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Explaining MS to a five-year old

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    Explaining MS to a five-year old

    My grandson has always seemed to be an observer of me and possessed an awareness of my disability that amazes me for his age.

    At 15 months old, and barely verbal, I used my cane for the first time that he had seen it when we went to a swimming pool and I needed it for balance. He asked, "What's dat?" I told him, "It's my cane. I use it to help me walk."

    About 6 months later, when he was not quite two years old yet, I had begun to use my cane regularly, whenever I left the house. While visiting him, I parked my cane by the back door so I could easily grab it each time I needed it. After observing that several times, each time we got ready to leave the house, he went to the back door and got my cane and brought it to me. Every time. Every single time that we were together, probably until he was 3. (He lives far away, but we visited for a week or two about 4x a year.) Now, he might realize that, because it is located where I need it, it's not necessary for him to bring it to me to walk through the house to get to the back door.

    This summer, at the age of 5, he asked me, "Mimi, why do you use a cane and a wheelchair?" (I use a power chair when I need to walk long distances.) Not having time to think ahead about my answer, I said simply, "Because it's hard for me to walk." But, I felt like that was an incomplete answer, so I thought more about it, and called him back over a few minutes later, telling him that I had an answer that might make it easier to understand.
    "When you walk or run, your brain tells your legs what to do. My brain doesn't work right. My brain doesn't always tell my legs how to walk."

    I've loved watching his observations of me, his awareness of my disability, his empathy and helpfulness and his desire to understand and to learn more.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    #2
    Great story, Mamabug! - I have a similar story with my now 5 year old granddaughter. From using a cane to walker throughout her life she has always helped me... bringing me my cane to helping me push the walker over rough ground, etc. Recently, I told her something similar as to why I don't walk well.

    We're so fortunate to have grandkids who are very aware and helpful. There are some educational publications put out by the NMSS just for kids called Keep S'myelin. They used to mail out the booklets but because of Covid, they have discontinued mail service. You can print out pdf files for now.

    https://www.nationalmssociety.org/Re...-Keep-S-myelin

    I haven't printed out materials yet, but think it's something I will do!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Thanks for the resource! "Many scars"; I hadn't remembered that definition. That would be another great way to explain what's going on in my brain.
      ~ Faith
      MSWorld Volunteer -- Moderator since JUN2012
      (now a Mimibug)

      Symptoms began in JAN02
      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
      .

      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

      Comment


        #4
        You are both so fortunate to have such empathetic grandchildren!

        Comment


          #5
          Hi Mamabug!

          A friend spent the better part of an hour telling me about his very young grandson.

          In a nutshell... everything is new!

          Occasionally we can grasp a bit of newness, perceiving differently, call it a second hand "newness."

          This blessing may be in the vicarious observation of an innocent. Your grandson.

          Comment


            #6
            Thank you for sharing this. I have a 5 year old daughter at home and I've often thought about when i would tell her. Right now i don't have any physical signs of MS. I'm pretty stable and things that might be MS related aren't things she would notice. However i know someday i will have to explain to her. Right now she picks up on me being tired a lot and she will even say "don't worry mom, i'll do it because i know you are tired". But she doesn't understand why nor do i need her to do anything.
            How did you explain to your children and when did you explain? I thought maybe in her teenage years when she can understand better.
            Dx March 2018; possible first episode: August 2011
            Tysabri May 2018-June 2019, Mayzent July 2019

            Comment


              #7
              Originally posted by Jennaly16 View Post
              .
              How did you explain to your children and when did you explain? I thought maybe in her teenage years when she can understand better.
              When I explain to my 5 yr old grandchildren (I have 5!) about my limitations, I never say that I have a disease as this may have a negative reaction. I always call it a condition. Your condition you live with causes you to being tired and thank her for being such a good helper! It will be such a great learning experience as the years go by for her to see the value of helping others that need it.

              I think that you can give her more information as she becomes more aware, but JMO, you can start before she is a teenager. I have older grands (9,10,11) and they know more about the brain signals and the miscommunications that I have explained to them. I still call it a condition with them too.

              That is so sweet that your child is so helpful. You are very fortunate!

              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                Originally posted by Jennaly16 View Post
                Thank you for sharing this. I have a 5 year old daughter at home and I've often thought about when i would tell her.
                ...
                How did you explain to your children and when did you explain? I thought maybe in her teenage years when she can understand better.
                You're welcome.

                I usually wait for them to take the lead. But I also choice to try to be quick to use a teachable moment.

                With my own children, they were 11 and 12 when my MS started with a bang. Huge flares, big symptoms, hospitalizations, and long recovery times. So we just kept them informed, all along, during limbo, as we searched for answers.

                With your 5 year old, her verbal comments when she notices that you are tired might be that teachable moment that you look for.

                I wouldn't wait until teenage years. I'd stsrt now, in bits and pieces, with age appropriate information. With my grandson, I started at age one when I told him about my cane after he asked, "What's dat?"

                We all explain it differently, probably. I talked about my brain. Seasha talked about her condition.

                NMSS probably has their ideas about how to explain it. I think the link that Seasha posted said something about "multiple sclerosis" means "many scars". I like that. I'll probably try to remember to use that when they get older.

                Mull it over for awhile and figure out what might make the most sense to your daughter. You could probably begin by thanking her for helping you, and then gently launch into the explanation that you decide to use.

                Try to make it an easy topic, not a taboo subject. For example, I sometimes bring up what I **can't** do. Like when we look at a photo of their family hiking, I mention that hiking is too hard for me. Or I let both boys (ages 5 and 3) ride in my lap on the power chair.

                I was so glad that my grandson asked me about it. It indicated that he felt it was **safe** to talk about it with me.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  Thank you both for suggestions! I really appreciate it. I remember telling my cousin when I was first diagnosed. She was 15 at the time. Well, more like my mom pulled her in a room with me and told her I had MS and my cousin looked at me and asked if I was going to die. At the time I was in the middle of my flare that triggered it. I couldn't think straight, half my body was completely numb and I wasn't able to process anything around me. I was in a huge fog between the diagnosis and what I was physically going through. I know my mom handled it wrong and I wanted to learn from her mistake. My daughter appears insightful but I also don't want her to worry. I've been through a few surgeries which i've had to explain because I've had to have grandparents watch her since I was down and out. She will still bring it up "remember when you had surgery and you needed....". She may not always listen to me but she can remember everything Just a really hard subject!
                  Dx March 2018; possible first episode: August 2011
                  Tysabri May 2018-June 2019, Mayzent July 2019

                  Comment

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