Lessons from Lindsey:
'Patience and an appreciation for the important things in life'
Written by: Camille King
Edited by: Gabrielle Brown
Lindsey with her brothers and sister. Courtesy of Diane Ross
“It makes no sense that anybody would spend money to fight against kids instead of helping kids.”
Unfortunately, not everyone in the Ross’ life has been so accepting. Officials at the local Schaumburg High School district where Ross lived sued her family to avoid having Lindsey come to their high school. The event completely shook Ross and her family’s life.
“When Lindsey was 4, we decided that we wanted her to go to our neighborhood school,” Ross says. “It was at a point where inclusion was just being thought about, particularly in Illinois, because Illinois sits at the bottom of the barrel for special ed in inclusive education.”
Lindsey had a successful elementary school experience, although she faced some challenges along the way. When the Palatine and Schaumburg high school district sued Lindsey’s family, her elementary school to testify against Lindsey. Instead, the elementary school offered to testify on Lindsey’s behalf.
During the case, Matt Cohen, the Ross’ lawyer at the time, described Ross as being “very frustrated and demoralized” at times. At the time, Lindsey was in and out of high school, mostly being homeschooled by her parents.
“The case was a very long drawn out case,” Cohen says. “We started out in a hearing against the district and then we reached a settlement, and for about a year during the settlement things went very well, but then the school essentially sabotaged the program that we worked out in the settlement.”
Lindsey went back to school the following year. Ross says things were going well, but then, to her surprise, the school decided to take the Rosses back to court.
“There was nothing major that had happened other than they just decided they were tired of doing it, I guess,” Ross says.
The school administrators telling Ross they didn’t want to teach her daughter was already emotionally stressful for her. On top of that, the legal fees were a financial burden. The Ross’ had legal bills over $800,000, Ross says.
“It makes no sense that anybody would spend money to fight against kids instead of helping kids,” Ross says.
Diane described herself as feeling angry at the time, and extremely disappointed.
“I was a former educator and my husband taught school for 35 years,” Ross says. “They still only have kids with minor disabilities in our local high school. Up until a few years ago it wasn’t even completely wheelchair accessible.”
“On the whole, [Ross was] remarkably positive and trying to get what was right,” Cohen says.
Ross knew how beneficial it could be for all kinds of children with disabilities, not just Lindsey and Rett syndrome, to be included. When the case got to the point where it would have gone to the Supreme Court, Ross and her husband decided to drop it, as their attorneys advised them not to appeal to the Supreme Court, Ross says.
Despite everything, Ross says the experience of having a daughter with Rett syndrome has affected her life in a profoundly positive way.
“Lindsey has been my greatest teacher of those important life lessons,” Ross says, “Such as patience and an appreciation for the important things in life.”
Ross is now on the board of the Illinois Rett Syndrome Association, where she writes articles, plans conferences and workshops, and—although it isn’t in her work description—she visits families to help them understand what the diagnosis means for them and their child.
“It's great to be able to help other people,” Diane says. “And you know, sometimes it dredges up those old hurtful things. It’s heartbreaking to see people in their mid-20s going through what we went through and knowing how difficult it is. So I always want to help in any way that I can.”
Diane Ross with her daughter, Lindsey, at an Illinois Rhett Syndrome event. Photo credit: Breanna Morton
hen Diane Ross hears that a child in the Illinois area has been
diagnosed with Rett syndrome through the Illinois Rett Syndrome
Association, she often travels to the child's family to offer solidarity.
Ross can relate to these families because she received the same diagnosis for her daughter, Lindsey, nearly 30 years ago.
The start of Ross and Lindsey's day has a familiar pattern. After waking up, Ross takes her daughter to the bathroom, waits patiently for her to use the toilet, takes her to the kitchen and feeds her breakfast, bite by bite. Then, it’s time to get ready for the day: Ross helps her daughter brush her teeth, dresses her and brushes her hair.
Lindsey was 3 when she was first diagnosed, a diagnosis that came much later than average. Typically, Rett syndrome is found within the first few months after birth, but because Lindsey was a high-functioning baby and toddler, her doctors and family had no reason to believe that something could be wrong. When the diagnosis came, Ross was devastated.
“You know, that’s a hole in my heart that will never be filled,” Ross says. “It gets better over time, but it never goes away.”
Lindsey can't speak and has limited usage of her hands. While she is able to walk, she has apraxia, the inability to fully control her body, and needs supervision. Lindsey can communicate through an iPad, with some help, and she can point with assistance.
In addition to getting her ready in the morning, Ross spends her entire day assisting Lindsey. She feeds her meals, helps her to the bathroom a few times, washes and blow dries her hair at night and helps her into bed at 7:30 p.m.
Lindsey’s family—including Ross, her father, two younger brothers and one older sister—have all learned from Lindsey, Ross says.
“I think it’s helped [my other children] like it’s helped us, which is just, you know, to have a greater capacity for people with difference,” she says.