We had the chance to go on a day-trip last week to meet friends at the beach. It would be a lot of work to pull it off, but I reveled in the thought of being spontaneous. I thrive by the ocean. Ronan usually does, too, so when we got the opportunity to go to it again this summer, I rearranged what we could, cancelled what couldn’t be rearranged and then got the heck out of town for the day.
We’ve dropped everything before, but that’s usually because something unfortunate has happened – a rash of seizures, an epic meltdown, a sensory overload. The kids are used to hearing me make plans and then immediately break those plans, but they’ve never taken out their disappointment of missing out on something on their brother. Even though it’s usually because of him that plans have changed, they understand that life with a sibling with autism doesn’t always go as they expect it to. They get that, and they know that sometimes they have to just go with the flow. I prayed that Ronan would get that this time – sometimes plans change. I also prayed that our unexpected road trip would go smoothly.
It did. Until the siblings changed their minds.
Right before we got to our destination, Ronan’s brother and sisters decided they’d rather go to a pool instead of the beach. Going to the pool had been an option when we learned of the opportunity to get away, but I had my heart set on the ocean. I wanted so badly to go there. Ronan said he did also when I asked him if he wanted to go swimming at the beach like we got to earlier this summer. He signed, “Yes swim water fish.”
The breeze, the sand, the waves – I wanted…no, needed it! I wanted to see it, to feel it, and to be surrounded by that salty air again. That’s what I told Ronan he would see and smell and feel, too. The beach. That’s what we talked about on the ride. That’s what kept him focused and also what kept him distracted after I realized I’d left one of his movies and the iPad on the couch after we’d gotten on the road. He’d done great so far to pass the time, but here we were close to where I told him we’d be going. Do I turn right toward the beach that I’d described in detail, or do I reroute us and turn left toward the pool he hadn’t been to in years?
The kids promised me Ronan would be able to handle the change. They also promised me that they’d help if, later on, he started to struggle with things. I don’t normally let the kids talk me out of something, but they made valid points about going to the community pool for our little adventure. Our friends were agreeable with the new plan, so off to a pool we went.
Ronan took to the water like a champ. It helped that we’d been there before and that he knew the expectations – swim for a little bit, take a break, swim for a little bit more. He was in heaven. In fact, we all were.
During adult swim, the kids got out of the pool. Ronan stayed close to the water’s edge and sat. A group of other kids, ranging in age from 7-10 years of age, sat next to us. One by one, three of the boys got up and left and headed toward the snack bar. The one kid who remained, the youngest one, closed his eyes and laid down on the pool deck next to the puddle Ronan was splashing. Content in the warm water, I said hi to the boy and then turned to Ronan, “Watch out for this little guy – he’s resting.” Ronan took note of the kid and splashed in a different direction. Unsure if Ronan would keep his happy splashing in the opposite direction, I said the youngster, “Hey, so he might splash you. If he does, it’s not to be mean. He just really likes the water.” The boy raised his head, looked at me, looked over at Ronan quite a bit longer than I expected him to, and then said, “It’s okay if he does,” and then closed his eyes again. Ronan got closer but respected the boy’s space. Fifteen minutes later when the lifeguard blew the whistle indicating that adult swim was over, the boy said bye to us and scampered off to find his friends.
What a sweet kid, I thought.
After about an hour of watching the other pool-goers go down one of the water slides that this pool has, Ronan inched closer to where they tumbled into the water. One after the other, down they came. Most of them laughed and squealed with delight before they plunged into the water. In the shallow end, it’s a smaller slide meant for the youngest kids, but Ronan decided he wanted to go down it also. I was stunned. As a toddler, Ronan used to climb everything. These days, and for many years now, he prefers his feet to be firmly planted on the ground. Asking him if he was sure he wanted to go down, and explaining that he’d have to climb a short ladder to get to the slide, Ronan assured me with continuous ‘Yes’ signs that he was ready. His expression showed that he wasn’t just ready, he was giddy about the whole thing. Wanting to share this excitement, I called to the siblings and asked them to join us. When they heard that Ronan wanted to slide you’d have thought someone announced it was Christmas morning. They swam over as fast as they could toward Ronan. Then, one by one, they got out and offered to help him up.
