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Thriving with Down Syndrome: Essential Tips for Success

Updated: Oct 3, 2024


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What is Down Syndrome?

Down Syndrome is a genetic disorder caused by an extra chromosome in the 21st chromosome pair. For each gene, one chromosome from each parent is needed to guide the development of the structure and functions of the human body.


An extra chromosome changes the structure and function development, which causes physical changes and mental challenges. However, in many instances, having them around or as seen online shows that they are more known for their incredible talents and their friendly and warm nature.


Many in the spectrum often experience congenital heart defects, hearing loss, and obstructive sleep apnea, which is essential to be aware of to avoid any complications in the future. No apparent risk factors or the different factors contribute to the condition. Still, the risk of Down Syndrome increases with age, but it can occur at any age. 


Early intervention, routine health check-ups, and support from healthcare professionals can significantly enhance the quality of life. Numerous screening tests and diagnostic options are available. Always consult your doctor for personalized advice and more information.


Living with Down Syndrome means embracing a supportive, informed approach to ensure a fulfilling, healthy life.




Inspiring Stories that moves you

Sometimes, we all need real-life stories that move us, showing us that WE can surmount anything. Reading the success stories of these numerous talented individuals will show you that ANYTHING IS POSSIBLE. Read the following website to be inspired right now!!:




Management Tips


Reward: Using rewards to motivate people with Down Syndrome can be an excellent tool for influencing them to do a particular activity or behaviour. Promising them an activity or treat they enjoy is the best way to go! 

Cue when to do this: Behavioural difficulties  (Situation, Behaviour, and Strategy)

Situation: Situations of negative behaviours, like refusal to cooperate, tantrums, or aggression. 

Behaviour: outbursts, refusal to follow instructions, and disruptive behaviour 

Strategy: 

  • Use a reward system to motivate positive behaviours 

  • Use what they like as the rewards to motivate them further


Keep a routine: A visual schedule can help children with Down Syndrome minimize negative behaviour. Sticking to the system can make it easier for them to follow what they need to do by prepping them visually (pictures, symbols, or showing them yourself) for the next thing they need to do. You can enforce a reward system for this so it’s more likely for them to stick to the schedule. 

Cue when to do this: Struggles to follow Instructions or Routine (Situation, Behaviour, and Strategy)

Situation: Have difficulty doing daily tasks and transitioning between activities 

Behaviour: Have tantrums, contradicting instructions, and confusion about what to do next.

Strategy: 

  • Have visual cues of daily activities

  • Have a visual schedule that is visually appealing (use the things they like to your advantage)


Planning difficult situations: For many individuals on the spectrum, anxiety, and behavior problems often arise when they don’t know what to expect from certain new events. To fix this, using social stories regarding the event, like going to school, can help them ease and understand what to expect. 

Cue when to do this: Signs of anxiety or uncertainty (Situation, Behaviour, and Strategy)



Give them a choice: It’s essential to give children with Down Syndrome a choice, as it can make them feel empowered rather than inferior. This way, any negative triggers can be avoided. These choices can be simple, like giving them choices about what to wear for school.

Cue when to do this: Desire for independence (Situation, Behaviour, and Strategy)

Situation: When they are frustrated with being told what to do and showing the desire to be independent. 

Behaviour: They want control of situations, do not follow directives, and do not express preferences. 

Strategy: 

  • Give options that meet what they want and what is best for them so they do not feel inferior




Caregiver Tips


Communicate creatively: Signalong, Makaton, or PECS are the best ways to help individuals on the spectrum communicate effectively and are engaging for them! 


Regular doctor visits: they need regular checkups for any conditions they are susceptible to. Therefore, making a calendar for the year regarding the checkups and making those appointments in one sitting can save a lot of trouble!


Boost their confidence: It’s important that people on the spectrum believe that they can do anything they aspire to do. One way to boost their confidence is to praise them for what they genuinely like.


