Supporting Someone with Down Syndrome

Supporting Someone with Down Syndrome

Down syndrome is one of the most common chromosomal conditions in Australia with up to 15,000 people living with the condition nationwide. The good news is increased research, awareness and support for people with Down syndrome has drastically improved and lengthened the lives of those with the condition over the past few decades but we still have more to learn.

Down Syndrome can be a debilitating illness that can limit one’s abilities to participate in everyday activities but with the right support, positive reinforcement, encouragement, social interaction and early intervention with therapy and treatment programs people with Down syndrome can live an independent and good quality of life.

If you or your loved one are affected by Down Syndrome, our Support Workers are highly skilled and trained to provide the assistance needed to live your life to the fullest.

What is Down Syndrome?

Down Syndrome, also known as Trisomy 21, occurs when a baby is born with an extra Chromosome 21 or an extra part of Chromosome 21. This is usually caused by an error in cell division during gestation and alters the course of development, resulting in the characteristics commonly associated with Down Syndrome. People with Down Syndrome may have differing levels of disability depending on the extent of the genetic mutation.

This additional chromosome can cause differing levels of intellectual disability, as well as a number of physical and developmental malformations, and a predisposition for other chronic illnesses. The common physical traits of Down Syndrome include low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the centre of the palm. Each individual with Down syndrome is unique and may possess any one of these characteristics to a certain degree or not at all.

How Can Down Syndrome be Improved?

Down syndrome is a chromosomal genetic disorder with no known cure but early intervention can help promote autonomy for people living with Down Syndrome so they can live more fulfilling lives. There is no single treatment for Down syndrome and treatments required will be based on each individual’s physical and intellectual needs as well as their personal strengths and limitations.

A child with Down syndrome will likely receive care from a team of health professionals with a spectrum of different treatments. Treatments can include programs such as:

  • Speech and language in the form of individual or group sessions 
  • Physical therapy can improve muscle strength, balance, coordination and movement skills.
  • Occupational and/or 
  • Educational therapy. 

With the right support and treatment people with Down syndrome can live happy and productive lives and proper care and treatment can be received while living at home and in the community.

What Behavioural Challenges Do People with Down syndrome Experience?

The extra 21 chromosome present is responsible for the altered physical features and developmental differences associated with Down syndrome. Although we are well aware of the physical features that determine the condition there is less known about the behavioural issues.

To determine whether someone’s behaviour issue has become significant enough to need addressing, let’s first answer these questions:

  • Does the behaviour interfere with development and learning?
  • Are the behaviours disruptive to the family, school or workplace?
  • Is the behaviour harmful to the person with Down syndrome or to others around them?
  • Is the behaviour different from what might be typically displayed by someone of comparable developmental age?

As with all problem solving it comes down to fixing the root of the problem. The first step in evaluating a behavioural issue is to determine if there is an acute or chronic medical problem related to the behaviour. An evaluation by a primary care physician is an important initial step that could highlight any medical issues that may be causing behavioural issues or to rule them out.  

Common behavioural issues in Down syndrome

Children with Down syndrome face challenges very similar to typically developing children. However, behaviour challenges may occur at a later age and last for longer periods. For example, temper tantrums, also known as the terrible twos, often occur in 2-3 year olds but they may not begin until 3 or 4 if a child has Down syndrome.

It’s important to take into account the individual’s developmental age as well as their receptive and expressive language skill levels, as many behaviour issues arise due to frustration with communication and can be addressed accordingly.

These are some of the behavioural problems that people with Down syndrome face and actions you can take to mitigate them:

