Stories about: Family Advisory Council

Chronic and complex: A family embraces their messy, beautiful life

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Lisa Burgess with (clockwise from the top) her husband Mark and sons Ben, Jamie and Dakota. “We always do selfies,” Lisa says. “I make them.”

Dakota Burgess readies to take his place on stage at Ryles Jazz Club alongside his band mates. He paces, grips his saxophone, flips his shaggy blonde hair and paces some more. Twenty-year old Dakota is autistic, as are the other members of the band from Boston Higashi School, a day and residential program for children with Autism Spectrum Disorder where Dakota has been a student for 15 years.

Dakota’s parents, his brother Jamie and a handful of friends are all in the audience, cameras and smiles ready. The show is almost starting. His mom, Lisa Burgess, leans over to a friend. “Just wait, they’re really quite good.”

The music starts. The band is good. Great, even. Dakota is nervous but focused and happy. He stays in tune and handles the spotlight like a pro during solos. At the end of the set, he bows and heads off stage.

Watching him high-five with friends, you’d never guess that Dakota was a defiant toddler. Or that he was a fearful 5-year-old. Or that his parents felt they were losing him to frustration and rage before finding Higashi. Or that he has received care at Boston Children’s Hospital for most of his life.

Dakota still struggles with anxiety but has thrived both academically and socially at Higashi and is learning life skills that will help him become more independent. The school’s jazz program and collaboration with Milton Academy has been a huge bonus.

“He keyed into music very early on,” Lisa says. “It’s really what saved him.”

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Dakota playing saxophone with the Boston Higashi School jazz band on April 30, 2015.

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