What Autism awareness means to me
World Autism Awareness Day came and went Friday, and I did nothing to acknowledge it this year.
It had been my custom on April 2nd the last few years to write a Facebook post about my son, Nolan, and what it means to have a child who has Autism and is nonverbal. The posts always included a picture. The one I took two years ago of Nolan wearing an Autism Awareness t-shirt turned out really well because he was pretty cooperative. That wasn’t the case three years ago when it took some pleading, and perhaps a wrestling move or two that the WWE has banned, for Cindy and me to get Nolan to pose for a family photo. And 2020? I managed to snap a quick father and son picture somewhere in between a meltdown and a diarrhea episode while taking a break from COVID-forced homeschooling. It was very fitting for a very crappy year.
I wanted to take a different approach this year and challenge myself to go beyond writing a paragraph or two and showing off my son on social media, handsome as he may be. I scrapped another topic I’d intended to address and built today’s offering around this question:
What does Autism awareness and acceptance mean to me?
I’ve seen over the last few days that parents of children with Autism would have vastly different answers if asked that question. One woman vehemently stated on a site that focuses on families whose kids are severely affected by Autism that she will never, ever accept what has happened to her nonverbal son, who exhibits self-injurious behaviors, who hasn’t been able to leave home in some time, and who needs the assistance of three people to even leave home safely. Another parent said change is needed – for expanded services, for more respite, for greater understanding. A gentleman in one of the online Autism fathers’ groups I’m a member of said anything that spreads awareness is a good thing.
For me, it means I’m well aware that Nolan’s challenges will be lifelong. It also means I’ve long since accepted the role of being his voice and his advocate. A sometimes frustrated, anxious and exhausted voice and advocate, but a voice and an advocate who will do whatever it takes to help his son.
Whatever it takes. Out of all the things I remember about the spring and summer of 2008, those either were the first words or among the first words out of my mouth as Cindy and I faced the team of specialists that confirmed Nolan’s diagnosis that July. They could have told me I had five days to sail the Mississippi River on a raft made of plywood using a tree branch as an oar and I would have answered the same way. My knowledge of Autism then wouldn’t have filled a Bazooka Joe comic. It didn’t matter. Nolan needs to start school when he turns 3? All right. In-home therapy services would be beneficial? Welcome, therapists – mi casa es su casa. If there was a way to make the world around Nolan a little easier, Cindy and I would do it.
And we would help the people in his world try to understand him a little better. Either one or both of us went to Nolan’s elementary school from preschool through fifth grade and gave our version of Autism 101 for his neurotypical classmates. We always gave them the opportunity to ask questions when we were finished. Sometimes the questions were very good (“Will Nolan always have Autism?”). Sometimes they just wanted to know who his favorite cartoon character was (“He really doesn’t sit still long enough to watch television.”). But I’d like to think that even if they couldn’t begin to understand everything about Nolan, at least a few of them saw him as just another kid. One, who I found out toward the end of his time in first grade, had shaken his head from side to side while wagging his tongue in the cafeteria, then did it again when all the kids sitting at his table during lunch started laughing.
The fears I had about Nolan as he transitioned from middle school to high school last fall really haven’t come to fruition. There have been a few hiccups, but overall he’s thrived. His teachers and paraprofessionals have taken the time to get to know him and really enjoy working with him, and he’s giving sports a try, including wiffleball, which starts Tuesday. Still, there have been instances when Nolan’s teacher has texted me to let me know he’s had a rough morning or has been out of character. I typically respond by telling her to let me know if there is any way I can help, which translates to, “No, really – let me know how I can help! I can help – honest! I’m coming to school! I’ll be there in five minutes – no, four minutes! Let me in when I bang on the door! I can fix this!”
That feeling of wanting to protect my son will never go away, even as he transitions into adulthood and likely needs to eventually live in another setting when Cindy and I reach the point when we can no longer care for him. I can see myself handing each person who will be working with Nolan a 100-page memo describing who he is and how to best care for him. Don’t want to stick to the script? Don’t let my thin build fool you. My mom, all 5 feet and 100 pounds of her, put the fear of God into the nursing home employees who cared for my dad. She wasn’t afraid of the ones who towered over her and weighed twice as much as she did. I’m not afraid of you.
The parents and caregivers of special needs children are proud of their sons and daughters and simply want the world to see them for who they are. Any exposure and attention directed toward Autism – every aspect of it – is helpful this month. The thing is, the attention vanishes when the calendar flips to May and the media focus on another cause, but the challenges remain.
One of the reasons Cindy and I started this blog nearly 1½ years ago is to spread Autism awareness year-round. Sharing our family’s story has been extremely helpful to me, and to Cindy. I would encourage you to talk to someone about your kids and what makes them special. Talk to your kids’ teachers if you think there is a way that they can better serve them. Let people know how Autism is affecting your family.
There is always so much more to the picture than what most people see. And hopefully there will be more understanding and acceptance the more people are able to talk about Autism and the effect it has on their lives.