A mother’s intuition allows her to sense when her child has a need, even when everything on the surface appears to be fine. For Lisa Fuller, her intuition and willingness to advocate has allowed her daughter Catherine to blossom into the young woman she is today.
When Catherine was 18 months old, Lisa began to question behaviors she witnessed in her daughter. Being a registered nurse and well-versed in typical childhood development, she was perplexed to find her daughter speaking in full sentences as a toddler. Her pediatrician shrugged it off as her being an exceptionally bright child. Catherine’s meltdowns rivaled any “terrible twos” tantrum Lisa had ever seen. She was told not to worry, it was just a phase she would outgrow… only, she didn’t. Lisa knew she needed help and was desperate to find answers.
When Catherine first began to show symptoms, very little was known about Autism Spectrum Disorder (ASD). ASD can manifest in varying degrees and arise across a wide spectrum of symptoms. The disorder can affect a person developmentally, socially and can impede or accelerate communication skills or cognitive abilities, and in Catherine’s case, exhibit extreme aggression.
Through her medical field background, Lisa knew the importance of early intervention to ensure the best possible outcome. She made calls, searched the internet (which was not nearly as plentiful as it is today). Lisa called hospitals and specialists and finally, she got her answer. Catherine was diagnosed with High-Functioning Autism, Asperger’s Syndrome. With a clear diagnosis, she was determined to give her daughter a fighting chance at a “normal” life. While holding a full-time job, Lisa carried Catherine to a multitude of weekly appointments—speech therapy, occupational therapy, behavior intervention therapy—adding up to near 20 hours per week. Catherine’s hectic schedule required Lisa to hire a nanny to help get Catherine to all her appointments and still allow Lisa to work.
Because ASD was not widely acknowledged at the time, very little of Catherine’s therapies were covered by insurance. Additionally, Catherine’s behavior was so extreme that Lisa had to enroll her into private schools who were better equipped to care for her. Lisa admits the cost of Catherine’s care mounted annually to more than her own salary, forcing Lisa to place a second mortgage on her home, cash in her retirement, and borrow money to pay for Catherine’s therapy.
“It was really hard; very lonely,” said Lisa. “Many nights I just cried and prayed that what I was doing, what I was putting my family through, was going to make a difference. For a while, I couldn’t see the light at the end of the tunnel and I just had to pray I was doing the right thing.”
After exhausting all her options in Mississippi, Catherine, who was 10 years old, was sent to a therapeutic boarding school in North Carolina that specialized in ASD. A month later, Lisa was told she had 24 hours to pick up her daughter. Lisa was stunned. Scrambling, the education consultant who had recommended the school in North Carolina found an alternative recommendation… this time in Utah. With a heavy heart, Lisa flew her daughter more than 1,200 mile from home. Thankfully, this is where Lisa and Catherine found hope.
“Catherine thrived there,” said Lisa. “That’s not to say we didn’t have our challenges. It took time to adjust and that made for some long weekend visits, but to see where she is now, it was worth it.”
Catherine spent more than a year in Utah. In 2010, Lisa learned that Canopy Children’s Solutions, then Mississippi Children’s Home Services, was in the preliminary stages of developing an educational program specifically tailored to students with ASD.
“We weren’t even far into the process when I got a call from Lisa,” said John Damon, Chief Executive Officer for Canopy. “Lisa wanted to know everything about it and told me again and again how much this was needed in Mississippi.”
In 2011 when the W. L. Albritton Art & Education Center opened at Canopy’s CARES Center in Jackson, the CARES School began offering on-site education to children with extreme behavioral disorders, including ASD, whose needs were greater than what their local public schools could provide.
Lisa brought Catherine home in hopes of immediate enrollment in CARES School. However, instead of merely writing a tuition check, Lisa had to be granted permission by her local school district to send Catherine there since the CARES School utilizes funds directed from the county to cover students’ educational costs. She went before the Madison County Board of Education to make her case as to how detrimental it would be to Catherine and the progress she had made if they required her to fail in her public school before granting her permission to attend the CARES School. They agreed.
Finally the Light
Catherine spent a little over two years at the CARES School before she transitioned to her local public high school. She has gained the confidence to run for student council, compete in a talent show and has a vast network of friends. Today, she is making plans for college and is preparing for her senior year of high school.
Lisa shared her story at the 2017 Children’s Mental Health Summit with a crowd of more than 350 people. She hopes that in telling her story she will inspire parents and caregivers to fight without ceasing to get their children the help they need and to encourage providers to increase resources available to families faced with not only ASD but also mental health issues.
“I believe we should do more to make quality care available to everyone,” Lisa said to the audience. “Not just people like me who are fortunate enough to have insurance and a pretty good job.”