Parents of every stripe have the primary mission of making sure their children grow up with the tools they will need to be successful, useful, and prosperous as adults. We do whatever we can to make sure they have opportunities to learn, grow, and discover from the time they’re born until they are old (and responsible) enough to make their own choices.
I’m the mom of an eleven-year-old boy with autism. I’m not trained in special education or physical therapy or applied behavioral analysis. But, like every other parent, I’ve had to figure out what my guy needs to be successful. It just happens to be much more involved and demanding than what his neurotypical younger brother needs.
We’ve had an autism diagnosis since Chris was six, but we’ve been building a network since he was about two. Knowing that I don’t know everything, I started at Children’s Hospital and the Autism Society of Colorado. I found good information and some resources.
Since then, we’ve added teachers, a tutor, some really good friends, other parents, a dentist, a barber, and some excellent neighbors to the network.
So what does being in a “network” mean? Well, for a family affected by autism, it means a lot.
The neighbors know to keep an eye out for him. He walks or rides his bike to school along with his classmates who are also in the neighborhood. They all know he’s the guy with autism, and some of them have stepped between him and trouble like neighborhood bullies. They’ve helped him start conversations, participate in social events like barbecues and pool parties. They’ve opened their homes to all of us and made us feel welcome.
The healthcare providers help us track milestones. Just like other kids his age, he should be making good choices about food, rest, exercise and media exposure. They provide ideas about how to help Chris learn skills like socializing, relaxation techniques, diet and medication choices, and how not to treat Chris like a science experiment. As a parent trying to do her best, I had a tendency to want to try everything that might help. And sometimes that didn’t help. He’s still an eleven-year-old boy who needs to be able to feel comfortable in his own skin, in his own house. They’ve been able to provide some professional judgment and recommendations, so I don’t feel compelled to throw everything and the kitchen sink at the poor kid at once!
My friends and fellow autie parents have been of tremendous value. The ones with kids older than Chris have already been where we are now. I can ask questions about how to navigate the middle school transition, how to help him through early adolescence, or what to do when he asks about girls. The ones with kids younger than Chris ask me the same questions. And I’m happy to help close the loop. We share information and ideas, and we help keep each other optimistic, engaged, and sane.
A dentist? Yes. A healthy mouth is the doorway to a healthy body, but if a kid won’t let the dentist clean and examine his teeth, you have a problem. Most of what kept Chris out of the chair (or in the chair with teeth tightly clamped shut) was fear. We finally found a dentist who was willing to sit down with him and show him the various tools of the trade that whir and spin and have hoses and hooks and whatnot. He let Chris touch them, feel them while they were on and off, and understand what they were used for. After that, it was no problem, and Chris has had no further incidents in the dentist’s chair. All it took was some patience and a little time.
The barber did basically the same thing with the top of his head. I used to have to wait until Chris fell asleep before I could trim his hair with scissors because he was so afraid he would be cut when the blades disappeared from his field of vision. He wouldn’t go anywhere near the electric clippers. We finally found a barber who did the same thing as the dentist: showed him the equipment, let him touch and feel the scissors and the clippers while they were on and off, and explained that they would only trim hair, not ears or brains. Again, it took some patience and some time, but after explaining it, we were golden from then on.
Teachers and tutors might sound like a no-brainer, but seriously, they are part of the network. They see Chris most of the day, and they have to figure out how to reach him, too. Chris’ dad and I are a part of the special education team at Chris’ school. They are the experts at teaching, time management strategies and classroom management. We are the experts at the kid himself. Working together, we can bring their successful strategies home, and they can bring our successful strategies to school to help provide Chris with a uniform and consistent set of expectations.
Our network continues to grow as Chris grows up and finds his own voice of advocacy in the community. We’ll continue to add financial planners, academic advisors and peer leaders to our network. And we’ll keep working at it because that’s what Chris needs: a community of compassionate, helpful individuals who give Chris time to articulate his needs and feel comfortable in his own skin.
Photo by Mike Babiarz