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As part of my recent move back to the US, we stayed with my parents for two months and I picked up a wonderful idea for involving kids with my MS medicine.
My father is diabetic and checks his blood sugar before every meal. My children followed him up to his room during the first week we were there and started asking him all sorts of questions about how the procedure. Soon after, I realized that they were going up to his room every time he was checking his blood sugar and getting angry if he didn't include them in it. He had divided up the tasks involved between my two girls and involved them in it. When my nephew came to visit, they eagerly brought him up with them to show him how Grandpa was "doing his numbers".
I quickly adapted this excellent idea for myself. I was used to taking my Copaxone when the kids were at school, so I shifted it to before school. Every morning, one child unscrews the autoject and one tears open the alcohol pad. On opens the package to the needle (still well capped), and I insert it into the autoject. They watch the indicator to see when it's done, then hand me a cotton ball. One gets to throw the capped needle into sharps container and the other throws out the trash. The love it.
The kids know that the medicine helps to keep me healthy, and they love being able to help me out with it. It's an easy way to demystify the whole process, give them a sense of ownership over it, and keep the discussion of MS open within the household. Plus it's a fun thing we can all do together!
Showing posts with label talking to kids. Show all posts
Showing posts with label talking to kids. Show all posts
Monday, December 13, 2010
Thursday, September 10, 2009
How to explain MS to children
I have two children and have had to think a lot about how to approach the topic of MS with them, so I thought I'd share how I approach the issue. One caveat is that I treat each discussion with them as unique and don't assume that what I thought they understood the talk before is how they understand it now. They are growing and their minds are developing, and I have to respect that their perspective changes all the time. So what I can share is my approach to the discussion, not the discussion itself.
The first thing to keep in mind is that kids are really, really sensitive. No matter what you say to them, they will hear your emotions underneath. If you are scared of your MS, they will be scared of MS. If you are scared to talk to them about it, they will think MS is scary. So work on yourself first. If you've been diagnosed, don't wait until you are in the middle of an episode to bring it up. Look for opportunities to bring it up. For me, my kids see me take my shot every morning, so we talk about it then. Which brings me to my next point:
Make it a regular topic of conversation in the house. Kids will figure out that MS is something shameful if it's always talked about in whispers and behind doors. They'll hear the word "MS" and think it's a dirty family secret. If it's something you talk about with them around, it gives them a chance to ask their questions and know it's just a fact of life, not something they have to feel bad about or be scared of.
My mother, Dr. Phyllis Silverman, is an expert in bereavement. One of her specialties is how children deal with the loss of a parent. I grew up in a house where death was talked about freely. When an older friend of mine died of leukemia when I was five, I went to the funeral and was part of the discussion about death. I wasn't scarred by the experience, but grew from it. There was nothing hidden from me. Dr. Silverman has written an excellent book entitled Never Too Young To Know about children and grief, which I highly recommend (and not just because she's my mom). When things are in the open, they are much less scary, and kids can feel free to ask questions about them.
My children have an amazing ability to make things up. I worry that they will make things up about MS if they only know part of the story, so I try to keep them in the loop. I think it's important to answer the question the child is actually asking. Often, my kids will ask things that seem to have a much greater meaning, but are actually much simpler.
I had an episode last year when my leg went numb and weak. I explained to my daughter that my leg was sick with MS. She asked me if I would be able to go out to the playground with her again. My reaction was one of fear that maybe I wouldn't and I wanted to explain to her about the unpredictability of MS. Then I stopped myself, and asked her what she meant by "again"? She said that she'd went this morning and wanted to go again, could I go with her? Not today I said, and she walked away content, though disappointed. I had answered her question, not what I thought she'd meant.
I also look for how MS effects their lives. When I take my shot every morning, my kids think nothing of it because they got their shots too, and they know that we both take shots so we don't get sick. I put it into their language, spoken to the questions they have, so their understanding of the disease can grow as they do.
I think that the only secret: talk to your kids. Give them room to ask their questions and then actually answer them. Keep your emotions neutral so your kid can have their own reaction without being influenced by your emotions. I make use of "Emotional Coaching" techniques to help them deal with their emotions. Kids are incredibly strong, and have a resilience which is completely amazing. Don't sell them short.
