Walk with Caleb
Caleb is a fun, outgoing five-year old, but at one time his future was not so certain. His family didn't even know if they'd get to spend 5 hours or 5 days with him let alone 5 years! Since he came into this world, Caleb has amazed all those around him with his spirit and determination.
Caleb suffered a brain injury and severe seizures at birth. He was later diagnosed with Spastic Dyskinetic Quad Cerebral Palsy. Caleb faces many obstacles including the ability to feed himself because all four of his limbs are affected. While Caleb is able to eat orally, he also requires a feeding tube.
“His biggest challenge is communication,” explains his mom Cindy. “Caleb is very intelligent. However being unable to speak makes it extremely difficult to understand what he wants and needs. We get frustrated and feel helpless. I can't even begin to imagine what Caleb must feel like when he looks at something and wants it and nobody can figure it out. It breaks my heart.”
Cindy didn’t know what to expect and took a ‘wait and see’ approach as Caleb either met the milestones of growing up or didn’t. At eight months old, Caleb began receiving services from SMD including the Outreach program, physical therapy, occupational therapy and speech language pathology. SMD also provided resources to Cindy and her husband Aaron, which helped guide them to understand the next steps.
“The Outreach program has been amazing. The therapists are wonderful. They treat Caleb so well and are a world of useful information. I am very thankful,” says Cindy.
Caleb struggles on a daily basis to do everything, but these things do not define him. Recently, Caleb received a new piece of equipment with funding support from the SMD Assistive Technology Program. The Buddy Roamer allows him the freedom and mobility to be independent. “He can walk up to a table and play with books and his iPad. He dances in it and he is even able to run up to me or anyone and give us a great big hug. He can walk into the kitchen to his high chair or the counter to show us that he needs something or he will walk down the hallway to his room. I love it.”
“One of his favorite things to do is go to the YMCA. He loves to go swimming and into the hot tub. He also likes to play basketball, climb the play structure and go down the slides with his sister. Caleb is so active we signed him up for micro soccer this summer. I am so excited for him to be able to do that this year. He is thrilled. The addition of the Buddy Roamer is the best thing that could have happened to him,” exclaims Cindy.
Taking care of Caleb’s needs and raising a two-year old daughter has been a balancing act for Cindy and Aaron but they appreciate the support and precious moments that life has given them.
“People take so much for granted and in this special life you really can't. Caleb told me through his Eye Gaze (a computer controled with his eyes, and can speak for him) that he loved me, for the first time at the age of four. The most amazing thing was hearing that. Even though it was not his voice and the words were coming from a computer I still knew that those words were meant for me and that they came from him,’ reflects Cindy.
“This is the road less traveled, but it is easier when we have people who will not be afraid to walk beside us.”