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Parenting an Adult Child with Disabilities: Reaching for Independence


In 2012, the editor of Charlotte Parent asked me to write a short story about Ben for the magazine's April issue. "A Goal of Independence" was my first published piece and the beginning of my career as a professional writer. 

When I wrote the story, Ben was 8-years-old. At the time, I recognized how important it was for us to assist Ben in becoming independent. As a mom, it's hard to let go and easy to just do the task for them. I shared an example in the Charlotte Parent story: Ben's brothers scolded me for feeding Ben, rather than letting him feed himself 

Ben is almost 19-years-old. He’s lived 90 miles away from us for six months in an alternate family living situation. Although we visited him two to three times a month, I didn't notice how much he matured until we brought him home in mid-March. 

He's calmer, more alert and attentive. We've been able to decrease behavior and sleep medications significantly. We'd tried this in 2020 with disastrous results.

His teachers notice how he pays attention in class, something he didn’t do in previous years.

Ben listens to what we say, reacting appropriately. He poses for photos and enjoys seeing the results on the screen.

The changes in Ben have caused me to reflect on the timelines and boundaries we associate with independence.

Here are a few thoughts on independence:

1. It's not one-size-fits-all.

For kids, neuro-typical or not, independence doesn't always come the day after high school graduation, on a specific birthday or when you earn your driver's license. It may come in small bursts or it might be a slow roll. Every person is different.

2. Gaining independence is an ongoing skill. 

At every age, we're working on independence. It may come in different forms: Going on vacation alone, starting a new career or dating for the first time after 30 years. Isn't developing independence a life goal? It keeps our minds and bodies active and engaged.

3. Reintroduce experiences and skill-building activities.

Just because something didn't work at one point, doesn't mean it might not work later. Your child couldn't handle sleepaway camp at 9, but maybe at 12, it's time to try it again. 

I'm considering adding speech-language pathology (speech therapy) to Ben's schedule again. During his early teens, his short attention span affected his ability to use a communication device. It might be time to try it again with a therapist who specializes in assistive technology and sign language.

4. Notice independence in all its forms.

When Ben wakes in the middle of the night, it's often because he's thirsty. Since he's been home, I've placed a covered plastic cup filled with water in between his pillow and headboard. Most nights I show it to him and help him drink from it. 

One morning, I saw him drinking the water. He looked like a hamster drinking from a water bottle, as he strained his neck and head to position himself in front of the straw. 

Some mornings, the cup is on the ground empty – no water anywhere, and other times, there's a puddle of water on the floor. Only a recording device could tell us the real story. 

"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges.


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