Page 1 of 3 123 LastLast
Results 1 to 10 of 23

Thread: Need advice concerning what to say regarding cure to children of a friend with spinal cord injury

  1. #1

    Need advice concerning what to say regarding cure to children of a friend with spinal cord injury

    At the Rally for the Cure last week, the wife of a good friend with spinal cord injury came and asked if I would speak to her children who have been seeing all these things on television suggesting that a cure for spinal cord injury is coming and that they are expecting their father to walk. She asked if I would speak to the children and explain to them what this means.

    I was wondering what people are telling their children concerning the cure and what their responses have been. Will they understand or become disappointed if it doesn't happen right away? How have you handled this situation?

    Thanks.

    Wise.

  2. #2
    I don't have children, but we do have a SCI Awareness program for elementary aged children where I work.

    We always tell them that scientists are working very hard on a cure for spinal cord injury, and we hope that it will occur soon. We also tell them that more money is needed for this and that it will not happen right away. They always ask about what they can do, and we have a handout that they can give to their parents on fund raising needs. Since we work with the PVA chapter closely, and they do fund raising for cure research that is happening at our affiliated university, this is what we promote the most. Some of the kids send in their nickels and dimes too!

    (KLD)

  3. #3
    Senior Member
    Join Date
    Dec 2003
    Location
    Burnsville, MN, USA
    Posts
    143
    Our daughters were 10 and 12 during the summer of 2000 when I was injured. I think it actually helps that they were in the vehicle with us when our Ford Explorer rolled over. They understand what happened so that's one issue we don't struggle with. It quickly became an issue of, "this happened, now what".

    Our approach has been to keep the girls informed of the emerging promising treatments while emphasizing the need to focus on what we have now and live life to the fullest given what we have to work with. Tomorrow is never guaranteed. They know that return of some function is something I dream of always, and, it's getting very close. In the meantime, we won't put our lives on hold waiting for that time in the not too distant future.

    Thanks,
    Sue

  4. #4
    It's interesting to see how every conversation on the cure reverts to FUNDING. Funding, funding and more funding. What I would point out is that the person with the SCI is still a whole person. I would point out that life does not end with a SCI but it is difficult. Pushing children to raise nickels and dimes could make them feel responsible and guilty. Being there is no current cure I would stress that things are being done now to add to a fuller life for someone with an SCI currently, but in addition also work is being done to find a cure in the near future. Children are impulsive, they want quick solutions, I think they would feel more assured about current ways of coping.

  5. #5
    I think kids can probably grasp having to wait, because they always have to. We always tell them...you can stay up, drive, hang out with friends...when you're older. Do you remember thinking that when you were grown
    up, everything would be gravy?

    I think it is good for them to know that people are working on a cure. Also, that there are risks involved and people brave enough to chance it. And people dedicated to spending their lives working on it. Hard work, dedication, courage, a goal...these are good things for kids to see.

    C5/6 incomplete, injured Aug. 2000

  6. #6
    Senior Member Leo's Avatar
    Join Date
    Jul 2001
    Location
    Yankton, South Dakota
    Posts
    4,005
    Wise, I doubt that your friends husband has been injured as long as I, but from the little I know I expect to be walking by the age of 60. I'm 48 now. Hell I expect to be dancing at that age and my dance card is filling up fast. I have that much faith in you and all the others working to make this happen. My children are in their 20's and they know it's going to happen, and not just cause dad says so.

    I spoke to 200 kids yesterday, 40 at a pop, each group for 40 minutes. (about drunk driving) This is a group I spoke to one year ago and they were the first people in public that I shared my plans with to go to China and why. The next two weeks unkown to me these kids brought coins and dollars to donate for my surgery, they were the first to do so. Yesterday I got the opportunity to thank them and show them what their donation and act of kindness accomplished. They asked me if I would walk again and I said I expect to. Of course I told them it would take years and a lot of hard work and other surgeries.

    An expectation is not a promise. An expectaion un-met more often leads to a demand, and like mentioned in another thread we've expected and demaded to little in the past.

    "All you have to decide is what to do with the time that is given you."
    Gandolf the Gray

  7. #7
    Wise;

    This is an excellent topic and an issue that may be answered better if the question is reversed. That is, what is it that children can say to us adults to help us cope? Children are a great source of inspiration to me. Their innate optimism and willingness to accept the possibility of miracles puts most of us adults to shame. We are hardened by the capriciousness of life whereas the innocence of children allows them to readily say and think, "Why not?" We doubt, they believe; we question the impossible and children accept it with enthusiasm. I believe that the most successful of scientists are continually resourcing the child within themselves. Their passion for discovery is childlike in its innocence. All the mature naysayers disputing the cure for SCI are just constipated with their own self importance.

    Accordingly, in speaking to her children, this woman should be straight forward. Tell them that solutions to the problems of spinal cord injury are difficult but doable. If you believe you can, eventually you will. Children need to hear this from their parents and teachers and all other mentors, their whole life long about everything they do. We cannot guarantee your dreams will come true. But we can guarantee they will not if you don't try.

    I am much more confident talking with nieces and nephews about my son's prospects for recovery. Thus far, they seem more accepting, albeit slow, of the progress than adults. They do not easily lose hope.

    John

  8. #8
    I think that children can handle the truth. I believe that the future looks much better to repair the damaged spinal cord now than when I was injured back in l987. I think that the future looks more like a Jules Verne wonderland that a Franz Kafka nightmare. However, one more serious hit on the United States by terrorists can potentially throw everything off track. I would not mention this if I were talking with children.

    PN

  9. #9
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    Location
    bellevue, wa, usa
    Posts
    10,992
    What have we told them? The truth--which is that we don't know. We talk about our own sadness, impatience, and hope. We talk about our despair, and when things are funny we talk about that.

    We let them in (in a limited way) on whatever seems to be happening with us, and that varies.

    How do they react? LOL, sometimes they're bored. But whenever they're asked to write a personal essay, they both write about their dad. They talk about how determined he is, and how patient, and how much they admire him, and how much they want him to all the way well.

    In our case, things were very wildly horrible for about six months, and then for the next 2 and half years have become much, much better than predicted. Maybe that's made it easier to keep talking . . . but I don't think so. It's our normal pattern to process everything out loud if we possibly can.

  10. #10
    Senior Member
    Join Date
    Feb 2002
    Location
    Louisiana
    Posts
    2,912
    When I told my children about attending the Rally for a Cure in NYC, they were so excited. I realized then that neither Scott nor I had ever talked to them in a serious way about the possibility of a cure. We'd always focused on his courage and optimism about each new day--and there's nothing wrong with that. But this seemed to awaken hope and excitement in them, which fueled mine even more.

    So I told them that some very smart scientists all over the world were very close to finding a cure, but that it still might be a long time before Daddy could walk, because his injury is so old (almost 28 years post). However the work being done now would help those people who had recently been hurt. There was still work to be done, and that would take money. They seemed to understand that.

    Scott's sci has been an excellent means of teaching the children about the function of the spinal cord and how it affects the body. I can only imagine what a cure for sci would teach my children--and the world--about the power of hope and a determination to conquer a seemingly invincible enemy.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •