As Kelly Weaver walks through the halls of the Alexander Leigh Center for Autism in Crystal Lake (alexanderleighcenterforautism.com), she beams with pride.
"We started with one student in my basement back in 2007," says Weaver, the center's executive director. "Now we have 27 students ages 3 to 15. In August we started our first freshman high school program, which was very exciting."
Weaver's passion for providing autistic students with comprehensive care is deeply personal. Her only child, Gillian, born in 1998, "descended into//?// autism" at 15 months, she said.
"I'd gone through seven years of infertility and tried to get pregnant — then we have this beautiful, fabulous baby, and she was going to be different than we anticipated," Weaver recalls. "There wasn't a lot of information on autism at that time, so I Googled it. There was nothing but horrible things online. I sort of threw myself across the bed and threw up a couple of times. At that time autism rates were 1 in 5,000. Today the CDC rate is 1 in 88. We have a pandemic going on."
As Weaver tried to learn more about having a child with autism, tragedy struck her family in several ways: She discovered she had ovarian cancer, and her husband, Kevin, was diagnosed with a brain tumor.
"He passed away eight months after his diagnosis, when Gillian was 4," she says. "It was a very challenging part of my life."
After the death of her husband, Weaver realized the public school system wasn't meeting her daughter's needs, so she focused all of her energy on creating a center for children with autism.
"My friend Dorie (Hoevel) — we both have children with autism — so we sat down one night and tried to map out a plan of where our kids were going to go for treatment," she says. "We thought, 'If we were in charge, what would it look like?' We started with a sheet of paper. Her (child's name) is Zachary Alexander and mine is Gillian Leigh, which is how we got the name of our school — Alexander Leigh. We named it after our kids, so we constantly remember every time we walk in the door what we are working for."
The following is an edited version of our conversation.
Q: How's Gillian doing now?
A: She's 14 and in the freshman class here at the center. She's talking. She can read. She does all kinds of things in the community. She lost her "severe" diagnosis about a year ago, which was a big "to do." In the public school Gillian didn't speak and didn't read, so to have her read a story or say, "Hi, Mom!" when I walk through the door or "Love you, Mom," those kinds of things are pretty spectacular. And the blessings just keep coming. This has certainly been challenging, but it's never been hard. I go out on the floor and watch the kids and see them do something that's really cool, and I'm quickly reminded of why I'm doing this.
Q: What makes your autism center so unique?
A: Our school runs differently because I'm a parent with a child with autism. Not a lot of schools have parents who have developed (the curriculum). … This model allows us to evoke more change. It's more personal. It's more intense, but parents can come and grow. We are a therapeutic day school, so we offer several types of therapies depending on the child's needs. We're also a nonprofit, so we have fundraisers and accept donations so we can continue to grow. The ultimate goal is functional independence and to be able to integrate these children back into public schools. The earlier we get the students, the better that chance is. … Early intervention is really important for development of all kids, not just kids with autism. We're learning the most up until 8 or 9 years of age.
Q: What advice would you give to a parent who may be dealing with similar challenges?
A: You have to trust your gut. I knew in my gut that there was something not quite right about an occupational therapist (who) was assigned to my daughter's case who had never met a child with autism, let alone worked with them. … So I started searching for therapists who were at the top of their game in treating children with autism. And if I were to be really honest with myself, I knew something wasn't quite right with Gillian when she was a year old. … As a parent, usually what holds us back is our fear. We're afraid to learn the truth.
There is so much focus on perfection in this day and age. … You can either feel your child is slowing you down and has changed what you thought your life was going to look like, or you can choose to be an autistic family. Once that shift is made, you really begin to see the families thrive.
Q: As a society, are we making enough strides treating kids with autism?
A: Yes and no. My daughter was in the first wave of autism, so certainly the kids who are diagnosed now have more resources available. The scary component is going forward: Services completely drop off, so that's why we're working so hard to get the high school classes and a transitional plan for adult living. Because if you think about it, in 30 years we're going to have a population where one out of 88 adults will be autistic. That means at any given time in Wal-Mart there's going to be one to two adults with autism in there. Many folks with autism are not able to live independently as of yet, and there's nothing planned for that, so it's very frightening actually.
Q: What keeps you going, given the challenges you've faced?
A: I really can say that I know that I'm living my purpose. ... Something good always comes out of every situation. It's always up to us to be patient and trust the process to find out what that is.
We asked Kelly Weaver how she keeps facing the challenges life throws her way.
"Swimming in my own lane," she says. "Not looking back and not looking to the side. And really taking my responsibilities seriously."
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