Louis recently received a gift allowing funding for 15 iPad gifts for families in need (see the Variety website for details

For resources on applications for children with special needs, visit these sites:

Lori also is the creator of the CHAT Bag (CHAT standing for Children Have A Tool), a carrying bag that doubles as a protective case for an iPad – inspired by Hannah. Find out more about Lori, Hannah and the CHAT Bag on her

Lori Holbrook, mother of Hannah Holbrook
KSDK News Channel 5,
Touch Technology Conference:
ABC News,
Variety St. Louis,
Apps for Children with Special Needs,
Mom’s with Apps.

Rumor has it, inclusion is spreading through the halls

High school students are breaking the old stereotypes of Homecoming King and Queen

Each fall, high school students across the country focus their attentions on one thing: homecoming. Hallways buzz with talk about who will be on homecoming court and who will be king and queen. Pop culture and many personal experiences tell us that the students who best fit the stereotype of football team quarterback and cheerleading captain will take the crown. But some schools are showing everyone that stereotypes are meant to be broken.In a trend of inclusion that continues to rise each year, students with Down syndrome or other disabilities are being elected to their school’s homecoming court and coming out as king or queen. In the metro area, both Francis Howell North and Freeburg High School supported classmates and friends with Down syndrome as homecoming royalty.

“I knew all along that these were some very special kids who will truly make a difference in the world someday,” Diane Fingers, mom to FHN Homecoming King Cody Fingers, said. “but this homecoming season, they’ve proven just how incredible they are.”

Cody was put on the ballot by his classmates and was one of the top 7 write-in nominees, making him a contender for king. He was announced as king in front of the crowd who had gathered for the school’s homecoming football on Friday September 14, and again during the dance the following night. Diane, who is also a teacher at FHN, had the opportunity to talk to some of Cody’s classmates after the announcement. She found they didn’t vote for him to be nice, but, rather, because they see Cody for who he is and not just a classmate with Down syndrome.

“They see Cody first, not the Down syndrome,” Diane said. “but they understand that it’s a part of who he is. They like him for all that he is and isn’t; for all that he can do, and can’t.”

In Freeburg, IL, classmates of Shelby Wegrzyn have the same sentiment. Shelby is a cheerleader and was nominated by her teammates who see her as an inspiration. She and her parents welcomed the crown with open arms, and so did the students at Freeburg High School who cheered her on as she was awarded the title of Homecoming Queen the night of the dance.

Teenagers have the ability to teach us all life-lessons; this time of year the message of inclusion is loud and clear from stories such as these. However, stories that don’t make headlines are happening each day among these and many other students, teachers, parents, friends and family and each one counts. Inclusion isn’t just for homecoming season, so take notes and pass it on all year long.

Diane Fingers, mom of Cody Fingers and English teacher at Francis Howell North H.S.
Fox 2 News, fox2now.com
The Kansas City Star, kansascity.com
Photos courtesy of FHN journalism students