Children and Adolescent Hand and Arm (CHArm) Center

Parent Forum

My daughter was born with cerebral palsy, right hemiparesis. She is now twelve years old. She walks with a slight limp but otherwise has a normal appearance. However, this was not always the case.

Prior to upper extremity surgery, I tried many interventions to help decrease spasticity and increase function in her right arm and hand. Despite years of different therapies, she still had an obvious nonfunctioning deformity.

My daughter changed after she entered the school system. Gone was the bright happy smiling face. Coming home from school she would run into the house and throw herself on the floor in a fit of tears. She was being ridiculed. Some classmates made a parody of her, some avoided her, some were fearful, and all but one very kind little girl refused to hold her hand during games. School personnel minimized my concerns and characterized me as "overprotective". One even asked me: "Why don't you do something about that hand? It's atrophying." How I wished I could do something.

My daughter had occupational therapy services at school. The therapist was not allowed to help my daughter learn to zip up her jacket or learn any ADLs (activities of daily living) because these are not "educationally based goals". Instead, she was fitted with a fingerless rubber glove and told to draw circles. There was no improvement in her hand or her drawing.

At first I was afraid to have surgery performed on my child. Surgery was irreversible, and there would be scars. What if it did not work, or what if she was worse afterward? I was assured that if my daughter was not a good candidate for this type of surgery, the surgeon would not operate. The scars would fade to thin white lines. As it turned out, my daughter has a guinea pig bite scar that is more noticeable than the doctor's fine stitchery.

Did it work? It is now one year post surgery and my daughter says that, "It changed my life. I am like all the other kids now." From my perspective, she walks better because she can swing both arms. She looks good in all her pictures; no more concern about hiding that hand. Her gross motor arm and hand movements are very much improved and although fine motor movement in her fingers will never be perfect, she can zip up her jacket by herself!

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