Beckett Nickle is the epitome of a fighter.
Sure, he’s only 5 years old, but he’s already battled more in his short time in this world than most people face in a lifetime. He is autistic, has attention deficit/hyperactivity disorder (ADHD), developmental coordination disorder (DCD) and asthma.
And he has hypnotic cerebral palsy (HCP). It is one of the most rare forms of cerebral palsy as it causes low muscle tone.
“Because of the low muscle tone, Beckett gets tired extremely easily. His doctors say he uses two to three times more energy than others use,” explained his mother, Erin Nickle. “I like to joke with my husband that we’re like an NBA team, as our world revolves around ‘load management.’
“We have to be very protective of Beckett’s activity levels, and make sure to minimize activities outside of his normal day to avoid him becoming overtired/overstimulated/having meltdowns. When he does get low on energy or gets sick it can take him weeks to get back to normal.”
Beckett was diagnosed in the summer of 2021. His occupational therapist at the time noticed he had low muscle tone, and recommended his parents talk to his pediatrician about it.
His pediatrician agreed with the diagnosis and, after reviewing his history of developmental delays, referred the family to Cook Children’s neurology. Once there, his neurologist ordered a brain MRI, which confirmed mild damage resulting in the HCP diagnosis.
Unfortunately there isn’t any type of medication that can help with low muscle tone, Erin noted. In addition, DCD is also a disability that presents physically.
“Every day is a new challenge,” she said. “DCD is exactly what is says, and affects his coordination and motor skills. What others see as just a clumsy little boy is actually his body’s inability to process movement fluidly, resulting in a lot of trips, falls, bumps, and bruises.
“We feel like we have a good handle on his CP and DCD, and are learning that his autistic needs are what require the most support.”
As is common with many autists, Beckett routinely has sensory issues. He struggles with everything from loud noises and food aversions, to lacking fine motor skills and not recognizing pain. He is also very rigid in his expectations of life, from how a sandwich should be made, to what shoe goes on first, to where his Lego’s head should face.
“We like to refer to him as our ‘Plan A’ child, because there is no ‘Plan B’ with him,” Erin said. “The way something was done the first time is how it has to be done every time, and in the order he needs it to go. When those consistencies aren’t met, a meltdown is likely to follow.”
Beckett is currently in a combined early childhood special education/kindergarten program, and Erin said he loves it. He has a team of teachers he’s comfortable with, friends that he adores, and a very supportive administration.
However, though he loves it, it isn’t without its difficulties. Erin also noted that getting education for a child such as Beckett is not without other trials as well.
“The challenge though lies in what accommodations are allowed, what aren’t, and that true customization for each child is ultimately limited by legal red tape and funding restrictions,” she said. “Beckett’s case is unique, and the modifications we’ve fought for aren’t something most children need. We’ve been able to reach compromises and are in a good place, but ultimately there’s so much more that could be done to truly maximize his educational success.
“We’re also reminded often by friends/family/strangers that Beckett ‘looks normal,” so when engaging with others they usually have expectations that he can’t, or won’t, meet. Grace is something we are very intentional about trying to show to others, and we desperately hope that others show Beckett grace in return.”
While he likes it, Erin said school is extremely exhausting for Beckett, so much so that they’ve arranged for him to have one day a week where he has his outside therapy, as well as rest time. When he misses those days, or they’re changed to another day, it shows. He becomes overtired, has meltdowns, and can take up to a week to regulate.
“He also struggles with the educational aspect of school, specifically retaining information. Thankfully, he’s thriving socially, which is a big win in and of itself,” she said.
Beckett is very active, to an extent. He loves to play outside with his friends, bounce on the family trampoline, play hide and seek, and swim. He also plays baseball, though he tends to enjoy being on a team more than the actual playing of the game itself, Erin said.
“Beckett is becoming a great advocate for himself, and is starting to understand when he needs to take breaks,” Erin said. “Beckett has a wheelchair to use when he wants to be active but is tired, and is getting pretty good at zipping around on his own.”
Beckett has two favorite things in this world – Captain America, and Legos. The window seat in the playroom has been made into his personal Lego Land.
“When we’re not outside you’ll find him sitting there for hours, happily making all kinds of creations,” Erin said.
Beckett also loves spending time with his 7-year-old brother Keyser (Ky). They are very close.
“We always tell people that we know God gave us Keyser first because He knew Beckett was coming,” Erin said. “Keyser is, without fail, the most empathetic, caring, compassionate, thoughtful child I’ve ever met. Ky has always had a heart for children with special needs, and goes out of his way to befriend kids with challenges.
“Keyser is also a force in his own right. Smart as a whip, loves playing baseball, is ravenous to learn, and is incredibly strong in his faith in Jesus.”
Erin said Beckett’s journey has reached a plateau, for now. He just finished his latest NeuroPsych evaluation. He’ll go back in two years to do further evaluations for potential learning disabilities.
Beckett is currently doing hippotherapy at Paws for Reflection Ranch to strengthen his hips and core muscles. Erin said she and his teachers have seen “incredible improvement” in his confidence and independence.
She been accepted into an internship program through an advocacy group to teach her the ins and outs of Texas law and disability rights.
“I look forward to using that training to advocate for Beckett and others like him,” Erin said. “As a family we’re committed to being a positive voice for the disabled community, both visible and invisible, and hope others will join us in creating a welcoming community for those that are differently abled.”
As for how the public can help?
“We’ve had some pretty awful experiences with people when they see him getting in and out of his wheelchair – eye rolls, whispers, and ugly looks that are truly shocking and heartbreaking. Beckett will start noticing those reactions himself soon, and we’re hopeful that sharing his story will help others understand his challenges, and reduce some of those reactions,” Erin said. “We know that seeing a child that can walk use a wheelchair is abnormal, and would love to have the opportunity to meet people in the community and help them understand. So please, if you see us out and about, come say hi!”