MAP Ping out progress

For more than three years, Luke Fontenot, 17, and his brother, Alex, 16, have been traveling to McNeese State University up to four times a week to visit the school’s Autism Program. There they practice language and speech training and social skills, as well as other everyday activities like food preparation.

At MAP, Luke and Alex work with board certified behavioral analysts and their graduate student technicians who are pursuing a master’s in psychology.

Taylor Dewoody, Alex’s ABA, and Amberlee, Luke’s ABA, are part of an eightmember team who staff the clinic, and have been working as the brothers’ case directors for a few years.

At the start of their time at MAP, Luke and Alex’s parents, Chris and Denise, would get them up in the morning and bring them to McNeese for the day, until a little over a year ago when the homecare program was started, which brought the clinic to the Fontenot’s home.

“When they started at the clinic they had a variety of needs, but then one thing that we wanted to center on because of their ages was independent living skills, because that’s where they’re at,” Denise said. “We were a little apprehensive to see how the boys would react to everyone coming into the house, but from the first day they just took so well to it and they have different clinicians come in everyday and they have their routine.”

The homecare program is designed to assist participants in developing independent living skills such as cooking, cleaning and personal hygiene, as well as other practical skills that might assist them in getting and holding a job or increasing their overall quality of life.

“When we initially started homecare, (Chris and Denise) did everything for them, down to waking them up in the morning, putting every stitch of clothing on their body, their deodorant, brushing their teeth,” Dewoody said. “The first day we observed, we took notes about what mom and dad still did for them. It was superhuman, as Chris put it, the level of dedication put forth to get the boys from the home to the clinic in the morning, and Denise was doing it all by herself. The independent skills are so critical.”

Shortly after starting the homecare program, Denise went to take off Luke’s shoes one morning when Dewoody stopped her and told her Luke knew how to do that.

“I was like what?,” she said. “Then Taylor said, ‘Alex, do this and that’ and he gave me a look like ‘Oh no! Momma’s gonna know, don’t make me.’ ”

“That’s the thing about them ... they’ll sandbag on you, they will not reveal all that they can do, just like any kid,” Chris added with a laugh. “The same thing with the microwave. He was using the microwave at McNeese, and I was like, ‘Oh, OK. So now they’re just doing all kinds of things.’ We’re about to let them mow the grass.”

When I visited their home on a sunny Wednesday morning, Alex and McNeese graduate student Jordan Fuselier were in the kitchen making breakfast, while Luke worked with graduate student Tori Yanator to get dressed and ready for the day.

Alex was doing the cooking and Jordan stood nearby with her checklist, at times giving verbal and non-verbal prompts when Alex would get sidetracked. Alex grabbed a plate, and then the pancakes out of the freezer, taking three out and putting them in the microwave. He started to press in the numbers, a 1 then a 0 before pausing to look at Jordan, who gave him a slight nod, before he pressed the last 0.

“Just then, he knew to press the last 0, his finger was right above it, he just needed some confirmation. We’re working on increasing their independence in these skills, so we can go, ‘Hey do you want to make your breakfast’ and they can come and do the majority of the steps pretty independently. There might be a couple of instances where I do have to prompt,”

For Alex, not only is fixing his own meal a big deal, but the act of eating, too.

Denise said before the boys started going to MAP, the physicians they saw couldn’t recognize the behavioral aspect of Alex’s case, only his lack of weight gain, and recommended appetite stimulants for him.

“I just knew, that’s not the answer. I never believed that he wasn’t hungry. Something would prevent him from eating,” Denise said. “And if we’d give him an appetite stimulant, he’d just go and eat more cookies and chicken strips. I didn’t know what the missing component was and how to fix it, but I knew it wasn’t in a pill.”

Oftentimes, those on the Autism Spectrum have difficulty varying their diet due to extreme food preference or aversion to taste, bite size, texture and color. Treatments such as MAP’s feeding problem interventions work to mediate these difficulties and expand not only the child’s food variety, but their overall quality of caloric intake.

As it turns out, Alex was also suffering from a hiatal hernia, where one’s stomach will bulge through their diaphragm, and “so he would have acid reflux, and he associated eating with pain,” Chris said.

Eventually his dietary restrictions and hernia led to a case of anemia, and a severe aversion to food and eating, which was expressed behaviorally, in the form of self-injury.

“That’s always a challenge with nonvocal children and adolescents, is trying to address the underlying issue, because if it was pain related they can’t tell you that,” Dewoody said. “It’s a lot of trial and error. So we started additional training to better help him, and essentially introduce things to him across food groups to better balance his nutrition in the best way possible, not only by the number of calories, but also valuable calories. I can’t say that it’s causal, that feeding solved this, but we’ve seen a drastic difference in his tendency to engage in self-injury once his feeding increased.”

Physicians helped to diagnose and treat the gastrointestinal problems with medicine such as iron supplements for the anemia, and Taylor and her team worked on the behavioral tendencies through the feeding intervention and communication skills.

“Alex doubled in size in two years. He went From 45 to 90 pounds. For at least five years, he wouldn’t eat anything but chicken strips, three meals a day,” Chris said. “So he was not getting enough nutrients, by looking at him you could tell he was very sick. And he wouldn’t eat anywhere but home. One time we went out of town for three days, and he didn’t eat the whole time, that’s how severe it was. But they have got him eating everything now. Bananas, pancakes, spinach out of a can.”

