Following a surge in calls to its helpline, the Down’s Syndrome Association have released a free resource for parents, carers, social workers and people with Down’s syndrome. Below is a selection of tips from the material.
Dramatic changes in all our lives during the past six months have resulted in challenging times for everyone, but even more so for people who have Down’s syndrome. The usual rhythm of life has been disrupted without warning, leaving feelings of isolation, anxiety and frustration. Many people have additional health conditions affecting respiratory and cardiac health, and it can be hard to understand social-distancing and the wearing of face masks. Add to this a possible difficulty communicating feelings both mentally and physically, and it is clear that now, more than ever, useful resources are vital. Below, we have outlined some essential tips from the document.
Tip one: Be kind to yourself
The first tip the document gives is about self-care. Being kind to yourself is easy when things are going well, but life isn’t always like that. The ability to self-regulate is important for those with Down’s Syndrome, but it is equally vital for carers. Self-kindness means that you are tolerant of your mistakes and that you treat yourself as you would treat a friend who is feeling bad. “Treating ourselves with kindness can help us to see where we went wrong, and to grow and improve from the mistakes we make. Seeing others treat themselves kindly when things don’t go well can help a person to learn this.” The Down’s Syndrome Association also advocates for mindfulness. By keeping your attention on the present, rather than having your thoughts fixed in the past or future, you can avoid a lot of the stress caused by worrying.
Common Mindfulness practices include;
A Body Scan is when we move our attention around the body starting with either the head or the feet and noticing the sensations.
A Breathing Meditation is when we take the attention to the breath feeling the sensations of each in and out breath either moving through the body or at a particular focussed point.
Walking Meditation is about bringing our awareness of the physical sensations in our body as we move, really feeling the sensations in the feet and being present with our experience of moving. It usually involves slowing down, pausing and having a greater awareness of what is around us.
Mindful Movement is when we bring Mindfulness to movement. That is the intention to be present with the sensations of the movement rather than focusing on the outcome.
There are also online courses, apps, books and other resources available for carers wishing to learn more about Mindfulness.
Tip two: Identifying pain
People with Down’s syndrome need to pay attention to their physical health, just like everyone else. However, they may have trouble clarifying when and if they are feeling ill. There is also some evidence that people with Down’s syndrome are more sensitive to pain. Caregivers should pay attention to changes in mood, routine, appetite and behaviour. They may also be feeling upset or anxious. Some people with Down’s syndrome may benefit from a role-play which helps them indicate pain or discomfort. Behavioural changes in women who have Down’s Syndrome can also be related to menstruation.
Anyone aged 14 or over who has Down’s syndrome has the right to a free annual health check with a GP. However, these do not replace the need for other, general health screenings and GP appointments.
Tip three: sleep
People with Down’s syndrome commonly have sleeping problems. The causes for these issues may be behavioural, physical, or a mixture of both. As communicating sleep issues can be hard for people with Down’s syndrome, it is important for carers to look out for signs of sleep issues, such as irritability, anxiety, aggression, impaired attention or sleepiness during the day. Sleeping issues are not inevitable in Down’s Syndrome, and assessment and treatment of these issues should be available to everyone who has Down’s syndrome.
Tip four: Recognising emotions
Feelings are complicated for all of us, but people with Down’s syndrome often need more time and assistance to learn to recognise and deal with their emotions in positive ways. A good way to help someone with Down’s syndrome start to recognize emotions is by nameing them (e.g. ‘you look happy’ or ‘I think you are feeling a bit sad today’). Depending on their level of understanding, TV shows can also provide a lot of examples of feelings and people dealing with them. Learning emotional literacy is the first step to learning emotional regulation. A good method for teaching emotional literacy is by creating a personalised chart with different images and metaphors to represent feelings.
Tip five: Using Social stories
The document also gives advice on using Social Stories. These resources provide extra guidance for responding to social situations by clarifying things that people with Down’s syndrome may have trouble with. Common topics include new routines, future events, or environmental cues. These Social Stories can be tailor-made for each person and will help them prepare for new and unfamiliar events in a more calm manner. Social stories should use descriotive sentences, and pictures are often useful. The perspective of a Social Story is often the person themselves. By using these frequently, carers can help those with Down’s syndrome anticipate new events and adapt negative behaviours.
To read the full set of guidelines and find other free resources, visit downs-syndrome.org.uk.