Mindy says she knew when her son Oliver was just three months old, that his development was not on the same track as her daughter’s was at the same age. When doctors told her that Oliver was just a “late bloomer,” Mindy refused to listen.
Four years later, following test after test, Mindy finally got an answer about Oliver: “Oliver had a mutated SEPN1 gene. We would later learn that it was a rare form of muscular dystrophy call Rigid Spine, which was diagnosed in only 70 other patients worldwide.”
What followed for Mindy and her husband was a mix of emotions.
“After the diagnosis, my husband and I felt heartbroken and jolted. Nobody in our family had a disability and at the time, we knew little to nothing about the differently abled community. We were suddenly living with disability under our roof and tasked with moving our family forward, without any instructions or handbooks on how to handle it all.”
Faced with traveling down an unknown path in life, Mindy found herself asking questions about Oliver’s future. Questions like, “Will he be able to dress himself or go to the bathroom on his own, or will he need help from me or his teacher?” and “Will he be able to keep up with the rest of his class at a school field trip or will a friend stay behind to walk with him at a slower pace?”
But not only was Mindy and her husband raising Oliver, they were also raising their other children at the same time. “There is no clear formula for how to manage the limited time and attention you can give to the rest of your family. Siblings in particular will inevitably fall by the wayside to a child with a disability,” shares Mindy.
That’s why, when Mindy and Oliver were invited to the White House through Runway of Dreams, Mindy’s organization that works to create functional and modern clothing options for people with disabilities, Mindy contacted the organizer to inquire if she could include her whole family in the event. She was met with a “yes.” “As excited I was to be honored,” writes Mindy, “what was more significant to me was being able to share the day with the entire family, especially my other children.”
So while the handbook to raising children with disabilities doesn’t exist, Mindy is doing a great job of providing an exceptional, inclusive upbringing for her son.
“At the end of each day all any of us can do is our best. That is the only rule I know how to follow.”