  • Wandering or running off – behavioural supports such as instilling asking permission to leave or visuals such as a stop sign on the door can remind them to think twice about wandering off. Install good locks, alarms and a plan of action should they wander off from school or home. The most important aspect is to keep them safe. 
  • Stubborn or non compliant behaviour – Assessing their typical behaviour on a day-to-day basis can help to identify an event that may have triggered oppositional behaviour. It likely has something to do with communication frustrations. Children with Down syndrome are typically good at distracting peers when they are challenged with difficult tasks.
  • Attention problems – Attention span issues can arise for a variety of reasons, such as ADHD, anxiety disorders, language processing problems and hearing loss. Careful evaluation considering their developmental age rather than their chronological age can be helpful in determining the cause. 
  • Obsessive or compulsive behaviours – These behaviours are seen commonly in younger children with Down syndrome and may be no different from those in typically developing children, however, the frequency and intensity of the behaviour is likely to be greater. Increased levels of restlessness and worry may cause the individual to behave rigidly with repetitive actions.
  • Autism spectrum disorder – Around 6% of people with Down syndrome show signs of autism and can present itself in regression of communication skills. By identifying the signs as early as possible, intervention and therapeutic strategies can be implemented appropriately. 

How do I Approach Behaviour Issues in Someone with Down Syndrome?

  • Seek a medical evaluation to rule out any medical problems that could be related to the behaviour challenges.
  • Consider emotional stresses or events at home, school or work that may impact behaviour.
  • Work with a professional (psychologist, behavioural paediatrician or a counsellor) to develop a behaviour treatment plan using the ABC’s of behaviour. (Antecedent, Behaviour and Consequence).
  • Medication may be prescribed in particular cases such as ADHD and autism.

Every single person living with Down syndrome is unique. They will have different levels of ability and experience varying levels of behavioural challenges. Intervention strategies for behavioural treatments will depend on the individuals age, severity of the problem and the environment in which they appear. Psychosocial services from your primary care physician can provide consultative care regarding behavioural issues and in severe cases they can be referred to a behavioural specialist.

How do you Motivate a Child with Down Syndrome

Treat a child with Down syndrome in the same way you would a typically developed child. Play with them, read with them, engage with them, take them to the park and have fun together. They should be developing new skills, learning appropriate behaviour and aiming for the highest level of independence just as any child should.

Some things you can do to motivate your child include:

  • Learn as much as you can about the condition, the more you know the more you can help them and yourself.
  • Encourage them to be independent with everyday activities, such as getting dressed, eating, washing and playing. 
  • Be enthusiastic and encouraging with their learning.
  • Provide immediate positive reinforcement when your child initiates a positive result.
  • Offer your help when needed.
  • Have patience and provide them the opportunity to try again if they do something wrong. 
  • Find out what they are learning in school and ways to implement the learned skills at home.
  • Ask them to repeat instructions to make sure they have understood correctly.
  • Keep an eye out for social opportunities in the community to increase social skills, encourage them to interact and make friends, while having fun.
  • Celebrate World Down Syndrome Day to advocate and raise awareness – find out ways to participate in our blog post.
  • Connect with other people in similar situations to your own, to learn practical advice and exchange emotional support.

How do you Calm Down Someone with Down Syndrome?

By learning patterns in related events that may cause behavioural problems in people with Down syndrome such as lack of sleep or illness, there are certain intervention strategies that can be implemented to keep them calm and relaxed. 

This research with case studies conducted by down-syndrome.org has some interesting results to help to calm down someone with Down syndrome should they be experiencing some forms of behavioural issues. 

Setting event intervention strategies

Some of the strategies that they used and found productive when triggering events occured include:

  • Offering positive reinforcement.
  • Decreasing academic demands and stress.
  • Increasing opportunities to play games or other preferred activities. 

Antecedent intervention strategies

Some strategies can be implemented to preempt challenging behaviour and decrease the likelihood of it occurring. Strategies to help children engage in activities that would normally incur behavioural issues include:

  • Offering a preferred item or activity as a distractor.
  • Offering them a reward for completing a task.
  • Offering positive reinforcement for a selection of easier tasks followed by the more challenging task at hand with equal reinforcement.

With practice and repetition these strategies can often be slowly revoked as completing these tasks become habitual.

Maple Community Services can help you accomplish any of the above to support you both through the challenges you face. Our extensive experience, capacity for 24/7 support, and community spirit sets us apart when it comes to Down Syndrome support services. Our strong family values and friendly staff give you and your loved ones peace of mind and exceptional support to pursue a happy, fulfilling, and independent life. Reach out to us today to find out more.