United Brachial Plexus Network

Hello,
My daughter Ashley is 3 years old, she has a mild injury to her left arm, She was in therapy since she was 1 week old. Her therapist recently stopped therapy for now.

I often hold back my tears, she is unable to put on her jacket or take it off, she gets so frustrated, and my nephew (who did not realize why she could not take it off) started to laugh at her, I get so upset, I want to be strong, but I worry about her. She just turned 3 and I had a b-day party at Chuckie Cheese, she was unable to climb, I always feel so sad when I see other children, doing more than what she is able to. I am so grateful that her injury was only minor, I know it could have been much worse. But it is so hard to be strong.

Ashley:
I know it is hard, as my daughter has a severe injury. However, putting on a coat IS therapy. You can help her learn. If she can get her arm up, she can flip the coat over her head. If not, affected arm goes in first. Try different ways. Let her help you figure it out. As for climbing, I don't know where you live, but playgrounds are a vital therapy tool. From the time Juliana could walk until she was in school for a long day (the 4's around here) she was at a playground 3-4 times per week--more often if the weather was nice. I taught her how to climb up things (her motor planning is the pits) and down. How to use her arm and how to look like she was using her arm. Therapy is not just about what you do in an office. It is swimming, playing ball, raking leaves, folding laundry, putting away toys... all things that can be made "therapeutic". Certainly there is a lot to be gained from formal therapy, but many kids do even better with "life-style" therapy than they do with formal therapy.

Also, try to remember that your child is only 3. Juliana is young for her grade. I remember being in a camp group with kids who were older than she, but in the same grade. They were all around 3 years old. And the older kids could put on their clothes after swim, and Juliana couldn't. One of my friends saw my frustration (not with her, but with the situation) and said "hey, Rachel is almost 7 months older than Juliana. It makes a big difference at this age." She was right....6 months later, Juliana had made huge strides in dressing herself. Sometimes we have to remind ourselves that they are only kids and they have their own time frame.

good luck,
claudia

I don't know if it will help you feel better but I once could not use my arm or hands.
I did not have much control in my hand at 5.
I had some struggles but it made me strong.
I am a wife, mother of 3 and grandmother of 5.
I learned to do everything and more.

Because I was challenged, everything became a challenge.
I never looked at any craft, sport or project without wondering "can I do it?"
As a result of this attitude I attempted everything just to see if I could.
I took on a potter's wheel at 60.
Because I am obpi I experience so many, many things that perhaps I might never have tried.

Keep your chin up she will learn to put her coat on.
I still have to put my robpi arm in first and take it out last.
It's really no big deal.

Kath(robpi/adult)

Hang in there. My daughter had many troubles putting on/taking off her clothing for the longest time. In the past year, she has made tremendous accomplishments in this area. How did she do it...practice, struggles, practice, crying, practice...see a pattern here? It's very difficult for me to not just step in and help her when she is struggling with something, but I have to watch her struggle for her own benefit at times. Learning when to step in is difficult for us as the parents and for the child. Keep at it. Work on the jungle gym. Work on the playground. Play at home. Climb in a pile of leaves. Climb over a pile of clothes. Climb around in the snow. Get a tunnel for Ashley to crawl around in. Make everything playful and she will have no idea that she is doing therapy, even though it is not formal therapy. There are also some great suggestions on this website as well for play therapy ideas, too.

Good luck.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

Thanks for all the replies, it helps to know we are not alone, and in time she will accomplish these tasks, and I will try to make it as fun as possible.

Thanks, Karen

Karen, all is very good advice. I hope things are going well for you. My daghter had a severe injury. she has been through 2 surgries. 1st was at 3mths 2nd at 2yrs and is planning to have her 3rd in Dec. She is now 3. The hardest part for me was the "starting over" she would get the putting on the shirt down & then have to adjust to not only doing it differently because of the surgery, but after. We thank God & the Dr.'s she was able to do more with her arm, but being able to do more means learning another way of doing things. It is also hard with our busy lives these days. I myself find times when I do things for her not even thinking about it to "get out the door on time." But, we have tried to teach her that she can do anything she wants to do (it also helps having a big sister who is 16 mths older) She reminds and amazes me by saying "momma, I'm a big girl and I can do it!" That's when I start to cry. Miah's mom

Lots of great milestones will come your way and they are all the more sweet because of our kids' challenges.

My daughter is eight and had two surgeries. This past summer she learned to ride her two-wheel bicycle (the whole street was cheering for her!), this past weekend she made her first basket on a regulation basketball court, in kindergarten she learned to take her own coat on and off (we're still working on zipping and snapping). Two nights ago our school had a family fun night with those huge blow-up climbing things. One was a huge slide but the only way to get to the slide was to climb a simulated rock wall. I thought, 'she is never going to be able to do that' and I was about in tears. Boy, did she show me! Up she climbed like it was nothing -- over and over again! I couldn't have been more proud!

These are all things we thought would never come but it makes them all the more wonderful when they do!