“We finally gave ourselves permission to say that Lucas would not go on vacation with us anymore… however, it costs a fortune to NOT bring a child.”
With summer around the corner, NCSA is featuring a series about traveling—or not—with severe autism. This is part 2.
By Jess Ronne
It was December 2006. I was a mom to two sons, four-year-old Caleb and two-year-old Lucas. Lucas had special needs including profound autism, although we were not aware of this and would not become aware until years later. My husband Jason and I lived in Grand Rapids, Michigan, and as the holiday season approached, we made plans to take our small crew to Frankenmuth, Michigan, the Christmas capital of the world. We were slightly apprehensive because Lucas had never been a good sleeper, but we reasoned that we would wear him out shopping and food, and he’d eventually fall asleep. That was the plan at least. Money was tight, but we dipped into our savings and booked a room at the nicest hotel in town along with dinner reservations at the world-famous Zehnder's family-style chicken restaurant.
The big day arrived, and we drove two hours to our destination. While Caleb was content to sit in the back seat and watch a DVD, Lucas was not content, and we stopped numerous times to console him. The previous night we had conducted a practice run with Lucas’s pack-and-play, and although it took him a while to fall asleep, he eventually did. We patted ourselves on the back for a job well done. We figured the additional exhaustion from him not getting a great night's sleep would play in our favor, and hopefully, he would sleep great.
We arrived and immediately headed to Bronners Christmas Wonderland where the boys soaked up all the sights and sounds of the holiday. They sat on Santa’s lap, and I laugh as I remember Caleb's big smile and Lucas staring at the lights ahead, completely oblivious to the big guy in red who tried to get his attention. We ate cookies, watched the train circle overhead, and purchased our souvenirs before heading to the chicken restaurant where we thoroughly stuffed our bellies and walked back to the hotel room around 8:00 p.m.
Jason set up the pack-and-play, I bathed and jammied the boys, we tucked Caleb in for the night and then I laid Lucas down in his bed. We turned off the lights, turned on the fan, and then held our breath hoping Lucas would fall asleep.
“We turned off the lights, turned on the fan, and then held our breath hoping Lucas would fall asleep. He did not. He screamed for the next five hours ”
He did not. He screamed for the next five hours — screamed in spite of every single thing that we did: bouncing, taking him for a drive, changing him, giving him another bottle, laying beside him in our bed. Nothing worked. Nothing would soothe his anxious soul, and that’s when we decided to pack everything up, yes, at 2 am, and head back to Grand Rapids. It was this or face possible eviction from our hotel room due to being a disturbance to the rest of the guests.
We threw it all in the car and drove home. Caleb fell asleep, and well, Lucas did not. We arrived home around 5 am and put Lucas to bed and that’s when he finally slept, for 3 hours.
We were brave again a few years later and took the family on a vacation to Arizona when I was pregnant with our fourth child. This time Jason slept on the floor beside Lucas who was now 5, but it didn’t improve our situation. Lucas still would not sleep which meant that most of us did not sleep for an entire week. Sure, he’d give us short spurts here and there but then wake up screaming again.
A few years later, after more failed attempts, we finally gave ourselves permission to say that Lucas would not go on vacation with us anymore. Instead, we hired a caregiver or found a trusted family member to stay with him which has worked out for the best; however, it costs a fortune to NOT bring a child. Therefore, our vacations have become much simpler. The decision to find a caregiver allows Lucas to stay in his routine, which is what he prefers, and it allows us time to enjoy our other children and actually rest without the boundaries and difficulties that autism often imposes upon a situation.
Lucas is now 17 years old and has an official level three diagnosis of autism that we received a few years ago. Those confusing early days now make much more sense. We’ve also made progress with medication which has enabled him to spend the night at new places and actually sleep! Maybe we’ll be brave again someday and try a vacation with him, but for now, we’re too tired and if we have an opportunity to travel, we will find a caregiver so that we can get the rest we desperately need, and that’s ok.
Jess Ronne is an author, speaker, podcast host, documentary producer at caregiverdoc.com, and caregiver advocate. She is the founder and executive director of The Lucas Project—a non-profit dedicated to providing recognition and respite for special needs families. She and her husband Ryan live in Michigan with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga she can be found at www.jessplusthemess.com or purchase her latest book, Blended with Grit and Grace.
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