By Jennifer Dean
When my husband, Barry, and I were told 20 years ago that our daughter, Katherine, would have cerebral palsy, we didn’t really understand what that meant. We didn’t know what that would look like, or what to do next. So we started reading, and we learned that it can be different for different people.
Then, we met a little girl named Debra, and our outlook changed.
Katherine still weighed less than two pounds. We hadn’t even held her yet because she was so fragile. Debra came to visit the nurses in the NICU on Halloween. She was six. She vocalized, but she couldn’t talk. She knew a little bit of sign language; she signed to ask for a drink. She was using a walker her father had made with PVC pipes.
And she was absolutely delightful.
She wrapped Barry around her finger — I don’t know how long they played peek-a-boo. We realized that while we might be scared of cerebral palsy, this little girl wasn’t scary at all. We realized that we could still have fun with our daughter someday. Katherine would laugh and have fun, and we could too. She gave us a vision of the future we could embrace.
I can now admit that I really struggled when Katherine’s therapists recommended a power wheelchair for her when she was five. Now that Katherine is older, I can recognize that she has developmental deficits because she didn’t “toddle.” In other words, she was unable to experience moving through space. I understand from a physical and developmental standpoint why it would’ve been so great for her to have a mobility device, one that was under her control, earlier.
At the same time, I remember the devastation I felt when we started talking about power mobility. Especially after spending so many therapy sessions — sometimes five a week — counting steps. Those steps were beneficial, critical even for her development. Katherine still uses a gait trainer and stander to stay as fit and strong as possible. However, I thought they meant that we were on a path to walking independently, and the wheelchair recommendation did not fit my vision of Katherine’s future.
In retrospect, another big part of my struggle was that I didn’t know anyone else who used a power wheelchair. I might’ve seen one here or there, especially when we were at specialist appointments at a children’s hospital, but it was very rare.
Today, Barry and I are strong advocates for mobility devices. But we didn’t get there right away.
Once we eventually got Katherine’s power wheelchair, we grappled with the lack of safety features. The constant vigilance to make sure she was not going to fall off a curb or run over someone’s toes, was exhausting.
The danger of tipping and falling out of a power wheelchair is common — and can be fatal. Statistics show that 87 percent of wheelchair users reported at least one tip or fall in the past three years. And wheelchair accidents were the cause of more than 175,000 ER visits in 2003 — 30,000 of them significant enough for admission into the hospital.
Protection is my husband Barry’s love language. He was so driven to protect Katherine that he and his brother developed LUCI, smart technology for power wheelchairs, designed to give riders a safer and more inclusive experience. It attaches to a power wheelchair and uses cloud and sensor-fusion technologies to detect obstacles, prevent drop offs and alert caregivers with important health information. This gives us greater peace of mind that Katherine can move about the world more freely.
I’d like to challenge those of us who use mobility devices to proudly get out in the community when you feel safe – especially if you’re vaccinated. I’ve listed seven thoughts on how to do it and why it’s so important.
- Think about mobility holistically. Accept that if you are using a power wheelchair you are going to need a ramp van or access to accessible public transportation. We hesitated for a long time before we bought a ramp van. Katherine’s power chair lived in our garage for more than a year because we weren’t comfortable with her driving it yet. Then it lived at school for another year where she became quite comfortable and confident driving. Finally, we transitioned to a ramp van and put a ramp at the front of our house so that she could bring it inside.
- Self-generated mobility is not always faster. Accept that life with a mobility device may run at a slower pace. It will take longer to get in and out of a vehicle. It will take longer to get dressed and ready to go anywhere. It is worth it. We need you out in the world. We need you to be seen in the community, so the next generation of kids (and families) who need wheelchairs don’t feel so alone.
- Recruit allies. Find restaurants and places to go that work with you. I agree that we should all get to go and see and try new places and things all the time, but don’t most of us find a few favorite restaurants that we tend to go to more often? Make friends with the staff. Recruit them as allies. Katherine happens to be very social anyway, but the fact that she introduces herself and talks to waiters and store clerks (even though they can’t always make out her words) has become an advantage. Now when we go to one of our favorite spots, they work with us. They’ll have a table set up before I can get her out of the car, and these little things make life just a little bit easier.
- Accept help. Similarly, let family and friends help. Recruit them as teammates. Even though Katherine can be hard to understand when you first meet her, it doesn’t take long to make out her words if you’re willing to pay attention. These special people will also accept the fact that some places might be tricky to get to, but they might also figure out ways to help. Notice the people who make the effort. Appreciate them. They will be your allies and will help open up the world for your family. We have been able to go on family beach trips with our friends and visit their homes because they are willing to brainstorm with us and help us find a way, even when it isn’t easy.
- Get comfortable being vulnerable. Admit to your partner or friends that sometimes it is scary or difficult to maneuver certain public places, but try to keep that attitude away from your wheelchair using child. Or if you’re reading this and you are a wheelchair rider, I encourage you to try.
- Dress up. Celebrate the person IN the chair. Katherine really enjoys getting dressed up. We try to find clothes that fit well and feel good. Find a haircut you can manage. Looking good gives her such confidence. We have found that fun hairbows and shoes can be wonderful conversation starters. When Katherine was using a manual chair, we got some cute “hub caps” covered in daisies. Giving people an easy way to start an interaction helps everyone.
- Be open to opening YOUR mind. As Adam Grant says in his book Think Again, “When we choose not to engage with people because of their stereotypes or prejudice, we give up on opening their minds.” Let’s go ahead and open some minds. We never know who we’re going to impact. It could be someone who will be motivated to become a therapist. It could be someone whose family will be affected by disability in the future. It could be another young couple whose family will end up looking a little like your family. You could be showing them that their future isn’t so scary after all.
For more encouragement for special needs parents like me, please check out the blogs of a few of my friends, Carol Schrader and Mary Susan McConnell. They are incredible resources for those of us navigating the murky waters of raising a special needs child.
Jennifer Dean is a mother of five based in Nashville.