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    worried about son

    My son Kyle was injured last sept 1 in a diving accident. He has a c5/c6 spinal cord injury. Kyle has recently turned 18 years old. I have been a little worried about him. For the past few months Kyle has had me worried. He never wants to do his range of motion, his eating habits are terrible, he doesn't do any kind of exercises for his upper body. He got his power chair in the middle of june and since then he never uses a manual chair so he doesn't even get to exercise his arms that way. He has started smoking (which he used to do off and on). You can see that he has lost alot of muscle and weight. When I bring this up or try to get him to do something he tells me that its his life, he's 18 and can do whatever he wants. I was just wondering if anyone has dealt with this kind of situation and has any advice.


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    Dawn

    #2
    I was paralyzed young too. My injury was @ the age of 16. I'm a paraplegic so I can't relate 100% to your son. But, i was angry SOB for a lot of years and my mother was there the most so she got the worst of it. It's such a tough age. I'm an entirely different person than I was then. But, when stuff goes wrong, my mom still seems to get the worst of me @ times and i'm 31 now. There is life after sci. He has to find his somehow! I went to back to high school for my senior year after my injury then went away to college. That helped me realize that I could live on my own and be someone in this world. I don't know if any of that helped. I just wish you the best and hope he starts caring for himself a little more. The better shape he keeps himself in, the easier his life will be.

    Good Luck,

    ~John

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      #3
      I see that you're close by... I'm guessing he went to Dupont? I went to Magee but a close friend of mine went down there in Delaware. Do they offer any support groups for family members there? I know that Magee in Philadelphia does. Maybe you could look into something like that. I used to visit young people when I was younger. I'm not against it but I don't know how much i could relate... I'll throw it out there if that's something you'd be interested in. I have a lot of battle wounds from 14 yrs in a chair but also a lot of good. More good than i ever imagined!

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        #4
        Are you his caregiver too? Does he live with you?

        You may need to consider some tough love. Insist that he get counseling and treatment for what appears to be a pretty significant depression.

        Make this a condition of him continuing to live with you and for you to be his caregiver. Tell him that if he is an adult, then his choices are to 1)move out and get his own place, take care of himself (or arrange his own caregivers), etc. 2) go to a nursing home, or 3) start to cooperate with his care at home, get therapy (both physical and mental), and work on taking responsibility for his health. I would also tell him he is not allowed to smoke in your home...and stick to it. Who is buying his tobacco?

        (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.

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          #5
          to jsnova, Kyle actually did go to Magee and they were wonderful. I am his full time care giver and have been since the accident. He is perfectly sweet and nice as long as I don't try to talk to him about taking more care of himself. As for living with us, he is certainly not smoking in our house. He smokes while he is out with friends (which has been everyday this summer). We have always had a no smoking rule, noone in this house smokes, so it drives me nuts that he picked up this habit. We havn't been in therapy since June because both our insurances have denied anymore and with my lose of income things have been financially hard. So I try to motivate him at home, and he feels I'm naging him. (kind of a mom thing I guess) We have had some harsh fights since his accident because of course, I am the one he takes it all out on. I get that and have been trying to understand but also not be his punching bag. I can give as good as I get. I just wonder if this is something he will grow out of. I so don't want him to wish 5yrs from now that he did more to take care of his health. He is starting school in a week since he missed his senior year, this should be interesting he has hated school since he started 1st grade.


          Dawn

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            #6
            Hey Dawn,

            I sent you a private message! I didn't want to get to personal out in the open....

            Hang in there!

            John

            Comment


              #7
              I think being around his old friends will definately help i.e. back in school.

              Would he be interested in adapted sports? That can instill some confidence at younger ages, especially being around people with similiar injuries.

              I was paralyzed at a young age as well and the above helped tremendously.

              Pressuring him to talk will make him want to get further away from you ... at least that was my experience. When he's ready to talk, he'll approach you.
              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                #8
                I am sorry that you are having a tough time with him. I was my fiance's caregiver after his injury. He is much much better now, and there is really no physical care to give. Things are still not 100% for him though, and we have our bad days. His bad days are hard for me. Most of the time I am focused on trying to do whatever it takes to make him feel better. I have realized how draining this can be for me. It is so hard to see someone you love so much be so upset- it's upsetting for you. So not only are they upset, but you become upset as well. And then you try to make them feel better- but what if you can't? There are days that my fiance completely shuts me out. When it becomes too much for him, instead of turning to me for support he goes to bed and just shuts the world out. More than anything- this is what is hard for me. I WANT to be there for him. I WANT to make him feel better. Sometimes I just can't.

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                  #9
                  Originally posted by cary's love
                  When it becomes too much for him, instead of turning to me for support he goes to bed and just shuts the world out. More than anything- this is what is hard for me. I WANT to be there for him. I WANT to make him feel better. Sometimes I just can't.
                  My husband Bill does the same thing and he's 61 years old and taking an anti-depressant plus he's been injured over 10 years ! Accepting what we can't change is very difficult ...... I just leave him be now instead of beating my head against a brick wall .... some things are simply out of our hands!

