Bringing Up Bruno

How a boy with severe disabilities beat the odds.


Filed Under: ADHD Accommodations, 504s, IEPs,
Bruno Taylor ADDitude Magazine
   
 

How the Taylors Did It

When you ask Larry Taylor how they did it and what other parents should do in situations like theirs, he's too modest. "I don't know that it's anything we did. We had a child who is gorgeous and happy. It's easy to be a good parent with a kid like that." Clearly, he underestimates his and Ann's Herculean contribution to Bruno's success.

Normalize Life as Much as Possible

"I suppose one thing we did is to normalize our lives; not by pretending that Bruno didn't have problems, profound problems—but normalize, in the sense that we would live our lives close to what we had planned." That's why the family got up and moved to France twice, when both parents had fellowships. It wasn't easy, with all the gear and care that Bruno required. Still, he would have needed the same gear and care at home... and he would not have learned to understand or speak French!

Insist on Getting What You Need and What You Are Legally Entitled To

"The other thing is less a plan of action than a personality distortion. I think that insisting on the level of care and attention that we have is key: get the support, health care, and attention you feel your kid needs and to which you are legally entitled. The system is set up to make you feel small and inconsequential. The health care system isn't designed for chronically ill patients, so it makes you suffer quietly. We refused to take no for an answer and insisted Bruno get the care he needed. We made them listen to us as 'experts' on Bruno.

I suppose that's the most important thing for parents to keep in mind. They have the right to expect an environment of support for disabled kids and this support isn't a favor—it's a law under the Americans with Disabilities Act."

 
   

Hardly anything bothers 17-year-old Bruno Taylor these days, except for the fact that he's 4'11." But he is so perfectly proportioned that, standing in the distance, dipping his toe into Lake Michigan, he looks like a tanned, blond Adonis. Everyone seems to adore him, and he loves the world back. For a child who was not expected to live past infancy, he is a miracle. "Most kids born like this end up in institutions," Bruno's physician warned the Taylors. Not our child, they vowed.

It was a tough challenge. Bruno couldn't swallow. When his parents tried to feed him anything, he spit it up immediately. After a few days he became listless — clearly not thriving. His parents, Larry and Ann Taylor, both professors at the University of Wisconsin, brought him back to the university's prestigious medical center. It was there that a CAT scan revealed the news that Bruno had been born with only part of his cerebellum, the central processing unit of the brain.

Bruno's condition is so complex that there is no one name for what he has. The cerebellum is a cauliflower-shaped section of the brain located in the hindbrain, at the lower rear of the head. It is a computer, mostly dedicated to the intricacies of voluntary movement, managing walking, balance, and swallowing. Damage to the cerebellum leaves the sufferer with a drunkard's gait (if he or she walks at all).

More bad news

Two days after his birth, Bruno's doctors also found a seriously deformed heart valve and a hole between the chambers of his heart, which would take two surgeries to fix. And he would have to learn eventually how to eat on his own in order to gain strength and grow. For the time being, doctors inserted a nasal gastric tube to provide the nourishment he couldn't take by mouth.

His parents struggled for months to get Bruno to eat. The only nourishment that sustained him was the liquid delivered to his stomach by a tube, and that would not be enough to help him grow normally. The Taylors persisted and fed Bruno every day by mouth. And every day he threw up. Clearly, their plan wasn't working.

They reluctantly took him to a Wisconsin center for children with eating problem. Bruno stayed there, without his parents, for six weeks, as specialists helped him learn to eat. Their efforts were only partly successful; four months later, Bruno had surgery to place a larger feeding tube into his stomach. He required 24-hour-a-day nursing care.

Wonderful surprise

At age two, something unexpected happened: Bruno, who could not speak or eat on his own, began to walk. That year, the family had moved to Ann Arbor, Michigan, where both parents would be professors at the University of Michigan, and Bruno started preschool. An aide came to the school every day to feed him lunch, but he continued receiving nourishment through the tube for breakfast and dinner. About this time Bruno required surgery and his feeding tube was removed. Though he could not feed himself, others could feed him. He became more adept at language.

The big breakthrough came while the family lived in Palo Alto, California. Larry sensed that Bruno was more capable than his low reading scores indicated. Specialists assured the family that them that Bruno would just start reading one day. But Larry had the idea of teaching Bruno as if he were blind. Bruno's world changed with persistent and patient help at his school's learning room for kids with both physical and learning disabilities. His participation in school grew by leaps and bounds. In this nurturing environment, Bruno spent two years in Palo Alto on the honor roll.


This article appears in the Winter issue of ADDitude.
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