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A Child’s Struggle; a Mother’s Fight: How Jen Burgstone Found Answers for Autism at Marianjoy for Her Daughter, Emily

Emily Burgstone is a bright nine-year-old girl, full of energy and ambition. In addition to having an active social life, she’s an excellent student, having earned honor roll status every year in school. She’s involved in several extracurricular activities, swimming and piano lessons being two of her favorite. Also, this fall, she was in a play. With all her achievements, you might never guess that Emily has a challenge many students do not: she has autism.

According to the National Institute of Health, “autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.”

Autism presented itself at a very young age for Emily—just nine months old. Jen Burgstone, at twenty-two years old, was a first-time mother, and wasn’t exactly sure what to expect as normal behavior for a baby. However, she knew something was wrong when Emily started intentionally hurting herself. “We couldn’t seem to get her out of this blank, foggy, staring-into-space state,” Jen recalls, sadly. “If we tried to touch her—to hug her or to comfort her—she would physically lash out against us.” The behavior continued into the night, too: “She had night terrors, so she was up all night screaming,” Jen says. No one in the family was getting any sleep, listening and worrying instead.

Jen tried taking Emily to various doctors, desperately searching for an answer. The doctors of six different medical groups all laughed her off, dismissing her concerns as a young mother not knowing typical baby behavior. They insisted it was a stage. “They actually said that she was too cute to have anything wrong with her,” Jen recalls. “They said just relax, she’ll grow out of it.” One medical group even required Jen to go to parenting classes—“They thought I was crazy,” she says. Despite the opposition, Jen was determined to find the answer for her daughter.

When the family moved to Aurora, they asked for a referral to a pediatric neurologist. He said Emily wasn’t sleeping through the night likely due to a lack of melatonin, which he prescribed. Jen says this was a wonderful discovery for the family—as a naturally occurring hormone, they felt comfortable with the addition. Thankfully, it ended Emily’s night terrors and enabled them all to get a full night’s sleep, for the first time in four years.

Also, within ten minutes of meeting Emily, the neurologist said that she very obviously displayed signs of Sensory Processing Disorder and likely ADHD, too. In a way, this was the answer to Jen’s prayers—finally, an answer for Emily. Nonetheless, Jen knew the journey wouldn’t be easy.

Emily started preschool the year they moved to Aurora—“which was a nightmare,” Jen recalls. Emily cried almost the whole time at school and hid under the reading pillows, screaming that the lights were too bright and the noise was hurting her ears—over-stimulation in general. Jen had to go to preschool every day to lure Emily out from her hiding spots. “People looked at us like we were nuts,” she says. Despite people’s reactions, Jen didn’t even consider pulling her out of school; she wanted to give Emily as normal a childhood as possible. Still, Jen knew she had to find a way to make things easier for her daughter.

The pediatric neurologist recommended occupational therapy for Emily, and that’s when Marianjoy came into the picture. She quickly formed a connection with other parents whose children were in therapy at Marianjoy, and they became a network of information and support for each other. “It was amazing, because no one else could understand what we were going through,” she recalls. For the first time, Jen was able to recognize the depth of Emily’s condition. Doctors at Marianjoy informed Jen that Emily’s condition was actually on the same spectrum as autism, which was difficult for Jen to accept. “I didn’t want to put the word ‘autism’ with my child, because it’s a scary word,” she says. “You just get these preconceived notions of what autism is, with all the cultural stereotypes. It’s hard for parents to understand that a child can look perfectly typical and beautiful, yet still have neurological issues that might not otherwise be recognized.”

Struggling with this new information, Jen wasn’t sure what to do next. Dr. Mary Keen, Medical Director of Pediatric Rehabilitation at Marianjoy, became particularly helpful to Emily. After talking with Dr. Keen, Jen discarded the books about Emily’s former diagnosis and began reading about autism. That’s when she read about the gluten-free, casein-free diet that benefits many people with autism. “It’s not an easy diet—people wouldn’t choose it if they didn’t have to,” Jen says. However, Jen thought that if there was even a chance the diet would help, they should try it—and luckily, it did. “That marked another huge change in behavior,” Jen recalls. The first week of detox was hard, but after that, Emily calmed down a lot and stopped hurting herself. Even though they’d had Emily tested at a younger age for allergies, she hadn’t tested positive for a gluten allergy; it turns out she was, however, “intolerant” to it, which they only discovered after Jen read about it. Because the diet has made such a difference for Emily, she does not require medication; Jen says that they are very strict with it and bring their own food everywhere. Emily made huge progress with these changes, because, as her mom says, “What do you need more than sleep and food that won’t poison your body?”

Another element that helped Emily flourish was Marianjoy’s guidance with socialization. While it is already party of speech therapy, there is also a class that teaches children how to be social and empathize with people, both of which were a huge help to Emily, says Jen. The Burgstones also utilized Marianjoy’s website and all the informational resources it offered. “I’ve been very pleased with Marianjoy,” says Jen. “We could have changed, years ago, to somewhere closer, but we thought no way—we don’t want to give them up.” Jen says that they love the people who work at Marianjoy, especially Emily’s occupational therapist: “The therapists there are so supportive and caring, always willing to help out with information you might need.” She says she also appreciates how their social worker from Marianjoy calls to check on how Emily is doing in the program.

In fact, Marianjoy has had such a positive impact on the whole family that Jen ultimately plans to go back to school and get another degree in occupational therapy. “I feel that it is so important to be able to work on gross and fine motor skills, which affect all aspects of living,” she says. “Not being able to communicate orally is, of course, difficult; however, without the fine motor skills required to use a pen or pencil, or the gross motor skills to participate actively, I think communication is even harder.”

Jen and Emily experienced that problem first-hand when Emily started school. When Emily began first grade, Jen went into the school with all the information they’d need to create an effective IEP for her. An Individualized Education Program is a set of accommodations designed to help students with disabilities reach their greatest academic potential. “Emily excelled in reading and some other academics, so they were more than happy to do everything I asked,” Jen says. With these accommodations, Emily has indeed proven to be an excellent student, achieving honor roll status every year. “I am very proud of her; she’s an awesome kid. She’s doing tremendously well,” Jen says, beaming. “I never would have expected this in the throes of exhaustion and desperation five years ago. She’s surrounded by a lot of people who love her very much, and I think that helps a lot.” Emily has a great support system at home as well as school, which helps her to develop important skills all day long. Jen says that her husband has been very hands-on with Emily and that both sets of Emily’s grandparents have been extremely supportive.

Jen advises other parents to be proactive with their children, too. “You know your child better than anyone else,” she says. “If your pediatrician is ignoring the information you’re giving them, you need to do the research on your own.” She says that there are many support groups and websites full of resources for that purpose. “It’s just a matter of swallowing back the tears and getting the help that you need to help your kid,” she says. “It was a long, lonely road for a while there, and I was so grateful for Marianjoy to find the people who could relate to what we were going through, and that’s what made the difference for me.” She says that a lot of people might mistake painful, debilitating obstacles for kids as minor annoyances, and that more education in schools and everywhere would help everyone to understand better and succeed.

ASD is estimated to affect 1 out of every 88 children. For more information on autism and other conditions, please visit http://www.informationconnections.org/, a Marianjoy website designed for parents of children with developmental disabilities and other chronic diseases.