The journey with autism isn’t about striving for perfection, though we often feel like it has to be in order to be successful. In truth, perfection has little to do with progress. Persistence, dedication, love, advocacy, and an endless list of everything in between tell the real story. Keeping our wits about us when things start to unravel is a challenge and a feat all its own. Patience and composure are needed to keep us on track, but there are times when we are at our wits end and invariably, we snap. We lose it. Such was the case for me on one particular occasion: a story both autism and my daughter love to tell.
A year after moving to Madison, surviving crisis after crisis, things were beginning to settle down. Jonathan was well established in his home program, my oldest daughter was happy at her new school, and my youngest was finally avoiding medical mishaps. I was beginning to feel more established in the area and less stressed parenting 3 children.
Then the call came regarding my younger brother and only sibling. To say we are close is an understatement. So when news of his health crisis came, it was quite concerning. At first it did not appear serious, but in the months to come, something was clearly wrong. The holidays were rapidly upon us when the news came that my brother was in serious condition with an unknown heart issue. He was admitted to the Cardiac ICU and the prognosis was not a good one.
Jeff was in Omaha and our plan was for him to fly to St. Louis and the kids and I would drive from Madison on the same day. As luck would have it, Madison was hit with a big snowstorm— my first. Omaha had experienced a similar storm, so Jeff’s flight to St. Louis was canceled and rescheduled for the following day. I had packed the van the night before, complete with snacks and travel bags for the kids, then waited till morning to head out. It was still snowing and blowing as we crawled out of Madison. Once I hit I-39, my top speed was 25mph. With a death grip on the wheel, I continued at a slow and steady pace. Most travelers on the road were cautious, till a rogue car would go speeding by, only to lose control and end up in the ditch. It happened with several cars and a few semi’s. One even jackknifed in front of me, but I was able to maneuver out of harm’s way. To say this was a stressful drive and that my nerves of steel were starting to fray would be an accurate statement.
I have to give my children credit, they were on their best behavior as I know they sensed my tension. With the highway covered in ice and snow, our trip was taking much longer than it would’ve in nicer weather. The travel snacks were running out and the games, books and toys were losing their appeal. Jonathan started to get restless and I knew we needed a break, but finding a place to stop was challenging, as we were on a strip of highway with no exits for food or gas. So we continued, and I promised the kids that we would be stopping soon, while Samantha did her best to entertain her brother. Then we saw the exit— Mendota, and there was a McDonalds!
We took the exit and clearly so did everyone else on the highway— it was packed. By some miracle, I managed to find the last table and high chair. Once I had Cassie in the high chair, I realized how long the line was to place our order. So I gave Samantha the last of the goldfish to share with her brother and told her I was going to get our food. I knew I was running out of time. Jonathan was tired and this setting was sensory overload for him. I was on pins and needles as I waited for my turn and then I heard Jonathan. He was starting to unravel.
“May I take your order?” was thankfully the next thing I heard, so I quickly rattled off the list. Just as I finished, Jonathan began to vocalize even louder. Samantha found me in line, upset because people were beginning to stare. Thankfully, I had the drinks so we went back to the table and I gave Jonathan his drink. It seemed to do the trick, so I used the distraction to rush back and grab our food, which was luckily ready. I probably looked like a crazy lady grabbing it and dashing back to my kids. Just as I thought I was in the clear, disaster struck.
Jonathan picked up his drink by the lid, which came off and spilled all over the table and onto him. That set him off, as his aversion to wet clothing was one of his biggest sensory issues at the time. He began to scream, and I was grabbing anything in sight to dry him off while trying to appease him with french fries.
When he finally began to calm down, I turned my attention to Cassie to assist her. Then, Samantha reached for something and knocked over her drink, prompting another outburst from Jonathan. While helping him calm down again, an employee took pity on me and refilled both their drinks while I apologized for the mess. I thanked her when she returned and calm was returning to the table. Or so I thought.
I turned from Cassie and there sat Samantha, with big tears rolling down her cheeks. I thought she was upset about spilling her drink and when I reassured her that everything was fine, clearly it was not. Through sobs, she said: “Everybody is staring at us”. Sure enough, as I glanced around, we had developed quite an audience. I lost my patience and my composure— and totally lost it. At the top of my voice I blared: “I guess some people don’t know it’s incredibly rude to stare at other people when they are trying to EAT!!!”. Every head in that restaurant snapped back around!
The tears turned to a big smile as Samantha said, “They’re not staring at us now!”. I smiled at her and replied, “No, they’re not.” Given my outburst, I felt pretty confident most would avoid eye contact with us for the remainder of our meal. And they did.
We continued our trip and made it safely to St. Louis. The typical 6 hour drive ended up taking 9 ½ hours. My brother survived his cardiac event and made a full recovery, which made for a very happy new year for us all.
Funny how certain situations or events make an impression on us and others, not necessarily for the reasons we assume. To this day some 20 plus years later, that story of Mom losing it in McDonalds, is a fan favorite with my oldest. One time I asked her why, and her response had little to do with the fact I lost it. To her, it was a show of strength in adversity, standing up and speaking out, undaunted by the reactions or judgements of others. In my own perception of a moment of weakness, she saw something entirely different.
So while we all lose it at one time or another, sometimes the bigger takeaway is finding an unexpected treasure in those moments when we do.