In the three years of feeding intervention, Alex has mastered almost 30 new foods introduced to him by Dewoody and her clinic technicians, from peanut butter and pancakes, even as far as broccoli.

“With Alex, we kind of jokingly refer to it as novel food day. Were like OK, were presenting a novel food today, lets see,” Dewoody said. “I’d say that even within the week we are seeing almost 100 percent acceptance within 5 seconds, maybe at the smaller bite size, but within the week were seeing acceptance with three out of the four foods, and maybe we’re so challenged with that fourth one, but within weeks we do see a pretty quick turnaround for most of those issues. We try to keep things really systematic so the trainings really high, the integrity of the intervention is really high, which is something of importance as a training facility in general for MAP, but especially for feeding.”

The training that Alex has in his feeding intervention doesn’t stop at the door, though, and the effectiveness of Dewoody’s team shows up wherever he goes, transferring to the non-clinical setting.

“Over the holidays we had bacon and I was like let’s see what he does. And he took a bite ... welcome to the life,” Denise said, chuckling. “At my mom’s house, she had roast, and even though he didn’t really prefer it, he ate it. And that’s what we are seeing now, if he is asked to do it, he’s willing to try. And that’s huge.

“It’s just been wonderful,” she said. “He’s growing, catching up with his brother. Still to this day when I see him clean a plate at a restaurant, a big portion size, it’s like whoa. It’s just wonderful. And when he comes out with stains all over his shirt, and the staff is all ‘Oh we’re so sorry he has blueberry stains all over shirt’, I’m like it’s the best thing ever. Stains are wonderful.”

Typically, the feeding intervention takes place at McNeese, in the MAP office in Farrar Hall. Here the Fontenots, as well as many other children and adolescents, work with the team to increase their quality of life and independence.

On the day that I visited, Alex and Luke were working in the same room, with a window facing the parking lot on Sale Road. Typically the two work in their own space, with their own technicians, but for the sake of observation they worked together.

Luke sat at a round table with technician Linda Hurtado, who asked him his address, who his parents are, and other things that would be helpful in case there were ever an emergency. Intermixed with those are instructions to point to different objects or body parts, or to mimic her movements.

“Some of the things she’s working on right now are things that he’s technically already mastered, and he’s trying to be able to do them, but we run them again in the mornings just to make sure he’s maintaining. Stuff like his safety information,” Amberlee said. “He’s pretty good at answering that. Left and right was one of the things it took him awhile to catch up to. He’s just now getting to where he’s pretty good at that. A lot of the different programs that we run are things to do with his communication. He knows lots of words, but some of them aren’t contextually relevant and we’re working on getting him the skills to make them more relevant. He does say things and tries to get your attention, so we hope to improve his ability to be understood.”

One goal of Luke’s work is to allow for him to act more independently in public, and so they work on image recognition of things like restroom signs, hazard warnings and street signs.

“It’s a challenge, but we want our kids to have a quality of life just like everybody else wants for their kids,” Chris said.

Alex comes back from the bathroom and sits in a desk with his back to the wall, next to a window, facing his technician, Jake Crifasi. Alex occasionally leans down and looks out the window at the sunny day and the students and faculty walking about campus.

Alex is nonverbal, so he uses an iPad app that has images of objects or actions that he can press to let Crifasi know when he wants a break, which toy he would like, or if he’s hungry or thirsty or needs to use the restroom. Alex and Crifasi work on his communication and recognition skills with flashcards, calling out words and cues before identifying the appropriate card, before they move on to physical skills, where Alex practices using a knife.

“This is an exercise we do where he practices cutting playdoh, so we can practice his fine motor skills,” Crifasi said. “He eats pancakes often, which are softer, so it helps him to cut those, but he doesn’t cut stuff much harder than that yet.”

Crifasi helps Alex to cut them, gradually using less and less pressure to guide Alex’s hands so that he can do it more independently, and about an hour later, it’s lunch time and the pair move to another room lined with eight cubiclestyle eating stations. Alex immediately grabs the bread while Crifasi follows along with a checklist, before Alex takes a long pause.

“We have it broken down into a task analysis. Each step of making the sandwich is broken down. Like ‘grab peanut butter from fridge, grab bread, paper towel.’ Right now he’s just waiting for a prompt,” Crifasi said, while Alex looks back and forth between him and the pantry before Crifasi reminds him to grab the peanut butter. “So, we did a full verbal there. Sometimes you just have to wait. Sometimes they get dependent on prompts and they’ll wait for you to prompt them. I think he knew what to do there, he was just waiting for me.”

For the Fontenot family, it’s been a long road full of challenges and victories, but the progress in undeniable.

“There’s no better feeling than turning your child over to someone that you not only trust, but that you have seen will not stop until they get the best for your child, and then seeing your child respond to that dedication,” Denise said. “When I pull up to the therapy center, Alex will jump so hard in his seat that it will rattle my heart because he is so excited to go. To know that there is a team of professionals that not only care for your children but are giving them the very best on a professional level, I don’t know how to thank them. They’re a part of our family.”