By: Suzanne Sorenson, Colton’s Mom

Being a parent of a child with Smith Magenis Syndrome (SMS) is a roller coaster. Being a parent, in general, can feel the same, but as a special needs parent, the typical traditional rights of passage and everyday milestones can look different and FEEL very different.

Colton was diagnosed with SMS at the age of 4. A long list of unmet milestones, questions, concerns, and overall gut feelings led us to keep fighting the good fight for answers. The diagnosis was an emotional shock and because such little research was available, it left us relying on faith and love to tackle this journey. As a family, we chose to acknowledge the diagnosis but not let it define him or us.

In an attempt to catch up on milestones, Colton started ECI (early childhood intervention) at the age of 18 months old. On his 3rd birthday, he aged out of ECI and started public school. From 3 years old to 5th grade, Colton attended 3 different elementary schools, leaving his mark on so many students and staff along the way. Not all positive of course, but definitely his mark. Middle school has been the hardest journey thus far. Between hormone changes, medicine balance, and the overall middle school life, it was a very difficult time in our home. Colton was in and out of school, spent time in the hospital, and was in a dark self-harming phase for a long time. It was a true test of resilience for the family. Colton’s middle school teachers, support team, and principal are true heroes. Their compassion, support, understanding, and patience will never be forgotten.

Colton was a senior in high school last year – Class of 2022! He grew so much in the last 4 years of high school. Each year he matured and developed in so many different ways. EVERYONE in high school knew Colton. He touched so many lives in his 14 years of school. He had a fan group wherever he went. The memories and relationships of his peers vary. Most positive, some not, but regardless impactful in some way. I love hearing their memories and stories. Sometimes I cringe at their honesty, but regardless, I am grateful for the vision of his journey through their eyes.

I imagine that senior year for parents of typical children may look a bit different. Colton is my oldest and has a sister 2 years younger; therefore, senior year was unchartered territory. I have friends that have older children and have seen them plan for college, independent living, and their children growing into adults living a traditional life. For us, I know Colton will be my forever child. We embarked on the year hoping for Colton to have as many positive memories as the typical peers his age. Colton was excited to be a senior. He has talked of not much of anything else since school started.

Tanner is Colton’s 15-year-old sister. There are not enough words to describe the strength needed to be a special needs sibling. Finding the balance to be an advocate, voice, and defender of your older brother but yet be your own individual is not the easiest task. Tanner has demonstrated such strength, compassion, and fearlessness in her role as the BIG LITTLE SISTER. Over the years, her role has evolved and presented itself in many different ways. For Colton’s senior year, Tanner joined the mission of making the memories she hopes for her brother.

Homecoming is one of the most memorable events in high school. Knowing that it was Colton’s last homecoming, Tanner, posted a social media post encouraging her friends, classmates, and peers to vote for her brother for Homecoming King nominee. The post spread like wildfire. Everyone already knew Colton, but not everyone knew Colton was her brother… it was a whirlwind of sharing and advocating across the school. Before we knew it, Colton was nominated for Homecoming King along with 5 of his fellow seniors. The week after the nomination was a week of preparing, community events, tux renting, and balancing the excitement with the real conversations of, “This is an honor”… you may not win. “We are excited for all your classmates”… you may not win. “We are excited to be included”… you may not win. It was a very magical week, but also a week of anxiety. Trying to prepare your special needs son for NOT being crowned, but also encouraging him to embrace the possibility that he just might. Two of Tanner’s soccer teammates and friends asked if they could be Colton’s dates to Homecoming. The TEXAS MUM and GARTER madness began! We decided to add first dates and homecoming proposals to the memories.

Finally, the big day was here! Two dates, one for each arm, very large mums and garter, a very nice rented suit, and no lack of confidence to be had, Colton was ready for the game and half-time homecoming court presentation. Once we arrived through the gates of the football stadium, Colton was ambushed with well wishes and students wanting to take pictures with the homecoming king nominee. Everyone was wishing encouraging words for him and even fellow nominee’s parents were encouraging Colton, letting him know that he had THEIR vote.

Once on the field for the ceremony, Colton was so confident. He was engaging with his peers and calm as ever. My husband and I were a bit edgy… would he win? How would he react if he did not win? What was our plan? Things moved quite quickly through the event and before we knew it we were introduced to the largest stadium presence for our school. I decided to be like Colton, and just take it all in. It would be okay no matter what! Right before they were to name the Homecoming King, Colton expressed he was so excited. That he “could not wait!” I told him… you may not win, but we will be happy for whoever does. He confidently informed me, “I got this 100 percent, mom!” Colton was voted to be the Homecoming King for his high school by his fellow peers in front of the largest homecoming crowd in our school history. He was so excited and honored. I will never forget the tangible excitement. The stadium crowd was celebrating my son! He was celebrating! We could not be more proud of him! All the while his sister was screaming in the stands… “That is my brother!!!”

Even though the roller coaster of parenting might look and feel different for special needs children, it is still THEIR ride and oh what a ride it is! Our hopes for Colton’s senior year exceeded our expectations. Even after graduation, Colton continues to leave his mark by living by faith and love every step of the way.

“Even though the roller coaster of parenting might look and feel different for special needs children, it is still THEIR ride and oh what a ride it is!”

-Susan Sorenson

Do you have a story about SMS that you want to share with the PRISMS community? Remember, you can share your SMS story with us anytime by filling out our Share Your Story form!