Two of Sandy Hill’s children died before they reached their teenage years.
Most people don’t have an inkling of what Hill has been through. But there are others who do and, instead of giving herself over to despair, this Lake Highlands resident decided to use her experiences to help them.
Through a group called Parent Empowerment, which she founded with her cousin and former Lake Highlands resident Shannon Platz, Hill hopes to educate other parents about the constant struggles that must be overcome when raising a child with health issues and physical limitations.
Though Hill’s firstborn, a son, is turning 20 this year, her two daughters were born with an undiagnosed neurological disorder that stumped doctors.
“My girls were extremely medically compromised, as well as having very low-functioning cognition,” Hill says. After the birth of her first daughter, “all of the physicians were telling me it was not genetic. Then I had a third child, a second daughter, and 10 minutes after she was born we knew she had the same thing because the back of her feet and the back of her head was all that touched the crib when they laid her down … it was a neurological stiffness.”
Hill’s first daughter lived for 12 years, but her second lived only two. In part, Hill says, this was because she was much more medically aggressive with her first daughter.
“We didn’t know what we were dealing with, but when the second one was born, we knew exactly the outcome and how involved she was going to be,” Hill says. “To be medically aggressive was really not doing her any favors because both daughters were in severe pain and distress.”
Throughout the years, she says she gained plenty of first-hand knowledge about how to navigate the educational system for special needs children. It took her years to figure out all the different programs available to children with health issues, physical challenges and learning differences.
“Knowing your child’s rights and what they are offered is very useful,” she says. “It is extremely hard if you have never been exposed to it — even all the acronyms they use are hard to understand. Just having someone spell all that out for you is helpful.”
That’s where Parent Empowerment comes in. Still in its infancy stages, the organization is gearing up to be an ultimate resource for parents with special needs children.
The company has been in existence a little over a year. It was Platz who came up with the idea and approached Hill for help. With two special needs children of her own — an 11-year-old daughter with sensory integration disorder and a second daughter, 9, with epilepsy — Platz says she and her husband “stepped up because we realized this isn’t about the physical aspects. It’s about us a family and what we are going to do to address the needs of the family.”
Emotional but determined, Platz met the challenge head on, sitting down with “professionals and other parents and saying: ‘Let’s break this down into things that will make it feel more manageable.’ Everything seems to weigh on you at once, but not everything has the same highest sense of priority,” she says.
Platz believed that Hill would be an excellent partner because of her own journey with her daughters. Both women talked to numerous doctors, therapists, teachers and parents who all told them the same thing: that nothing else like this program is available to help parents.
“The excitement on their faces is fantastic,” Hills says.
Dr. Debra Burns, a pediatrician who treated Hill’s daughters before they died, says programs such as Parent Empowerment help “parents advocate for their children and be the best ‘expert’ in their child’s big picture.”
“Parents usually do know what’s best for their child,” she says, “but may need help finding it, defining it and getting started.”
The program is still in its early stages; software and a curriculum are being developed now. Meanwhile, Hill and Platz are working with health fairs for the Mesquite school district and have completed groundwork through other schools in the area.
Hill says she basically muddled her way through as a parent of special needs children, just trying to make it through the day, and she doesn’t want other parents to find themselves in that same position. Her motivation for this new project is knowing she can make a difference in the lives of people just like her, but that’s not the only thing driving her, she says.
“I also feel this will be a way of honoring the memory of my girls.”