Skip to main content

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.








Labels:

Comments

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

How I Make Being a Mom and Volunteer Work at this Group Home

  In September, Ben celebrated three years living in a group home in Charlotte, North Carolina, with five other men. Ben lives 20 minutes from our house, and we see him several times a week for doctor's appointments, to drop off supplies, for group home events and sometimes because I just miss him. Ben occassionally sleeps over, and he often spends a weekend day hanging out on his favorite couch, watching videos at our house. This Easterseals PORT Health home is Ben's second placement. The first placement through another agency didn't work out, and he left after six months . We were wary of trying a new place, but it's worked out well. My husband, Ryan, and I have developed a partnership with ESPH. Over time, we've built mutual respect and trust with the residents and staff.  Here's what's worked for us: 1. Get involved with the group home. Ben lives with five other men in a six-bedroom house in Charlotte. On move-in day, Steven, one of the residents, made ...
4 comments
Read more

Gadgets & Gizmos - Part 6: Landeez Chair

We spent last week at the beach near Atlantic Beach in North Carolina. At Fort Macon Park , they have a special chair for people like Ben who may need extra help moving in the sand and water. The chair is made by Landeez . We were amazed by this chair. It did travel over the sand and in small amounts of water with ease. We bought an inexpensive strap to go around Ben's waist so he would not fall out.  I thought that Ben could go farther in the water sitting in the chair, but it does eventually float...away if in too deep of water. Ben got tired of sitting in it and wiggled his way under the strap. For the most part, it is a great invention and it made it easier for us to keep Ben safe on the beach. If he had been interested in a long walk on the beach, this would have worked great for him.
1 comment
Read more

Parenting an Adult Child with Disabilities: From Group Home Placement to Discharge

  Last August, we moved Ben into an alternative family living (AFL) placement, about 90 minutes from our home in Charlotte. It was a three-bedroom house and Ben was given the largest bedroom with its own bathroom.  A typical AFL in North Carolina operates like this: a person with disabilities, the client, moves in with another family, couple or an individual. The client lives in the family’s home and the family receives payment in return for housing, feeding and caring for the client.  Ben’s AFL was unusual: A couple with extensive caregiving experience wanted to run a three-bed group home but needed to apply for the license through the state. They were willing to take Ben as the first resident in a house, separate from the one they lived in. The plan, according to the couple, was to get approval for the group home within a couple of months.  We ordered Ben a double bed, headboard, 54-inch television, new sheets, towels and blankets. Friends helped us move him in....
3 comments
Read more