The challenges of parenting a 5-year-old with infantile-onset Pompe disease by Keara Engle | August 15, 2023
I’m sure most people in the U.S. have heard of the Americans with Disabilities Act (ADA), a civil rights law that protects people with disabilities from discrimination in all areas of life. It became law in 1990, and its sole purpose is to ensure that people with disabilities are given the same rights and opportunities as everyone else.
While this law is fantastic and has allowed our country to become more accessible, we still have a long way to go. My 5-year-old son, Cayden, has disabilities, and in recent years, I’ve faced situations that have opened my eyes to how hard this world is to maneuver for someone who can’t walk.
Cayden has infantile-onset Pompe disease, a genetic disease that he will have for his entire life. Cayden has very low muscle tone, which prevents him from walking and moving on his own. He needs assistance for almost everything. While we’ve learned to live and adapt inside our home, it’s tricky when we’re out in public.
Something that has gotten increasingly harder over the years is changing Cayden’s diaper in public. The majority of public restrooms in the U.S. have changing tables only for babies and infants. To make matters worse, they’re typically only located in women’s restrooms.
The problem is that Cayden is the size of an average 5-year-old, so he’s way too big to fit on baby-sized changing tables. Although I understand that most children his age are using the toilet, that’s not the case for him. We’ve been working on potty training him for two years, but he doesn’t have full control of his bladder and bowels, requiring him to use diapers.
Changing him in public is next to impossible. He’s outgrowing his stroller, and regardless, it’s not easy to change him in that anyway. The next best option is a blanket on the floor. But frankly, who wants to lie on the dirty floor of a public bathroom, whether there’s a blanket or not? Most stalls have a gap at the bottom, so changing him there would be visible to others.
I’ve changed his diaper in my car before, but that’s not always the easiest option, either, because we have to go all the way to the car just to do it.
The only sensible solution I’ve seen are adult-sized changing tables. But I’ve only seen them in the children’s hospital where Cayden sees some of his specialists. These changing tables are located in family restrooms that are conveniently located on each floor.
In addition to this issue, there are many other areas where I believe our country could do better with accessibility, such as at public beaches. I previously wrote about how sandy beaches pose a risk for wheelchair users. Most wheelchairs can’t make it through the sand. Some wheelchairs specifically made to go through the sand are available to rent, but there are barriers, such as cost and availability. It doesn’t seem fair.
And let’s not forget about playgrounds. I haven’t seen much playground equipment that is accessible for children with disabilities to play on. The playgrounds that do have accessible equipment are few and far between.
These are just a few of the many scenarios that pose a challenge for people with disabilities. There’s nothing like having to plan your day around whether or not you can go somewhere. All details – such as whether stairs or steps are involved – must be carefully considered.
I’m grateful for the progress that has been made since the ADA was passed over 30 years ago, but I’m eager to see how the world can become even more accessible in the years to come.
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About the Author
Keara Engle Keara Engle is located in south-central Pennsylvania and has lived there her whole life. Keara is a single mother and has two little boys, Cayden and Kyree. Her oldest, Cayden, was born in February 2018 and was diagnosed with infantile-onset Pompe disease shortly after. He was the first baby in Pennsylvania diagnosed via newborn screening. She hopes that her column, “Powering Through Pompe,” will bring comfort to those that are also dealing with Pompe disease. She remembers how scary it was when her son was first diagnosed and wants to help guide others through their journey.