Parenting partnership
Jess and Luau’s relationship and parenting styles are as modern as they are traditional. Luau has been PTO president at his daughters’ schools three of the past four years. Jess works full time and has developed close relationships with Brooke’s teachers and therapists through the forum that works best for her — electronic.
“I have some pretty intimate email relationships with just about everyone in Brooke’s world,” Wilson says. “I think overall it’s fair to say that I coordinate more of the overarching, longer term directional stuff and [Luau] handles much more of the day-to-day.”
She’s grateful for the partnership, and understands the role she sometimes fills for parents who are going it alone. “In our world, it’s not always as easy as turning to family or friends when you need help. Sometimes you just need to talk to someone who walks a similar path and gets it.”
Her advice for parents who might not be as engaged as they could be? “It’s time. I know it’s scary. I know it’s hard when life doesn’t meet expectation. But your child needs you. Sit with him. Watch what he’s watching. Take your time. You’ll find a way in.”
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Call for collaboration
Wilson describes her early activism as “with a group away from whom my ideology has since dramatically diverged, but those early engagements with them opened my eyes to not only how much needed to be done, but how much could be done, on so many different levels.”
Today, after years of experiencing the good and challenging aspects of being a part of the autism community, Wilson has a clearer scope of what she wishes would change.
“The division,” she says. “I desperately wish that we could work together far more than we do. So many are so deeply, ideologically entrenched that they simply stop listening to one another. What gets me the most is when parents and other so-called experts exclude autistic people from the conversation simply because their narratives don’t jive with their own.
“While no one can represent the entire community, not even someone on the autism spectrum, I can think of nothing more egregious than silencing someone for whom you are simultaneously claiming to speak.”
Generosity of experience
Challenges aside, “The autistic community in particular [autism community includes parents and other stakeholders while autistic community is made up exclusively of autistic people] is so incredibly warm and welcoming,” Wilson says. “I am ceaselessly amazed by the openness and generosity of autistic adults who strive to educate us in the name of a better world for their younger brethren. Their willingness to share their experiences, even some of the most painful of them, has been invaluable to me as a parent and I am overwhelmingly grateful.”
Transcending diagnoses
Think you’d have trouble relating to Wilson’s world? I did, too, in the beginning. After all, my child has Down syndrome, not autism. But I was wrong.
“I think that the issues we face are, at their core, universal,” Wilson says, explaining why she thinks her writing appeals to people who don’t necessarily have autism in their lives. “Learning our children’s languages, engaging their interests, meeting them where they are, believing in their unlimited potential, celebrating their individuality, respecting their right to self-determination, eschewing conformity for the far better goal of self-actualization,” all ways that Wilson’s path mirrors the path of so many other parents working to give their child with different abilities every opportunity in life.
“This moment, the one we’re in right now, matters,” Wilson says. “And… there’s beauty in it. No matter how hard we may have to look to find it.”
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