Down syndrome support services

What are the Treatments and Therapies for Down Syndrome?

While there is no cure for Down Syndrome, there are therapies, treatments, and educational support available to improve the quality of life of those affected. The exact course of treatment will depend on the individual, taking into account the person’s age, overall health, environment, and personal strengths and limitations.

Therapies for Down Syndrome

Unsurprisingly, early intervention produces the best results. Young children are constantly in the process of developing speech and motor habits; by acting early, parents can foster the appropriate physical and behavior skills so that they become a habit. Even before a child with Down Syndrome reaches school age, various therapies can help.

Speech-language Therapy

Speech-language therapy addresses communication and language skills by focusing on articulation, cognitive skills, and strengthening the oral muscles (tongue, lips). Speech-language therapy can be employed at the infant and toddler stages. The overall goal is to improve the child’s ability to communicate. One thing to watch out for in particular is hearing loss. Due to anatomical differences in children with Down Syndrome, they are prone to fluid retention behind the eardrum that can cause hearing loss. Even though the fluid can be drained, this sometimes-chronic condition exemplifies how a child’s learning of auditory language can be disrupted. The result is, of course, life-long difficulties in speech and understanding. Communication takes many forms, and your child’s specific needs will shape what is stressed during therapy sessions.

Physical Therapy

Physical therapy focuses on improving how a person moves. Because children and adults with Down Syndrome commonly have poor muscle tone and smaller hands, physical therapy can allay any difficulties caused by these traits. A physical therapy regimen will likely include strengthening and toning muscles, improving overall coordination and balance, and correcting posture.

Occupational Therapy

Like the name suggests, occupational therapy is designed to improve the day-to-day skills necessary for living a healthy life and successfully navigating society. Unlike physical therapists, occupational therapists work on improving fine motor skills and the performance of daily tasks like getting dressed, brushing one’s teeth, and eating. As the child gets older, the focus will shift to skills like writing and using a computer.

Assistive Technology

Assistive technology is a term used to describe devices that [help a person with a disability function better. These devices can be anything from hearing aids, pencil/pen grips, seat cushions and walking aids to large-button mobile phones and large-letter keyboards. Touchscreen tablets and computers are useful for children with Down Syndrome who struggle with performing fine motor movements. Educational software approaches learning via interaction and implementing sight, sound, and touch, which can make lessons more accessible and appealing.

Special Education

Children with Down Syndrome qualify for special education under the U.S. Individuals with Disabilities Education Act (IDEA). This means that educational services and accommodations should be made available to these children until they either finish high school or reach the age of 21. These services and accommodations will be delineated through an Individualized Education Plan (IEP) drawn up by the school, parents, and health professionals.

Treatments, Therapies, and Special Services Can Help People With Down Syndrome Manage Their Disabilities

For Children With Down Syndrome, Early Intervention Should Start as Soon as Possible

The federal law requires that states offer free, appropriate public education for all children with Down syndrome as part of the Individuals with Disabilities Education Act. The law includes coverage of early intervention services designed to help address the developmental delays children with Down syndrome face. Such services are available and should be started anytime after birth until the child turns 3, or until the child is eligible to enter kindergarten. (3) (Looking for one? Check out the National Early Childhood Technical Assistance Center’s helpful list of resources for families.) (4)

These programs provide children with Down syndrome the various types of therapies they need and that have been proven beneficial — including occupational therapy, physical therapy, and speech therapy. “Early intervention is so important,” says Michelle Sie Whitten, chief executive officer of the Global Down Syndrome Foundation in Denver. “It will dictate the trajectory for your child.”

The options that are available depend on the state you live in though, explains Dr. Vellody. Some states put a limit on how many therapist visits are allowed before the person with Down syndrome will need to use private insurance for coverage, he says.

But regardless of specific options, the goal of the baby’s first year is overall development. A developmental therapist will meet with the child two to four times per month to monitor motor skills and speech development, Vellody says.

A physical therapist or an occupational therapist will likely get involved when the child is between 6 months and 1 year old. Speech therapy isn’t as widely available and typically doesn’t start until the child is about 18 months old, Vellody says.

These therapy options are available until a child’s third birthday, when the public school districts provide disabilities services, Vellody says. “That gets a little bit more challenging because they aren’t necessarily going to be individual therapies.”

Rather than one-on-one sessions, there might be 5 to 10 kids working with one therapist, he says. But legally, children with disabilities (including Down syndrome) are entitled to free educational services to help them learn through the end of high school or until they turn 21 (whichever comes first).

Additionally some children may be eligible for an Individualized Educational Plan, or IEP, which includes a team of teachers, caregivers, a school psychologist, and the child’s parents working together to meet specific learning goals for that child.

