Explaining dystonia to a child

How can dystonia be explained to a child? Maybe you are the parent and you have dystonia. How can you explain your dystonia to your children? Maybe your child has dystonia - how can you explain about dystonia to someone who is young.

It's difficult - here are some ideas.

The obvious first one - show them this film clip below and then discuss it. The clip is a series of interviews with children who have dystonia:

Perhaps show clips about specific individuals:

But, a warning.

Let's say your child has a MILD case of dystonia - knowing others have it may be reassuring BUT seeing someone with a worse case than yourself may seem like a glimpse into the future for the child. This may create stress etc - so be choosy about what you show.

This is how someone else did the explaining:

"In 2009, it decided to move in. I realized at that point that I was going to need to introduce it to my family.Children, Mommy has Dystonia. It makes me hurt, and makes it hard for me to use my arm and walk. By March, the word had been said so much it was as if it had always been a part of our lives, and my children began to focus their anger and disappointment on it rather than me.

“Mommy can we go to the park?”

"No, sweety, I ....”

“Have Dystonia??? Ugh I hate your stupid Dystonia!!”

It was as if Dystonia became an invisible person, always preventing fun in our house, and just being an overall Grinch.

Halfway through the year, my children and I became fed up with this unwelcome house guest. We decided to let it know how unwelcome it actually was by ignoring it. We devised a plan of never saying its name in the hopes that it would go away.

At first it seemed silly. My daughter would start the day by asking me how I was feeling. If I answered fine, she’d follow with: “…and how is your Dystonia?”

I quickly cut her off, giving her a disappointing look.

“We don’t say that word in this house any more. It’s a bad word.”

Thinking I was joking, she looked at me confused.

“Then what should we call it?” she asked.

I didn’t know what to tell her. What do you call Dystonia: A huge pain in the butt? Annoyance? A neurological condition? Muscle spasms?

As I drifted off, thinking of all the possible names for Dystonia, my daughter’s eyes lit up.

“I know! We’ll call it the D word!!”

Maybe dystonia can be explained with photographs?

There is an excellent display here - or perhaps you could make your own? In which case, go here....

Perhaps listen to a podcast such as the one here.... or look in on Shakey Amey's channel here....

(Again, warning: watch all the videos first BEFORE showing them to children...they are not always uplifting!)

What else can be done?

As Beka says here, it is important we educate our kids....she writes:

"One way for people with dystonia to feel less anxious is to educate others about it. They can empower themselves by becoming an expert in the illness. When they share information with family members, friends, fellow students and co-workers, everyone benefits and becomes more understanding about what it's like to live with dystonia.

Parents can help an dystonia child avoid embarrassment by asking the school teacher and/or counselor to support and encourage the child. Having a school nurse, teacher or outside educator talk to the students in the class about dystonia can also be quite helpful. The more informed the children are about the illness, the less likely they will be to tease a child with dystonia

What else?

Well there is a Dystonia Guidebook for kids:

-Dystonia Guidebook for Kids
This is a great booklet for kids that will help you:

1. Understand dystonia
2. Explain dystonia to other people
3. Learn to take good care of your body
4. Enjoy your family
5. Succeed in school
6. Discover fun activities and hobbies
7. See a bright future for yourself

-I Will Gallop Instead of Run, I Will Type Instead of Write: Young People Living with Dystonia

This special book will introduce you to 11 kids and teenagers who have dystonia. They share photos and stories about how they succeed at life.

Here is some advice kids with dystonia have for others kids like them:
  • Try not to get stressed out because that makes the dystonia worse. Keep a positive and up-beat attitude. Never stop fighting or else you've let dystonia get the best of you.
  • Try to do your best.
  • Remember we are not different from other kids.
  • Treat other people nice and take a break when you get tired.
  • Stay strong and never care about what people who don't care about you think. Stay active.
  • It's ok to ask for help. Sometimes it makes life much easier and enjoyable.
  • Make sure to tell people how you're feeling and what's bothering you. Maybe they can help.
  • Do not give up!
  • Get involved in a competitive physical activity and don't let the disorder become enmeshed with your personality.
  • Write down your life goals and try as hard as you can to achieve them. If your goals aren't realistic for you at this time, make a list of new ones that you can achieve and go back to the other goals when you are able to achieve them.
  • Life goes on with or without dystonia. Do what everybody else does.
  • Never give up. Always believe in yourself. Have a positive attitude.
  • Learn to do the best you can. Always focus on what you can do, not what you can't do. Don't let dystonia rob you of your childhood and your future goals.
  • Don't let your dystonia get you down. Just because you have dystonia doesn't mean you can't do what you want. Don't let people tell you that you can't do something because you have dystonia. Prove them wrong and show them you are capable of anything you put your heart into.
  • Think positive and don't feel sorry for yourself.
  • If your family doesn't treat you like the rest of the household, ask them to do so.
  • Be like a palm tree. When the winds blow, lean with it, and when it stops, straighten back up.
Also, of course, make kids aware of sites by kids helping other kids with dystonia - such as this one....

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