When Jane had her first child 27 years ago, she wasn’t prepared for what followed. Her son, Brandon, was born without legs or arms. It’s such a rare congenital condition, there is no name for it.
At first, she could think only about what Brandon wouldn’t be able to do. But quickly, she and her husband made an important decision: Rather than let their son feel sorry for himself, they were going to help him be as independent as possible. They also wanted to make sure their family was surrounded by people who had a positive attitude.
All that work and determination has paid off.
A graduate of Ball State University, Brandon now has a job, drives a car – with special equipment – and recently got married. He’s done it all with the help of his parents, his two younger sisters, loyal friends, a canine companion, professional caregivers and a whole lot of perseverance.
“The caregiving my parents provided to me as I was growing up really helped prepare me for where I am right now,” Brandon said. “One of the things we always talked about growing up is thinking outside of the box. They always taught me different ways to accomplish things.”
And they didn’t cut him a lot a slack. When he was little and it was time to put away toys, Brandon was expected to carry them to the bottom of the stairs, and then someone else would take them upstairs. He needed to learn his task was important too, Jane said.
It hasn’t been an easy journey. Brandon has undergone more than 20 surgeries and countless doctor’s appointments. The rest of the family had to make sacrifices.
The situation was a challenge emotionally too. It was hard for Jane to watch other kids Brandon’s age accomplish milestones that her son hadn’t reached yet – or might never be able to reach. Each time, she and her husband would go through a grieving process, and then they had to refocus.
To help her get through those times, she relied on other parents of special needs children.
“There is an alone factor. I had lots of family; I had lots of friends that were willing to be there for us, but no one really understands what I’m going through emotionally, physically,” Jane said. “When you are talking to another parent of a child with special needs – even someone with a different diagnosis – there is a connection there. There’s a heart-to-heart connection, and you can say things the way you can’t with other people.”
As deputy director of the nonprofit About Special Kids, Jane has become a real proponent of helping parents connect, whether it’s in a support group or one-on-one. Making that connection was a huge part of helping her cope with the challenges of caring for her special needs child.