Written by Jenni Bowman-Day
I love the innocence of children. If they want to know the answer to a question, then they ask.
Last Friday, Miss 5 enquired of me, “Why is your hand doing that?” (shaking).
How to explain a tremor to a child?
At first, I gave in to the temptation of describing it like this. “Well, you know how sometimes you get the hiccups and your tummy jumps, but you can’t stop it? Well, it’s kind of like that”, I said.
“No, it’s not”, I was told, “because my hiccups go away, and your hand was doing that last time you visited with me……”.
Of course, she was right. It’s not even slightly like hiccups. But knowing that didn’t make it any easier to explain.
My next attempt was accepted as a little more credible – but it induced a whole lot of further questions.
“Ok”, I admitted, “it’s more like when you’re really cold, and your arms and legs shiver”.
“Are you cold?”, came the inquiry, somewhat incredulously, given that the temperature was around 90 degrees.
“No”, I continued, “but people don’t just shake when they’re cold, they shiver like this for many reasons. Like when they’re scared”.
The next question was sort of predictable. “Why are you scared?”.
And so, I then decided to try a different tack. “My brain has got a little bit confused, and so it tells my hand to shake sometimes when it shouldn’t”.
Miss 5 looked triumphant, as if she were, at last, getting somewhere. “So, you’re not making it happen – your naughty brain is”, she surmised.
And that, I thought was the end of the conversation. Wrong. After only a very short pause, there came a whole barrage of other queries. “Does it hurt?”, “Do you like it?”, “Why doesn’t your other hand do it?”, “Why don’t you tell your naughty brain to stop?”, “Does it do it when you’re sleeping?”, “How long will it do that for?”, and then that all-time favorite, “are you going to die?” and “does dying hurt?”.
Now at this point, I decided to just be honest. I told my little enquirer that I had never died before but that I had seen someone die and it didn’t look like it hurt. I assured her I wasn’t going to die because of my shaking hand. I said my hand didn’t hurt, held still when I slept, and I didn’t like it shaking. I informed her that I had told my naughty brain to stop shaking my hand, but it didn’t listen. I told her I didn’t know if it would go away, but I hoped it would or that a nice doctor would be able to make it better.
This last response left her appearing completely devastated and she said “Are you sick? Have you got a tummy ache in your hand?”
It was becoming more complicated by the minute! Eventually, I spotted a tiny birthmark on her leg and saw my opportunity. “You see your birthmark?”, I said, “Well, my tremor is more like that. Only instead of being a different color to the skin around it, my hand is making a different movement to the other hand and my legs, which are all sitting there nice and quietly”.
Finally, she appeared satisfied. I had explained so that she understood what was going on with my left-hand tremor. She accepted that for now at least my tremor was a part of me – and kindly invited me and my hand to be her ‘Show and Tell’ project at school.
I think we owe it to children, to be honest, and sensitive and explain in such a way that we can help them to understand the “why?” of a tremor, as well as to prepare them for the changes they can expect to witness as our symptoms progress.
With this in mind, I have put together, some Tips on talking to children about your tremor
- Use humor to talk about Essential Tremor so it doesn’t seem scary.
- Maybe a good angle would be to talk about the experience from both the tremor sufferer and the witnessing child’s experience of the disorder. You could describe the symptoms that you have noticed and how these affect your daily life, and then she can tell you the symptoms she’s noticed. I think it’s important, to be honest, and explain that you find this frustrating, but are happy to talk about it with her so that it’s not scary.
- Ask the child direct questions about their feelings about and understanding of your tremor.
- Be ready to discuss the subject when the child is.
- Have the conversation first with others (your spouse, adult children, caregivers) so that you are all giving consistent information.
- Consider how the age of the child affects how they communicate and learn. Maybe a story or a movie could prove helpful.
- Remember each, and every child is different, so be prepared to tailor the conversation to suit them.
- If the child is clearly curious but hasn’t asked you questions, consider inviting them to sit down and have a chat. Set aside as much uninterrupted time as possible. Children react in different ways and you want ample time to deal with whatever emotions they may show.
- While it’s important to talk about the tremor as much as the child needs to feel comfortable with it, it might also help to utilize some distraction techniques like a story or coloring.
- Be prepared for the difficult questions, because they will come, and there may be ones you are unable to answer. Often it’s the whys that are hardest to answer! The way you respond may depend on your beliefs and parenting philosophies, but however, you answer, be prepared for the child to be confused for a while.
- If they continue to ask a question you’ve answered already, they may be looking for more information or a clearer explanation. Even if the child appears to understand, you may have to explain things many times in many different ways, so be prepared to have patience.
- In the time following your initial discussion, more questions will likely pop up, so get ready for a follow-up session!
- When explaining to a child, the symptoms can be explained, by comparing them to the child’s experiences, such as falling over when she was learning to walk. Describe similarities to, and differences from, how the child sometimes might feel.
- It’s important to use words and phrases that they understand, according to their age, so prepare beforehand, if possible, by listening to, and watching the child for a while. Break the explanation down by describing it in easily understood terms. The younger the child, the more armed with understandable information you will need to be.
- The tone used is important so as not to instill fear from the symptoms sounding distressing.
- What I think is really important is to emphasize that, despite the tremor being present when it wasn’t before, that you are still the same on the inside—important reinforcement for a child who might have to get used to seeing you behaving or appearing differently.
- For all ages, it’s important to remember that the child may be concerned not only for you, but with their relationship with you, and how your tremor will affect that relationship.
- Most importantly, you need to be honest. If you don’t know the answer to something, it’s okay to admit that. It’s a good lesson that adults don’t always have the answers and that there aren’t always easy explanations. Remember when, as a child, you thought you knew what was real and what was happening, only to find out much later how wrong you were? That’s why we must answer the questions openly and reassure children because we don’t know otherwise, how they might have interpreted what was happening. Little people are resilient, and find it easy to carry on with their everyday childhood activities, when we take the time to explain to them what’s going on.
- Remember, it’s tough for little children, because they may not be able to understand complex emotions like stress, so their questions and reactions may appear strange.
- A word of caution – kids’ brains are always growing, learning, and absorbing different facts, in different ways, as they develop and mature. Given too that tremor symptoms may change and progress, we must keep these kids updated, and invite them to ask questions as their understanding grows.
- If the child is having a really tough time dealing or understanding, it may be worth seeking out the assistance of another adult close to the child, or even suggesting counseling for the child
- It is important to involve children in our tremor journey from the very beginning. It teaches them not to shy away from people who are different and to consider what may be going on in other people’s lives that may make them look or act in a way different from themselves.
- Children pick up on our energy. If possible, wait until you have had time to prepare the conversation and what you will say so you can remain calm and unflustered.
- Finally, remember to reassure them that you are okay.
Putting together these tips has made me realize how difficult it is to explain to children what a chronic illness or disability is, and how difficult Essential Tremor is to explain. It’s made me think that by the time my sons bless me with grandchildren, perhaps I need to have worked out how to explain my Essential Tremor. Perhaps now then, would be a good time to develop my literary and artistic skills, to create a children’s book explaining tremors – watch this space for the book promotion! Maybe I’ll call it “Grandma’s hand isn’t doing what her brain is telling it”, or “why are your hands shaking, Grandma?”