Soon to be 3 years old, Ben is getting ready to go to pre-kindergarten at his local school where he’ll get to be around other kids his age to help with motivation, learn social skills, and be away from home a few hours a week. With the help of early intervention services through Rainbows, he’ll be ready to learn and enjoy a wheelchair equipped with a special tablet to help him communicate with others around him.
Ben’s family got connected to services through Rainbows when he was a month old. He is profoundly deaf, has vision challenges, feeding issues and is developmentally delayed without a definitive diagnosis. “As a NICU nurse, I thought I knew what Rainbows did, but having an early interventionist in my home, helping me and my child was a whole new experience,” said Chelse, Ben’s mom. “Rainbows has exceeded my expectations. I would be lost without them.
Chelse goes on to say, “This team of women has had more of an impact on my life than they could ever imagine. These once-strangers have become my village. They cried with me and laughed with me. Together, we grieve and celebrate. They have carried me through the valleys and praised me on the peaks. Physical therapist, Amy has become my personal weekly therapy session. A time where I can vent without judgment while receiving advice and direction. She keeps me hopeful, yet realistic. She has learned all of his quirks, likes, dislikes, what makes him giggle, what motivates him, and how to comfort and console him when he’s upset.”
Amy has been working with Ben and his family since the beginning. She’s helped him get strong enough to sit up by himself for a few seconds and increased his weight bearing abilities to get him ready to walk. Currently, he can scoot and roll over. Eating real food and drinking with a straw are things they continue to work on. Amy has coordinated help from Kansas School for the Deaf Darcy Beaver, vision specialists Angie Hilt with Kansas School for the Blind as well as a speech/language pathologist Beth Watkins and a social worker Suzanna Gevock to help Ben get the equipment he and his family needs to be successful.
“Hearing is such an important part of development,” said Amy, who helped Ben get used to cochlear implants for both ears. “Being able to hear is critical to speech, walking and overall development,” she adds.
Support for the family includes when Ben started learning to walk he needed his walker to glide across the floor. This led to the carpet in the family’s home being replaced with flooring so Ben could be independent. A wagon stroller helped the family take Ben to the park and the zoo carrying the devices needed to give Ben autonomy. A stander helps his legs and core get stronger for sitting and walking. Thanks to help from Rainbows, he was able to get Medicaid and multiple grants to help fund equipment. “Navigating all the services and taking care of Ben’s appointments has been challenging,” said Chelse. “Our family helps out so much and maneuvering this life would be impossible without them.”
The fourth of five children, Ben loves his parents, siblings and his grandparents. He enjoys being tickled, pushed on the swing, and going for walks. “Ben’s family is great support for him,” said Amy. “He has made great progress. We’ve worked together to put several things in place for him to continue to get stronger and be successful when he turns 3 and transitions into the school system.” Amy notes how much she has enjoyed helping the family and connecting them to resources available in the community. “We have many wonderful partners in our area to support children with multiple needs like, Ben,” said Amy. “I’m glad I have the opportunity to make those connections.”
“I am extremely sad to think I will not see them so frequently but I trust they have prepared Ben and our family for the future,” said Chelse. “The compassion and care they have shown will be cherished forever. If there’s one small silver lining to no longer having weekly visits, it’s that I won’t feel obligated to clean the house every Tuesday morning.”
