If you go online to read one of Alex Jenkins’ reviews of Charlotte restaurants, you might notice a few things.
There’s the type of restaurants he likes – small, local places with mid-range prices. There’s the kind of food he prefers – heavy on ribs, stuffed potatoes, cheese-steak sandwiches and cream-topped desserts. There’s the writing – less precious gushing about trendy ingredients and curated cocktails, more detail on handicapped accessibility and how a waiter acted when Alex asked for his food to be cut up.
Jenkins is the same as a lot of aspiring young writers. His blog, Food With the Dude, is his attempt to find a career, to turn something he loves into a life for himself.
There’s one big difference: Alex, 25, is doing it with cerebral palsy. He’s doing it with limited use of his hands and one of his legs, with food allergies that limit what he can eat, with an inability to drive that means someone has to take him everywhere.
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Problems with his facial muscles make it hard to tell whether he’s smiling or glowering. Problems with his diaphragm mean he talks softly, often running out of air before he reaches the end of a sentence.
Alex has something big going for him, though: He’s got a team in his corner. Spencer Moore, his therapist and daily caregiver, is happy to go anywhere Alex wants to go and is with him usually at least 8 hours a day. His stepfather, Paul Heenan, didn’t come on the scene until Alex was 21 but he’s fallen right in as a cheerleader.
And then he’s got the lion, his mother, Lisa Heenan, who has spent every day of the last 25 years helping Alex be everything Alex can be.
“We take his lead, all of us,” she says. “Spencer, myself, my husband.
“He’s definitely got a village.”
Raising a dude
Lisa hardly ever calls Alex “Alex.” She calls him the dude, little d. When he was younger, she had a pet name for him, “my little monkey man.” One day, he declared, “I’m not a monkey.” So she asked him, OK, what are you? He said: I’m a dude. After that, that’s what he became for Lisa: Always and forever, the dude.
Heenan picks her way carefully through Alex’s adult life, trying to find the line between doing what he needs without doing too much. Many parents of grown children can relate to her struggle.
When Alex meets with a reporter, Lisa drops by, unannounced, to translate and make sure it’s going OK. But she does it carefully, always asking his permission: “Can I tell her this, dude? Is it OK to tell her that?”
As a single mother for most of Alex’s life, it was always the two of them. Born four months’ prematurely, Alex weighed less than 2 pounds. Cerebral palsy is caused by damage to the brain either before or during birth. It can create a wide range of issues, from muscle spasms and limb control to speech and vision impairment. Intellectual development can range just as widely, from severe learning disabilities to simpler speech difficulties.
As a child, Alex had so many surgeries to correct so many problems, his picture was on the cover of a catalog for Carolinas Medical Center. One, a selective dorsal rhizotomy, involved cutting nerves along his spine to relieve rigidity that’s common with cerebral palsy. It allowed him to finally sit up on his own when he was 3.
He could only eat baby food until he was 5. At different times, he briefly used a wheelchair, along with a walker, a leg brace and arm crutches. His cognitive skills, says Lisa, are “a mixed bag”: He can read well, and speak some of several languages. But he struggles with math and processing information. He graduated from high school, but has had trouble finding a college program that fits him.
Through all of it, Lisa focused on letting Alex try anything he wanted to try. The only thing she said no to was skydiving.
Can’t cook, loves to eat
Alex always had an interest in food, but not always successfully. When he was 4 or 5, he had a toy Playskool kitchen he played with constantly, always making Lisa “food.” One day, she was getting ready for work when she smelled something burning. Alex was on the floor in the kitchen, stuffing paper towels into the electric baseboard heater: “I’m making toast, Mom.”
Alex has since banned himself from the kitchen, except for the microwave. His right hand is twitchy, making a knife dangerous, and he’s easily distracted. He’s afraid he’d forget the stove is on and set a fire.
He never lost his interest in food, though. Always, when they were out, he would spot little restaurants near their home in northwest Charlotte.
“He’s got this innate knack for knowing what’s good,” she says: He’ll taste something and know immediately how it was made or what’s in it.
Two years ago, he spotted a small cafe called CC’s Sweet Potato Pies & Cafe, on Couloak Drive. They thought it was just a bakery, then discovered that owner Cora Copeland also made cheese steak sandwiches, a family obsession.
They loved it so much, they became regulars. Copeland, it turned out, was a former special-needs teacher. When she heard Alex talking about wanting a job, she offered him one. He started at an hour a week, stocking the drinks cooler. Today, he and Spencer are there six hours a week, greeting customers and helping put Copeland’s pies into containers.