Show, not tell: It’s important that anything you instruct them to do is easy to understand. The best way to do this is by showing them how to do it rather than telling them the instructions.




Support Groups other than 'Thriving Beyond Diagnosis'


This organization has a significant number of support groups for different audiences. There are support groups for upcoming parents or parents with Down syndrome, which is a platform to make sure they are ready for the best they can once the baby arrives. There are also programs for children, teens, and adults as a way to have it as a support group. Resources, support, camps, and programs are also a significant platform for DSAT. 


Down Syndrome International has many partners all over the globe, making sure most people have the awards and support they need. There are plenty of projects Down Syndrome Internal has that can bring people together and be the support group they need.  


If the following does not have the support group you are looking for, search “support groups for Down syndrome (your city).


Worried About Joining a Support Group? Don’t Be!

Many Down Syndrome support groups are specifically trained to welcome newcomers who share the same concerns and fears. They truly understand what you’re going through and are more than ready to offer their support. Don’t hesitate to reach out—they’re here to help you every step of the way!


Resources


Employment

This organization employs individuals with Down Syndrome who are experiencing barriers within the employment field. They help people with Down syndrome find work by connecting them to various workplaces that appreciate what people with Down syndrome have to offer cause there is a lot!! 


Number: 1-800-883-5608


Here is an international version of employment availability for Down Syndrome individuals - International employment



The Down Syndrome Resource Foundation is passionate about ensuring that people with Down syndrome and their families have the necessities. For instance, they provide personalized and fantastic educational programs that can greatly improve education for people with Down syndrome. They also provide health services, information resources, and great social connections. 


Number: (604) 444- 3773


There are many more resources available for the Down Syndrome Community with just a click!


Use this format, “Resources for Down Syndrome in (your city)”


Reference


Centers for Disease Control and Prevention. (n.d.). Down syndrome. Centers for Disease Control and Prevention. https://www.cdc.gov/birth-defects/about/down-syndrome.html


CoorDown. (n.d.). ASSUME THAT I CAN | World Down Syndrome Day 2024. YouTube. https://www.youtube.com/watch?v=9HpLhxMFJR8


Down Syndrome Resource Foundation                2 weeks ago                    As we reach the midway point of summer, Down Syndrome Resource Foundation                2 weeks ago, Down Syndrome Resource Foundation, Down Syndrome Resource Foundation                3 weeks ago                    Barbie has introduced a new Black Barbie with Down syndrome, Down Syndrome Resource Foundation                3 weeks ago, & Down Syndrome Resource Foundation                3 weeks ago                    DSRF alumnus Lauren Simpson has taken a leading role in the fight for an affordable. (2024, August 2). Home. Down Syndrome Resource Foundation. https://www.dsrf.org/


Dr. Sayeed, I. (2022, December 17). 6 behaviour management tips for children with downs syndrome. The VIOS Clinic. https://www.viosapp.com/managing-children-with-downs-syndrome/


Employment. Down Syndrome International. (n.d.-a). https://ds-int.org/employment/


Home. (n.d.). https://makaton.org/


Home. Signalong The Communication Charity. (n.d.). https://www.signalong.org.uk/


Inployable. Canadian Down Syndrome Society. (2024, July 9). https://cdss.ca/inployable/



Organisation members. Down Syndrome International. (n.d.-b). https://ds-int.org/network-member-organisations/


Picture Exchange Communication System (PECS). Pyramid Educational Consultants UK. (2024, May 16). https://pecs-unitedkingdom.com/pecs/


Resources and support. The Down Syndrome Association of Toronto (DSAT). (2023, November 20). https://dsat.ca/resources-and-support/


Shepherd, E. (2023, September 14). 10 famous and successful people with Down’s syndrome. Disability Horizons. https://disabilityhorizons.com/2022/10/10-famous-and-successful-people-with-downs-syndrome/


 
 
 

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