Brian Horita and Evelyn Perez-Horita's daughter, Lia, was a year old when doctors flagged some developmental delays.
By age 6, Lia was diagnosed with sensory processing disorder, hypotonia (low muscle tone) and a severe intellectual disability.
"She's nonverbal," Perez-Horita said. "She's basically a 9-year-old with a 2-year-old brain."
It can be a lonely, bewildering road, Perez-Horita said, parenting a child you adore with your whole soul but can't always reach – not in the ways a lot of parents take for granted, anyway.
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"You can't get out a lot," Perez-Horita said. "You can't go to a restaurant. You can't go to a regular play group. Other kids look at your kid, who's maybe biting their hand or banging their head back over and over. You feel so alone."
You're not alone, of course. Fifteen percent of American children have a developmental disability, according to a Centers for Disease Control and Prevention report. But finding and connecting with them can feel nearly impossible when you're in the thick of parenting your own child with special needs.
Neighborhood Parents Network, a Chicago nonprofit founded in 1980 to connect families with the resources they need to raise kids, has made supporting families with developmental differences one of its pillars.
"We're really lucky to live in a major city with so many resources and so much support available," NPN Executive Director Elizabeth Knutson said. "But that can also make it really overwhelming. It's a lot of researching on your own, and that can leave you feeling isolated."
Seven years ago, NPN started hosting a Developmental Differences Resource Fair. It's an annual event that brings together 80 or so Chicago-area service providers – schools, therapists, pediatricians, play groups, swim lessons, summer camps – for kids ages newborn to eighth grade who live with a range of developmental differences: sensory processing disorder, autism, attention deficit hyperactivity disorder, mixed receptive-expressive language disorder, Down syndrome and more.
In addition to information booths and on-site experts, the fair includes workshops that parents can attend. This year's are "When late-night Googling hasn't resolved your concerns: How a developmental pediatrician or a neuropsychologist can help," "Managing all aspects of bullying" and "IEP 101," aimed at demystifying the Individualized Education Program document that families receive when their children require specialized programs at public school.
Perez said her family has been to every fair since 2011.
"The first time we went we were there from when it opened to when it closed," she said. "The amount of information we got in one place was amazing. It's so warm and welcoming, and it gives you such a connection to people who are out there – doctors, therapists, parents going through similar things – that you just don't know about otherwise.
"It's nice," she said, "to be around people who get you."
NPN offers year-round resources for families with developmental differences, Knutson said – webinars, support groups, blog posts (often written by Perez, who is a member of the group).
The fair is meant to be part of an ongoing conversation within the community, and Perez-Horita is determined to get the word out to as many families as possible. The help they've found there for Lia, she said, has been life-changing.
"We're so proud of the wonderful kid she is," Perez-Horita said. "We're her biggest advocates, and we will fight tooth and nail for that kid to do what she wants to do in life."
I'm grateful they're not fighting alone.