Making food fun: Jacob’s journey with feeding difficulties

Most parents might discourage their child from playing with their food. But for Lorraine Scanlon, getting her son Jacob to have fun at the table is all part of taking the pressure out of eating. In fact, it’s an approach recommended by his health care team.

Jacob, now 8, has had feeding challenges since he was a baby. “He wouldn’t even eat baby food when I tried to transition him from formula. He wanted nothing to do with it,” says Lorraine. “He was on a bottle until he was 2 years old.” Around the same time, Jacob was diagnosed with autism spectrum disorder, which seemed to compound his feeding difficulties.

It was a trying time for his family: “We had to change pediatricians just to get someone to listen.” That was when Jacob was referred to the Growth and Nutrition Program at Boston Children’s Hospital.

A team approach

There, Lorraine learned that while some kids view food as fun — simply fuel — it was a source of extreme stress for Jacob. At mealtime, he would throw a tantrum, cry, flail, and try to flip his highchair. And Lorraine was feeling the stress, too. “Feeding your child should be easy, but this was hard and frustrating,” she admits.

At the GNP, a team of experts — including psychologists Ryan Davidson and Nancy Sullivan and clinical nutritionist Wendy Elverson — supported Lorraine as she tried to work through that frustration and help Jacob feel more comfortable around food. It’s been a long road, but the team’s suggestions have helped. They include:

• Manage constipation. By learning to recognize and treat signs of constipation, Lorraine can help ensure that it isn’t a reason why he doesn’t eat.
• Learn the steps of eating. For Jacob, these include touching, smelling, and licking a piece of food to familiarize himself with it — without the pressure of actually eating it. They also help desensitize him to the smell of certain foods that bother him.
• Put the fun in food. Being around food shouldn’t have to be traumatic. “I encourage him to get messy and play,” says Lorraine. One example: pouring chocolate sauce onto a plate and letting Jacob “paint” in it with his hands.

‘Now I can finally breathe’

It hasn’t always been easy. Lorraine now homeschools Jacob because his school wasn’t supportive of his needs. He’s had trouble keeping weight on — although he recently gained 10 pounds. Through it all, the GNP team has been by her side, even during the pandemic, when she and Jacob have had virtual visits. “When I need a break, the team tells me that it’s okay as long as I don’t give up,” she says. “It feels like I’ve been holding my breath for a long time and now I can finally breathe.”

And she knows the challenges are worth it. A “chronically happy” kid with a big heart, Jacob is doing so well that he’s now eating chicken nuggets and fries — a huge change for him. Later this year, he’ll transition from the GNP to a similar program for older kids at nearby Spaulding Rehabilitation Hospital. In the meantime, he’s busy playing Minecraft and building with LEGOs.

“Jacob struggles, but he takes life in stride and tries his best at everything,” says Lorraine. “I’m so honored to have him as my little boy.”

Learn more about the Growth and Nutrition Program.