George Maben-Mead

Lynda Cobley went to meet the Maben-Mead family. The family consists of Rob who looks after the house, Jill who is a nurse and is just finishing her nursing PhD. Their children are Lola, who is two and a half and very much into Winnie-the-Pooh and her fun-loving nine year old brother George, who just over a year ago, underwent a pioneering operation in Australia to remove a rare brain lesion, called a hypothalamic hamartoma, which causes autism and epilepsy.

Rob says George is on the ‘autistic spectrum', "He finds it difficult to communicate with people in a socially appropriate way. He becomes very fixed and obsessed about certain things. At the moment it is around language, and dialogue from books and videos and he repeats certain catch-phrases over and over."

George prefers an ordered world. He can be quite obsessive about his food. His favourite dish is pasta with pesto sauce and parmesan cheese. "I think he finds our world a bit terrifying and this way everything is more controllable."

Rob and Jill’s lives were very different before George. The couple went travelling between 1988-90. They explored America, Mexico, Australia and Asia, ‘taking life as it came.’ "It was very carefree," recalls Jill. "I look back and wonder what I did with all my time." However they think it prepared them well for life with George.

As first time parents Rob and Jill didn’t think anything was wrong. "George was a bit slow to feed and crawl and walk but everyone was desperate to reassure us. People kept telling me Einstein didn’t talk until he was five!" remembers Jill. By 16 months George was referred to speech therapy and he was diagnosed with gross developmental delay. They both resented the professional involvement at first, "We were probably in denial."

They found support in the Son-rise programme in the Unites States which believes in a home-based/child-centred approach. It was one of the biggest turning points in their lives, Jill believes, "It doesn’t judge the child’s behaviour but works with it."

Life at the Maben-Meads has its challenges. Lola, like most two-and-a-half years olds, frequently puts George’s behaviour to the test. "She might come up and wallop him and George reacts with, 'Please don’t do that Lola, Lola can you please stop that.' George is in fact a great role model for Lola."

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