Continuing or adding a combination of some or all of the following therapies can be helpful in early intervention programs throughout an individual’s lifetime if he or she has Down syndrome:

  • Physical Therapy The goals of physical therapy are to help build motor skills, increase muscle strength, and improve posture and balance. In children with Down syndrome this is important because a common characteristic of the disorder is low muscle tone, which if unaddressed can lead to long-term problems.
  • Speech-Language Therapy This type of therapy focuses on communication and language skills.
  • Occupational Therapy This type of therapy focuses on finding ways for individuals to compensate for their disabilities to manage everyday tasks.
  • Emotional and Behavioral Therapies These services help individuals manage behavioral problems, such as compulsive disorders or attention deficit hyperactivity disorder (ADHD), and other mental health issues.

Though schools are legally required to provide educational services that meet the needs of children with disabilities, depending on what services are available where you live and the individual needs of the child with Down syndrome, more specialized therapies may not be available from the government. In some cases these services may be covered by private insurance plans and in other cases the costs may fall to individuals and their families, Vellody notes.

Teens & Adults ( 13 years + )

As they get older…

Challenges change as children become teenagers and adults, and so do the opportunities for learning new skills. We hope you will find ideas here to help enrich the lives of teenagers and adults and foster independence. Individuals with Down syndrome may be interested in the self-advocacy resources, including our Self-Advocate Public Speaking Program and Partnership Advocacy Council, while parents, family members, and those who work with teenagers and adults will find information on a variety of subjects.

If you do not find what you need here, you are welcome to use our resource and referral service. We have helped families of teenagers and adults with a variety of questions, including health care issues, recreation opportunities, employment and housing resources, legal or financial planning referrals, and government benefits. If you need assistance, just call contact NADS.

Resources

Other Organizations Helping People with Down Syndrome

There are important organizations serving people with Down syndrome as part of their mission to help a larger community of people who are differently-abled. This is in addition to the international, national, and local Down syndrome-specific organizations. It is imperative for all of us to keep in mind that people with Down syndrome are not only constituents of a larger community of people who are differently-abled, but also part of their own unique geographic, ethnic and religious communities.

The Arc
Special Olympics
Dads Appreciating Down Syndrome (D.A.D.S.)
The International Down Syndrome Coalition (IDSC)

Photo courtesy of The Arc of Palm Beach County

The Arc

With more than 700 state and local chapters, The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. The Arc was formed in 1950 as a result of a grassroots movement led by parents who were frustrated with the lack of rights and services provided to their children with intellectual and developmental disabilities. Today, The Arc actively promotes and protects the human rights of people with intellectual and developmental disabilities and supports their full inclusion and participation in the community. At the national level, The Arc has been instrumental in crafting and influencing federal policy to ensure the rights of people with intellectual and developmental disabilities. A key example is The Arc’s leadership ensuring that students with disabilities receive a free and appropriate public education through the Individuals with Disabilities Education Act (“IDEA.”) In many states, local chapters of The Arc provide services such as early intervention programming, supported employment, day habilitation, and residential support. In other states, local chapters focus on individual and system advocacy. All state chapters of The Arc work to improve state policies affecting persons with disabilities. To learn more about The Arc please visit www.thearc.org.

Special Olympics

Tim Shriver, Chairman & CEO of Special Olympics, remembering the beginnings of Special Olympics:

“We had a camp in my parents’ house – my mother ran a camp she called it Camp Shriver. And the campers came in yellow school buses, and they came largely from institutions, they came from places that today would be considered inhumane. They came without parents, they came without family, and they came largely because there was nowhere else for them to go. If they wanted to swim in a swimming pool, or kick a kickball, or ride a pony, or run a race, there was nowhere.”

“Special Olympics athletes are spokespersons for freedom itself – they ask for the freedom to live, the freedom to belong, the freedom to contribute, the freedom to have a chance. And, of all the values that unite and inspire us to seek a better world, no value holds a higher place than the value of freedom.” Eunice Kennedy Shriver

Special Olympics was founded in 1968 by Eunice Kennedy Shriver during a time when people with intellectual disabilities were marginalized and commonly treated inhumanely. Eunice Kennedy Shriver and Special Olympics had an important message that still holds true – every person has value and people with intellectual disabilities can and will succeed if given the opportunity. Today the organization supports and celebrates the accomplishments of more than 3.7 million athletes worldwide. In addition to providing year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, Special Olympics is a global leader in healthcare, leadership training, legislative change, self-advocacy and employment opportunities for people with intellectual disabilities. To learn more about Special Olympics, please visit www.SpecialOlympics.org.

D.A.D.S. (Dads Appreciating Down Syndrome)

Dads Appreciating Down Syndrome, or D.A.D.S., is a group of 57 local committees and chapters (within a local Down syndrome support organization) of fathers of children who happen to have Down syndrome.

The foundational pillars of D.A.D.S. are Support, Action and Fellowship. Members are active in the community coaching their kids’ sports teams, participating in their children’s Individualized Education Programs, volunteering at local Down syndrome fundraisers, and sponsoring fundraisers of their own.

The cornerstone of D.A.D.S. groups is a monthly meeting at which members share insights and experiences. The groups invite speakers to discuss medical, educational, financial, social, and any other issues that affect the lives of members’ children. And members share stories and experiences that are unique to fathers of children with Down syndrome.

