Ribbons, honesty, and admitting we don't ALWAYS understand everything

Aug 6, 2019

Most of us have been introduced to AAC because we have real life experience with a person who needs communication support.

But even using AAC doesn't always mean every communication is clear and simple.

It can be easy to misunderstand or misinterpret messages when verbal communication doesn't come easily for someone we care about. Sometimes, even the best meaning communication partner doesn't catch the meaning behind the words or actions of a communicator.

These are the times when it is essential for us to admit that we don't know it all and look for support so we can better catch the meaning in the message. These are the times we need to be willing to put aside our pride and work to better understand the needs and feelings of the person who is trying to share his or her world with us.

I'd like to share the story of one such moment.

My teenage daughter and I work with a lovely young lady in our neighborhood who has down syndrome, we'll call her Amy.

A couple times a week, we take Amy on outings. Amy is particularly drawn to my daughter -- they are great friends -- and even though Amy cannot speak and struggles to express herself consistently with AAC, she is pretty good at letting us know what she thinks.

Amy has a wand ribbon that she adores. She loves to flip the ribbons and run them through her hands as we walk around or when she is excited, frustrated, or just needs comfort.


One day, we took Amy to watch my daughter perform with her musical theater group. Amy loves to watch shows like this.

About halfway through the performance, Amy got upset. She was wringing her hands and vocalizing angrily. She also started flipping her wand ribbons in a frenzy.

I wasn't sure what the issue was. Her behavior had changed suddenly so it seemed that something new had happened to cause her angst.

I asked Amy if she wanted to go into the hall for a minute or if she needed a drink. She didn't. I asked about every problem I could think of but I could not figure out what had made her so upset.

Eventually, Amy grabbed the ribbons on her wand and carefully placed them in my hands.


I was confused. This is not something she had done before. I tried flipping the ribbon thinking maybe she wanted me to play with her, but that made her pull the ribbons away from me. She was obviously annoyed, but she settled down a little and we managed to get through the rest of the show.

I felt a little bit disappointed that I had not been able to solve Amy's issue. We know her pretty well and most of the time we understand the things she needs and wants, but this time I couldn't get it.

When we dropped Amy off and her family asked how things had gone I swallowed my pride and told her family that it had been a rough afternoon for her.

I told them about the incident and apologized that Amy did not have a relaxing, entertaining adventure away from home this time.

But that's when I learned something important. Amy's grandpa smiled knowingly as I shared the story and then looked at Amy's wand and ribbons.

"She hates it when her ribbons get knots in them. Her flipping sometimes makes the tips knot up and fray and it really bugs her. I bet she was trying to get you to fix her ribbon."

Wow! Of course, it made perfect sense.

However, if I had decided to just say, "everything was fine, we had a great time," when we dropped Amy off I might never have known about that.

It was a good reminder to me that we can always learn to do better and that it is OK to admit when things don't go perfectly.

Problems happen. Things go wrong. Mistakes get made. It doesn't mean anybody is bad or that anyone messed anything up beyond repair.

Problems are an opportunity to learn, and learning is good for everyone. When we admit we have room to grow, then we get to grow.

I'm glad that Amy is patient with us while we all work to better understand each other.

Next time we'll know better what she needs. Little by little we're becoming a pretty good communciation team.

Melissa DeMoux

Former CoughDrop Director of Marketing and Support -- worked with AAC communicators & teams