Spoonie Parenting

5 Ways That I Help My Children To Understand MS

My children have only ever known me as their Mum with Multiple Sclerosis (MS).  I was diagnosed 14 years before my first child was born and, although I was physically very well for the first few years of my children’s lives, they claim they can’t remember me not having MS symptoms.  I have always been the limping Mum who uses crutches and a scooter, the exhausted Mum who benefits from a daily sleep and the Mum who has to adapt her daily activities to accommodate her chronic illness.

MS is a huge part of our life as a family and, perhaps because of this, I see it as my role to support and educate my children in understanding what MS is.  I also hope to reassure them through my actions that, although the disease can be awful to live with, we can learn so much from it as well.

5 Ways That I Help My Children To Understand About MS

1. I use simple analogies to explain what MS is.  When the kids asked what MS was, I was initially unsure how to explain it without using lots of medical terminology.  But then I thought of a simple radio scenario – the cord that is plugged into the wall is covered with a plastic casing (the myelin) which protects the wire (the nerves).  If the plastic casing becomes damaged, it may stop the radio (body) from getting the right signals from the wires, so the radio may not work as well.  My phone cable recently broke due to the casing breaking and my daughter pointed out that it looked like it had MS!  The National Multiple Sclerosis Society has some fabulous resources for children in the form of newsletters that you can print out and give to your kids to read.

My phone cable has MS

2. I try to be a good role-model.  Do my kids see me when I am at my worst symptom-wise?  Absolutely.  Only the other day I was having a bad flare as I had a nasty cold and temperature and it meant that I could not walk at all, there was no way that my children couldn’t see how it was affecting me.   However, day-to-day, when my symptoms are more mild, I try my best to show my children that people with MS can still exercise and take care of themselves, to help them them manage their illness.  One of the things that I worried about when I stopped being able to exercise in the same way that I used to – running and aerobics – was the fact that the kids wouldn’t have me as a role model for healthy living.  But, actually, they do – I try to do adapted yoga and lift weights, albeit holding onto a chair and with frequent rests.  I try to eat as healthily as possible and tell them it is because I want to look after my body.  The children know that I meditate because it helps me to have time out to myself, feeling calm.  I hope that all of these and other ‘self-care’ acts (a fancy way of saying that I basically listen to and respond to my body’s needs) will be showing my children how it is important to for us all to take care of our own bodies, regardless of whether we are living with a chronic illness or not.

3. I show my children how to help others and praise them for it.  Now that my kids are a bit older and heading towards the ‘tweens’, I encourage them to help out around the house, emphasising that if we all pitch in, we would have more time (and me more energy) for playing together.  It’s not always been easy, but they now understand that if shoes are left in random places, I am liable to trip on them.  We have put a ‘smiley face’ system into place, where the kids are given smiley faces for anything helpful that they have done, which then convert to pocket money or a treat of their choice.  I can’t say that the kids show great teamwork when it is just the two of them playing, but as a family we all try our best to work together to help each other out and this helps me massively.

4. I make them aware of disability and the problems disabled people may face.  If the kids are in the car with me and we haven’t been able to park in a designated disabled space due to someone else being there without a badge, I will explain why that is wrong.  They have seen me being unable to enter shops due to lack of disabled access and have been there when someone made a rude comment about me being too young to have to use a scooter so I must be ‘faking it’.  If I suddenly have to cancel plans because of my fatigue levels, I will explain to the kids that, although I look the same as usual, I don’t always feel the same.  I hope that by discussing these situations with my children I am raising their awareness of disability, including invisible illnesses.

5. I show them that life goes on.  Being diagnosed with an illness such as MS can result in massive lifestyle changes, for example I now struggle with working for three full days and may need to consider an alternative.  Sometimes, it is all too easy to focus on what life used to be like or how our future may not be the one we planned.  I try my best to continue to make plans, to show my children that even though life may change, it isn’t going to change me as a person.  I still love going for ‘walks’ with them, I just need to use my scooter.  I still love to travel, I just need to be a bit more organised when doing so.  And I still love exciting challenges – like going on the world’s fastest zip wire – I just need to ensure they can accommodate people with disabilities (I have checked and they can!)

