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URMC / Golisano Children's Hospital / Ways to Give / Strong Kids News / March 2017 / Someone who knows what we’re feeling

Someone who knows what we’re feeling

Family Navigator program supports families with guidance and empathy

Lisa Latten will never forget the woman’s face.

Lisa LatternShe’d just spent about two hours in the office of Susan Hyman, M.D., with her 3-year-old son, Ian. Hyman had watched as Ian played, communicated, and responded to various questions and commands. Then, Hyman made her diagnosis:
Autism Spectrum Disorder.
Latten left the office in a haze as the news sank in. As she walked back into the waiting room, her gaze fell upon a woman across from her, holding a boy the same age as her own and quietly sobbing. Their eyes met, and a feeling of mutual desperation passed between them.
“I wish I could go back to that moment,” said Latten. “You hear ‘autism’ and that’s all you can think about. But I want to go back and tell her that it’s not terrible. It’s not awful. It doesn’t mean your child won’t be happy or won’t have a place in the world. That feeling that you’re all by yourself — it’s not true. It’s just that your reality will be a little bit different now.”

Today, that’s exactly what Latten tells people. She still sees that look on parents’ faces when they walk out of the doctor’s office after getting the diagnosis for the first time. But now, she’s there, ready to offer her guidance and empathy. And most importantly, to show people they’re not alone.

Of the 13 different sites in the Autism Treatment Network — a network of hospitals throughout the country aimed at improving the treatment of individuals with autism — Golisano Children’s Hospital is the only one with a full-time Family Navigator devoted exclusively to working with families of children with autism and other developmental disabilities. Latten, who is on hand at the Developmental and Behavioral Pediatrics clinics to consult with parents and caretakers following an autism diagnosis, has served in the role since 2015.
“It was such a relief to see someone who had been in our shoes and knows what we’re feeling,” said Caitlin Legros, of Rochester, whose son was recently diagnosed with Autism Spectrum Disorder. “The physicians are wonderful, but there’s a part that they can’t necessarily speak to in terms of the day-to-day activities.”

“Once Lisa came in and started working with the kids, it was just a whole different experience,” said Carol Marcellette, of Rochester, who has a grandson with Autism Spectrum Disorder. “She calmed the kids right down — she was like a child whisperer. She definitely knows what you’re going through and has been through the same thing that you have.”

Latten’s work at Golisano Children’s Hospital is supported by AutismUp, a Rochester organization that supports individuals with Autism Spectrum Disorder. Now with over 2,000 members, AutismUp provides support and education to individuals, families, and professional service providers. An additional gift from Jean Warren will soon allow the Family Navigator team to expand.


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