United Brachial Plexus Network, Inc.

Hello it has been awhile since I have been on here and summer is just going I tried to get David to take swimming lessons and he says no mpm the other kids will make fun of me, I have tried all I can with my 12 year old and coaxing him into things to do and he just refuses and it is so hard for me to relate to him cause I end up babying him and give in and than every night when I watch him sleeping I cry myself to sleep he just refuses to do his exercises and the damn therapist that we had here told us he would be better off to have the arm amputated and have a artifacial arm well when I told that to Dr. Shin he about died he says it is never gonna happen and damn that therapist to of even said that, I ssit and worry about him all the time and maybe I am over protecting him just a bit but he is all I have after his accident his father left cause he couldn't bear it and he never wants to hear about his arm and he doesn't even go with us anymore to Mayo for check ups so its all up to me and I am so lost. Ellen B if there is any way that you have any suggestions on how to get him to do his exercises I'm afraid that his arm is never gonna come back at all and I'm terrified for him AI just want him to be ok well he is and he deals with it great but some days when the other kids make fun of him it is really hard on him and I just want to crumble it is so hard for me to be strong for him sometimes and of course I never let him see or hear me cry about him that would make him worry about me and he has enough to worry about....HELP

Judy,
I am no expert on this. I got my injury from an auto accident. I know how hard it is to see you child hurt. This must be a lot to deal with.

My suggestion is see if your doctor would recommend a psychologist that specializes with children with injuries/illness. Having someone to talk to may be the best way for your son to deal with his own feelings. It might also help him to want to try to get his own body in the best condition possible. Group sessions might also be possible. Seeing and talking to other preteens that have issues they have to deal with in addition to dealing with their own bodies and emotions going through the normal difficult part of growing up.

I would also report the therapist that spoke to your son that way to his/her superior. I would also find a new therapist.

You may find that you need someone to talk to. A lot has gone on in your life and I’m sure having someone to listen to will help you deal with all that has gone on in your life.

Hang in there.

Janelle

Judy,
I am so sorry you are feeling so overwhelmed. My heart just breaks for you.

Dustin goes through different phases of doing workouts and then not. I know how frustrating it is. He is terrified of the muscle transfer coming up so he said lets really work the arm before. Hoping to avoid surgery, but I have noticed "really work it" now means once a week instead of every day.

Rather than formal swim lessons perhaps you could take him to the pool at a less busy time. Then he wouldn't have to be afraid people will make fun of him. I know the outdoor pool here is pretty quiet during late afternoons and at the y they are quieter in the mornings.
Just being in the water moving the arm will help. We have our house up for sale so we can put in a pool as I think if it is right in the backyard Dustin will use it daily and even though it won't be formal therapy just using the arm in the water will help. When in the water he can move it everywhere. And yes dam that therapist for saying that. It's time to find a different therapist. One that believes things will improve.

I think I also "baby" Dustin. It is hard not to after where he has been. But I am sure we are not doing them any favors by doing this. Maybe you could work out some kind of reward for doing his therapy every day. Like then at the end of the week or 2 weeks or whatever he could do something special that he likes. Or maybe use the tears just once. A little guilt may motivate him. I don't think he needs to see you cry every night but if he realizes how frustrated it makes you maybe he would be a little more cooperative.

I am sorry I don't remember which surgery he had, but have you noticed any improvement since?

Take care of yourself also. If you want to talk feel free to e-mail me.

Sue

Janelle thanks that means alot and yes we have got a different therapist but he just isn't motivated at all he has lost interest in moving his arm again he does have some movement but not alot. I will ask the doctor if there is anyone we can talk to about all of this thanks and his injury was also from an accident he was hit with the air bag on his right shoulder and tore 3 of his 5 nerves out of the spinal cord. Thanks again...

Sue thanks alot for your input David was in an accident and was hit by the air bag on his right shoulder and he tore out 3 of the 5 nerves from his spinal cord and the surgery he had was they transfered muscles and nerves from his left leg into his right arm and than they took the chest nerves on his right side and connected them to the arm and so far not a whole lot his surgery was on January 3, 2006 and Dr Bishop says it is too early to tell and that I should not worry but how can you not worry about your loved ones and his father is no help at all when he tells him he will never work a day in his life and other stuff and David will be able to do most normal things he already is and he is very challenging too but when it comes to those exercises he just refuses and it is so hard for me to deal with at times I know he is only 12 and yes he should listen to his mom but he has a mouth and loves to use it well he has learned to do that from his dad and speak his peace. Thank You so much for your input...

Judy, this kind of injury is one where we just need breaks from therapy. After surgery is not really a good time for a break but maybe he just needs a break. Also his age does not help at all. My injury is from birth so I know there is a difference but at 12 I dont remember doing any therapy as far as strengthening. I had stretches at school once a day but thats all. His being a traumatic injury other kids might make fun because it is differnt than what they remember. He also knows this difference and he is hurting. Eventually he will accept this difference but for now I think he just needs to greive his loss.
I wouldt push too many things at this point. Try a break and see what happens. He may want to start his therapy again all on his own.
Good luck!
Hugs,
Amy 20 years old ROBPI from MN

Here is what Dustin's perspective is on therapy right now. Last night when I asked him about working out the arm he said we have. For a long time. "I am not insane, do you know the meaning of insane? To do the same thing over and over with the same results and expecting different results." He has worked it out for nearly 21 mos hoping to get the bicep strong enough to work in gravity, so now he feels it's insane to keep trying since the results have been the same for this long. I am sure that this frustrates these kids too. But, he did say he will try again after surgery.
Sue

Judy,
I know how frustrating it is to try and help make life better for your child but you just can't. I know when my daughter would get depressed and give up, I'd try to refocus her thoughts onto all the things she can do and not dwell on the things that were difficult for her to do.