Frequently Asked Questions

Down syndrome is a genetic condition in which a child is born with an extra copy of chromosome 21. As a result, certain genes on chromosome 21 are over-expressed, which can impact an individual in various ways, including physical appearance, development, and health.

Approximately 1 in 800 babies born in Canada has Down syndrome. There are currently approximately 45,000 Canadians with Down syndrome.

Down syndrome is a genetic condition that occurs naturally; there is nothing that parents can do to either cause or prevent Down syndrome. Genetically, there are three types of Down syndrome:

• Trisomy 21: The most common type of Down syndrome, in which the person has a complete extra copy of the 21st chromosome
• Translocation: A rarer type of Down syndrome, in which an additional full or partial copy of chromosome 21 is attached to a different chromosome (2-3% of people with Down syndrome)
• Mosaicism: The rarest type of Down syndrome, in which only some cells in the body have a full extra copy of the 21st chromosome, and the rest of the cells are typical (1% of people with Down syndrome)

Down syndrome affects each person differently. No single individual is likely to exhibit all the characteristics commonly associated with Down syndrome.

Common Physical Characteristics:

• flat bridge of the nose
• Simian crease on the palms
• extra space between the big toe and adjacent toe
• an extra fold of skin around the eyes
• widely spaced and upward-slanting eyes
• straight hair
• structural differences in the mouth and ears
• short stature

Common Developmental Concerns:

• neurological and cognitive differences
• mild to moderate intellectual delays
• behavioural issues
• speech deficits
• memory impairment
• higher prevalence of autism spectrum disorder

Common Health Concerns:

• heart defects
• vision and hearing impairment
• thyroid problems
• respiratory issues
• sleep disorders
• mental health issues
• gastrointestinal issues
• dental problems
• childhood leukemia
• early-onset Alzheimer’s and dementia

We have made tremendous strides in increasing the expected lifespan of a person with Down syndrome. As recently as 1980, life expectancy for an individual with Down syndrome was just 25 years. Today, it is 65 years.

There are no levels of Down syndrome (i.e., more severe or less severe), but Down syndrome affects every individual differently. For example, some people may display more of the common physical characteristics of Down syndrome than others while having milder cognitive or health impacts, or vice versa.

There is no cure for Down syndrome; it is a lifelong condition. However, treatments for many of the medical conditions associated with Down syndrome continuously evolve and improve, increasing the expected lifespan of a person born with Down syndrome. In addition, a better understanding of Down syndrome, developments in therapy and education, and shifting societal norms mean that people with Down syndrome have more opportunities than ever before.

Though people with Down syndrome may share some common characteristics, each one is a unique individual with distinct personalities, hopes, dreams, and interests. People with Down syndrome can expect to live long, happy lives, including education, meaningful work, community involvement, and rich social connections.

In Canada, we refer to it as Down syndrome. Down syndrome is named after John Langdon Down, who did not have Down syndrome, so we do not use the possessive “Down’s.” However, in some other countries such as the UK, the condition is referred to as Down’s syndrome.

Use people-first language, such as “person with Down syndrome” or “individual with Down syndrome.” People with Down syndrome are not defined by having Down syndrome, nor do they suffer from Down syndrome. They simply have Down syndrome. Click here to download our preferred language guide.

Speech relies on the coordination of breathing, muscles of the face, and the ability to make sounds representing the ideas a person wants to express. Due to differences in muscle tone, learning, memory, and structure of the face, speech development is an area of particular challenge for people with Down syndrome. See our speech development page for more information.

Finding the best match for a person depends on age, ability to point accurately, ability to recognize symbols or words, and ability to write or type. Working with a Speech-Language Pathologist (SLP) is a great way to trial options and discover what works best for your child. See our Augmentative and Alternative Communication (AAC) page for more information.

There are many sign language resources available for both children and adults. Children often enjoy Signing Time, and adults can find support through classes at community colleges or sign language dictionaries. See Signing Savvy for a great dictionary reference. See our AAC page for more information.

Yes! Children with Down syndrome can successfully learn and grow in a multi-language environment. We recommend that parents speak the language that they are the most comfortable and fluent in with their child, even if the school language differs. When considering language immersion programs, assess whether there is adequate support in both the immersion language and academics learned in that setting. See our language development page for more information.

OTs work in early intervention (from birth) across the life span, supporting individuals with a range of goals that are meaningful and functional in relation to their current needs. This could mean focusing on feeding skills with your baby or young child, academic skills (eg. printing) with your school aged child, life skills (eg. wayfinding) with your teenager, home independence skills (eg. meal preparation) with your young adult, or modifying the home environment to support aging adults.

