Real Life

Our autistic daughter’s new life

Ex-Amici Forever star Geoff Sewell was devastated by his daughter’s diagnosis of autism. But less than a year on, Sienna’s making amazing progress – thanks to a new treatment programme.

Little Sienna Sewell wraps her arms around her father Geoff each morning and says, “Bye-bye, Daddy. I love you – see you soon.” This little ritual, performed before Kiwi singer Geoff Sewell leaves for work – managing and performing with the London-based opera group Tenors Incognito – makes her dad’s heart melt.

Five months ago three-year-old Sienna, who is autistic, could barely speak, let alone tell her father she loves him. Now she can convey to her parents what she wants and how she’s feeling, thanks to a combination of changing her diet, taking supplements and undergoing special therapy.

“Sienna has come such a long way in a short time,” says her mum, Simone Lanham. “She can use words appropriately, not just repeat them. It’s like we have a different child.”

It was Sienna’s lack of language that prompted Geoff and Simone to take their then two-year-old to specialists at a London clinic late last year. They were also concerned she had gone from being a settled baby who achieved all the normal milestones to a toddler who would throw terrible tantrums and could barely sit still.

When a panel of child experts told them Sienna was autistic, the couple were “utterly gobsmacked”. Geoff (34) says, “We knew something was wrong, but we didn’t think it could be that because she made eye contact with us and was quite affectionate. It was a huge shock.”

“When we asked what we could do to help her, we were told there was nothing really,” adds full-time mum Simone (34). “They said they wouldn’t really know what she was likely to be like until she was about five. It was all doom and gloom.”

But the couple, who also have a nine-month-old daughter, olivia, wasn’t prepared to sit back and do nothing. Simone spent hours on the internet, reading everything she could find about autism.

Geoff, meanwhile, decided it was time to re-evaluate his career. A co-founder and singer with the “popera” classical band Amici Forever, he spent a lot of time away touring, which he knew would not help Sienna’s need for routine and stability. When he announced earlier this year during a trip to New Zealand that he would be quitting the band to devote more time to his daughter, the story made headlines.

Geoff was happy to talk about his family’s situation in a bid to raise awareness about autism. But what he and Simone didn’t expect was the response they got from the people of New Zealand. “It was awesome,” says Geoff. “We had so many people approach us, suggesting different courses of action and offering support.”

one of the approaches came from an Auckland health researcher, John Appleton, who suggested they contact Northland doctor, Debbie Fewtrell. She has carried out extensive research into how diet and biomedical therapies may help the symptoms of autism and has helped to treat many autistic children.

Debbie carried out tests on Sienna and advised Geoff and Simone to move to a strict gluten-free and casein-free diet, which meant not eating anything containing wheat, barley, oats and rye, or dairy products. She also recommended giving Sienna supplements of vital nutrients her body was lacking, such as zinc, magnesium, omega 3 essential fatty acids, iron and a special multi-vitamin, plus probiotics to help gut function.

Simone had already started removing wheat and dairy products from Sienna’s diet as a result of all the reading she had done. “I was desperate to do something,” she admits.

She began to notice changes in her daughter almost straight away. “The first thing was when she said the word `water’, meaning she wanted a drink of water. Before, she would only repeat words or names – she could name everyone in Abba – but that was an example of her using language appropriately.

“Another time she said, `oummy’ when she wanted my attention. It was a huge breakthrough – she had never used my name before. It was so incredible.”

Sienna’s ability to communicate got even better after her parents began following Debbie’s advice. There have been other improvements – instead of throwing 30- minute screaming tantrums at least daily, she has one or two short outbursts a week, at most. Sienna used to frequently squeal, flap her hands and resort to head banging because she was so frustrated; now that’s happening less and less.

A month ago, she wouldn’t play properly with her toys – she would just line them up according to colour. Now she builds towers with her blocks and has imaginary tea parties with her teddies.

After two months of biomedical intervention, Sienna started another crucial part of her treatment, Applied Behavioural Analysis, or ABA. Her progress was helped enormously by her newfound ability to sit still and concentrate on tasks.

ABA therapy involves intensive, repetitive one-on-one teaching intended to help autistic children learn a variety of appropriate behaviours and skills, such as interacting with other people.

“Autistic children need to learn to do things and to behave in certain ways that the rest of us take for granted,” says Simone. “It’s like she’s learning a foreign language. It’s not second nature to Sienna, but she can be taught to do it.”

When the family returned to England after their two-month stay in New Zealand, Simone went to tell the doctors who had diagnosed Sienna about her daughter’s remarkable turnaround. She was stunned by their response.

“They rubbished everything. They said there was no scientific evidence that diets and supplements work. I said, `I don’t care what you think, I know how different Sienna is.'”

It’s thrilling for Geoff and Simone to see the lovely little person emerging from under the cloak of autism. “Sienna’s a little daredevil with a great sense of humour,” says Simone proudly. “She’s intelligent – we can see that now.”

Geoff adds, “She has a very good singing voice. Maybe one day she could be a singer or have any other kind of job – that’s some-thing we could only have dreamed of before.”

Sienna still has a long way to go, but now at least the future is not all “doom and gloom”.

“The trip home was the best thing we could have done,” says Simone. “Now we want to tell our story because we’d love to help other people like we were helped. We want other parents to know there is hope.” Story: Donna Fleming Picture: Charlie Holding

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