At five-months-old, Ethan was diagnosed with infantile spasms syndrome, once known as West syndrome. It’s considered an epileptic encephalopathy, which means it is a condition where children have both seizures and cognitive and developmental impairments.
For the first few years of his life, Ethan had seizures that were quick jerks of the body, but indicative of chaotic brainwave patterns that interfere with the development of the brain. He went through 16 different medication options, genetic testing, and imaging.
The last time he had a seizure was in 2017. Ethan, now 13, takes 14 pills a day to keep his seizures at bay. And while the seizures may no longer be present, the ramifications of them stay with Ethan even today.
His mom, Karen, describes Ethan as a ‘toddler in a 13-year-old body.’ It can be difficult for him to learn new skills, and impulse control can be a challenge.
That’s why Ethan and Karen work with Colleen Quinn, a behavior analyst in the Intensive Behavioral Health Services department at the Achievement Center of LECOM Health.
Working With Ethan
Colleen describes some of the most recent victories for Ethan, and for many, they may sound ordinary – he made his own egg recently and he ate a bunch of blueberries on a Friday – but for Ethan, they are major milestones as he tackles feeding, independence, food aversions, social boundaries, and more.
“We’re working on independence and working on being in the community,” Colleen said. “We want him to be more independent and then mom doesn’t always have to be as on top of him and is able to give him his space.”
Some days, that involves making eggs and eating blueberries. Other days, like when Karen and Ethan go shopping together, it’s about managing how many people Ethan talks to and the types of questions he asks.
“Ethan is the sweetest. He’s really social and he wants to talk to everyone. He’s really empathetic.” Colleen said.
Added Karen: “He can be super fun and can make people’s day. He wants to ask for help from every worker in the store.”
Tools in the Toolbelt
Whether it comes to trips to the grocery store, making and eating food at home, or simply being at school and within the community, Karen highlights how much Colleen has helped with strategies and techniques to work with Ethan.
“I’m a teacher by training. Most of the time, when a new behavior comes up, I’ll start to describe it and Colleen gives me an idea,” she said. “And it’s ‘Of course, that’s so logical,’ but when you’re in the midst of challenges and the emotions of life, it’s hard to stop to think about what makes the most sense. Colleen is amazing. She’s very good about gently making smart, logical suggestions.”
For communicating, it’s helping Ethan to stay on a topic and focus on it, rather than saying whatever is on his mind. There’s more work with schedules, visuals, and reward systems. When new foods are being introduced, there’s a routine of exploring them together with different senses through a game. The family is great at participating and following through in what Colleen works with them on.
“They are a model family and I love working with them. Ethan has been so successful because he’s had a great team along the way,” Colleen said. “They’re constantly working on things. When I meet with the family, they might say ‘This happened at the store. What do I do?’ and I tell them once and they do it.”
Karen is also especially thankful for Colleen and the services the Achievement Center of LECOM Health provides in empowering her and reassuring her.
“I always say one of the best things about any of the therapists we work with, but especially Colleen, is Ethan’s progress is slow and cyclical. There is some regression because of developmental delays, but Colleen gives new ideas and provides reassurance,” Karen said. “And when he’s having a bad day or I can’t understand why he’s having a negative behavior, instead of feeling overwhelmed and upset, I have the tools to manage that behavior to move past it so we can do fun things and enjoy each other’s company.”