Lesley Bickel shares her experience as a parent
of a child with special needs.

Do you want to know a secret? Thirteen years ago, I wasn’t thinking about disabilities. I had just found out I was pregnant with twins, and my husband and I were so excited to start the family we had been planning. But those plans quickly changed six months later. During a routine doctor’s appointment, we learned that our daughter Annabelle had passed away and our daughter Charlotte was in distress and needed help immediately. At 29 weeks and three days pregnant, I was rushed to get an emergency cesarean section. The girls were born four hours later, and our focus turned to Charlotte as she started a long journey in the neonatal intensive care unit. When she was less than two weeks old, we were told that the stress she endured after Annabelle passed before she was born had caused some brain damage. By 10 months old, she was diagnosed with Cerebral Palsy. Cerebral Palsy is a non-progressing brain injury that happens in childhood and affects muscle movement and cognition. At the time of her prognosis, we didn’t know if she would grow up to develop like a neurotypical child or not. 

By the time Charlotte was 2 years old, we knew that she was significantly affected and the life we planned would need adjustments. We learned that accommodations were going to be a regular part of our life. Charlotte requires total assistance with all daily tasks. She gets all nutrition and liquids through a feeding tube, she does not sit or walk without maximum assistance, and she is non-verbal and needs someone to advocate and speak for her. Now that she is 12, and almost as tall as me, we think about accessibility more than ever.   

When Charlotte was first diagnosed, very little changed for our family. She was already working with the best therapists around at the Special Learning Center. She had a great team of doctors in Kansas City, and she still fit in with most of her peers and their developmental progress. Once that developmental gap started to widen, we knew that we needed to make her world more accessible for her to thrive and be an active participant in the community. 

At first, most of our attention went to the physical barriers that our family faced — parking limitations; lack of sidewalks; and, of course, the dreaded hills in Jefferson City! While Charlotte was still young and small, we could easily ignore some of those hurdles. We lifted her chair over curbs, carried her around in a toddler carrier, and lifted her in and out of park playground equipment. But the faster she grew, the faster we realized that we were going to have to advocate for ease of access so she could participate in certain activities.

Recognizing the importance of inclusivity in public spaces, I got in touch with JC Parks to advocate for increased accessibility in various community parks and amenities. Through collaborative efforts, JC Parks has taken an active role in making these spaces more inclusive for individuals of all abilities. Their leadership team has also been more proactive in noticing potential challenges and solutions for accessibility. It’s a great day when everyone can play! 

In addition to my advocacy efforts in public spaces, I have also taken strides to create inclusive spaces within our church community. Understanding the importance of spiritual engagement and belonging, I spearheaded a disability ministry with another family aimed at ensuring that individuals with disabilities can fully participate in church activities. This ministry provides support and resources to enable individuals with disabilities to attend age-appropriate classes and worship services and allows their families and support systems to do the same. Through our disability ministry, we are fostering an environment of acceptance and support where everyone feels valued and included. 

When Charlotte was diagnosed with Cerebral Palsy, I had immediate thoughts of how things would change for her, our family, and the expectations of what our life would be. Now that we have lived this life for over 12 years, my perspective has shifted to an outward focus. I not only work hard for her to have the most opportunities possible, I also work hard for her friends and their families. I want her to be able to have as many experiences as her neurotypical peers and for her to have meaningful relationships with the people around her. I also want her friends to see her as a whole person and for other children with disabilities to have opportunities to contribute to their schools, churches, friend groups, and sports teams.   

In my opinion, one of the best ways that Jefferson City can become more inclusive is to take a look around and notice who doesn’t have a seat at the table. If you aren’t regularly hearing from people with disabilities, then you are leaving out nearly 26% of the population. When physical and intellectual barriers are addressed from the beginning, the world becomes much more accessible for everyone. While I may not be able to move the hills of Jefferson City for my daughter, I’ll never stop trying to lessen the obstacles ahead of her.