To learn more about D.A.D.S. please visit www.dadsnational.org

IDSC (International Down Syndrome Coalition)

The International Down Syndrome Coalition (IDSC) is dedicated to helping and advocating for individuals with Down syndrome from conception and throughout life. We promote the dignity and respect of individuals with DS and assist the families who love them. We provide support, education and connection to other families as well as to local resources. The IDSC operates and advocates independent of any political cause or religious affiliation and we welcome all to our community.

To learn more about IDSC please visit theidsc.org

10 Helpful Down Syndrome Resources

Down syndrome (DS) is a genetic disorder that causes developmental delays ranging from moderate to severe. The disorder is rarely inherited, but instead caused by abnormal “cell division during the development of the egg, sperm or embryo,” according to the Mayo Clinic. Children with the disorder also suffer some degree of lifelong intellectual disability, making it one of the most common causes of learning disabilities in children. Though infants born with Down syndrome are considered average size, they tend to grow more slowly and achieve developmental milestones at about twice the age of children without the disorder. Early recognition and personal education of Down syndrome is critical in caring for children born with special needs.

Whether you are the parent of a child with DS or a special needs caregiver, connecting with DS-focused organizations and others with first-hand experience caring for a child with Down syndrome is an important step in understanding the potential challenges and triumphs ahead. Here are some notable organizations and support groups that are a good place to start.

  1. National Down Syndrome Congress (NDSC)
    This is the oldest organization and support group in the United States for those affected by Down syndrome. NDSC focuses not only on those with the disorder and their relatives, but also the professionals who work with them. They advocate for those with Down syndrome through education, legislation, medical care and disability awareness. Expectant or new parents can access tons of useful information and advice to help them navigate their journey while also offering general education, healthcare, and speech-related resources for Down syndrome.

  2. National Down Syndrome Society (NDSS)
    The National Down Syndrome Society is known as the “national advocate for the value, acceptance and inclusion” of those living with Down syndrome. In addition to the informative articles on the website, you can read personal stories, help raise funds for Down syndrome research and awareness, find support groups in your area and sign up to receive their e-newsletter and stay in the loop with all the latest Down syndrome news and information.

  3. DownSyndrome.com
    This is a website fully-focused on children living with Down syndrome, their caregivers and the support and joy that can be gained by connecting with others affected by this syndrome. Visitors to the site are encouraged to create a user profile, post pictures and ask questions to other site members to help gain insight into their own personal experiences. Connecting people and forming friendships is their main goal.

  4. Association for Children with Down Syndrome (ACDS)
    This organization provides lifelong resources for individuals with Down syndrome and their families. ACDS is an educational facility located in New York with three distinct programs: preschool (from birth to age 5), 5 Plus (for ages 5 and up), and Individualized Residential Alternatives (IRAs) for adults.

  5. International Mosaic Down Syndrome Society (IMDSS)
    For those with children who have been diagnosed with mosaic Down syndrome (mDs), the International Mosaic Down Syndrome Society is an organization completely dedicated to this rare form of the disorder. Parents can join the website and connect with others in their state with children or family members with mDs, while medical professionals can connect with others who care for mDs patients and obtain information and the latest research on all things MDS.

  6. National Association for Down Syndrome (NADS)
    NADS offers specific support for new parents and grandparents, as well as parents of teenagers and adults with Down syndrome. NADS provides mentoring programs, parent support groups, parent workshops, family retreats, and work experience programs for those living in the Chicago area, but their website contains educational information and helpful links to everything Down syndrome-related.

  7. Down Syndrome Research and Treatment Foundation (DSRTF)
    DSRTF is dedicated to finding a treatment to improve learning, speech, and memory for those living with Down syndrome. Since it began in 2004, DSRTF is the leading private source of funding in the United States for Down syndrome cognition research, according to their website. Research Down syndrome on the site, get involved by making a monetary donation or sign up to participate in one of their community events to raise awareness of Down syndrome.

  8. Down Syndrome Research Foundation (DSRF)
    DSRF helps those with Down syndrome reach their full potential in life by empowering them through educational programs and services. The organization is focused on understanding the learning styles of those with Down syndrome and supporting parents of DS children. Children can enroll in a variety of classes specifically designed for them, including reading, music, communication and language programs.

  9. The Arc
    The Arc is an organization created for those with Down syndrome, and anyone else with intellectual and developmental disabilities. With over 700 chapters nationwide, anyone touched by Down syndrome can search their online directory to find local support and guidance.

  10. Uno Mas!
    Uno Mas! is strictly an online forum dedicated to supporting the caregivers of children with Down syndrome. The message board is broken down into health and medical issues, general DS information, education-related topics, as well as a book club and get-together sections.

Researching Down syndrome is an essential first step towards educating yourself about the disorder and its potential challenges. Find support from others in your situation by contacting any reputable Down syndrome organization to gain insight and knowledge, as well as share personal experiences. Though finding out your child has Down syndrome may be surprising, with adequate love and support you and your child can live a happy and fulfilling life together.

Mary Evett is a freelance writer covering all things Houston. Her work can be found here.

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