Behavior and Social Support Needs for Individuals with Down Syndrome

Reality versus Misconception

Countless misconceptions exist about individuals with Down Syndrome, especially those about their state mind and  their intellectual ability The National Down Syndrome Society website seeks to counter these stereotypes with useful information on myths and facts about Down Syndrome.

While the representation of those with Down Syndrome in media continues to perpetuate these stereotypes, it is not representative of the community, which consists of a range of needs. Within my role as a sleep psychologist as a member of Texas Children’s Multidisciplinary Obstructive Sleep Apnea (MOSA) team, I support our patients, their families and the medical team for a variety of behavioral and social needs. 

Common Symptoms of Down Syndrome

Individuals with Down Syndrome may present with these conditions:

• Mild to moderate intellectual disabilities
• Developmental delays in speech, fine and gross motor skills
• A hearing impairment which may be aided by hearing aids or a cochlear implant
• Medical comorbidities, such as congenital heart defects, obstructive sleep apnea, thyroid conditions, etc.
• Behavioral health concerns, such as autism, ADHD or anxiety. 

Presenting Behavioral Concerns

We may see higher rates of behavioral concerns with comorbid behavioral diagnoses of ADHD, autism and anxiety. Specifically, noncompliance, aggression, tantrums, self-injurious behaviors, etc. Behavior may occur following demands, transitions, or multiple triggers. A child may be more likely to present with challenging or disruptive behavior when they experience particular sensory input(s). For example, this can occur if they have a hearing impairment, and they are being introduced to sound for the first time. Or perhaps they are overwhelmed with large crowds or confined spaces such as an elevator. Sometimes those with a history of medical concerns may exhibit more behavior in the presence of medical equipment, hospital or clinic staff, a waiting room or even a lab coat based on prior experience. For someone who has limited communication and is learning what communication strategies work best for them, we may see increases in disruptive behavior. They may become frustrated with being misunderstood and their needs not being met. As a result of these concerns parents may observe noncompliance and other disruptive behaviors that generalizes to other situations and settings. 

Productive Treatments are Available

The good news is that there are behavioral treatments to manage these concerns. We learn best by consistent consequences for both appropriate and inappropriate behavior. Parent management training (PMT) is an evidence-based behavior therapy that is highly effective treatment for addressing concerns. For those that have higher needs and would benefit from more intensive services Applied Behavior Analysis (ABA) is recommended. 

Additionally, effective management of medical concerns, such as Obstructive Sleep Apnea is important as it can mimic or increase ADHD symptoms. I would recommend following up with your sleep provider or request a consult with our Multidisciplinary Obstructive Sleep Apnea (MOSA) team. I would also recommend continuing to work with the Down Syndrome Clinic, Psychiatry or your PCP for a medication consult if needed for behavioral health concerns to support any therapies that your child is receiving. 

Your PCP and/or the Down Syndrome Clinic could assist with identification of developmental concerns and providing referrals to speech pathologists, as well as, physical and occupational therapists. Deficits in developmental areas, such as communication can trigger disruptive behaviors. Incorporating a behavioral plan for behavior management and/or strategies for skill acquisition or teaching strategies can be helpful. Collaboration across therapists and behavioral health is recommended. 

Individuals with Down Syndrome present with a range of emotions and feelings just like everyone else. For some children and teens, they might be experiencing social and relationship concerns. It’s important to ensure open communication and not make assumptions about their needs. Discussing future goals, transition planning, friends, relationships, etc. If your child is experiencing difficulty with friends and/or relationships, pressure from school or other typical teen concerns they may benefit from behavioral and cognitive behavioral therapy (CBT). Having a space that it just theirs could be beneficial as they are learning to process and cope with these feelings. Or participating in group therapy or a social skills group for individuals with Down Syndrome. Many local resources are available in the Houston, such as Gigi’s Playhouse and others listed below. Others are statewide and some are national.

Because individuals with Down Syndrome have with a range of needs, we do not want to make any assumptions on what someone can and cannot do. If we assume that someone can’t do something, they will be less engaged and have more potential for behavioral concerns. I recommend that parents work closely with your child’s team of professionals, including your child’s school team to incorporate their goals within their IEP when possible.  Include your child to help determine what their strengths are and what their goals are.  Do they want to be in the band, join a club, try out for a sports team, go to college, have an apartment? Helping to understand their goals and interests as adolescents is great. Knowing their interests in childhood is even better. Do they want to have more playdates, play soccer, be in a play, learn to cook, independently buy something from the store, help navigate around the neighborhood, read a book, dance, swim? Helping them explore their interests can be very fun and very rewarding for all involved! 

The more we foster independence and build these skills and practice, the easier the later goals in adolescence and young adulthood become more attainable and supports overall behavioral health needs.

Resources

Galveston-Houston Families Exploring Down Syndrome

The mission of GHFEDS is to provide support and resources to individuals with Down syndrome and their families and to promote awareness, understanding and inclusion in their communities.

Down Syndrome Association of Houston

The mission of the Down Syndrome Association of Houston is to provide health education and advocacy resources and support to individuals with Down Syndrome, their families, and their communities.

Best Buddies

Offering One-to-One Friendship, Integrated Employment, and Leadership Development programs for Individuals with and without intellectual and developmental disabilities (IDD) in Texas.

Special Olympics

The mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in sharing gifts, skills and friendship with their families, other Special Olympics athletes and the community.

Gigi’s Playhouse

Mission: Lifetime commitment to changing lives and providing hope through the consistent delivery of FREE educational, therapeutic, and career development programs for individuals with Down syndrome, their families, and the community, using a replicable playhouse model.

The Arc of Texas

The Arc of Texas Promotes, protects, and advocates for the human rights and self-determination of Texans with IDD.

Texas Parent to Parent 

Texas Parent to Parent provides parent to parent support, information, resources, and education to families of children who have disabilities or chronic conditions.  

For more information, please call 512-458-8600 or 1-866-896-6000.

Navigate Life Texas  

Provides helpful information related to diagnosis, family support, and resources related to education, insurance, waivers, grants, transition, and other services in Texas. 

Medicaid Waivers

Waivers offer long-term home and community-based services for people with disabilities and special health care needs to help them live in the community. Texas has seven waivers and offers services such as behavioral support, adaptive aids, medical supplies, respite care, occupational therapy, physical therapy, speech therapy, minor home modifications, nursing, prevocational training, supported employment, transition assistance, assisted living, prescription drugs, residential services, day habilitation (help with basic life skills) and more. Each one has its own interest list. 

Consider adding your child/teen to all the interest lists if applicable as waivers are based on the identified diagnosis and current needs because you may not know what future needs your child might have.  Unlike other programs, many waivers are based on the child's income, not the family's income. We strongly recommend that you add your child to the waiver interest list(s) as the interest lists can be as long as 16 years or longer.