"There are people at CSH that want to help you. When we answer that phone and open that door, we want to help make your child’s life a little bit better. We want to take some of that strain and pressure off you and make your life a little bit easier."
Barry Federovitch, a dedicated father and Ambulatory Care Registered Nurse at Children's Specialized Hospital, recalls December 2nd, 2003, "like it was yesterday." On this incredibly emotional day, his family received the diagnosis that his two-year-old son, Alex, had autism. Despite the diagnosis, Alex was an affectionate child who spoke at nine months old, with his first word being "love." At eighteen months, they noticed some concerning behavior in their child, including verbal aggressiveness and a short attention span. They had previously taken early intervention measures and had some professionals tell them their child may be diagnosed with autism.
Alex quickly started losing weight and became increasingly selective about his food as time passed. By the time Alex turned three years old, his weight had dropped to the lowest one percentile, which was a significant concern for their family as he was a classic failure-to-thrive toddler. Alex was referred to CSH for early intervention services by Robert Wood Johnson University Hospital in New Brunswick because of his verbal, dietary, tactile, and motor issues. He then began receiving outpatient services at CSH Hamilton Outpatient Center. Barry's goal for Alex was to progress mentally, physically, and in his diet during his time at CSH.
Beginning Outpatient Therapy at Children's Specialized Hospital
Alex began attending therapy sessions multiple times a week for several years. His occupational, physical, and feeding therapists worked to create a customized plan to meet his needs, allowing him to perform various functions. He engaged in several play activities, such as playing with balls and standing on balance beams which he enjoyed; however, the most challenging aspect was feeding therapy. His feeding therapists proved to be consistent and patient with Alex, which eventually paid off. Senior Occupational Therapist, Meredith Kilduff, gave insight as to what occupational feeding therapy sessions consist of, "Occupational therapy uses a play-based approach with feeding which encourages the child to interact with foods through play to become comfortable with them and learn how the foods look, feel, smell, and eventually taste. We use a very gradual approach to ensure the child feels safe and comfortable with the food. We find the more positive interactions and experiences the child has with foods help them begin to accept novel and non-preferred foods. Additionally, occupational therapy works on self-feeding skills for a child to be able to feed themselves with their fingers and utensils and also drink from a straw or open cup. To progress in independence in self-feeding, we also focus on building a child's strength, coordination, and fine motor skills."
Initially, Alex could only eat vegetable baby food mixed with powder due to his tactile sensory issues, but his palate expanded with his CSH therapy sessions. Barry shared, "He will eat most foods now. Alex has a great sense of fun and loves getting praised whenever he is making progress. He is looking for approval, and he is a very hard worker. Seeing him working hard through his physical therapy doing exercises and advancing to doing food exercises at tables, sitting, using utensils, and eating regular meals was exciting."
Now at 21 years old, Alex is 5'5 and weighs 120 pounds. Not too long ago, he wasn't even willing to try these foods. Nutritionally, he was getting a little portion of his needs as he was just limited to carbohydrates. However, his menu is now a more balanced diet where he is eating fruits and vegetables and a greater amount of protein which is important for brain activity. Barry described the CSH team members as a "godsend" for all that they have done for his son. Barry shared that Alex remains affectionate and lovable, and CSH has taken measures to ensure he maintains his health. With the help of CSH team members, Alex is still facing struggles but he has significantly improved.
Discovering New Hobbies
As Alex transitioned to adulthood and left the care of CSH, his family has seen significant progress in his health and eating habits. He has shown some behavioral issues that challenged the family over the past four years, but despite Alex's struggles, Barry is proud of him and recognizes his strong work ethic. He said, "He assists us in household chores like taking out the garbage, the recyclables, dog walking, and food shopping." Alex's family supports him as he works through his behavioral issues in different programs while discovering new hobbies involving family time and eating. Barry shared that Alex has become quite the pizza connoisseur. Their family started taking pizza trips all over New Jersey in search of the best slice, "it became a fun challenge to find different pizza places Alex could appreciate. We have been traveling and have tried over 100 pizza places over the last 2.5 years. You can tell by his reaction and enthusiasm whether he will dive into a slice or not. When he wolfs it down, it becomes evident," joked Barry. Their family recommends the Drunken Grandma Pie from "Prima Pizza Kitchen" in Somerville, less than a mile from CSH in Somerset. "Most of the time, he is a pleasure to dine with. He loves to share his food and loves you to share your food with him," Barry said. He also loves going to the beach and swimming, taking walks, being tickled, and classic rock and roll music. Barry says Alex is a wonderful young man with a beautiful laugh and smile.
When asked what his advice was for other families going through similar situations, Barry said, "It is very difficult to go through these situations. It calls for an incredible amount of creativity and patience, more than you've ever had in your life, and more than anything, it calls for a lot of love. You have to be willing to think outside of the box. This is about conveying your love for your child and helping them thrive in this world. The ways in which you do it may seem unusual to other people but none of that matters. You do what you have to do to help your child, even if that means being a little extra silly. To connect with that child is a magical thing. Celebrate any victory that you can." Barry's greatest hope for his son is a continuation of growth and that he can transcend his behavioral issues with physical violence so he can pursue a full-time job and use his wide variety of skills to work hard.
Barry's Next Chapter
Barry's unconditional love for Alex and the exceptional care he received at CSH inspired him to change his profession from a newspaper sports editor and writer to nursing in order to help children like Alex with special needs. After four years of hard work, he successfully completed the nursing program. Barry said becoming a nurse felt like a dream. Additionally, Barry was influenced by the September 11th terrorist attack, as Alex was born the day before the attack, and he knew he could make a difference. Barry said, "I recognized what things would be like if there was an even greater national disaster and more people were injured or died in that circumstance – I wanted to participate in helping. Later on, when Alex got his diagnosis and he needed help, I was drawn to participate immediately – so it was let's learn more, let's get more education, and let's help more people that are in this circumstance."
A few months ago, Barry began his nursing career at CSH and plans to work here until his retirement. CSH fills Barry with positive memories; he shared, "For me, there are a lot of fond memories, I see some of the patients as I am coming in, and it brings me back to different periods of us waiting for different appointments and the anticipation and eventually the help we were able to receive. It is very exciting for me, just the idea that I can then pay it forward by helping as many people as possible who have similar or more difficult needs.”
Barry's colleagues acknowledge his dedication and the valuable role he plays on the CSH team. Vice President of Patient Care Services and Chief Nursing Officer, Dr. Kelly Keefe Marcoux, shared, "Barry is a wonderful addition to the CSH team. He has an empathetic nature when interacting with staff, patients, and families alike, which is fostered by his personal experiences with his son. He is a steadfast patient advocate and approaches his work from a true family-centered care perspective. He is an excellent nurse, and we are so lucky to have him at CSH!" Outpatient Nurse Manager, Katelyn Johnson, added, "Barry has been a great addition to our team, he is eager to learn his role and brings such a positive light with him wherever he goes." Barry shared that Alex inspired the care he provides here and that his goal is to help as many people as possible. He said, "There are people at CSH that want to help you. When we answer that phone and open that door, we want to help make your child’s life a little bit better. We want to take some of that strain and pressure off you and make your life a little bit easier."