On Monday morning, Tracy Valdez sat by her phone waiting to hear from her son’s neurologist.
Her two-and-a-half-year-old son Slade had several seizures over the weekend.
“I’m so worried and scared,” she told a Chronicle reporter.
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In 2020, the Valdez family needed a reliable van to transport their premature baby Slade…
Less than a week earlier, a Chronicle reporter and photographer were at her home in Holder to cover a breaking story about “Baby Slade,” who was born prematurely on March 27, 2020, with a cleft palate and other health issues. including a stroke that damaged his brain.
He also had torticollis, tight neck muscles that are better now thanks to a lot of physical therapy, and he still has a sensory disorder.
However, he no longer has a cleft palate.
As Tracy explained, doctors had discussed surgery to fix the problem but put it on hold during the early months of the coronavirus pandemic.
“In the meantime, it healed itself — God healed it with a lot of prayer,” she said.
Also since birth, Slade has been diagnosed with stage 3 autism, the most severe form.
Children with Stage 3 autism are generally nonverbal and communicate with others only to meet immediate needs.
“He grabs my finger and pulls me to the fridge when he wants something to eat,” said big sister Selina Valdez, 10.
This level of autism is also characterized by behavioral inflexibility, with extreme difficulty coping with changes in routine.
The day the Chronicle hit the Valdez house, Slade was bouncing on his trampoline in the living room watching “Blue’s Clues” on TV, his long mullet hair bouncing as he jumped, an Applied Behavior Analysis (ABA) therapist. nearby and watched him.
Slade jumped from the trampoline to the sensory swing, a soft enveloping hideaway where Slade can escape from his surroundings and calm down – or just have fun swinging like any other typical preschooler.
But Slade is anything but typical.
An ABA comes to the house every weekday and goes everywhere Slade goes, even shopping with him and his mother.
“It’s like having an extra pair of eyes all the time because he ‘escapes’; he runs away, and if he gets lost, he can’t communicate,” Tracy said. “That’s my biggest fear. He has no sense of danger.”
Community rallies with repairs and renovations
There’s been a lot of commotion in the Valdez house lately.
Built in 1963, the home was owned by Tracy’s grandparents, Woodrow and Margaret Martin.
“They raised five children in this house, including my father,” Tracy said.
The nearly 60-year-old home is dilapidated and derelict, but teams of people, local businesses, and church groups in the community who have heard of the Valdez family have volunteered their services and made much-needed repairs.
A big project was Slade’s bedroom, repairing the floor and preparing for his new bed, a cubby bed designed for children with autism.
It’s soft and restrained, made of mesh, with a secure mesh door to keep Slade from escaping.
It also comes equipped with a camera, microphone and speakers so Tracy and her husband Ben can watch and talk to him at night.
It has temperature and humidity sensors, as well as smoke and carbon monoxide alerts.
$17,000 security bed is insured.
“It stays where I put it and I know exactly where it is in an emergency,” Tracy said. “He has night terrors and once he wakes up he sometimes won’t go back to sleep and I find him running around or trying to get out.”
Hopefully the safety bed will also allow Tracy and her husband to get a good night’s sleep.
“I’m not sleeping,” Tracy said. “I found him meddling in things and going through drawers. I’m always afraid he’ll find a way out of the house.”
The days are long for any mother of an active two-and-a-half year old, but exponentially long for a child with severe autism.
“I drop Selina off at school at 8 and then me and Slade start our day,” Tracy said. “We started getting the ABAs about five months ago and it’s been such a big help. They’re here for Slade, but they’re helping the whole family.”
She has also found a community of other moms with autistic children online and a local group, the Citrus Autism Support Society.
“I want to learn as much as I can about what to expect and be prepared for it, even if it never happens,” she said. “When I talk to a mother or hear a story from a kid older than Slade, a mother who ‘was there, did that,’ I really want to know what she went through.
“We really can’t plan for the future because we don’t know; it’s day to day,” she said.
Tracy’s mother, Margaret Norman, who lives in Tampa, said her daughter is the “type of mom who won’t quit.”
“She’s doing everything she can to get as much help as possible for this baby because it looks like it’s going to be a long, hard road,” she said. “We all accept the fact of autism and now he’s had seizures and we worry and we’re scared.
“I told her, ‘Keep on praying, do the best you can with what you have, and remember that the Lord is not going to put more on you than you can handle,” she said.
Tracy said being a part of Citrus County empowered her.
“I grew up in Citrus County, and it’s a good county,” she said. “I know everyone struggles these days … and I’m grateful my county is coming through for me and my family.”