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Doing what works best: "wheels" give Brian the freedom to move ahead.

When Brian was born on June 16, 1982, with a myelomeningeocele, we didn't realize that spina bifida would be the lesser of his problems. When he was one month old, he began having episodes of apnea--he stopped breathing when he cried. The apnea turned out to be a symptom of Arnold-Chiari syndrome, a malformation of the brainstem. Brian underwent three major brainstem surgeries in his first three years. This caused additional developmental delays, upper-body weakness and range-of-motion loss in his arms.

Unrealistic Expectations

By eighteen months, Brian was standing with support, and we planned to start gait training when he was two years old. My expectations for his progress were based on my knowledge of older children who had waist-level spinal lesions like his. I saw these children getting up and down from the floor and walking. I believed that Brian would follow a similar pattern. Naively, I thought through the timing of having a second child--Brian would get braces at this time; he'll ambulate at some later time; after that, we could have a baby.

Perhaps it was over-eagerness, or hesitation to make predictions. Whatever the cause, professionals never gave us any lower, more realistic expectations to counter our observations of other children with spina bifida. I understand that low expectations may hinder progress, but unrealistically high expectations, as we learned, may lead to burnout and failure.

A torturous year

When Brian started gait training, he was a highly verbal, friendly and cheerful two-year-old. The next year of our lives was torturous. There were no qualified therapists in our area. We began by going to a city two hours away and working with a good pediatric therapist every day for a week; after that, we were on our own. I became Brian's primary therapist.

We worked every day for three months before Brian took an unassisted step. These daily therapy periods included crying, episodes of apnea and my frustration and anger. I thought that his slow progress was my fault. I thought that I had to put Brian through an emotional wringer to help him "work through the fear." I wish I could go back and erase some of those experiences.

Of course, there were happy moments. Every flicker of success brought overreactions of joy and praise. I baked a cake and invited friends over to celebrate those few, hard-won steps.

After six months, Brian could take three unsteady steps. He showed much courage, but his fear and total lack of desire to walk were mountains we had to climb daily. After a year, he walked fifty feet, but it required fifteen minutes and constant coaxing.

Blowing the Whistle

When Brian turned three, the consulting therapist suggested teaching him to get up and down from the floor. Almost every time we went through this exercise, Brian would cry and have apnea. As his "therapist," I felt driven to work through this agony, but my motherly instincts wanted to protect him.

Finally, the truth became obvious. After three years of reading--in Exceptional Parent and elsewhere--that parents need to make the final decisions regarding their child's treatment, I realized that it was time to blow the whistle. It had come down to a choice between being a good therapist or a good mother. I was sure of my decision; I was ready to throw the braces and walker out the window.

The therapist convinced me to compromise. She had seen children change their attitudes and start making rapid progress when they turned six or seven. We agreed to step back to a more comfortable schedule and "hang on." We stopped working on new skills and cut down on Brian's walking time, but kept using the standing table in order to strengthen his bones.

Braces and Burnout

Our experience with burnout taught us some very important lessons:

* Parents decide: With therapy, as with every other aspect of the child's treatment, we are the best judges.

* Therapists advise: Physical therapists--like all professionals--have a responsibility to encourage, to motivate and even to press the parents; but they are limited in their knowledge of the whole child. Consider the therapy schedule as advice, not law.

* Use a therapist, or be prepared: Therapy must be reinforced at home, but try to have a qualified physical therapist do the primary work with the child. If you must be both therapist and parent, plan carefully. Know how you will approach difficult tasks, when you will push and how to make it a positive experience for the child.

* Blow the whistle: When the child is suffering undue stress, take responsibility for stopping or changing the therapy regimen.

* Take one step back: For Brian, stepping back to a less stressful routine boosted his confidence. Continually asking for "just a little bit more" can make a child feel that he is never quite good enough.

* Let the child initiate progress: Our scaled-back therapy regimen gave Brian an opportunity to begin a new challenge when he felt ready, rather than always feeling one step behind.

* Communicate with the therapist: The therapist will never have a complete picture of your child without your feedback. Communicating our stress better and sooner would have saved us some grief.

* Take time to live: With all the medical, dental, optical and therapy appointments Brian faces, it's important for us to emphasize that he should take time to enjoy life, even if that means slowing down the therapy process.

* Affirm, Affirm, Affirm! We continually tell Brian and ourselves that we are doing our very best with a very difficult job.

Moving Forward

For the last five years, Brian has been mainstreamed in a public elementary school. He maintains above-average grades and sings in the annual school talent show. For the first three years, he walked in braces briefly during adaptive physical education classes and stood in a standing table for one hour a day. In third grade, realizing that walking was still too slow and demanding to be practical, we decided to continue having Brian stand for one hour a day at school while using a wheelchair for all mobility. That's the way he likes it, and it has worked very well.

Interestingly, as we were choosing the pictures to accompany this story, Brian eliminated all the pictures that showed him in his braces. He explained that he would be embarrassed for others to see him with braces and a walker. "They would think there was something really wrong with me," he said. So much for projecting our viewpoints onto our children!

The bottom line is that Brian has never had any desire to ambulate with braces, and still doesn't. He seems to know what he can do and is satisfied with that. Because of his daily standing, he maintains the potential to walk if he changes his mind. We endangered that potential, however, by driving ourselves too hard.

Meanwhile, Brian pitches for his class kickball team, collects baseball cards and dreams of becoming a radio sportscaster. For us, taking one step back brought us two steps forward--happier and more ready to face the challenges ahead.

Kathy Olsen is a writer and speaker who lives in Texas with her husband, Lloyd, and two sons, eleven-year-old Brian and nine-year-old Mark. She is the author of Silent Pain: Finding God's Comfort for Your Hidden Heartaches (NavPress, 1992; Call 1-800-366-7788 for ordering information.) and numerous articles. Kathy volunteers in her church and at the private school her sons now attend.
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Title Annotation:5th Annual Mobility Issue; coping with spina bifida
Author:Olsen, Kathy
Publication:The Exceptional Parent
Date:Mar 1, 1994
Previous Article:ALD - balancing hope against reality.
Next Article:Wheeled mobility section: a guide for parents.

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