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

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    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
    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)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      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

      Comment


        #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.

        Comment


          #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
          Blog:
          Does This Wheelchair Make My Ass Look Fat?

          Comment


            #6
            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
            http://justadollarplease.org/

            2010 SCINet Clinical Trial Support Squad Member

            "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

            .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

            Comment


              #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
              "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

              Comment


                #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
                The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                --General George Patton

                Complex problems need to be solved collectively.
                ––Paul Nussbaum
                usc87.blogspot.com

                Comment


                  #9
                  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.

                  Comment


                    #10
                    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.

                    Comment


                      #11
                      b, you are twisting my words. The kids spend 1/2 day at our center. We show them about wheelchair sports, have them talk to people with SCI who work, go to school, lead active lives. We only talk about the cure issue for about 10 min, and we certainly never "push" kids to donate. The handout is give only to those who ask for it.

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                      Comment


                        #12
                        Dr. Wise,

                        Talk to them just how you talk to us about hope. Tell them about living life, using examples if you have to of the others who are doing it..I love when you say.."my friend Kent Waldrep" or "my friend Peter Morton". Explain to them that a cure in the future is something to believe in, and take ownership of, by being supportive and patient the way things are for them today. I can see you...like I have with my own children..sitting at their level and talking to them eye to eye...you will put your hands on their shoulders and talk to them, and be honest about what you are hoping for. Tell them only truth, not lies or fiction, and let them tell you what you think and know. It only has to be simple..that you and a bunch of other scientists are dedicated to finding what no one has been able to find before. Tell them it is complicated, and that they will hear things in the news but to enjoy and live life to the fullest while they watch for things to come. No matter what you say...you probably know already that kids love you...you make what I believe is ...a lasting impression.

                        Good luck...Mary
                        1FineSpineRN

                        Comment


                          #13
                          KLD If that is the case please accept my apology.

                          Comment


                            #14
                            Thank you for all the thoughtful comments. Wise.

                            Comment


                              #15
                              I talk to young people as part of their Personal and Social Awareness classes they are around 15 /16.

                              I tell them that a cure is closer than ever and that although many people with old injuries may not ever be "cured" a day will come where new injuries have a greater hope of healing. They often tell my that they know all about Christopher Reeves "recovery" and this depresses me because they have latched on to the "positive" hype.

                              We often debate about whether a 40 / 50 year old with a long standing injury would choose to put their life / career on hold to go through a long period of treatment / rehab which had a limited or unclear chance of success.

                              I tell them that a cure is only part of the solution and while they wait for the smart guys and gals in the lab to find a cure, their own actions in treating disabled people equally, advocating for good access, accessible and affordable personal assistance, being inclusive, parking responsibly and understanding that life can be good even when paralysed actually helps lessen the disability we experience.

                              I stress above all that waiting for the cure is like waiting for a bus except you don't know when a bus is coming, or if when it comes it will be the right bus for you. Five years ago we didn't even know if we were on a bus route or if a thing called a bus was even possible but now we know that somewhere scientists have made pieces of buses and soon someone will put them together in the right order. In the meantime we need to continue our journey by whatever means we can, doing interesting things and meeting wonderful people along the way in the hope that one day a bus will catch up with us.

                              Tinbasher
                              The Lake District UK
                              Tinbasher
                              The Lake District UK

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