Us parents always doubt ourselves, but I hope that by being open and honest with my kids about my illness, whilst also having a ‘glass-half-full’ approach, I am helping to reduce any worries that they may have in relation to my health.

Jen 2

 

 

 

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31 thoughts on “5 Ways That I Help My Children To Understand MS

  1. I’ll be facing the same challenges soon enough with my toddler so this has been so helpful for me to read. He has already started to pick up on the fact that sometimes mummy has to go for a lie down! It sounds like you are doing a great job of helping your children understand your illness and I’m sure it’s helping them learn how to be emphatic and compassionate as a result. It’s great to be able to read how others manage to combine MS with family life, so thank you for sharing your experiences xx

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    1. Thank you Natalie 🙂 your little boy will grow up so quickly. It feels that my oldest was a toddler only a couple years ago! I like to think that growing up with mums with MS, our children will to be compassionate and understanding and strong. Xx

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  2. This is great Jen. I remember when my daughter was very young trying to explain “what’s wrong with mommy” was so difficult and back then they didn’t have much. You are a wonderful role model to your kids and to others with a disability or not. XO

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  3. You are doing incredible! My Dad has MS and has been wheelchair bound for as long as I can remember. Growing up around MS is definitely what made my sisters and I much more hard working, compassionate, understanding, strong and most of all grateful and I believe gratitude is the key to happiness.

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  4. Hey Jen, this is amazing and even though I don’t have children.. helping some of my family members understand has been hard.. they often say “oh you’ve been off long enough now” or “have you ever thought that some of this is in your head?” So trying to educate them is the most positive way and if they still don’t get it… Then I just accept that’s the way it is.. luckily I don’t live with them so I don’t have to face these challenges daily.. I hope you’re having a better day.. sending lots of hugs xxxxxxx

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    1. Thanks Hannah! It’s hard for people to understand and I think that you’re right – you just need to explain as best you can. That’s all that we can do – keep reiterating why we might be not feeling so well and the understanding that we need. Pleased that you have a bit more time off work to recover make sure you rest up. Xxxxx

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      1. Thank you my lovely, how are you today? I’m definitely resting.. cosy clothes and having a Sex and The City marathon 😊 whilst writing a blog post for this week hehe.. yes definitely trying to explain I try to educate instead of getting angry lol.. although sometimes you can only explain too much xxxxxx

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  5. I loved your explanation of myelin damage! I wasn’t diagnosed until I was 50, and of course, wondered how long I actually had the disease. My own daughter is now thinking of having children, and while I would love to see that happen, I would like her to be aware of MS and pregnancy and what is involved, in terms of her child possibly inheriting the disease. You reminded me that our own MS Society website has lots of information she can access.

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  6. My mum was diagnosed with MS before I was born, it was never explained to me and I found the whole thing quite scary and unknown. I think it’s great you’re explaining MS to your children and keeping the dialogue open. It’s so important because things which children don’t understand can become very scary. Keep up the good work!

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  7. well done on showing your kids that even with a disability you can still do all the things a non disabled person can, and on raising awareness of invisible illnesses too, and on making learning fun for them. xx

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  8. This is fantastic advice! My son is six and I’ve been diagnosed a year ago. He knows mummy gets tired and that I’m not always 100% but so far this doesn’t have a name. When he’s ready I will use the radio cable to explain! I am already teaching him about the importance of disabled spaces and toilets and that not everyone who uses those has a wheelchair. Thanks Jen, great post!

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  9. Great read, I was shocked and caught off guard when my 7 year old son asked me out of the blue if I was retired like grampy and why I wasn’t a nurse anymore! Working on a blog about that right now!

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