By Jack Firneno
The Midweek Wire first spoke with the Tolis family in July. Read the article here.
George and Elizabeth Tolis count in meals. It’s almost a game: feeding sessions that take anywhere up to 45 minutes on a Wednesday and are down to maybe 18 minutes by Tuesday. Then the next day it starts all over again.
Things aren’t perfect yet. But there’s plenty of time.
Since September, the Tolis family has been working at home with their 5-year-old Emmett on the new feeding procedures they learned at a food intervention at Children’s Hospital of Philadelphia this summer and early fall.
Emmett is on the autism spectrum, as are his twin brothers Zach and Damian. But while the older boys can attend regular elementary schools with individualized education programs, Emmett is largely nonverbal and still wears a diaper.
And, until a few months ago, he was facing severe health complications from anemia and gastrointestinal problems. They stemmed from his refusal to use utensils or eat anything that wasn’t bite-sized, pale and of a specific texture and temperature.
The Midweek Wire first spoke with the Tolis family in July, after George and Elizabeth had enrolled Emmett in the intervention. It promised to be difficult — and expensive.
The program would mean six weeks of lost wages for Elizabeth, who owns and operates Center Stage Dance Academy in Hatboro. Plus, travel expenses from Jamison to Philadelphia five days a week and specialized babysitters for the twins. So the Tolis family turned to Support Local Stuff, a crowdfunding website, to raise the needed funds.
The response was overwhelming. Elizabeth remembers the moment she realized the fundraising effort would reach — and then exceed — the family’s goal.
“I was amazed at the outpouring of support. So much stress came off just from that,” said Elizabeth.
Originally, they set out to raise $6,000 over a month. By the time the drive ended, they’d received more than $10,000 in donations. But the people who contributed gave more than money. They gave the Tolis family time.
Time to try to new methods of assisting Emmett developmentally. Time to bond with their children, individually and as a family. And, time to make their marriage stronger.
Ironically, one of the things they don’t have much time for is to express their gratitude to everyone who’s helped them, and tell each of them how Emmett is doing. Fortunately, there’s social media for that.
Elizabeth posted regularly about her son’s progress on the Facebook page Emmett’s Journey. It was partly a way to say “thank you” to those who donated, which includes people from literally around the world that the family has never met.
But, it also became a way to keep the family focused and in a positive mindset. As Elizabeth documented Emmett’s progress at CHOP, she felt accountable to the online audience.
“There were times I wanted to walk out and not come back. It was very stressful for him,” said Elizabeth. “But if I didn’t update, people would ask what was going on. Everyone was so interested, and in such an isolated structure, every little bit of encouragement was great.”
And, that structure could be grueling. Elizabeth compared the experience to boot camp, where they “broke him down” before they could teach him new eating habits. The process was fully scripted; Elizabeth and George would have to do and say everything exactly the same at home.
When it was time to eat, Emmett would be physically restrained. The staff would explain to him that he had to eat, and showed him how they would physically hold his mouth open to force feed him if he didn’t eat. Then they’d present five overturned cups each with a different food hidden underneath, and introduce them one at a time.
Of course, there was verbal praise, high fives and rewards for Emmett when he complied. But, said Elizabeth, “It was shocking.”
And, she had to teach it all to her husband once the intervention was over, and they needed to continue the same pace for it to take hold.
But it did — surprisingly. The success rate for intervention is actually much lower than what the doctors told Elizabeth when she was at CHOP, but Emmett has kept up his new habits at home. And, while it takes longer to feed Emmett the new foods he’s introduced to every Wednesday, he is ultimately receptive to them. It turns out he likes hot dogs and, surprisingly, broccoli.
“Broccoli!” said George. “You couldn’t put a fork within five feet of him a few months ago, now he’s eating broccoli.”
Emmett has gained weight, his anemia is less severe and gastrointestinal problems are steadily receding. And, with the extra funds they can afford to put Emmett on a gluten- and dairy-free diet, a move that can have positive effects on children with developmental problems.
Since Emmett wasn’t used to many foods anyway, it wasn’t much more of a challenge to introduce them. But the foods are more expensive and harder to find. Due to their sons’ picky diets, George noted, “We started going down aisles in the supermarket we’d never been down before.”
But it’s been worth it. George said his son’s response time has at least doubled, and he’s talking now, using around 50 or 60 words. Before CHOP, they couldn’t get him to speak at all.
“It literally just came out of nowhere, and I don’t think it’s a coincidence,” said George.
And, Elizabeth points out, when Emmett walks into the room and begins coloring, that he’s using paper and not everything around him.
“You say that now — I’ll be washing crayon off the floor later,” joked George.
They joke a lot. Not that they didn’t before, but the stress of raising a child on the autism spectrum — let alone three — leads to high divorce rates.
But the fundraising also generated awareness of the family in their community. “I’ve even been stopped in the supermarket,” said Elizabeth.
Their church in particular came up with some big ideas to give her and George opportunities to spend time alone together. But the couple opted for something simpler than what they were offered, asking instead just for babysitters so they could attend a wedding together.
There are still plenty of challenges. Emmett is still well behind his age group developmentally, and requires specialized schooling and individual care. And, since his eating habits are still a laborious, structured process, a family outing to a restaurant is off the table for the foreseeable future. This year, the Tolis family didn’t visit anyone for Thanksgiving because it was so soon after the intervention.
But they got to spend that time together, and they can do that more now. There are
fewer trips to the emergency room for Emmett, and less stress in general and more time for the family as a whole.
George and Elizabeth have been able to spend more quality time with each of their children, whether it’s one-on-one or on outings with their new family membership to the Philadelphia Zoo.
The changes in the Tolis household, like the changes in Emmett’s diet, are incremental and often subtle. But, they come from opportunities that weren’t there before. Now the family, as George said, “takes things one meal at a time.”
For information, visit www.facebook.com/MySweetBoyEmmett.