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Thread: Explaining SCI to a 3 y/o

  1. #1

    Explaining SCI to a 3 y/o

    Violet is very sad that I can't walk. I've told her that mommy was in a car crash and drove off the road and that now my legs don't work. 'yes they do' she says 'and wiggles my knees with her hands'. But I can't stand up or walk I say, then shes kisses them and tells me to try again. Or tells me we have to go to the dr. I tell her dr.s can't fix everything but she doesn't believe me. She knows I do a routine to poop and use a catheter to pee because mommys bum (where she things pee comes from) is broken.
    Obviously this is a heart breaking conversation for me (and her - she often cries, me too sometimes) but I just don't know how to explain that its permnament. She sees photos of me standing and says 'when you was borned you could walk'.
    I can explain babies in tummies, why flags are at half mast, why that grown up talks funny but I can't explain this one satisfactorly(sp.).
    I'm trying to get together with other people in wheelchairs more often so she sees that its not just me...


  2. #2
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    Emi
    I have been where you are at too. My daughter was 6 months old when I had my accident. In my experience the least amount I tried to explain the less confused my daughter was. I don't really remember her being stressed out about my not being able to do things or walk like she does. I always told her that I was this way because mommy hurt her legs. In time she came to understand better as she got older and I was able to explain more. Just this morning I explained the spinal cord to her and she is 17 years old. Sometimes things just are just like the sky is blue.......LOL I know how hard this is for you and her too. It is good that she can see others who are disabled too. My daughter didnt have that benefit because at the time their were few of us in my little town. I know in my own experience if I worry about bills and she sees me worrying, it tends to make her worry too. I guess the same is true with SCI......Some of my daughters friends freak out if I make a joke about not being able to feel my feet. It is just because most of them have never been around anyone handicapped. They learn though.....You will be amazed at how your daughter will adapt to you and in my own case.....my daughter is much more attentive to the needs of others and their feelings.

    Good luck.....she is such a cute little girl.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  3. #3
    have you tried looking for childrens books about a handicap story......... or maybe write one yourself, i know she's 3 but kids are smart, its all in the way info is presented
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  4. #4
    Senior Member wheeliecoach's Avatar
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    I had that problem with my Godson...the last time he saw me walk...he was one...so he does not remember much of it...now he is 5, and is very inquisitive. Because my inability to walk is due to a disease, I told him my legs are sick. He seems to accept that answer.

    It is hard trying to make sense of everything for ourselves. I never even thought about how I would answer that question for a 5 year old. I wish I could accept that answer as easily as he can.

  5. #5
    I cannot give you any advice. I have a 2 1/2 your old daughter and we haven't had to cross that bridge yet. She will grab my hand and tell me to come to her room sometimes. So I drive in that direction and let her think she is pulling me along. It really breaks my heart as well that I can't do as much with her as other parents. With me not being able to use my hands, it really sucks. But on the bright side of things she is extremely patient and very helpful to me. She seems to understand that I cannot do things and need help.

    My wife and daughter went on a little vacation to visit her parents who live in another state and were away for four days. When she came back on Monday she was a little shy at first, but the last couple of days she has been more affectionate to me than ever. She's been climbing up on my wheelchair giving me hugs, wanting me to play games with her, etc.

    I can get pretty depressed if I dwell on things, especially when I'm in a lot of pain which is a daily thing for me. But then seeing how much I make a difference in her life makes a huge difference in mine. Sorry to just ramble along on your thread... it's tough but if you find some helpful ways of dealing with that, please let me know.

  6. #6
    Senior Member krajaxa's Avatar
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    Emi,
    Well, we had a little incident about two weeks ago when hubby was coming up on his stairglide and one of the twins was sitting in his w/c. When hubby asked him if he could have his w/c back he said no and told him to go. It was hartbreaking, I think he is really starting to understand that his legs don't work. They do like to come up to other people in w/c and just touch their w/c and tell them they are like their daddy's. At this age (28-months) it's really hard for us to explain anything. Our nephew is 5 now and he just says that Uncle Bobby's legs don't work anymore because he hurt his back really, really bad. He has seen his scar too. The rest of the nieces and nephews were older when he got hurt.
    I try to get hubby do things with the twins that he can (they love to read or play on the computer) and we are fencing in our back yard so they will be able to drive like little "maniacs" there and hubby does not have to worry about running after them. It's hard for him not to dwell on things too...

    krajaxa
    (a wife to t10 and mother of twin boys)

  7. #7
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    All these kids are going to grow up to be compassionate loving people. My daughter went to the Ga Mountain Fair the other night. They had a contest to crown Miss Ga Mountain Fair 2006. The young lady who won stood up and declared she was going to college to be a doctor/scientist to find a cure for people with spinal cord injuries. It turns out her mother was in an accident and was paralyzed.

    My great grandmother used to say what doesnt kill us makes us stronger. I have to say I am a firm believer in this. Even with all my struggles and tears, I have a pretty good life.

    My daughter will graduate in 2007. A few years ago I found out she had carried a backpack for a little girl Cerebal Palsy all through elementary school because it was too heavy for the little girl to carry. She didnt do it for attention......she did it because she knows what it is like to struggle. I never even knew..... Your kids are going to have similar stories......they will grow up to be strong independent people who will make a difference in the world because they will know about struggles.

    I am happy you are getting out and enjoying life with your daughter Emi.....She looks alot like my baby did........LOL she will be my baby when she is 90.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  8. #8
    My daughter is 9 and she still tries to get me to walk once in a while. She'll say things like, "Just concentrate as hard as you can and try to move your leg", or, "I'll help hold you up and see if you can stand". She doesn't get upset that I can't do it. She just thinks she can help.

    The only thing that seems to upset my daughter is when we are in a store and some kid is staring at me with wide eyes and mouth hanging open as if I were the freakiest thing they've ever seen. Funny thing is, that is also the only thing that really bothers me (regarding being a parent in a chair). Kids totally mimic how an adult parent feels. I'm trying real hard to not let the stares bother me, but I haven't been successfull. I'm fairly certain that if it didn't bother me, it wouldn't bother her. We sometimes talk about it. Just the other day we left the grocery store and she asked why everyone was staring at us. I told her that I thought it was probably because they don't see many moms in wheelchairs. She said, "Yeah, I guess so. It's just weird because you're normal to me."

  9. #9
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by Shannon
    Just the other day we left the grocery store and she asked why everyone was staring at us. I told her that I thought it was probably because they don't see many moms in wheelchairs.
    I always (still) hate that too. One day a friend gave me a different perspective though .. maybe they wonder why such a good looking gal is in a wheelchair, just maybe they're admiring you.

  10. #10
    Quote Originally Posted by lynnifer
    I always (still) hate that too. One day a friend gave me a different perspective though .. maybe they wonder why such a good looking gal is in a wheelchair, just maybe they're admiring you.
    I think people are just curious. I don't mind. Usually I catch their eye and smile and maybe start a conversation.
    Kids are innocent. A 5 year old boy at the park asked me why I was 'on that thing', I replied that my legs don't work so I have wheels. Cool he said, then how do you get in your house? I have a ramp I said. Then how do you cook he asked (the important thing, really...lol)!

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