                  Booklvr20 your son has his youth on his side ...... I'm certainly not advocating smoking but his defiance of you doing it in spite of your disapproval sounds like a normal and typically teenagery braty thing to do and has nothing to do with his sci (except for the vulnerability of his lungs) ..... but maybe that's a good thing exerting some independance even when he knows it's bad for him ....

                  I'm guessing he's probably still pretty angry about his injury ... there are some that might suggest using a tough love approach and of course there is always councilling ... but I am going to defer to the other parents of kids with sci here. Their advice will be far more valuable to you than anything I could suggest because some have already been where you are ......

                  I'm glad you found us and I wish you all the best ...... any chance you could entice Kyle to come here?? ... there is lot's of peer support here and they usually don't mince words with one another ...... when he's ready !!

                  Obieone
                  ~ Be the change you wish to see in the world ~ Mahatma Gandi


                  " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
                  Jane Siberry

                  Comment


                    #10
                    Booklvr,
                    I was injured at 17 and definitely went through a phase of not caring if I took care of myself or not, or not much. Part of it is simply that he is young (with all the normal attitude problems of that age) and it does sound like he is depressed, which is normal. I think a support group would be great. I am a C5/6 and when I found a para/quad group to belong to I realized there was life after SCI, a very full life if you strive for it. No quad shoud smoke, period. When I was injured I smoked because I was a dumb teenager and thought it looked "cool." A doctor brought me a small baloon and told me that he bet I couldn't blow it up, but that if I could he wouldn't be so adamant about not smoking. I thought he was crazy, sort of just assuming I could still blow up a kids baloon. Wrong.....couldn't do it. I stopped right after that and have never smoked again.

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                      #11
                      I guess maybe me giving him his space is what he needs. I know I can't change anything for him, but I DO love him and want him to know I am there for him. Problem is- when he won't let me be there for him I have no one to be there for me either. I am sure I will get there- to the point where I will know he just needs to be alone for a few and it doesn't mean he doesn't love me. I just feel like when he is isolating himself he is also isolating his feelings from me. It hurts, you know?

                      Comment


                        #12
                        Textbook depression ... and who can blame him?

                        School may jump-start him out of it in terms of re-gaining motivation although it's bound to be full of ups and downs. Ideally, he'll get excited about "what's next" after high school ... job, college, living on his own, getting involved with the rehab hospital as a mentor or maybe getting into some team sports ... all those things provide a lotta motivation to take care of yourself.

                        Either way, the kid needs counselling. This stuff is hard!

                        Comment


                          #13
                          Originally posted by booklvr20
                          to jsnova, Kyle actually did go to Magee and they were wonderful. I am his full time care giver and have been since the accident. He is perfectly sweet and nice as long as I don't try to talk to him about taking more care of himself. As for living with us, he is certainly not smoking in our house. He smokes while he is out with friends (which has been everyday this summer). We have always had a no smoking rule, noone in this house smokes, so it drives me nuts that he picked up this habit. We havn't been in therapy since June because both our insurances have denied anymore and with my lose of income things have been financially hard. So I try to motivate him at home, and he feels I'm naging him. (kind of a mom thing I guess) We have had some harsh fights since his accident because of course, I am the one he takes it all out on. I get that and have been trying to understand but also not be his punching bag. I can give as good as I get. I just wonder if this is something he will grow out of. I so don't want him to wish 5yrs from now that he did more to take care of his health. He is starting school in a week since he missed his senior year, this should be interesting he has hated school since he started 1st grade.


                          Dawn
                          Hi Dawn, I've highlighted above what I think is a huge silver lining in your cloud.

                          In the UK rehab. times are very different from the US so I, a C5, had only been home for three months or so a year after my injury.

                          After getting home it took me many more months before I had the confidence and mental strength to go out with my old friends on a regular basis.

                          I think it's bloody marvelous that your son has spent most of the summer out with his friends seeing as he has been injured for less than a year!

                          As for smoking - I urge you to give him a break, he feels different, isolated, a bit of a freak even, smoking helps him fit in, it's something his peer group does and he can join in, he's young, there's plenty of time for him to quit.

                          All the best,

                          Jonathan.

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                            #14
                            thanks everyone for your comments and most I agree with. I am getting off his back about smoking, he knows how I feel and knows that he's not to do it in my house so if he does it with his friends what can I do, except hope it's a habit he breaks quick. I am really happy that he has had a fun summer getting out with his friends and hopefully he will start taking his health seriously while in school. Just worried, thats what we moms do best.

                            Dawn

                            Comment


                              #15
                              Does he think about his future...have some goals he's working toward? That could go a long way in helping him move in the right direction. Also, even though your insurance won't pay for counseling right now, he could probably see a counselor at school for free. That could help him with some career planning and with some of the emotional stuff he's going through.
                              "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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