Halloween has always been my favorite holiday. As someone who works in fashion and loves the industry, there is nothing better than having an excuse to show your creativity and take on a character for the day. Halloween became even more special to me when I had children. Halloween staples—trick-or-treating, dressing up and eating buckets of candy—allow my family to bond and create memories together. But for many parents who have children with disabilities, myself included, a day of running around the neighborhood, navigating front steps to reach the candy and getting dressed in costumes that are inaccessible has presented challenges and anxieties I never anticipated.
My son Oliver was born with Rigid Spine Syndrome, a rare form of muscular dystrophy that affects his mobility and motor skills. He started walking when he was about two years old, and to this day, it is a major struggle for him. When he was still little and learning, Oliver had to wear a helmet for protection, as he would often fall over. During Halloween, we would think of clever ways to incorporate the helmet into his costume. Of course, his helmet wasn't a costume at all—rather, a reminder that Oliver's experience would always be different.
As he continued into elementary school, Oliver became anxious about Halloween. His classmates would bring in their costumes to change at the end of the day before the school's Halloween parade. Oliver has difficulty dressing himself most days, so changing into a Halloween costume by himself was out of the question. So we would pick Oliver up from school to get dressed at home before heading back to school for the parade.
Putting on a store-bought Halloween costume is difficult for anyone—they are often confusing and designed with difficult closures and openings. It is that much more challenging if you have low muscle tone, a limb difference or a seated body. Over the years, we figured out ways to use basic accessories to create a costume—pairing sweatbands with a simple basketball jersey or matching a messenger bag with day-to-day clothing so he could be Diego from Dora the Explorer.
The most anticipated part about Halloween for most kids is trick-or-treating, but this continues to pose many challenges for him. Walking tires him and he has a hard time keeping up, so it's impossible for him to go to door to door and get candy, especially as the night goes on and his bag gets heavier. Every year, Oliver's brother and sister come back to the house and count their candy and Oliver puts on a brave face even though he clearly was not able to collect the same amount. The otherwise joyous experience of trading and categorizing candy is often a tangible reminder of his disability.
Oliver is now 13 years old and at the age where he doesn't want to trick-or-treat with his family. We've made a conscious effort to instill independence and treat all of our children the same, but for Oliver, trick-or-treating without us is nerve-racking. He is really fortunate to have friends who will wait for him when running in between houses, hold his candy, or go up to houses with steps that are difficult for him to navigate to ask for extra candy to share with Oliver. Regardless of this support and kindness from his friends, the experience is still exhausting and embarrassing for him. Last year, I received a dreaded phone call 10 minutes after I dropped him off to trick-or-treat with his friends—the first time he was going on his own. He fell because it was dark outside, and was so embarrassed and upset that he hid behind a tree away from friends. Through his tears, he asked me to pick him up and told me he wanted Halloween to be over. As his mom, it was a heartbreaking moment that made me question my decision to let him go alone.
Parents, caregivers and members of the differently abled community know this Halloween experience all too well. I still love the holiday and see it as an exciting time of year. But as the founder of the Runway of Dreams Foundation, I am advocating for a world where my son and people of all abilities can shop adaptive Halloween costumes and experience all that this gory, haunting and spooky holiday has to offer.
This year, we strategically decided to have a Halloween party in place of trick-or-treating. Oliver's friends will come to our house after trick-or-treating and we can bring some of the joy back to the holiday. Despite all of the obstacles and unique challenges we face with Oliver's disability, I'm optimistic about the future. Oliver's friends represent the next generation of leaders who will go through the world with understanding and empathy for people with disabilities.
Mindy Scheier is the founder and president of the , a nonprofit that works to broaden the reach of adaptive clothing and promote people with disabilities in fashion through inclusion, empowerment and opportunity.