I met Stephanie Hall, 42, and her parents, Doug and Judy Hall at her favorite spot – Dean & Deluca. Her most favorite things is an iced latte and a giant cookie from the Leawood, Kansas, gourmet shop. “She loves her sweets,” her dad said. She currently resides at a nearby group home and receives residential supports from TNC Community. This afternoon, her mom picked her up for an afternoon cookie and latte. Stephanie usually spends Saturday and Sundays with her parents and family, so this was an unexpected surprise for her.
Stephanie was a typical infant. “Stephanie did everything normal until she was six months old,” Judy said. “And when she was six months old, her development came to a screeching halt. She could sit up, roll over, laugh and smile. I started probing the doctors as to why she wasn’t pulling up or trying to crawl. I was just told that some babies are just late bloomers and not to be concerned. I wasn’t buying that.”
When she was one, she still wasn’t pulling up, walking or crawling. Judy recalled her as a happy baby. “At first, I thought ‘Boy, I’m a great mom’ because I could put her on the floor with some toys and she was happy toplay all day unless she had a dirty diaper.”
At two and a half years old, Stephanie still wasn’t walking. The doctors had no comforting advice. . Judy was able to get Stephanie into the Parent Infant Program just starting at the Kansas City Regional Center in July 1973. Stephanie’s evaluation revealed that she was functioning at a three to six month level.
“So, I’m this first-time mom thinking, ‘She’s 30 months old and functioning at a 3 to 6 month level. That means we only have 24 months to work on to catch up.’ ” Judy laughed. “No, it didn’t work that way. But at least we found help in the Parent Infant Program.”
Stephanie was assigned a therapist, Susan Sweetland. Susan came to the family’s house once a week, and Judy took Stephanie to the center three times a week for intensive therapy and training. Stephanie started walking two months after she turned three, wearinga cable brace that strengthened her legs.
“I was really hoping that we’d have a walker before her younger sister, Allison, was born in January, 1974, and we did,” Judy remembered.
When Stephanie was three, the Kansas City Regional Center suggested that Stephanie start a preschool. The search to find a preschool for a child diagnosed with intellectual/developmental disabilities who wasn’t potty trained or walking proved impossible.
“I went to the two schools in the city at that time, and their requirements were for students to be walking and potty trained by age 3,” shared Judy.
Judy shared that information with the Regional Center, and they suggested that perhaps the Halls should start a preschool that could accommodate children like Stephanie. After the initial shock settled, the Halls got to work immediately. They met with the Regional Center for assistance in hiring a teacher. They found the Blue Ridge United Methodist Church who allowed them to use the basement rooms during the week. Doug was a member of the Raytown Jaycees, and they adopted the project and funded the start up of the preschool. The Susie J.C. Preschool was founded in 1974.
“We named it after Susie Sweetland, who was the therapist that helped us, and the Jaycees since they gave us the money,” said Judy. “Our school was for anyone – birth to age 7. They didn’t have to be walking or potty trained. We took them all.” And at age 7, the students graduated to the Missouri state school system.
As the preschool grew, they had morning and afternoon sessions and two teachers. It later merged with the Joan Davis School. The parents of the children in the preschool became a primary support group for each other. In fact, the entire concept of preschool for children with developmental disabilities was very new at the time. The preschool had a significant effect on children who were diagnosed with Downs Syndrome.
“They had no place to go. At that time, they were being warehoused. They’d send them off to a state school. And they’d leave the home and never be heard from again,” said Doug. “Those kids made amazing strides in that environment. Many were mainstreamed.”
The Halls knew they needed more helpwhen they left Stephanie, 7, and her sister, 4, with Judy’s parents for a weekend, so the couple could attend an out of town function.
“When we came back from St. Joseph, my mom and dad, who are the most loving, caring, do-anything-for-us kind of parents, were just frazzled,” said Judy. “We thought, ‘we’ve got to have some help here.’ ”
Doug and Judy were finding it more difficult to integrate Stephanie into their family life. One more child was on their way. Their church was struggling to find a place for Stephanie. It asked the family not bring Stephanie to church unless they called in advance to schedule it.
“Stephanie was too big physically to go into the nursery but she couldn’t function in a classroom with seven year olds,” Judy recalled sadly.. “So that was beginning to be a real problem.”
As time progressed, well-meaning friends were frustrated because the Halls weren’t concerned with what had caused Stephanie’s disability.
“Our philosophy was it didn’t really matter what caused it. Stephanie was who she was,” said Judy. “It was also hard to have those same friends tell us that we were chosen to have Stephanie because we could handle it, and I always said that an instruction book should have been sent along too!
“We do know now that it was oxygen deprivation at birth that caused Stephanie’s disability,” said Judy. “Fetal monitors weren’t being used in 1970. Today that issue would be discovered early in the delivery process.”
Judy said it’s heartbreaking to see parents who don’t accept their children as they are “for who they are and who they’ll be forever. They are perfectly made the way God intended.”
“It’s not like it’s been some catastrophe that Stephanie is Stephanie,” stated Doug. “She’s just the way she is, just like our other two daughters are the way they are. She’s made huge impacts on people’s lives.”
Additionally, Doug recalls many people offering free advice. “They were piling all this guilt on us all this time like we weren’t doing it right.” Doug reassures other parents receiving unsolicited advice. “You know your own kid better than anybody else”
The Halls saw other families struggling. “Mostly it’s the fear of the unknown that worries you because you don’t know what each step along the way will bring,” said Judy.
The Halls developed a family routine that worked well for them. At seven, Stephanie began living at Harry S. Truman Children’s Neurological Center, now known as TNC Community.
“Our girls learned early on, that weekdays and weeknights were theirs, after Stephanie was at TNC Community. And weekends were ‘Stephanie time.’ Whatever they had going and whatever we had to do, that was fine. But Stephanie was with us at all the events – the baseball and basketball games andice skating competitions” recalled Judy. “All of their friends and their parents have told us how much they appreciate the contact they had with Stephanie because their kids learned a greater appreciation for people who have disabilities. Even our grandsons – Stephanie’s nephews – are kind of amazed by her.”
Doug wants to make sure parents don’t overlook how much good they can do in their communities. “Because of Stephanie, I got involved in volunteering. I was on the Missouri State Mental Health Commission for four years. And I’ve been involved in TNC Community since 1978.”
Many of the resources parents currently take for granted simply weren’t available a generation ago. The Halls resolved to either find the resources they needed for Stephanie or create them. They created the first preschool of its kind in the Kansas City area that served children with developmental disabilities and have become community activists. Their story is one of activism and empowerment.
Never underestimate parental fortitude. “Parents have a lot of the power. They need to know that and need to pay attention to how much power they have,” said Doug. “If you have some crisis, if you bring parents, they tell their story and people pay attention. The parents have power.”