MEET THE SCOTT FAMILY

BY MARIA SMIETANA

For Fishers residents Taylor and Vince Scott, patience, planning, and flexibility are the keys to managing life with a special-needs child. Both are full-time elementary school teachers, so they’re no strangers to dealing with children. But when their first child, Carter, was born with Angelman syndrome, the Scotts “knew we had to make adjustments to our work-life balance,” Taylor said. “The biggest commitment we make to our family is that we leave work at work and we give our children our full attention while at home.”

First described by British physician Harry Angelman in the 1960s, clinical characteristics of Angelman syndrome include severe speech impairment, movement and balance disorders, sleep disturbance, serious delays in intellectual development, and often, seizures. Interestingly, children with Angelman syndrome (AS) exhibit an unusually happy demeanor, are easily excitable and love to be in or around water.

According to the National Organization for Rare Disorders, AS occurs in about 1 in 15,000 births, but many cases are probably misdiagnosed because of the overlap in characteristics between AS and disorders such as autism, cerebral palsy, Prader-Willi syndrome, and many others. AS is caused by an abnormality in the UBE3A gene found on maternal chromosome 15. Diagnosis usually occurs between ages 1 and 4 since characteristics of AS are not obvious at birth.

Carter, now 6, attends kindergarten and is in the life skills class in Hamilton Southeastern Schools. Before kindergarten, he attended First Steps. “They were a great resource for Carter prior to starting school,” Taylor said. “He LOVED his therapists, and they did so much to help him reach his full potential.”

On his 4th birthday, Carter became the owner of two bunnies, with whom he’s made a deep connection — he even reads to them. He named one

George after his favorite show, Curious George. The other is Snowflake, a nod to Christmas, which is Carter’s favorite holiday. Carter’s little brother, Connor, likes to help him take care of the bunnies, and both boys enjoy playing with them. The family also has Wrigley, a Sheltie who has been with Vince and Taylor since before they were married.

The degree of movement and balance difficulty can vary greatly in children with AS. Carter learned to walk at a normal age, and Taylor is very excited that he has also mastered running, jumping and climbing stairs.

“He has accomplished so many milestones over the years,” she said. “In the past two years, he has gone from being nonverbal to adding five words to his vocabulary. He has worked hard to learn how to use his AAC device to communicate and advocate for himself. He truly shows us day after day how determined and unstoppable he is.”

Living in Fishers, which the Scotts have called home for nine years, has proven to be beneficial in so many ways. “We really appreciate the acceptance that our neighbors have shown Carter. He makes friends everywhere he goes, and we love how excited those in our community are to see him when we are out,” said Vince.

“Our community has allowed us to enjoy many of our favorite leisure activities without much in the way of adaptation. We have been blown away by how accommodating our city is to those with special needs,” Taylor added. “Some of our favorite parks are Richey Woods, Flat Fork Creek, Holland Park, and Conner Prairie. We simply try lots of different parks, and those our children enjoy the most, we tend to visit with more regularity. During the summer, we spend a lot of time at splash pads and playing in the creek at Flowing Well Park in Carmel. Carter is in his element anywhere he can splash in water!”

Carter is very receptive to trying new things. “Our biggest challenge has been recalibrating the way that we approach those everyday things that others take for granted,” Vince said. “Carter likes things scheduled, so we have to make sure that we are always thinking two or three steps ahead. It is important that we walk him through exactly what we are going to do. He needs to know what will happen and what our expectations are when we do something new.”

“We do make more intentional choices [than most families] about where we go to eat or where in Carter’s schedule a certain activity fits,” Taylor added. “When we have playdates with others, we often have to think about what the location will look like. We work to give him as much independence as possible, but we’ll try to meet at a playground that is fenced in. That gives him the opportunity to be able to play freely without the worry of him possibly wandering off.”

Although both Taylor and Vince like to cook at home — it’s both a stress reliever and a form of relaxation — they aren’t hesitant about taking the boys to restaurants. Carter has no dietary restrictions, which simplifies matters. “It is important to us that we teach the boys proper table manners but also how to interact with others in a social setting,” Taylor said. “We like to eat all kinds of foods and try different things. Carter loves chips/salsa and pizza and really enjoys eating fresh seafood when we are at the beach. We try to expose both of our children to new cuisines and experiences as often as possible. We love to visit Riviera Maya, Puccini’s and The Well Coffeehouse.”

A lot of the Scott family traditions revolve around the holidays. They get hot chocolate and drive around looking at Christmas lights and have dinner with their extended family at Capri every Christmas Eve. “Carter has really been the catalyst for bringing a lot of that childlike joy back to our holiday and birthday celebrations, Taylor said. “He LOVES celebrating pretty much anything and is always making sure that everyone is just as excited as he is. He loves Christmas and Santa so much that he will watch Christmas Chronicles all year long. There are very few movies he will sit through, but he’ll watch that one on repeat.”

Traveling with the boys became easier once the Scotts implemented a few stress-reducing practices. “We have learned that it is best for us to vacation with our family and friends,” Vince said. “To make things easier for Carter, we always travel with his safety bed, and we know to make time for him to rest during busy days in a different environment. We also have learned that it is important to stay in a house with lots of extra living space instead of a hotel. Carter wakes up very early, and having our space allows us to keep our morning routine similar to our routine at home.”

“Some of our happiest memories are seeing our son enjoying himself on vacation,” Taylor added. “We traditionally spend a week every June in the Outer Banks of North Carolina with extended family, and we also like St. Joseph, MI. Carter is always so excited to spend time with his relatives, and it has been fun to watch him grow over the years.”

The Scotts encourage other families with special needs kids to stay calm and really try to teach flexibility. “We talk through our plan before leaving the house, but things don’t always go as planned,” said Vince. “It has been so important that we teach Carter strategies to help him pivot and be flexible.”

“Don’t be afraid to ask for what you need from others in the community,” Taylor added. “There are so many people and businesses that have been more than willing to help us with creating unforgettable experiences for Carter. Having a special-needs child changed the way we both looked at our

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~Maria S. (parent) community. A lot of our focus changed from ‘What is there for us to do?’ to ‘What is there that Carter will be able to participate in?’ We are very proud of the inclusive environment that the city of Fishers has created and love taking Carter out in the community to experience new things.”

The Scotts give back to the community by supporting the Angelman Foundation. “We attend their annual walk here in Fishers and donate to them each year,” Vince said. “They have been a very valuable resource for us, particularly as we began our journey. They helped us find the medical resources we would need and assisted us in navigating the beginning of Carter’s therapies. They also helped us get a safety bed for him.”

Both Vince and Taylor are open about their ongoing need to get away for a day or two to recharge or even have a date night, something they share with just about all parents of special-needs kids. “The stress is real!” Taylor said. For Carter, she hopes that he will always have teachers, friends and family that believe in his abilities and are committed to seeing him grow. “Finding those that are truly committed to helping him become his best self are our greatest resources. We have also learned that it is so important to focus on the strengths that your child has. Every child has their gifts, and it is vital that we do all we can to show these to the world.”