By Christian Leonard
Tellis King, 5, wanted Julie Miller to sing.
She’d already crooned the familiar tune a few minutes earlier, but Miller didn’t protest. Tellis watched as Miller swirled her plastic spoon in the concoction they’d prepared together — pureed strawberries and blueberries with applesauce — and whispered the simple melody:
“Stirring, stirring, stirring the applesauce. Round and round and round and round, now it’s time to eat.”
Miller, of Professional Child Development Associates, lifted her spoon to her mouth, watching Tellis to see if he would emulate her movements. After sticking out his tongue and stirring the mixture some more, he did. Applesauce is a favorite food of his — he asked about it while he and Miller were pureeing the fruits.
And finding the right consistency of such nourishment is a matter of no small impact for a child like Tellis. The little boy, who has Down syndrome, has trouble swallowing liquids, especially thin liquids. They can get into his lungs rather than his stomach. Besides potentially robbing him of vital nutrition, this condition, called dysphagia, has caused him to have frightening bouts of pneumonia multiple times, said his mother, Alexine King, with the first instance occurring when he was only about 6 months old. The experience, King remembered recently, terrified her.
“Initially, I was very scared because I didn’t know why he was getting those pneumonias,” she said in a phone interview, explaining that Tellis had to have a tube inserted into his stomach because he couldn’t eat by mouth. “[I was] unsure how that would change the course of his life [if he] was no longer able to eat and drink like a normal person.”
After the jarring experience of Tellis’ first case of pneumonia, King found hope. She turned to PCDA, a nonprofit organization that provides services to children and teenagers with developmental disabilities. Though Tellis has been in several of PCDA’s variety of programs, including a dance class and a Special Olympics program, it is the organization’s feeding program that has been the primary service for him.
“I just want him to believe in himself enough to know that ‘I can thicken my liquids or I cannot, and that’s OK.’ … Whatever [Tellis] has to do for Tellis to be OK, that he can do that and do it well,” King said, explaining that thicker liquids are easier for her son to swallow.
It is very common for those with developmental disabilities to have feeding challenges, according to Miller, who besides working as Tellis’ occupational therapist is also the clinical director for PCDA. The organization has approximately 50 to 70 patients in feeding therapy at any one time, Miller said, most of them from Pasadena.
While many children are picky about food, Miller said the organization works with those whose difficulty eating presents a health barrier, possibly causing them to be underweight or overweight. Some may even feel anxious about going to certain places, such as school, if they have challenges eating the food served there — a reluctance that can damage their efforts to find their place in the world.
It was to find help overcoming such a barrier that Susan Kang took her daughter Emma, who had a heart condition and a reflux disease, to PCDA about four years ago. Emma, now 5, had been vomiting two to four times a day since she was about 6 months old, something that doctors told her mother shouldn’t have been possible since Emma had received a procedure to address the reflux. The overall experience made the child reluctant to eat anything, meaning she had to be fed through a stomach tube. Doctors’ advice didn’t seem to help.
Susan Kang said she was “bordering on desperation,” not only alarmed over Emma’s mysterious situation, but also worried that she would be blamed — or even that the child would be placed in another home — if she went against the doctors’ advice and Emma’s health worsened. She browsed internet forums, but they often suggested dangerous-sounding solutions.
“Having a kid, the kind of kid that I do, I won’t take that chance. I can’t take that chance, to put her in a position worse than she was already in. I was like, ‘I refuse to do that, but I have to do something,’” Kang said in a phone interview.
After calling a few locations, she approached PCDA with her concerns. Miller worked directly with Emma, who was about a year old at the time, to encourage her to try foods. Kang said that because an experience at the hospital had caused her daughter severe pain in her throat, Emma was very distrustful of having anything put in her mouth. Gradually, however, she came to trust Miller, who celebrated with Kang after the girl ate a grain of rice.
“We did a lot of things on our own, feeling like we had nowhere to turn, and then we found PCDA was like this breath of fresh air,” Kang said in a phone interview.
Much of that relief came from meeting with PCDA’s team of doctors and specialists, according to Kang. While she said her experience at hospitals often left her confused and with conflicting information, she believes having several experts in one room helped her feel more at ease.
“I just remember the whole team sat around the table and they each had their field of expertise and they each had their set of questions. … I just kind of got this overwhelming sense of ‘We’d really like to help you,’” she said.
Having a team of consultants is very important to PCDA’s treatment of feeding challenges, according to Miller. The feeding program began in 2001 with PCDA’s executive director, Dr. Diane Cullinane, and a few specialists. The group expanded over the years to include more consultants, with the current team consisting of approximately 20 members. The team addresses just one of the many issues PCDA helps treat, including emotional and psychological concerns, sensory disorders and motor challenges.
The differing specialties of members, Miller said, allow each of them to avoid making judgments outside their field. While Miller works as Tellis King’s therapist, for example, a dietitian also meets with the family to discuss what types of food are served at home.
Miller worked with the Kangs for about a year and a half. Though Susan Kang noted that the choices were ultimately left to her, she accepted Miller’s advice to slowly wean her daughter off her feeding tube. Emma had stopped vomiting when she was almost 2, and as the discomfort left, she became more confident about eating orally, according to her mother. Though at first Emma lost some weight while taking food in the typical way, Kang was able to use the information she gained from PCDA to explain to doctors that the change was normal.
Now, at 5, Emma has gained her weight back and is at a healthy weight. Her feeding tube is completely removed and Susan Kang recently said she now “loves to eat.”
“I would hate to think that there are families out there who don’t have this kind of support when it’s out there,” Kang said. “It was something that we could never repay.”
Though the Kangs were able to achieve their goals, Miller noted that families have different ideas of success, which can take varying amounts of time to achieve. One of the families Miller worked with set the goal of getting their child to eat a meal available almost anywhere — a McDonald’s hamburger.
“Our goal is always to work ourselves out of this,” Miller said. “My best work is when the families don’t need to come back. And so I want them to feel success and that they can do these things on their own.”
Alexine King’s goal for her son, to be able to ingest liquids whether he can drink them thin or has to thicken them, remains the focus. For young Tellis, mixing applesauce with his liquids to thicken the mixture has proved helpful. Now that he is getting enough nutrition, his mother and Miller are focusing on increasing his food variety and having him eat efficiently but safely.
King credits her experience with PCDA for the confidence she and her son have. She says she has a better understanding of what Tellis can eat and that he has become more comfortable leaving food that he doesn’t like on the plate, rather than throwing it.
“We’re really grateful for PCDA. They’ve been so helpful. … I don’t think there’s a better feeding program,” King said.
To learn more about PCDA, visit pcdateam.org.