Autumn and Kalob Mattix don’t take the easy route regarding having babies. All three of their children were born early and with some complications either during delivery or after. While they are grateful to have three rambunctious, healthy boys, the tumultuous beginning has long-term effects on their youngest, Winston.
Those of us who are fortunate enough to have healthy babies with no complications often don’t think about what life entails for a couple experiencing a series of challenges right out of the gate.
“It’s nothing but battles,” Autumn said of the amount of bad news that they have had to endure since Winston’s birth. “We have been on tons of hospital and doctors’ visits with tons of tests,” she added. While the couple is grateful to slowly be getting answers and support, they both have full-time jobs, and balancing it all has been extremely difficult.
“We are lucky to have family that is close to help us with Bentley and Kayson while we concentrate on Winston,” Kalob said. Bentley, eight, and Kayson, four, are Winston’s older brothers.
Winston is now three, and to date, they have uncovered a slew of delays. He has had a few sets of tubes, and he has hearing loss, speech challenges, and complications with the movement of his tongue, which has also caused feeding issues. One of his official diagnoses is severe expression and language impairment.
At age two, the family was referred to the Marion County Board of Developmental Disabilities (MCBDD) Early Intervention Program and Help Me Grow. Autumn and Kalob agreed that this is when they started to feel like there was a light at the end of the tunnel.
“Before we were looped in with MCBDD, it felt like we were playing ‘word Jenga.’ It was so hard to figure out what Winston’s wants and needs were, you just had to guess,” Kalob said of the early days learning his communication style.
“Ciarra Shelton, our Developmental Specialist from MCBDD, was great. She gave us tools to help us improve his speech and communicate with Winston through pictures,” Autumn said. “It was just nice to have someone to help us track his progress and help us see that he was reaching goals.”
Winston “graduated” from the Early Intervention program on his third birthday and feels the loss of support now that they are trying to navigate next steps.
“We often see families encounter this struggle after leaving Early Intervention and entering the school system,” Angie Farson, Director of Program and Compliance, said. “We are working on improving collaboration with the school districts to ensure a smoother transition for families.”
Since Winston’s graduation, the family has continued receiving services from the Marion County Board of Developmental Disabilities. They are also trying to navigate the Individualized Education Program (IEP) process through the school system. This has presented the family with an entirely new set of challenges, but they are learning about the resources to best support their son.
“Advocating can be so tiring, and there are days that we just want to give up. But then we see progress, and it recharges us to keep fighting,” Autumn said.
One thing families learn through their developmental disability journeys is that the fighting never goes away. The parents and caregivers become the experts, the researchers, and the advocates who move the needle of support for their loved ones.
The Mattix family’s message is to never give up. Keep focusing on the milestones and small nuggets of progress, and know that you, as parents and caregivers, are the reason your child is succeeding.
The Marion County Board of DD is proud to be a partner in this journey for families. The small rewards are the fuel for all involved in the success of those in the Marion Community with developmental disabilities.
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