It took a few attempts to get Ronan up the ladder stairs because fear took over, but that wasn't going to stop his younger sister, Izzy, from helping. Holding his hand, steadying him as he sat at the top, or giving him a gentle push to begin the decent down the long and oh, so fun slide, she was right there next to him. Each of the siblings joined in on the fun over the next 20 minutes, but Izzy stayed with him the longest. Someone else made their way over, too - that little boy, the one who hung out with us during the adult swim break. He swam over at some point and had the biggest smile on his face. Giving Ronan loads of encouragement, he watched as Izzy held Ronan's hand and as she slowed herself to match the incredibly slow down-the-slide pace her brother kept. Ronan. was. terrified. but kept signing 'Again slide again slide!' so enthusiastically each time he bravely went down. So they kept going. Whichever sibling wasn’t on the slide with Ronan stayed in the water with me. And that little kid who said he didn’t mind if Ronan splashed him? He joined in on the excitement. Since it was taking a while for Ronan to go down unassisted, several times he hollered out loudly, "Come on, bro! You can do it!!"
It was a sight to behold!
At the end of the afternoon when it was time to pack up, the kids said, “See, Mom. Ronan liked it. I think he had the best time today.” I agreed and thanked them for the idea and for all of their help. I asked if they’d seen that little boy who made his way over to Ronan and they were curious who he was. “He was just some random kid who knew exactly what to do – to encourage and believe in Ronan,” I told them. They smiled. Later, after pig piling us all back into the car for the ride home, we reflected on the day. We were all in agreement that it was an overwhelmingly awesome and spontaneously fun day.
The next day, even though we’d had such a good time the day before, emotions changed. Izzy, who’d been such a superstar with Ronan, quietly burst into tears. It was a spontaneous bursting into tears and filled with overwhelming emotions.
Those emotions hit her hard.
After settling back into our regular routine, I caught up on the few things that I’d had to rearrange the day before. With the kids happily vegging out on the couch watching a movie, I made plans to head into town to catch up on errands. Hoping to go alone to have some quiet me time, I changed my mind at the last minute. Motioning for Izzy to come over, I said, “I’m running to the store. Want to come with me?” Izzy smiled and quickly got her shoes on. I said that it wouldn’t be an awesomely fun outing, but it would be nice to have some company. She agreed. An hour later, as we were wrapping up the errands I said we had just one more place to go. We could use the drive-thru so it should be a fast errand. Pleased that we had some mommy-daughter time, Izzy said I could take my time.
It actually took longer than usual to get what I needed at the drive-thru window. Curious about why it was taking so long, I explained to Izzy about some of the problems we’d had in the past with getting this Ronan’s recent medication order filled. It’s taken multiple phone calls between the doctor, the nurse, the insurance company, and the pharmacist to get this one right. Thinking back, Izzy said she remembered me talking about that. She’s heard those conversations. She’s seen my frustration. She’s heard me crying after hearing bad news getting worse as we continued to fight to find the right medication, the right dose, and the right timing to keep seizures at bay. Izzy’s seen all of that and has witnessed what happens when those ‘life saving’ meds didn’t work like we’d been told they should. That day, I decided to share a little bit more with her – including how much this medication costs. Seeing that number, which was more that she could ever imagine a medication to cost, caused her to burst into tears. Crying, she said, "I wish I could switch so that I had what Ronan has so he can be done with everything."
Oh, my sweet thing. Me, too. If we could take any and all of it away, in a heartbeat we would. We absolutely would.
We revel in the good days. We really do. For our family, the day before at the pool was not just a good day—it was one of the best days ever. The next day, when we were home and back to our reality, when Izzy learned more of what we’ve had to do behind the scenes for her brother, it was just too much for her to bear. I couldn’t hug her while we were sitting in the car, but when we got home, she got a huge hug from me. Holding me tightly, she thanked me for taking her with me. Before she went back to relax with the others, I told her, “Just like you want to take all of the bad things away for Ronan, if I could take away what you’ve gone through as his sister, I would do that, too.” I continued and told her how proud I was for all the hard work she does around the house and when we get to do super fun things like we’d done the day before. I couldn’t do what I needed to without her help and without the compassion she has for Ronan.
Izzy smiled, wiped her eyes, and whispered thank you.
Because we haven’t been able to take away all of the frustrations, worries, or fears, and because we can’t go back in time and change what happened to him, we stay right next to Ronan. We guide him at his pace. We encourage him, and we encourage others, like that random kid at the pool, to join us in our efforts. And when Ronan stumbles, as he has done in the past, we remain always ready to catch him when he falls.
Cathy Jameson is a Contributing Editor for Age of Autism.