One of the most frustrating things I have experienced as a mom to my beautiful, Faith, has been the many years of isolation dealing with CVI. Thank goodness for her speech therapist, who has been our rock over the years. As a parent, mostly on my own in this CVI journey, I took a deep dive into DIY projects and trying everything. And in many ways, I think it has allowed a certain freedom to explore things in unique ways for Faith. If her story can help encourage anyone, that would be the best reward for all the struggles we have gone through. We all need ALL the encouragement we can get!
Now that Faith is well into her teenage years, I’ve learned a lot about raising a child with a different normal. My daughter began with very little use of her vision, but she has made so much progress. Faith is a stroke survivor, has Cerebral Palsy (CP), Periventricular leukomalacia (PVL), Cortical/Cerebral Visual Impairment (CVI), and epilepsy. She is quite profound with most of these diagnoses. But this didn’t keep me from encouraging her to move, actively engage in her world, and try anything.
I want to talk about Orientation and Mobility (O&M) from the parent perspective, especially about kids who have multiple disabilities. I’m going to talk about teaching O&M skills while bike riding. Faith loves to ride her bike. For many years this was an unattainable dream. She has been riding since she was ten and is now almost 17. Navigation can be challenging, especially on something like a bike, where accidents can easily happen.
How I support Faith’s ability to orient and navigate as she rides her bike:
- Accessible spaces. I pick places based on the accessibility. What are the boundaries and borders of the area where Faith will ride? What is the visual and auditory complexity like—too much or reduced enough to support visual access? How is the lighting?
- Verbal descriptions. Now that Faith is older and in her own way can communicate with me if she can see something, I always describe where we are. And I tend to take her to the same places repeatedly so she can memorize them. As I tell her, I also ask her what she sees. For example, “Here is our van, see it’s the white one. Look there and see the blue lines on the road. Show me the fence on the right across from the van. Can you find the yellow speed bump?”
- Test run. We use landmarks on her riding route to support her orientation and to turn the bike in a particular direction. We always do a test ride around the area. As she rides, I talk to her through the targets she can use to navigate, usually large, somewhat stationary, or colorful things in the environment. In the video below, Faith uses the yellow speed bump, big mulch pile, and our van to help navigate. I also often walk in front of her about 15 feet—close enough that she can find me and follow me, but not so close that she can't see what's coming up.
- Cueing right and left. Over the years, Faith has learned left from right and understands if I say you need to turn one way or another. I do a lot of talking and warning about upcoming landmarks or obstacles. I also do a lot of shoulder tapping to show her if she needs to turn slightly one way or another by tapping her left or right shoulder.
- Step back. After a couple of test runs, I try to step back and let Faith practice navigating independently. Because in the end, all my help is useless if she can't learn how to do it using her own skills and vision.
I have found that this mixture of preparation, verbal queuing, and transfer of independence has been incredibly successful for Faith. Despite her significant diagnoses and her CVI, she is a remarkable bicyclist and an excellent power wheelchair user. She rarely bumps into anything. Faith has learned to use her peripheral vision, and even though it appears as if she is not looking, she is. At the last minute, she will make a surprise turn and avoid whatever was ahead of her—perfectly! Faith also has an excellent memory, and she uses it uniquely to help her navigate.
Faith even trained her service dog, Folly, to ride with her in the rear basket on the bike. Folly weighs 60 pounds! I told Faith that she would have to train Folly herself. Faith spent weeks working to get Folly used to riding on the bike. They ride like maniacs now, often riding over three miles.
I want to encourage families of children with CVI and complex needs to be brave. To try things that seem difficult for your child. Because our kids always surprise us.
Faith's desire for independence has spurred me to help her reach for these challenges and give her the freedom to explore (once we have prepped), which have all been a huge boon to her emotional health.
Video note: If you watch closely, you will see some of the nuances of how Faith navigates and how I prompt her. This kid can ride forever!
Candace Hudson is the mother of 17-year old, Faith. Candace and Faith live in South Carolina.
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