76: Beacons of Hope

76: Beacons of Hope

From Chicken Soup for the Soul: Raising Kids on the Spectrum

Beacons of Hope

Anything I’ve ever done that ultimately was worthwhile . . . initially scared me to death.

~Betty Bender

It all began so unexpectedly with a trip to Barnegat, New Jersey, where we were visiting friends who suggested a trip to the local lighthouse. Why our son, Ben, was so attracted to “Old Barney” is still a mystery. He made a beeline for the door and flew up the stairs with my husband on his heels. Our older son, Alex — who was extremely afraid of heights — refused to make the climb. I was more than happy to sit this adventure out.

I should have known my persistent little boy was not going to let me off so easily. Having flown down the stairs as quickly as he had raced up, Ben announced he was ready to go again. My stomach churned with each vibration of the metal staircase under my feet as I raced to keep pace. What propelled me up those stairs was fear. My adrenaline-addled brain manufactured images of Ben flying over the railing at the top. Autism is not for the weak-hearted.

I caught my breath as we passed through the door together. The wind was whipping ferociously as I paused to deal with my jelly legs, still shaky from the exertion of the climb. With my back pressed to the wall, I eased my way to the far side of the observation deck. When both the air and the shaking stilled, I took in the view and shared what he saw.

Magic.

His beaming smile was pure joy as his eyes met mine briefly before focusing again on the horizon. For a moment, we were connected by the intensity of his experience, his elation. It was hard to remain afraid of something that captivated him so totally. These are the moments I live for. As elusive as they can be, these connections are possible in the most unexpected of moments.

The following summer, we visited the old Cape Henry Lighthouse in Virginia Beach. We decided to take an early morning climb before the day’s heat became too oppressive. When we arrived, we were the only visitors there and I recognized an opportunity to try the climb with Alex too. If he got angry and had a tantrum over the suggestion that he try the climb, we had the privacy to work through it with him. So many of Alex’s fears at that time in his life were not based on real factors as much as they were about sticking to routines and not taking risks. After many years of tag-team parenting, Joe and I were beginning to realize that we needed to do more things together as a family. I suggested to Alex that maybe he could try.

“I AM NOT GOING UP!” The screaming was blood-curdling and he dropped to the ground and kicked for several minutes.

I waited for the storm to pass. He became quiet and stood back up, so I continued: “There are times we do things for Alex, and there are times we do things for Ben. Ben always goes to the aquariums with you and tries the things you like. Now is a time when we do something for Ben. This is what families do; they take turns.”

Alex dropped back to the ground and yelled some more. “It sure is hot,” I continued, as I sat down on the floor near him, deciding that I had reached a point of no return. We had long ago decided that tantrums like this would not deter a request; this would only reinforce his tantrums as a means to avoid an unpleasant task, so I decided to sweeten the deal for trying. “As soon as we’re done climbing up, we’ll go back to Grandma’s and go in the pool.”

I had his attention now. “Do you want the pool?” I asked.

“YES!” he said.

“Well, let’s climb up and get it over with, okay? First we climb, then we swim.”

“YOU ARE THE WORST MOTHER EVER!” he screamed.

“Alex, if you really, really hate this you will never have to climb up another lighthouse again. I promise. You’ll never know if you don’t try.”

“Alright, alright! But then we are swimming!” He stood up, approached the stairs and took a step.

“Good job, Alex, I’m right behind you!”

The 191 steps to the top were in some respects the hardest I have ever taken. I second-guessed myself, wondering if I had pushed too hard. The verbal assault continued the entire way up, and I couldn’t help but notice that my boy had a knack for constructing beautiful sentences when he was mad, a stark contrast to years earlier when he was losing words at an alarming rate.

As Alex stepped onto the deck of the lens chamber from the opening in the floor at the top, I heard him draw a breath in sharply. I prepared myself for the worst.

“Wow,” Alex admitted. “It’s great up here!”

Magic.

When we reached the bottom and made our way outside, I posed the boys in front of the lighthouse and snapped a picture of them, both smiling, arms wrapped around each other in a moment of tactile tolerance.

“Alex, I am going to put this where you can see it at home, because I always want you to remember how awesome you are for overcoming your fear! There is nothing you can’t do as long as you try!”

His eyes darted to mine before slipping away; his voice caught as he tried to hold back his tears. Before I knew it, I was receiving a very rare hug.

“Thank you for making me do that, Mom. Thanks for making me go to the top.”

•••

Six years later, we have climbed more than twenty structures across seven states, including a weeklong trek to the Outer Banks to climb the Cape Hatteras Lighthouse, which is the tallest in America. Alex and Ben handled the changes in routine and unfamiliar surroundings on that trip better than we had ever hoped, no doubt because of the role the lighthouses played.

Many of our successes are wholly dependent upon how we choose to view the challenges autism presents. What if, along the way, we had decided that Ben’s lighthouses were truly a negative “perseveration” that we somehow needed to quell or otherwise control because the intensity was out of whack with what might be considered “normal”?

Instead, by joining Ben in his interest, we grew together as a family. By pulling Alex out of his comfort zone and into his brother’s, we have given him a powerful memory to sustain him in the frightening moments when he has to try something new. In these beautiful, enduring structures, climbing with other enthusiasts, people who meet Alex and Ben don’t see two boys with autism. They just see two boys who share their love of lighthouses. They are a helpful, hopeful symbol to me, linked to both of my sons’ continuing triumphs over autism in so many ways.

~Christine Bakter

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