Help to talk to children about MS?

Being a parent with MS can have its challenges, as MS will affect everyday life more or less for everyone in the family. Including, of course, the children. How can we talk to children about MS?… You have probably already discussed this at home.

This blog post is about how you might get help from books about emotions for kids when you want to teach your children about dealing with emotions and thoughts. Feel free to be inspired by diving into the world of books about emotions for kids– perhaps you will find the resources you need? This post contains a book review of Ruby’s Worry by Tom Percival, which is a great example of books in this category.

In this post, I will also talk about the workshop Digesting Science. The workshop offers practical and fun ways of learning and talking about MS with kids. For instance, what does it mean when you have MS fatigue?

Furthermore, I will talk about the solution one parent came up with when she found herself in your position trying to talk to children about MS. Julie did in fact write a book herself. Maybe you are not aspiring to be an author but perhaps you can be inspired by the story afterall.

To talk? – or not to talk to children about MS?

Perhaps you are in a phase of griefing yourself, which makes it hard to talk to the children about MS. There are so many emotions to go through when you get a diagnosis of MS. You might be trying to protect both yourself and the children.

What happens when we don’t talk to children about MS?

Even though the conversations might be hard, they are necessary in order to avoid the children feeling lonely and worried.

Children can easily feel like they carry the worries about MS by themselves if you don’t talk about MS as a family. They sense from an early age if something is wrong. By talking about MS you create a sensation of safety and avoid that the children feel they carry the worry alone.

We are ready to talk to our children about MS

Perhaps you already feel ready to have that chat about MS with your children in order to help your children feel safe. But how much should you tell? It is all about creating a safe space to discuss feelings, thoughts, and questions. By all means, you don’t want to give your children unnecessary worries about the future.

What should we consider before we talk to the children about MS?

• How old should the children be?
• The appropriate level of detail compared to the age of the children.
• How much should they know about the future?
• How prepared should they be?
• When are they old enough to get even more information about MS?
• Mentally prepare child-friendly answers about MS symptoms etc.

Find a way that fits both you and the children’s age and needs. This way you offer both knowledge and safety making the situation easier for the children to handle. You allow them to participate at their level and contribute to problem-solving in the everyday life of the family. Put yourself in their place and see the situation from their perspective. Answer questions and clear up any misunderstandings.

Maintain focus on family life – not just MS. Keep planning family events but explain about the need for breaks etc. Avoid giving the children a feeling of guilt or responsibility as this might encourage them to step into the role of a parent rather than a child. Talk to them about their emotions.

Children are great at coping in general when they have an understanding of the situation (which is appropriate for their age) and when they feel safe knowing that someone is taking care of the situation.

Books as inspiration for talks with children about MS

Children have a broad spectrum of emotions. But sometimes emotions can become too big for them to handle on the inside by themselves. They may need help coping with their emotions. Learning to cope with emotions is an important part of growing up. If you find it difficult to talk to your children about emotions and thoughts, perhaps you can get help from the world of books.

A safe and quiet time reading a book together might be a good opportunity to talk about MS and any emotions rising from living with MS in the family. When you are having a nice and relaxed time the conversation might run more smoothly and easily. I encourage you to dive into books about emotions for kids.

Corona and worries.

During the Corona lockdown in 2020, parents for a period also became responsible for homeschooling their children. In connection with that, I became acquainted with a book that is all about dealing with worries and emotions.

It was the story of Ruby’s Worry by Tom Percival. As a part of homeschooling, my child received an online video of the headteacher reading Ruby’s Worry. This happened during a time of worry due to Covid-19. I think most people (children and adults) had different kinds of worries at the back of their minds. Perhaps this is why I remember this video so well.

It was a simple story with a very important message. If you talk about your worries – they become smaller or disappear altogether. This simple message was cleverly and beautifully illustrated with superb use of colors and at times lack of colors.

Of course, you can not really compare MS to Covid-19. Yet the message from the book can be transferred to many different scenarios. That is what it is all about. Talking about emotions and worries in order to move on calmly.

The fact that we were in the middle of a pandemic with all the worries that could lead to, made the story about Ruby resonate well with me. Perhaps you will also find a book that resonates with you. One you can make use of when starting a conversation about MS. There are many different books about emotions for kids and I am positive you will find one which you can use.

If you search online you will find various options but in English and Danish.

Ruby’s Worry – a book review

In the story, we meet the happy girl Ruby, who loves to be Ruby. Until the day when she finds a worry. The worry is illustrated as a doodle in yellow with 2 eyes and big, heavy eyebrows. The worry is small to start with – but it quickly becomes much larger. In the end, it is so big that it is constantly on Ruby’s mind no matter what she is doing.

The worry follows her everywhere despite being invisible to others. In connection with the yellow worry growing, all the other illustrations in the books changes to grey tones, which underlines the storyline.

Luckily Ruby gets a friend. She finds out that he has a worry too. Together they find a solution to make the worry smaller. Now the illustrations move away from the grey tones and into bright colors.

Ruby learns an important lesson about handling worries which helps her with future worries. I think Ruby’s worry is a clever way of equipping your children with tools to handle worries and not be afraid of having worries in the future. They have the necessary tools.

I hope Ruby’s Worry has given you the inspiration to make use of books about emotions when you want to talk to children about MS. I will now discuss how you can use another method in the shape of a workshop.

Digesting Science

Digesting science is a workshop created with 6 to 12 years old children in mind. The aim is to empower children and give them knowledge about MS in order to live well with MS in the family. The workshop has been made by the Barts MS Research Team at the Queen Mary University of London i 2013. If you are interested in running the workshop, you can get the equipment posted to you depending on where you live. We ran such a workshop at my previous workplace in England.

All the tasks and equipment were well thought out and easy to approach. The activities were fun for the children and also provided learning opportunities. E.g. use of glasses to learn about visual disturbances and board games about getting vitamin D naturally. It also made way for support between parents and children who had MS in common. If you have the opportunity I would strongly recommend you and your family to take part. For more information click here.

Going beyond

Being a parent with a chronic condition can be difficult. Perhaps you are yet to find the resources you need in order to talk to your children about MS. This was the situation that Julie found herself in. She then decided to write a book about having a mum with a chronic condition. You can read about the book here.

Talking to others in the same situation

Julie’s book is an attempt to show her son that he is not alone in having a parent with a chronic condition. It also brings up another important issue. Allowing children and young people to share their experiences with others in the same situation. Giving them opportunities to open up about emotions and thoughts with others who understand where they are coming from.

You can read about the initiative from Scleroseforeningen here and how they bring young people together.

Be brave

I hope you have found the inspiration and courage to talk to children about MS.

• Did you get any ideas for icebreakers?

• Please feel free to share your own ideas on how to talk to children about MS.

P.S. Check here if you want to read more on how to help others relate to MS.