What Parenting With MS Is Like
I always thought my children were well adjusted and felt fine about having a mother with multiple sclerosis (MS). I knew they’d rather I didn’t have it, but I thought they’d accepted it and had learned to live with it. I’ve even seen it as a positive before; they seem to be more compassionate, independent and tolerant of diversity than other kids.
Recently I’ve started thinking I could have taken their acceptance for granted and maybe they’re not coping as well as I’d thought.
I have a 10-year-old son and a (nearly) 7-year-old daughter. My son can just about remember a time when MS didn't disable me. He was a baby when I was diagnosed so has memories of going swimming or the park with me on our own.
My mobility took a turn for the worse when my daughter was around 1-year-old. She has no memories of anything other than mommy on a scooter or needing a rest after lunch. I thought she understood it all but recently, after a long day when I was struggling to get to the bathroom, I found her sobbing.
Her little face looked stricken, and when I asked her what was wrong she said, “I’m sorry it’s my fault you’ve got MS mommy.”
I was astounded. I tried to tell her it wasn’t her fault, but she must have overheard me talking about how my mobility got worse after she was born and concluded it was because of her. Then I explained that women with MS often get worse after having a baby and she seemed to accept this.
How Do You Talk About MS With Your Children?
I started investigating on trusted websites whether there were any information and support and came across a publication on the MS Trust website; Kids Guide to MS. I ordered a free copy to go through with her, but you can also download it onto your desktop.
When it arrived a few days later, we snuggled up together on the couch and read it together. It was glossy, colorful pictures and lots of information. She was thrilled with it and took it proudly to school for show-and-tell the next day. Her teacher went through it with her class, and she loved answering the questions from her friends.
This made me realize how I need to check in with her more often. I need to make sure she understands it not anyone’s fault, and it’s also not the end of the world.
The Importance of Checking Up On Your Children
As my son’s older he does lots to help when my husband’s at work. He can get my scooter out of the car, for example, and helps me with the dinner. I thought he was coping better, but recently I got called into his school to talk to his teacher.
She told me he’d not been himself in class and asked if everything was ok at home. I was dismayed to discover he told teachers he was worried about me when he’d been challenged about bad behavior. This seemed so unlike him as he’d always seemed fine about helping me.
A few weeks before this, he’d been upset when he was unable to help with something, and I’d considered a Young Carers group by where we live.
Find Support for Your Children
The Young Carers group is a safe place where young caregivers meet up. They can talk about how they feel about their parent’s disability, and staff takes them on fun days out.
I contacted them and was in the process of organizing an assessment when my son had a change of heart. We had a long talk, and he worries he doesn’t do enough caring to justify attending the group. He doesn’t have to wash me, for example, so would feel like a fraud. The organizer said she understood and that there’d be a place for him if he changed his mind in future.
I agreed with his teacher that we’d both keep an eye out for him and I encourage him to talk about how he feels.
It’s good to know there is help available and I would encourage you all to investigate what’s going on in your area. Keep in touch with the school as they can keep an eye on behavior they’ll be hiding from you.
I would also suggest talking things through with your children. We often underestimate how much they understand and try to protect them from inconvenient truths, but in my experience, they can cope with a lot more than we give them credit for as long as they feel loved and understood.