Meet AJ, who learned to love food
When AJ was younger, his feeding disorder made it difficult for him to eat almost anything, which impacted his growth and nutrition. After attending the feeding therapy program at Children’s Health℠, he’s developed a better relationship with food.
When AJ was 3 years old, he was diagnosed with autism. Throughout his early childhood, he didn’t speak and struggled to eat .
With the help of protein-packed shakes for kids, and under his mom and pediatrician’s careful watch, AJ held his weight. But as he grew up, his mom, Leslie, noticed his sunken eyes and how he’d constantly get sick.
“His immune system was very poor, and we knew protein shakes wouldn’t be enough for him as he got older,” Leslie said.
For the next couple of years, AJ went to a nearby feeding therapy program, but Leslie didn’t notice much improvement.
One day, a therapist suggested Leslie should check out a program at Children’s Health, five hours away from their home in West Texas.
The hospital was far, but it’d be worth a shot, she thought.
A month away from home
Leslie didn’t wait to make an appointment for AJ at what is now known as the Integrated Therapy Feeding Program at Children's Health, one of the largest inpatient programs in the country and the only multidisciplinary program in Texas that helps children of all ages who struggle to eat.
For more than two decades, the unique feeding program has helped improve kids’ ability to eat by providing personalized treatment to those who have low muscle tone in their jaw and tongue, sensory challenges or behavioral issues.
After an evaluation, a therapist told Leslie that AJ’s feeding disorder was severe and that he qualified for the month-long program.
Dozens of questions rushed Leslie’s mind.
“A month? A month away from my home? Away from my other kids? Can we do this during a better time?” she thought.
Leslie spoke with AJ’s dad, Alex, and grandmother, who offered to help care for his siblings back home.
They all agreed the program would help AJ tremendously.
Developing healthy eating habits
The 30-day, intensive program was hard at first, but Leslie noticed AJ’s willingness to try, and she and his care team were determined to help him succeed.
At Children’s Health, the program includes every type of feeding therapy, from speech therapy for swallowing to counseling for anxiety about food. Some children may need to try new textures of food to expand their palate. Others may need exercise to improve the strength of their tongue or jaw.
AJ’s care team helped him develop healthy eating habits and taught him how to tolerate different environments. His therapists, for example, would sometimes take him down to one of the hospital’s cafeterias to practice eating around other people and different noises.
They also introduced him to different food textures, smells and combinations, such as peanut butter spread on a waffle, which allowed him to build up a tolerance for what he previously could not even be around.
His care team met AJ where he was. They worked with it and then we took those tools home to continue applying them.
— Leslie, AJ's mom
Therapists were also available for Leslie if she encountered hurdles at home, where she was able to create structure for AJ with the techniques she learned from them.
A support system that went beyond AJ’s care
Leslie and AJ struggled being away from their family, but their care team and the Children’s Health child life specialists helped them through the toughest days.
“The way it’s set up, from the therapists to the counselors to Child Life, it’s beautiful — it’s how every pediatric hospital should be set up,” Leslie said.
On top of helping AJ overcome his feeding disorder, his team became the support system his mom needed.
Although their family, who lived five hours away, or friends would sometimes visit, Leslie found the strength she needed to get through each day from the team members she met at the hospital.
“There were times when I was completely drained,” she said. “I was missing my other children, my husband. It became hard, but the counselors would check in and talk with me, and the child life specialists would entertain AJ for a little bit to give me a breather. That was great.”
The Child Life Department at Children’s Health, which helps provide a positive experience for patients and their loved ones at the hospital, is part of the many incredible services available to families that are fueled by philanthropic funds, working hard behind the scenes.
After a child life specialist learned about AJ’s love of Nintendo, they bonded over the Super Mario and Donkey Kong video game characters. AJ soon looked forward to hanging out with child life specialists after his feeding therapy sessions.
Throughout those 30 days in the feeding program, Leslie saw how everyone cared for her son — and her — with patience and love.
“If we hadn't had all of them, we wouldn’t have been so successful,” she said. “Everyone made AJ feel comfortable.”
‘It changed how we live today’
AJ, now 8 years old, is back at home spending time with his three siblings, drawing, playing video games — and enjoying food.
When AJ first started the program, he only ate food from three brands. If his family wanted to go to a restaurant, they’d have to stop and pick up AJ’s favorite fast food to bring along with them.
Today, his preferences have expanded to include 24 brands — and he’ll eat chicken from just about anywhere.
That was a big load off of our family, because it was stressful to manage what he was particular for and work around him. What we did in 30 days changed our lives. It changed how we live today.
— Leslie, AJ's mom
Although he’s considering becoming a doctor or a zookeeper when he grows up, he’s also toying with the idea of working at Raising Cane’s.
“That’s just an example of how he’s grown,” Leslie said. “He would have never even thought about working at a restaurant before.”
AJ no longer relies on protein shakes. Instead, he is nourished by the food he eats across five meals each day. He also eats at school, something he refused to do before.
“I believe that Children’s Health had a huge impact on his growth and where he is now. It's still a work in progress, it's not perfect, but thanks to Children’s Health, we have tools and AJ is thriving thanks to them,” Leslie said. “There are truly no words to describe what this means to us.”
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