Thanks to some generous souls who are helping us with Ronan this year, I have had the pleasure of volunteering time at my kids’ school. I’ve also been able to volunteer some time afterschool with some activities my kids are in, too. It’s taken a long time for that to happen, but I’m grateful for every minute I get to do this.
Twice now, I’ve been able to help drive some of the soccer team to their away games. For the first outing I drove my son, Willem, and 3 of his teammates. Each of the boys knew of Ronan and had briefly met him before, but it would be the first time they’d be in the car with Ronan. It would also be the first time they spent any length of time with him beyond sharing a quick hello.
As the boys loaded their bags in the trunk, I took Willem aside and said quietly, “Why don’t you sit next to Ronan just in case he…”
Willem quickly said, “Don’t worry, Mom,” and added, “I was going to.”
One teammate, who also happens to also be one of Willem’s favorite friends as well as a classmate, overheard us and said, “Why can’t I sit next to Ronan?” Before I could answer him, he got in the car and buckled up right next to Ronan’s seat.
“Well, he might…” I started, “…he might reach for your hand. And sometimes it hurts when he does that. And if I’m driving, I can’t help get his hand loose from yours…” I explained.
The classmate looked at me, looked at Ronan and then said, “It’ll be okay.” Looking at Ronan again, he tried to engage him, “Hey, Ronan! Remember me?”
With a smile, Willem’s classmate looked back and me and said, “Okay. I’m ready.”
Somewhat nervous as we had an almost 30-minute ride to the field, when I saw the boy’s smile I let go of my anxiety. His positivity was a good sign and exactly what I needed.
Curious about Ronan – but already very familiar with his “stuff”, I knew the other boys in the car may have questions about him. Nothing is simple about Ronan – his headphones, his bi-colored glasses, the fact that he’s non-verbal – but I didn’t want any of it to complicate the drive or make the kids uncomfortable. So, as everyone got settled, I let them know that Ronan may make some different noises and that he may laugh louder than other kids usually do. I told them it’s because he really liked the movie I had playing for him. Right on cue, Ronan squealed a happy squeal. I apologized for the noise with a sheepish smile. The boys smiled politely back at me. One of them said, “It’s okay, Mrs. Jameson. We know.”
Pulling out of the parking lot, I looked in the rearview mirror at my passengers and got their attention. Since Ronan was a little more “chatty” and a lot louder than usual, I said to the kids, “If you had any questions, don’t be afraid to ask me or Willem anything.” Since I didn’t know two of the boys very well, I gently added, “And whatever you say, aloud or under your breath, even with his headphones on Ronan can hear everything.” They politely nodded and went back to talking to each other.
Halfway to our destination, Ronan started signing that he wanted a different movie. His noises got louder as he tried to wait patiently for the new movie to start. I looked at the two boys I didn’t know very well yet and tried to apologize for the loudness. One boy offered, “It’s okay. I know all about this. Izzy told me a little bit about Ronan, and my friend’s brother has autism. He makes a lot of noises, too, because he can’t talk either.”
In one short moment, I was both crushed and glad. Crushed that another child’s voice wasn’t working and glad to not to have to go into too much detail as to why Ronan made the noises that he did. Those noises would only get louder.
The movie Ronan wanted was a Baby Einstein movie, a favorite of his that makes him squeal with even greater glee than he had already been squealing. With less than five minutes away to go to get to the soccer field, I left the volume down and asked the boys to get ready to listen for directions as soon as we arrived in the parking lot.
Ronan and I took our time to walk to where the other spectators were. We lingered there for about 10 minutes since once he was done eating snacks I’d brought for him, Ronan showed interest in the playground behind where the soccer moms and dads were cheering. As he slowly ventured toward the climbing equipment, he got a pep in his step.
Ronan is not a big fan of playgrounds. It’s work – hard work – to motor plan stairs, bridges, balance beams, monkey bars and even swings. He struggled, as he usually does, but what a joy it was to see Ronan approach each apparatus of the playground with gusto as well as maintain his energy for as long as he did.
With only 10 or so minutes remaining in the second half of the game, Ronan grew tired of all the climbing he’d done and lifted his arms up, his sign for me to carry him piggyback on my back. By the time he was on my back and near the sidelines, the boys’ soccer game was over.
The boys didn’t win the game, but they were cheerful getting back in the car. Willem’s enthusiastic classmate ran ahead of us and yelled, “I call sitting next to Ronan!” and buckled himself in so fast that I couldn’t refuse his request.
While getting Ronan into his adaptive car seat, I smiled and said, “Well, I guess you get another turn next to Ronan, huh?”
With the biggest smile, he said, “Yep!”
I don’t know whose smile was bigger, mine or his.
We’ve had struggles with getting Ronan “out there in the real world”. His behaviors can be negative and prevent an outing as soon as one begins. But if people don’t know how difficult that part of life is for us, they won’t ever know that Ronan needs a great amount of assistance. But when people meet Ronan and see that he does need lots of assistance, if it’s they who can offer help, which can be as simple as sitting next to Ronan and be a friend like Willem’s classmate so quickly was, they get to see how wonderful life with Ronan can be. Since I sometimes get caught up in the negative moments and only see what Ronan can’t do, I was thrilled that Willem’s friend only saw the wonderful things. I was beyond thrilled that he wholeheartedly wanted to be a part of it, too.
The boys were clearly tired after their game but were talkative when we got going. I popped in a sign language video for Ronan, and a few minutes later, I could see that the boys were actively watching, too. Knowing that Ronan would be hungry and may request a snack soon, I quietly asked Willem to let me know if Ronan signed anything.
Ronan did sign something, but he wasn’t being “heard” with the other chatter so he attempted to vocalize his request. One of the kids that I didn’t know well yet overheard me saying to Willem, “Don’t forget to prompt Ronan to say it after you sign it.” Getting a good vocal output, Willem said, “Good talking, Ronan.” Stunned, the kid blurted out, “YOU’RE TEACHING HIM TO TALK, TOO?!”
I couldn’t stop smiling. “Yes,” I said, “Ronan used to talk when he was younger. Since we know he had speech, we’re teaching him as much as we can to help him get his words back.”
“WOW!” was all the kid could say.
Truly speechless, I took advantage of the boy’s silence and the fact that I knew he went to the same church that we did. That’s when it was my turn to blurt something out, “We’re praying that he will talk again soon. You can pray with us if you want.”
His eyes still wide, “Cool,” was all the kid could reply.
With Ronan’s medical issues and severe autism requiring much of my time, I don’t always get a chance to hang out in the real world. Shuttling Ronan to his appointments, cancelling well-thought out plans to instead keep seizure watch, fighting for services and for insurance coverage – it all takes time. Add in juggling unpredictable behaviors, and it can also be very time consuming. But when other people are able to step in and take over for me, like the wonderful people we have helping us now, I do get little breaks to go check out what’s happening in the world. I also get to see who my kids are hanging out with, like the boys from the soccer team.
That afternoon that I got to drive those kids, even as short as it was, was so rewarding. I felt renewed, not just in that I got to help other people, but I got to witness simple good deeds. I’ll have more time to offer some of the kids in this group again soon. Next time will be to help with lunch and recess duty. When Willem’s classmate heard that I’d be coming to the school, he said, “Make sure you bring Ronan.” Before I could say that I would, he interrupted me and excitedly said, “I call sitting next to Ronan!” When the lump in my throat disappeared, I whispered, “Thank you. Thank you so very much.”
Cathy Jameson is a Contributing Editor for Age of Autism.