Skip to main content

More Than a Feeling

On a day when there was no school, I took the kids to the YMCA to play basketball while I worked out. Cameron, our newest community worker and also a gift from God, was with us. It was her first time experiencing the YMCA with Ben and his celebrity status. It was also her first time seeing him throw a tantrum.

When it came time to leave, Ben decided he did not want to leave. He successfully threw himself on the floor and refused to be lifted into his walker. At almost 65 lbs, he can decline to move his body, and we have to oblige.

I was frustrated with him. The other kids were waiting outside, and we needed to be somewhere else soon. I told Ben we were leaving and I watched hidden, behind a column as he pulled himself into a chair and sat very nicely. He did not care one iota that his family had left.

At this point my frustration subsided and I realized he wanted something and was determined to get it. I took out the NOVA Chat and quickly plugged in a few feelings buttons. When approached with the communication device with the choices, Ben chose angry.

I knew what he would choose, but he did it so swiftly that I was blown away.  After nine years, he was finally able to tell us what he was feeling. Anger. We didn't have to wonder or interpret. Sure, he was exhibiting all the signs of frustration and anger, but he was able to say it for himself. He was able to choose. Isn't that what we all strive for, to say what we are feeling, even if we display the feeling in an outward and non-verbal manner?

Once he was able to say this, I explained to Ben the plan - we were leaving, but would be able to come back to the Y another day. I told him that I understood his anger, but needed his help in getting to the car.

We made it to the car with Ben using his walker to get there.

Since then, Ben has been able to tell us when he is sick, happy, hot, cold, and just right. Recently while at the movies he wanted to leave before the end and expressed it through the NOVA Chat. Cameron was able to explain that we had to stay to the end because we were with other people. She gave him the choice to stay in the theater or wait in the lobby. He chose the theater and remained silent for the remainder of the movie.

It is more than a feeling, it is power.


Popular posts from this blog

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru