By:  Kimberly Caulkins

Every year since 1961 the city of La Crosse, Wisconsin holds a traditional German Oktoberfest. Born in Munich in the 19th century, Oktoberfest first made its way to La Crosse in 1961. What started as a simple community event has turned into decades of tradition and good, old-fashioned fun. Every year members of the community are nominated to serve for a year as part of the Oktoberfest Royal family.

Our son, Liam, 12, was nominated by his paraprofessional educator, Jane (who worked with him all through elementary school) as the Special Fester for Oktoberfest 2022.  We have lived in La Crosse for 20 years and of course, we knew of Oktoberfest, but I had never really attended anything other than the Torchlight Parade. We didn’t even know when he was selected for Special Fester that he had Smith-Magenis syndrome as we were still waiting on genetic test results.  He was just diagnosed this year.

When we got the results and visited the PRISMS website the first time and we read the common features section, it was like someone had met him and written a checklist of everything that described Liam! Finally, someone else knew what our lives were like. There were others like us who hadn’t slept through the night in 12 years.  There were people who could relate to our everyday joys and struggles. 

When we accepted the role of Special Fester for Liam, we had absolutely no idea what we had said yes to. We were in for a steep learning curve. Once I started learning more about all the events, this was way more than four days and a couple of parades I thought I had signed on for.  Panic and fear set in. Can he do this? Is this too much for him? Liam is well known for his Dr. Jekyll & Mr. Hyde personality.

We decided to see how it went.  The Special Fester Ball is the opening event to kick off the Oktoberfest season. He was amazing! Right from the start he blew our minds by greeting people, giving high fives, and handing out his buttons!  It was sensory overload for me. I can’t imagine how it felt for him and he just powered right through it with minimal meltdowns!

The first day of Oktoberfest events begins with the Special Fester Carnival. This must be one of my favorite events. Every school in the area is invited to bring special needs children of all ages to enjoy the midway carnival free for the afternoon.

That same day our favorite parade of Oktoberfest takes place, the Torchlight! We love all the beautiful lights and decorations glowing against the night sky. This has always been Liam’s favorite part of Oktoberfest since he was little, he loved to watch the brightly colored floats, and even when he was having difficulty hearing he would touch the ground and feel the vibrations of the bands as they passed by. Liam has been blessed in his life to have a very special friend, Ben whose calming presence and gentle soul helped us navigate many of the overwhelming public appearances we so worried about in the beginning. Liam dealt with those huge crowds like a rockstar! I couldn’t believe it! When I say huge crowds, I mean thousands of people singing and yelling! He surprised us at every turn! The following week we visited elementary schools, nursing homes, city municipal buildings, and local businesses.

We take part in many area festivals, parades, and events throughout the year promoting tourism to the La Crosse area, volunteering at various organizations in our community, and spreading “Gemütlichkeit” German for a feeling of good cheer.

The best part of this has been meeting people and educating people.  Children have so many questions about his behaviors, and I love to engage them. If I can teach them to accept and understand the differences and help them see his behaviors in a less intimidating way, it’s worth every moment of my time. As parents, the best part has been watching his personal growth. He has surprised us time and again with what he is capable of. Liam loves meeting new people thanks to this experience. We can’t go anywhere without greeting everyone we see. “Hello. What’s your name? My Name is Liam Caulkins. How is your day?” It is adorable. You can’t imagine how long it takes me to get through Wal-Mart now!

I hope his success out in the community gives someone else the courage to step outside their comfort zone and push their SMS child’s boundaries a bit. Liam’s favorite part of the whole experience continues to be the people. We never wanted him to connect his lederhosen with bad feelings of stress or fear. We want him to see them and bounce with anticipation and joy! So from the first time he wore them, we have said “It’s time to go see our friends”.  His smile can light up a room and he is ready to go the minute the hanger leaves the rack. In true SMS fashion, he has no patience while waiting in the wings for parades and events to start, but everyone is patient with him and they have spent enough time with Liam to know as soon as the parade starts, his smile lights up and the high-fives start flying and he’s off at lightning speed to greet the crowd! 

Watching his personal growth and the advancement of his social skills has been worth every bit of stress, and every sleepless night. Watching the joy in your child’s eyes when they connect with new people is amazing. Life as an SMS parent can be isolating for you and your child. Leaving your home feels like offering your child up to public scrutiny, everyone has an opinion and it’s surprising how many people think they have the right to comment on their behavior or judge your parenting. My hope is that this article reaches someone who needs to hear that there is a place in this world for their little one and they can do so much more than even we can imagine sometimes.  

On a side note, just in case anyone was thinking he did so well that he couldn’t possibly have SMS, Smith-Magenis syndrome doesn’t care that the whole city came out to see you in a parade if it’s time to sleep we sleep!