I didn't have kids when I was first diagnosed, but I think this must be a much harder discussion to have if you've been diagnosed and are in the middle of your first episode when you already have kids. My advice would be to give yourself space to deal with yourself, while give your kids space to digest the change.
My basic advice: just talk. The more you talk, the easier it will get to say things, and the easier it will be for the children's understanding of MS to change and grow as they do. I've seen my understanding and relationship to my MS grows and change too, so my kids need to be in the conversation so we can all grow together, not apart.
This is what's worked for me. What's worked for you?
August 16, 2012 - a quick post-script
One of the lessons I've had to learn as an adult, and have tried to teach my children is that things take practice. We never gets things right the first time, and rarely get them right on the 20th time either. My kids know that if you want to get good at something, you need to practice. It's true about talking to kids about MS, it takes practice. Don't assume that you can do it once and be done with it, or that it will go easily or well the first time. But the more you do it, the easier and better it becomes.
The first thing to keep in mind is that kids are really, really sensitive. No matter what you say to them, they will hear your emotions underneath. If you are scared of your MS, they will be scared of MS. If you are scared to talk to them about it, they will think MS is scary. So work on yourself first. If you've been diagnosed, don't wait until you are in the middle of an episode to bring it up. Look for opportunities to bring it up. For me, my kids see me take my shot every morning, so we talk about it then. Which brings me to my next point:
Make it a regular topic of conversation in the house. Kids will figure out that MS is something shameful if it's always talked about in whispers and behind doors. They'll hear the word "MS" and think it's a dirty family secret. If it's something you talk about with them around, it gives them a chance to ask their questions and know it's just a fact of life, not something they have to feel bad about or be scared of.
My mother, Dr. Phyllis Silverman, is an expert in bereavement. One of her specialties is how children deal with the loss of a parent. I grew up in a house where death was talked about freely. When an older friend of mine died of leukemia when I was five, I went to the funeral and was part of the discussion about death. I wasn't scarred by the experience, but grew from it. There was nothing hidden from me. Dr. Silverman has written an excellent book entitled Never Too Young To Know about children and grief, which I highly recommend (and not just because she's my mom). When things are in the open, they are much less scary, and kids can feel free to ask questions about them.
My children have an amazing ability to make things up. I worry that they will make things up about MS if they only know part of the story, so I try to keep them in the loop. I think it's important to answer the question the child is actually asking. Often, my kids will ask things that seem to have a much greater meaning, but are actually much simpler.
I had an episode last year when my leg went numb and weak. I explained to my daughter that my leg was sick with MS. She asked me if I would be able to go out to the playground with her again. My reaction was one of fear that maybe I wouldn't and I wanted to explain to her about the unpredictability of MS. Then I stopped myself, and asked her what she meant by "again"? She said that she'd went this morning and wanted to go again, could I go with her? Not today I said, and she walked away content, though disappointed. I had answered her question, not what I thought she'd meant.
I also look for how MS effects their lives. When I take my shot every morning, my kids think nothing of it because they got their shots too, and they know that we both take shots so we don't get sick. I put it into their language, spoken to the questions they have, so their understanding of the disease can grow as they do.
I think that the only secret: talk to your kids. Give them room to ask their questions and then actually answer them. Keep your emotions neutral so your kid can have their own reaction without being influenced by your emotions. I make use of "Emotional Coaching" techniques to help them deal with their emotions. Kids are incredibly strong, and have a resilience which is completely amazing. Don't sell them short.
I didn't have kids when I was first diagnosed, but I think this must be a much harder discussion to have if you've been diagnosed and are in the middle of your first episode when you already have kids. My advice would be to give yourself space to deal with yourself, while give your kids space to digest the change.
My basic advice: just talk. The more you talk, the easier it will get to say things, and the easier it will be for the children's understanding of MS to change and grow as they do. I've seen my understanding and relationship to my MS grows and change too, so my kids need to be in the conversation so we can all grow together, not apart.
This is what's worked for me. What's worked for you?
August 16, 2012 - a quick post-script
One of the lessons I've had to learn as an adult, and have tried to teach my children is that things take practice. We never gets things right the first time, and rarely get them right on the 20th time either. My kids know that if you want to get good at something, you need to practice. It's true about talking to kids about MS, it takes practice. Don't assume that you can do it once and be done with it, or that it will go easily or well the first time. But the more you do it, the easier and better it becomes.
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