Wondering how to talk to children about MS?

Steven Koutsodontis and family

Steven Koutsodontis is a Melbourne father of two whose been living with MS for 31 years. He wrote “A Conversation About Multiple Sclerosis with my Family” so his children can better understand why their father can’t do many of the things that other fathers can do. He hopes his book will help other children by providing them with an easy to understand and more positive message about MS.

Tell us a bit about yourself

I’m 47 years old and I was diagnosed with MS in 1989 when I was 16. I met my wife Angela in 2000 and told her I suffered from MS on our second date. She was slightly shocked, but this did not shift her outlook on me as a potential life partner. We’ve been married for 17 years and have two children – Irena, 15 and Michael, 9.
I worked as a microbiologist  for 20 years but for health reasons, I found I needed to transition to another form of employment, and I now assist people with the NDIS. As I too have a lived experience with disability, it was an easy and worthwhile transition as I’m able to offer reasonable insights to people. I’ve also started a peer support group for people with MS in the Essendon / Niddrie region in Victoria.

What was your initial reaction to your diagnosis?

I was curious about my condition and my parents would tell me not to worry too much about it, that it wasn’t anything serious or life threatening. ‘Inflammation of the nerves’ was how they sold it to me. I thought, why me? It was a terrible, uncertain time. My parents didn’t disclose the full truth about my diagnosis to me as they (and I guess my neurologist) felt that my MS could be managed well with medication in the short term.
I had fatigue, double vision, numbness and loss of strength to the left side of my body. I would take weeks off school to rest and take oral steroid tablets. After a month, the symptoms would magically disappear, but each attack would deliver a blow that would gradually reduce my physical strength.

Can you tell us about your book?

My intention was to describe MS in a simple manner to help children understand the disease a little better and to provide them with the reassurance that their parent’s love for them is not affected by their condition.
The book is written as if I’m having a conversation with my children about MS and answering their questions about why certain things occur to me in my day. I also explain to my children ways I can prevent or minimise these unwanted MS symptoms.

I provide analogies, such as a train and passengers not reaching train stations, to help describe the way messengers from the brain are impacted by MS. I use the scarring of trees in bushfires as another analogy to describe the scarring that occurs on the brain. This strategy and others in the book help children and their parents better understand MS and ways to better manage the symptoms of MS.

In your book, you say to your children, “Daddy has an illness called Multiple Sclerosis. The same illness can be called MS for short. I like it called MS as I can use my own words, like instead of Multiple Sclerosis - Mighty Strong.

Can you explain how speaking to your kids about MS in this manner has empowered them?

My children understand that my MS is very unpredictable, intense, humiliating at times, exhausting, painful and unsettling. But I like to show them that I do not give up when faced with the many uncertainties MS presents in my day. MS is something that needs to be managed and I need to know the how, the why and the when. I show my kids that this response is about creating an increased awareness of your environment and the risks that need to be mitigated, which is an empowering outlook for anything that needs attention in life, not just MS.

From your experience as a parent living with MS, is there one instance that stands out for you as a turning point in the way you communicated with your children about your MS? Can you briefly describe it?

There is one instance when I fell flat on my face when I failed to negotiate my balance correctly due to my left foot drop when walking with my son. I knew then and there that he needed to know the truth about why his father fell.

Do you have any tips for someone living with MS who wants to talk to their children about their condition but doesn’t quite know how?

My tip is to be honest with your children about your MS symptoms. Try to teach your children resilience and use a simpler language when explaining the disease to them - don’t use strong destructive language. Compare the disease to something they can relate to.

Depending on their age, you can use examples of superhero characters in movies or video games your children are familiar with to illustrate how these characters are able to show strength and defeat their problem. Then, compare this to the things that you do to maintain a stronger version of yourself. This could be your diet, your exercise regime or anything that helps you feel stronger.

Do you have any tips for someone living with MS whose thinking of starting a project of their own but is a bit afraid to take the leap or doesn’t know how to start?

Research your project a lot. Speak to people with whom you feel comfortable about your project. Obtain advice from peak bodies. Don’t be afraid to take the leap, have confidence in your abilities. Visualise your potential results and all the people you could help.

Our life on this planet is brief, don’t waste your time on the maybe’s. If you’re passionate about something, please give it a genuine go and good luck.

To purchase Steven’s book, visit booktopia or email Steven directly: stevenkoutsodontis@gmail.com

If you’d like to find out more about speaking to your kids about MS, call our MS Connect team on 1800 042 138.



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