Twins with severe PDD pose special challenge
EDITOR’S NOTE: This is the first in a series of four stories focusing on autism that will be featured in Hernando Today’s Health & Fitness section during the month of April, which is Autism Awareness Month.
April 2 was World Autism Awareness Day, and people wore blue in support of research into a neurological disorder that recent studies show affects as many as one in 60 children.
In Hernando County, authorities estimate more than 650 families deal with the daily obstacles of raising children who are diagnosed with autism.
Monique and Matt Legault, of Spring Hill, are raising 4-year-old twins Beaumont and Isabel, both of whom are autistic.
Having two children diagnosed with autism isn’t rare. A mother with one autistic child is at a greater risk – especially if the child is male – of having a second. But twins – particularly fraternal twins – aren’t so common.
Beaumont and Isabel – Beau and Belle – were diagnosed with severe PDD (pervasive development disorder). They are considered low-functioning, are nonverbal and have classic autism traits. The pair pose a unique sampling of life under the autism umbrella.
Monique displayed an undying reserve of enthusiasm as she discussed the special quirks of her children that make her life both a blessing and a challenge. Like many new parents, Monique suspected something wasn’t right with her twins. But having no other children to whom she could compare them, she prayed her observations were unfounded.
Neither spoke, she said, and both had some stereotypical behaviors of autism.
Now enrolled in a special-needs preschool classroom at Westside Elementary School, Beau and Belle thrive on some days and regress on others. Monique constantly strives to secure her footing when nothing in life, especially with autism, ever is constant.
Her children have sensory issues, aversions to certain food tastes and textures, sleep issues and lagging impulse control and are developmentally delayed in cognitive reasoning and physical milestones. They receive a plethora of services, from physical, occupational and speech therapies outside the home to nutritional food therapies that help offset their dislike of certain tastes and textures.
She discussed an inability to focus continuously on her children’s needs while simultaneously possessing an ability to intercept many potential disasters by staying on task most of the time.
Her home isn’t so much child-proofed as it is Beau and Bel proofed, Monique said. Alarms and safety locks on all doors prevent the twins from wandering. Furniture is scarce to prevent climbing accidents, and breakables are well out of reach of their curious hands.
As she described life with her children, Monique laughed at the memories, knowing only a person in a similar situation truly could relate. “It’s just our life,” she said.
Trying to advocate for children in a world that is ill-equipped to handle any hiccup from traditional methods can be difficult. At the very least, it requires a lot of time and energy devoted to finding information about what will help her two children reach their full potentials.
“Twins are tough,” said Monique’s husband, Matt. “A non-verbal child with autism is very tough. Add those together and it sounds like a recipe for a life of hard times and maybe at first it felt like it would be. But then why do we smile so much?”
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Crystal Rhine-Corder, also of Spring Hill, displays another side to the autism puzzle. Her 9-year old son, Jacob, is typical in appearance, vocabulary and physicality to most of his same-aged peers. Yet his delays, particularly in cognitive processing, are obvious after a few minutes.
Jacob is categorized as high functioning, which means he basically meets the milestones of neuro-typical children of the same age. But Jacob also has some autistic characteristics. They often are misunderstood as behavioral issues from a lack of discipline.
“Just because someone looks typical, that doesn’t mean they are,” Crystal said. “I have a fully functioning autistic child and people look at him like he’s typical so they talk it up as bad behavior.”
Crystal suspected something was unusual about Jacob when he was 18 months old. He was a head-banger, was quick to anger and suffered from sensory issues like food textures. “The seat belt was always an issue with it being too loose or too tight,” she said. He had other sensory issues, particularly aversions to clothing textures.
But Jacob reached all of his developmental milestones, some even earlier than expected.
Jacob was diagnosed at age 3 with developmental delays and oppositional defiance disorder as he entered preschool. Later he was diagnosed as having ADHD.
Still, Crystal was convinced there was more to his behavior. She pushed until he finally was diagnosed with high-functioning autism at All Children’s Hospital.
Jacob is in a full-time ESE classroom at Spring Hill Elementary where he performs well. He also receives outside therapy in language, as well as occupational and behavioral therapies.
Crystal has become the main advocate for her son, learning as much as she can about his autism and how to ensure he receives everything he needs to reach his goals. With two other children – Emma, 6, and Taylor, 2 – her life is busy. Yet she focuses on the positives.
She celebrates her experiences as a mom raising an autistic child. “I have become an educator and advocator,” she said, pausing briefly as her voice cracked a bit. “I’ve met people I probably would have never met, formed friendships that I would have never formed.”
For Jacob, Crystal believes he also was given a gift. “Even though my son is socially awkward, the friendships that he has made with other special-needs kids, it’s like they know. They aren’t weird or nerdy. They get it. They just know.”