With Alex’s constant interest in restaurants and food, another idea started to dawn on Lisa. On his daily excursions with Spencer – to Freedom Park to run dashes, to the gym for the treadmill and stationary bike, to Abari to play video games – lunch is always a big deal. They like places like the Chicken Box, or small Asian restaurants. His favorite is anything Greek, Turkish or Lebanese, especially the Kabob Grill on East Boulevard.
“We don’t agree on everything,” Spencer says. “We’re human. But I wouldn’t know half these restaurants if it weren’t for him.”
Listening to Alex talk about restaurants, that’s when it hit Lisa: “You ought to start a food blog” had become a running joke, but maybe it wasn’t.
“Wait,” she thought. “He’s got a knack for this. Let’s follow his lead.”
The right to write
Lisa works at home, doing technical development for a financial institution. So she used her computer skills to set up a simple Word Press blog for Alex. At first, she hoped he’d be able to do the writing himself, so they got a laptop with voice recognition. But with his speech difficulties it didn’t work.
“It doesn’t speak ‘dude,’ ” she says. “It brought him more frustration.”
Instead, she works with him, doing the typing while he tells her what to write. She pushes sometimes, pulling out details, but she focuses on capturing Alex’s writing voice and making the blog his.
Since he’s often out on his own with Spencer but can’t take notes well, Alex came up with a solution: He had Lisa make him a business card. On the front, there’s a picture of a waiter, his contact information and his slogan: “I eat, I blog about it.”
On the back, there’s a key to his rating system, from 1 (“Don’t go there”) to 5 (“WHY ARE YOU NOT ALREADY THERE?”). Under that, there are his criteria: Service and accessibility, sanitation, friendliness of staff, service time, overall taste and “bang for your buck.” When they’re out, Spencer handles the pen, marking the card and shooting pictures of the food. Then he shoots a picture of the card and emails it all to Lisa.
At home later, she goes through the notes and pictures and helps Alex figure out what he wants to say.
“Was the potato the size of your head? That potato looks huge, dude. What’s on that?”
“Are you serious? Is that why Spencer needed a nap?”
If they debate a point, she says, he always wins. “He’ll say, ‘It’s my blog and I’ll write what I think.’ I’m like, ‘Yes, sir.’”
From the beginning, Alex decided that if he was going to do it, he was going to be professional about it. He joined the Association of Food Journalists and started reading up on the ethics of restaurant reviewing. Sometimes, Lisa hears him upstairs at his own computer, talking to himself. He’s reading other reviewers and arguing out loud.
They wrestle with what to do about negative reviews, trying to be fair “without being rude about it,” she says. “We’ve had to find a balance. Being honest is good and too honest is not.”
All these words. Where has this been? It’s opened a whole other version of Alex.
Lisa Heenan, Alex’s mother
Slowly, he’s building up entries and even gets a few comments from fans. His first entry, on CC’s, was five sentences. His most recent, on J Peter’s Grill & Bar in Mount Holly, went on for 27 paragraphs and six pictures, including a croissant dripping with honey glaze. (“Mom really loves croissants. So do I. One of these days, we might fight over one.”)
As a therapist, Spencer has noticed changes in Alex since the blog started.
“I’ve noticed he’s more confident,” he says. “Even though he’s soft-spoken, he speaks a little louder.” He used to be “king of the one-word answers,” but finding written words is helping him find spoken words, too.
“All these words,” Lisa marvels. “Where has this been? It’s opened a whole other version of Alex.”
If you ask Alex what his goal is for the blog, he struggles a little to express it.
“I want to do the blog as long as I’m able,” he finally says. “My favorite part of writing is the people. I like that people are reading the blog.”
Turning a food blog into a career is a tough challenge, though. While reliable numbers are difficult to come by, one company that used to track blog categories estimated there were 16,588 food blogs in 2012, a number that has certainly climbed. According to lifehacker.com’s survey of 1,000 food bloggers, more than 80 percent said they never make any money from it, and those who do usually have strong skills in marketing and technology, building websites with multiple streams of content and advertising. A single blog rarely leads to economic success.
For Lisa, that’s not really the goal, though. She sees it as a framework, a way to do something that engages his interest and builds his confidence while letting him discover what he can do.
“If you ask Alex, his main goal in life is ‘I want to be independent.’ (The blog) seems to be allowing him a channel of independence he wouldn’t ever be able to have. My goal for him? Enjoy it, and maybe translate it into something that lets him be more independent.”
On Jan. 24, Alex got important news: He’s been accepted into a program at Central Piedmont Community College that helps people with disabilities get ready for college classes. Spencer will be able to go with him, and one of his classes, on health and safety, even includes nutrition.
Alex gives some of the credit to his blog: He thinks building his writing and verbal skills helped him pass the placement test.
For Lisa, it’s a part of doing what she has always done for her son: Let Alex take the lead.
“I hate to say you surprised me, dude,” she says to him. “But you did.”