Sensory processing refers to the ability to take in, organize, and make sense of the sensory information received by the brain from the sensory systems, and respond appropriately (O’Donnell, Deitz, Kartin, Nalty & Dawson, 2012). Research suggests that approximately 49% of individuals with Down syndrome experience sensory processing challenges, compared to 5-16% of the general population (Bruni, Cameron, Dua & Noy, 2010). Individuals with challenges in this area may experience reduced participation in daily activities, increased levels of anxiety or frustration, impaired self-esteem, and difficulties with self-regulation. OTs can help to assess and identify a person’s sensory preferences, develop strategies to meet their sensory needs, and ultimately support their ability to successfully engage, participate, and develop their skills.

References:

Bruni, M., Cameron, D., Dua, S., & Noy, S. (2010). Reported sensory processing of children with down syndrome. Physical & Occupational Therapy in Pediatrics, 30, 280-293.

O’Donnell, S., Deitz, J., Kartin, D., Nalty, T., & Dawson, G. (2012). Sensory processing, problem behavior, adaptive behavior, and cognition in preschool children with autism spectrum disorders.

Appropriate mental health supports vary widely from person to person. View our mental wellness page to learn more about mental health and Down syndrome or request a one-time mental health consultation.

The most concerning behaviours are those that endanger the safety of the child or others, or those that significantly impede the child or family’s quality of life. Whether target behaviours are severe or moderate, positive behaviour support (PBS) can help. PBS services are designed to help families who would like to learn strategies to address behaviour challenges and/or would like to support their children in learning new skills. PBS can also help increase the range of activities a family can enjoy together. View our behaviour page to learn more about positive behaviour support.

Going to school is a huge step in a child’s life. Peer group experience, practice with following an other-directed routine, a way to communicate with others (signs, words, or AAC), and independence skills in the areas of dressing, feeding, and toileting help set your child up for a successful transition. When you register for school, make sure to mention that your child has Down syndrome and that you would like to tour the classroom or school ahead of your start date. Use videos or photos of the school area to help your child become familiar with their new environment. Opportunities to meet school staff ahead of school entry are also helpful. View our education page for more information.

The first point of contact should be your child’s classroom teacher. You can request an assessment through school-based therapists or even ask for a home/community therapist to provide a consultation. The ability for external therapists to collaborate with the school team will vary depending on school district policies. If you feel your child requires more educational support (such as an Education Assistant), speak with your child’s school principal.

The Down Syndrome Resource Foundation offers leading-edge educational programs, health services, and information resources to help people with Down syndrome flourish at each stage of life and their families to face the future with confidence.

DSRF provides:

• One to one services for individuals and families at all stages of life
• Group programs for youth and adults with Down syndrome
• Down syndrome resources to equip parents, caregivers, and professionals

DSRF supports people with Down syndrome and their families at every age through information resources. Our programs and services begin at birth and extend through early adulthood.

The Down Syndrome Resource Foundation is located in Burnaby, British Columbia.

At this time, DSRF offers in-person programs and services in the Lower Mainland, and Kelowna, BC. Virtual services are available to families in other parts of British Columbia, while our extensive array of online resources is available and free of charge to anyone in the world.

DSRF partners with Down syndrome organizations in other areas of Canada, providing training and sharing resources to help local organizations establish or strengthen programs and services in their region. Contact programs@DSRF.org for more information.

For clients and families whose primary language is something other than English, we offer in person translation services for important meetings with DSRF service providers. Some therapists and teachers are able to provide services in alternate languages. Please email us for details.

Yes! Family and friends are welcome to request a brief tour of the DSRF facilities. Please click here to request a tour. Once you have completed the request, a DSRF staff member will contact you to set up a day and time for the tour.

Register online for DSRF’s individual (one to one) services at DSRF.org/Register. Register for group programs at DSRF.org/GroupPrograms.

Here at DSRF, we know two things for sure: having a diagnosis of Down syndrome is complex, and each family is unique. The family intake meeting is the first point of contact between DSRF service providers and your family. This meeting is designed to:

• thoroughly review your child’s history and development with a team of professionals who specialize in Down syndrome
• understand your needs and priorities as a family
• provide critical health and funding information so that you can access needed supports
• match the needs of your family with the DSRF specialists who can best meet your needs

*This meeting is between the parents/caregivers and DSRF’s interdisciplinary team. It is not an assessment; please do not bring your child to this meeting.

Yes, the Down Syndrome Resource Foundation is a registered charitable organization in Canada and the United States. All donations are 100% tax-deductible.

Canadian Charitable Number – 898907266RR0001; US Charitable Number – 98-0594983

There are many ways to support DSRF, including personal and corporate donations, grants, event sponsorships, and more. Become a Triple-21 partner and donate monthly. Please visit the “Support DSRF” tab for more information, or email Jason Campbell, Director of Development, at jason@DSRF.org.

We also require many volunteers throughout the year for programs and events. Please email info@DSRF.org for information on volunteer opportunities.