United Brachial Plexus Network, Inc.

( I'm obpi, age 20)
I was reading all the restraint therapy thread and got to where Marymom asked Jameson questions about therapists and what he thought about them. So I thought I'd throw in a couple of cents on this perspective. I hated therapy. It was something my parents seemed to make me do because they wanted things so much better, but the truth was I was just fine the way I was. Realistically, I was an active kid, climbing trees, hiking around, swimming, football, baseball etc. I'm suggesting that parents might fixate too much on therapy and see how much therapy your kids do for themselves all the time. Yes, obpi kids compensate, that's a fact, and it won't change if you restrain one arm. I think that what Kristie and the others were suggesting is to help the baby by forcing him to use his injured arm, and that's a pretty good idea, it comes into trouble from the child's perspective because it is very very frustrating to not be able to move the way you want to. I don't think that it is possible to understand paralyzation if you haven't experienced it firsthand. I know that's harsh and maybe it's self righteous but it's so hard. To wiggle my toes, I just do it, I don't think, but when I try to raise my arm it hits a point, and theres no more. It doesn't matter how hard I try. It just doesn't happen. Add to that parents who want so much to see improvement. So, you can't do it and you're letting them down as well. That's really rough on a child. I think that is what Kath and Jameson were expressing to you. They were trying to warn, I guess I am too, I just want these kids to have it easier than I did, because while Kath experienced blatently offensive people forcing her to do what they thought she could I grew up with 'oh, you can't do it, well, sit over there and watch then." Try any therapy that will help your child grow, but be so carefull because you don't want to add to the frustration that they feel. Just let them play sometimes, it's a two armed world so that injured hand will get use. It's hard every day. Thanks for reading.
Carrie

Hi Carrie, Thanks for sharing your experiences. You reminded me alot of my daughter who is almost 10 years old and has a left OBPI. She has always been happy with herself just the way she is. She is also a very busy, athletic kid who likes to climb, swim, wrestle her Dad and sister, ride bikes - everything - she is always going, and right now THAT is her physical therapy. Therapists have always suggested many ways of trying to improve her arm and it came to a point where I had to decide if trying to improve her arm was taking over her life and which was more important (a well adjusted happy child or an unhappy, frustrated child who is constantly reminded that she has an injured arm) I used to worry that she might think that all of the things being done to her to improve her arm were somehow punishments for having an injured arm. (It's hard to know what exactly goes through a child's mind). Our therapist had suggested night time casts a few years back and Brittney hated them. She didn't like not being able to bend her arm while she slept and it was a hard cast. I knew she was mostly doing it for me - she sure didn't care if her arm was alittle straighter. Alot of mornings I'd find it laying on the floor - she had tossed it off somewhere in the night. I quit asking her to wear it and we were both happier. The therapist also suggested using E-stim. She was such a busy kid and it was frustrating for her to be all hooked up, and she thought it hurt. She was around 5 or 6. I found that taking her swimming and acting goofey together - kickboard races, making faces at eachother underwater, just having fun - we were both happier and she seemed to get more out of it all around. We both accept the fact that her arm will never be exactly like her other arm and that has made life so much better - just accepting it. It's so hard as a parent though to know when to push harder and when to accept, and it's scary to think you might not be doing all that you could be doing. Please keep posting Carrie. I'd really like to hear anything that you want to share. Thanks again, Christy

Carrie

That was really-- right to the point...
yes! I still think every once in a while I could make my arm move if I thought harder...but it still ignores me... great post
Kath

Thank you for your view. My daughter is six and has not had surgery but we are expecting one in March. I have always noticed that therapy makes her frustrated, and she really was not interested in participating. She would wait until we got home and she was alone and then work on the exercises! Always she would be improved when we went back to the therapist. When she was younger we did range of motion exercises daily, but now she does them on her own lying down. She is very active too and we encourage her to try anything! Even at School I have asked her teacher to encourage Ashley to try anything she wants in PE. So far she trys it and enjoys it. She and I often talk about her arm and she really is excited about her upcoming surgery which will allow her to lift her arm a little higher. Thanks once again for your insight.

Lenni

I agree that we don't want frustrated children and we have to use our judgement. If a toddler doesn't want to work that day then skip it. I felt like restraint for 15 minutes a day was better than me harping 24/7 use your arm.There are so many things we do with them that are therapy that we don't even know it. My 5 year old plays basketball,soccer, rides a bike and a scooter, all things I didn't think she'd ever be able to do.The TES at night was key for her.All these things when started in infancy and toddlerhood are normal to the child. We haven't gone to formal therapy for 2 1/2 years since part c quit paying.
Another thing to think about too, on the parents part ,with every doctor visit we hear all the questions, Are they in therapy, why not, how much, Have you tried this ,have you tried that. And well meaning people ask you have you tried shriners, have you heard of this doctor etc. It gets frustrating because you want to do what is best for the most precious gift in your life and theres so much information out there you have to weed it out and see what works for you and your child Everyone is different. Every BPI is different and every therapist is different. I pray every day I'm doing the right thing for her. I think balance is the key. Oh well, it's just a parents point of view.

Bravo Carrie..I knew you were going to jump in sooner or later chicka. Where have you been, are you doing okay? haven't heard from you in sooo long. hope all is well. And yes guys, I am just as guilty as the other parents but I still require a dose of reality from Carrie every once in a while.

christy and katie

i'm new to the board today, but find everyone's perspectives very interesting. i'm a 33 yr. old who suffered my bpi due to a surgery 7 months ago. since my corrective surgery back in sept., i have shown some rapid improvements according to my occupational therapist, but can relate to carrie's frustration. as of 2 weeks ago, i recently started to bend my fingers again, but yet to feel i'm progressing as quickly as i'de like to. then i stop to think that just 3 months ago, i had no movement of my right arm at all, so i try to put things into perspective. it is a frustrating thing, but everyone including myself have to realize and be thankful for the fact that we have the medical technology to at least be given the chance at a normal life style again, with a little determination and patience. best regards, joe

right on Carrie, and Christy too-
lifestyle therapy is what we call it in our house!