There is a lot of fear around at the moment, and for very understandable reasons. Often fear, anxiety and uncertainty can trigger (or amplify) behaviour problems.
Boredom can also lead to unwanted behaviours. Many people have gone from leading busy active lives to sitting at home without being able to leave the house except in very limited circumstances. This is a difficult transition for most of us, but may be more difficult if routine and structure are important to your wellbeing (as is often the case for people with Down syndrome).
This might initially seem like school holidays to a child, but holidays are planned, anticipated and finite. This a time that we didn’t plan, and that is largely out of our control. Be mindful of conversations you have in front of your son or daughter about things like money worries, loss of jobs, number of cases published each day, state of the health service, etc, as these conversations may add to their anxieties, and are not things they can influence.
This situation is hard for all of us, and we are able to understand and rationalise the reasons for staying home. It’s much harder for children and adults who may struggle to fully understand those reasons, and may not have a good sense of time, so feel that this might last forever.
It’s important to talk to your son or daughter, and reassure them that this situation is temporary, and also to consider giving them some information about the pandemic if they ask. There is a downloadable resource from DSI and an easy read booklet available from the HSE.
Remember that not every behaviour change is because of the pandemic. Just as before, if you notice a significant change in your son or daughter’s behaviour or wellbeing, always consider that there may be a health issue that needs investigating. It can be worrying looking for medical help right now, but many GPs are offering phone or video consultations, and may be able to put your mind at rest without having to leave the house.
What can help?
Nothing about this situation is perfect, and it’s not realistic to think that we should be perfect either. Think about lowering your expectations. Does it really matter if your child spends a bit more time than usual on the computer? Does it matter if they’re not being constructively occupied all of the time? Do you have to juggle working at home, home teaching, refereeing disputes, learning new skills, and minding everyone’s physical and mental wellbeing, and do it all perfectly all of the time?
No. If ever there was a time to aim for ‘good enough’ rather than ‘perfect’ parenting, this is it.
Pick your battles
This is an unusual situation. Not every unusual behaviour is necessarily a problem. Coping strategies come in many different forms.
Questions to ask yourself:
- Are the behaviours excessively disruptive to the family?
- Is the behaviour harmful to the person with Down syndrome or to others?
- Does the behaviour interfere with doing other things that the person usually enjoys?
If the answer to all of these is no, then it may be ok just to let things slide for a while. This is definitely a time to pick your battles.
If the answer is yes, pick up the phone and ask for help or resources, whether that’s from us, from your child’s school, from your GP, or from psychology, social work or mental health professionals.
People with a dual diagnosis of Down syndrome and ASD may find the change in routine particularly challenging. There are some useful tips about understanding behaviour and developing coping and calming strategies which are autism focused, but might also be useful for some people with Down syndrome.
Create some kind of structure:
- Get up in the mornings.
- Get dressed.
- Have meals at predictable times. Think about making a lunchbox of snacks for each person for the day (or split into morning and afternoon) to avoid constant grazing.
- Make a timetable together. Make cards or post it notes with words and/or pictures (Activities for making a schedule PDF) and choose together. Create a system where you choose one and they choose one. An older child or adult may be able to plan for the day, a younger child maybe only for the next few minutes. Ensuring that there is a clear structure with choices and boundaries will help. Here is a sample visual timetable we’ve prepared.
- Include some form of exercise every day, whether it is walking the dog, dancing, or maybe following an online class.
Think about screen time
Having more screen time than usual is probably inevitable, but be aware of the content.
Singing and dancing along to Mamma Mia for the 10th time this month might be irritating, but it likely to be far more beneficial for someone’s mood than watching something scary, whether that’s a thriller or the news.
There is a balance though. Getting into a groove where the same film is watched continually is probably not helpful, and maybe a difficult habit to break, so think about rules and choices. Putting the names of favourite films in a bag and pulling one out at random can be a good approach, as you can remove names if they are coming up too often.
Try to have a balance between watching favourite things and using screens for other purposes, such as learning, playing games and chatting to friends.
Here is a basic Sprial board game template which is adaptable to suit different ages which you and your family may enjoy.
Video calls can be a very positive way to keep in touch with extended family members and friends. If there are family members who are cocooning or self-isolating, it may ease worries if people see that they are doing ok. Video calls can be easier than voice calls for many people, as they can use visual cues. Texting and/or sharing pictures and videos may be an option if your internet speed isn’t fast enough for video calls.
Screen hygiene at night is worth thinking about. We all do better if we get a decent night sleep, so leaving phones and other devices downstairs at night may be a good idea.
Don’t try to be positive all the time
Accept and articulate that this is hard sometimes. By doing this, you give your child permission (and vocabulary) to do the same. Yes, most of us are safe in our houses, but it’s stressful to be cooped up all the time, and the uncertainty of not knowing when this will end is difficult.
Verbalise your emotions and your actions. If you can say out loud ‘this is hard for me, I’m getting cross, I need to take a short break and listen to my music’ you are modelling a good coping strategy for your child.
Have an agreed signal that all family members can use if they want some time out or need to spend time on their own and agree that this will be respected by everyone.
Help children and adults identify things that make them feel better, and maybe make some visuals with different options they can choose if they need some time out. Help them to label their emotions and learn to recognise when they need to take a break. These are skills which will help long after the current situation is over.
If you’re struggling to think of things, these resources from the Adult Down Syndrome Center might help.
You can also check our resource page for adults on our website.
Try to find things to do that involve humour. On a recent multi-generation video call, one of my young cousins found a way to give all us oldies bunny ears that flapped when we talked. Silly? Yes. Funny? Also yes, and managed to shift the conversation back to a more positive note.
Bear in mind laughter and music when choosing films and tv to watch. Keep the mood as positive as you can. Now might not be the best time for the dark Scandinavian crime drama or the disaster movie.
At the time of writing, we can still go outside, once we keep a safe distance from others and stay within 2km of home.
Set goals. Count steps. Keep a record. It’s always nice to have a sense of achievement!
Try to have an element of mindfulness in your walks if you can. Notice the emerging leaves, the flowers, the lighter mornings and evenings. Breathe. Try not to spend the walk worrying, missing the pleasure of being outside.
This activity tracker and healthy eating app is designed for use by adults with Down syndrome and can help encourage good habits.
Relaxation and reducing stress levels is really important at the moment. For some people it may be listening to music, going for a walk, dancing, or it could be combination of these. Downtime is important for everyone in the family, so make sure you have breaks too.
One good thing happening at the moment is the amount of free resources now available online.
Adult colouring books are suggested to help people relax, we suggest trying them out to see if thye help, there are also many more available online.
We’ve said it before, and we’ll say it again. The most important thing at the moment is to manage your own stress as best you can. Your son or daughter with Down syndrome will pick up on your feelings, so anything you can do to manage stress and anxiety and to focus on positives is also helping them. Hopefully the measures in place will help to contain the spread of the virus, and we’ll all be able to get back to some kind of normality soon. In the meantime, mind yourselves, and call us if we can help with anything.