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Non-verbal child now tells mom all about his day

Gavin was born a micro-premie at 24 weeks and 4 days, weighing only 1 pound 6 ounces. He spent his first 4 ½ months in the NICU, on a ventilator for 2 ½ of those months. He was diagnosed with a rare genetic disorder, Baraitser-Winter syndrome ACTG 1, which affects his heart, kidneys, eyes, ears, neurodevelopment, and overall physical growth, all of which are checked annually.

“I love his eyes,” said Sara, Gavin’s mother. “It took him forever to open them after he was born. One day I thought I saw him peeking at me and then I started watching. I was so excited when he opened them!”

The family began receiving services through Rainbows’ Infant/Toddler Services right away. “We had a whole team, including an occupational therapist, physical therapist, speech language pathologist and early childhood special education teacher,” said Sara. “They came to our home until Gavin was 3 years old. They helped us as parents to understand what we could do to help Gavin and what services are available.”

Now 6 years old, Gavin is enjoying his first year at Camp Woodchuck. Getting ready for Camp, Sara bonded with Teresa Shackelford, Scheduler for Family Support Services, through emails and phone calls. “Teresa sat down with me and went over all the overwhelming paperwork and insurance and helped me get the IDD Waiver,” said Sara. “I love Teresa and Gavin loves Teresa. Every morning Gavin will say “I have to pick out my hat for Miss Teresa”. When he walks in the door, Teresa will complement his hat and Gavin will smile and nod. Everything he has is very special to Gavin and he wants to share with people at Camp.”

“Camp provides Gavin with a creative outlet in a safe environment,” said Sara. “It is important to him. He’s in his element, and I’ve noticed he now feels more comfortable in his own skin. He is more social, vocal about his needs, more social with peers, and more cognitive about other people’s bubbles (personal spaces).”

Sara is amazed at the progress Gavin has made with his verbal skills at Camp. “Gavin was non-verbal for most of the school year,” she said. “Now he gets up at 6 a.m. and gets ready to go to Camp. He studies his Camp calendar, and asks “What are we doing today?” When he comes home, he tells us about his day! Recently we were visiting his grandfather, who has a fish pond. That day, Gavin had gone to the Zoo with Camp and fed the stingrays. Gavin walked up to his grandfather and told him “I want to feed the fish. “His grandfather was so surprised!”

“Gavin is a glass half full mentally,” said Sara. “He is very energetic and has a happy outlook on life. He brings the mundane which is usually overlooked to the forefront. He is empathetic and cares about animals and people. He is very curious. If you meet Gavin, you will love him. That is just his personality.”

Sara, Gavin’s Dad Jamie, and Gavin call themselves The Hippo Family: Hippo Mama, Hippo Daddy, and Hippo Baby. Around the same time Gavin was born, a baby hippo named Fiona was also born premature at the Cincinnati Zoo. “We’ve watched Fiona grow up,” said Sara. It’s one of Gavin’s favorite things. We’ve even been to visit Fiona and her baby brother Fritz.”

When he grows up, Gavin wants to do something with animals or the fire station. He talks and dreams about hippos at all times along with fire protection and alarms. These dreams and goals have been more vocalized since being at Rainbows’ Camp Woodchuck.