United Brachial Plexus Network, Inc.

Hi Everyone!

CA is very different from NY!

We have an OT for our 3 1/2 year old boy with a severe ROBPI. He is insisting on calling his right arm Righty and left are Lefty. What do ya'll think about the naming of arms....? This seems similar to the whole "good arm" "bad arm" thing.... Am I just simply wrong about this? Couldn't we just say "use your right arm" or "use your left arm"?

Jennie

righty and lefty is babytalk IMO. We just say right arm and left arm. To each their own I guess. It's your kid, tell them what YOU want his arm to be called...

Honestly it makes no difference what your child wants to call his arms. He is 3 and a half! If he is still doing that at 12 then it's an issue. Most of us OBPIs have some type of names for our arms, I mean as kids. It's normal and I really do not see what the problem is. There was a discussion about this awhile back, on what we called our OBPI arms as kids... It does no harm in the long run, we are all normal, well adjusted adults now.
Marieke (31, LOBPI)

oh i forgot to add, when sarahs arm hurts, she just says "momma rub my hurt spot"

Jennie:
Juliana is 8 and calls her arms "leftie" and "rightie". I was dead set against it at first... her therapists started it. And, she was about 3, when we aged out of Early Intervention and had to go to new therapists. Here's a news flash: there is SO much more to life than worrying about "lefty" vs. "left arm."

I tell Juliana to "use your left arm". She says,"lefty is tired." Sometimes she says, "would you rub my left arm? it hurts."

Marieke is right... he is 3 1/2 ! DO NOT SWEAT THIS! If he is "severe ROBPI" --then you have bigger fish to fry than what he calls his arms.

When one of my kids was little she didn't like ricotta cheese. If we had baked ziti we had to ask for it without the ricotta. If she found it in there, she would say that it had "bickies". Don't ask me where that word came from, but it was "bickies" and it specifically referred to ricotta in anything. She is now 12 1/2 and doesn't even REMEMBER why she called it bickies and had to be reminded that it was ricotta that started the bickies thing! Especially since she now loves ricotta! Go figure.

This too shall pass. Before you know it, you will be asking about Kindergarten, then middle school, then dating.

Enjoy CA (where are you CA, btw?), and have fun!

claudia

I think its ok to name them anything that doesn't reflect negatively on the affected arm. We never call Kayla's arm her "weak arm" or her "bad" arm because she would live up to the expectation of that label. I think righty and lefty are fine (our therapist do)because it will help her understand that there is a difference but at the same time not give her the idea that she doesn't have to work hard because one arm is supposed to be weaker than the other. Does this make sense??

Thanks for all the responses!

We live in Marin County--just North of San Fran. It is beautiful. However, in NY we had 5 times a week of therapy and here he gets 1 hour a week of OT.

You're right--there are so many other issues to worry about. It just seemed like a huge issue yesterday.

Douglas will sometimes run away from his OT, saying he doesn't want to do an activity... he runs to Momma of course (me) His therapist said that I may have to leave the room. This doesn't seem like the right answer to me.... I don't actually WANT to leave the room...

Also Do I need to insist that Douglas dress himself as much as he is able to every day? It's SO hard for him... how much should I insist that he struggle through and how much should I assist him with...?

Jennie

Jennie:
As for running away from the therapist...we've all dealt with that. It may be that your son just needs more time to get to know the new OT. You just made a really big move and he is probably partially reacting to that. Some therapists don't like parents around AT ALL. That bothers me. Some will let you stay if it doesn't have a negative impact on the work they are trying to do. When Juliana aged out of EI, we had to move to a facility to have her OT and PT done. Prior to that, almost all of her work was done at home (occassionally we would meet our OT at a facility if she wanted to work on something in particular). The basic rules of the facility we moved to were that the parents stayed in the waiting area, and the kids were brought out and back by the therapists. At the beginning of this, Juliana wouldn't go with them. She is quite shy (at first) and does not like change. They were understanding and set clear parameters for her: mommy will bring you back, you pick the first thing we do, then mommy sits in the waiting area with the other mommmies. She agreed to the parameters, and tho somedays were better than others, she managed to move to just going with her therapist when she came out to the waiting area. I also found that she did better early in the morning, when the facility was quieter. When we had to go after school, it was loud and busy and she hated it.

As for dressing...you might want to work with the OT on this. Perhaps he is trying to put his clothes on the way you or daddy do. He needs to find "his own way". Juliana is the youngest of 4, so I lined her sibs up and hand them take their shirts off and put them on and Juliana and I talked about whether that would work or not. She found a way to do it, and dresses her self every day. She can even put on a one piece bathing suit by herself! I always let her do everything she can by herself, but step in if the frustration level is too high. Some things will just take time.

good luck,
claudia

Lefty/Righty is baby talk but I don't think it's important. I like that much better than bad/good arm or boo boo arm.

I have three children,my oldest was so tired in the morning I dressed her until second grade. It was the only way I could get her up and out to school on time. Her sister a year younger dressed herself at 2 and would not let me help. We fought every morning over what she would wear.

I think it depends on the child. I would not make a child helpless but if they are the type of kid who wakes us slowly I see no harm in helping them.

Kath adult/obpi

We always called Maia's arms leftie and rightie in a very endearing way - we needed a way to refer to the affected arm....

I also used the naming concept to motivate her to use leftie more... rightie would talk to leftie - leftie would talk to rightie - stuffed animals would talk to either rightie or leftie...it all became part of the lightness of it all. When Leftie would accomplish something new, rightie would get all excited.... when leftie stopped doing stuff I would look at rightie and ask - are you taking all the turns?? Leftie's getting sad - leftie wants a turn, too! and rightie would then say OK..leftie can have a turn.... (ventrioloquist stuff ya know?)

I guess it's all perspective.

About dressing... we taught maia strategies to getting dressed and she didn't want to get dressed at all at first. Then one day I got myself into the bathtub and filled the tub with toys and bubbles and I was splashing, singing and having a great 'ole time and she wanted "in" and I told her that I couldn't help her get undressed because I was all wet. And for the first time ever she got undressed (forgot how old she was though). But it was fantastic motivation. From that day on she's undressed herself.

Getting dressed was harder but her OT came up with strategy.... leftie was a snake and he had to find his way into the tunnel (sleeve).....(it worked!) and then she would sit on the floor for panties and underwear and just put one leg at a time into each hole/pantleg.

Socks were harder but we taught her how to put socks on one-handed - it's easy as pie actually. And she still does it this way. You put the sock on your hand - just above your thumb and then you cup your hand so the bottom is open and you sneak your foot in.

The hardest part was tying shoes but I wanted her to be independent so she wore velcro strap shoes up until this year! (age 9) and now she is finally able to tie shoes as long as the shoe strings are really long and she doesn't have to pull the strings too much...

To this day - she needs help with tighter shirts and all I do is hold rightie's sleeve cuff so she can pull her arm out. Lou is going to make a device that gets bolted into the wall (or grip cupped onto the wall) - kind of like a clip - that will hold the sleeve (instead of me)

And she cannot zipper dresses up the back and I don't know yet a way around this.

-francine