To hear words…

We are coming up on an appointment I have been very excited about. It is with the Augmentative Communication Program at our children’s hospital. This program helps develop ways for children with disabilities that affect their language skills to better communicate, using the skills they do have. There are all sorts of interesting tools out there for assistive communication that range from the very low tech to the very high tech.

This appointment, it seems, is coming up just at the right time. Communication with children with disabilities seems to be a theme in my world right now as I have several friends who are struggling with their child’s inability to express herself. One of these parents shared a link to a She Knows Parenting article about non-verbal children. You can find it here.

There was something in this article that just struck me. The author is recounting an attempt to communicate with her non-verbal son, they cross signals and he gets mad. She writes, “My child may not speak, but by God he is expressive.”

Bingo.

You see, this is exactly what is so difficult about having a child who cannot tell you what she needs, but who clearly is trying to tell you: She is trying to express herself constantly…and you just don’t get it.

Now, I know that Ezzy is still young, at 26 months, for a ton of expressive language. But when I spend time with other children her age and younger, I become aware of just how much they express themselves, through words, signs, body language, reaching, pointing.

Ezzy really doesn’t have clear words that we know to correspond to things that she wants, except for “Maman”…which she does say with intention. We suspect that she is “saying” words with intention when we read books, but it is unclear. Ezzy’s motor skills are such that she has never taken to signing. She doesn’t really reach toward things she wants. She doesn’t point. She doesn’t hold up her arms to be picked up.

But this doesn’t mean that she doesn’t want things…or that she doesn’t have things to communicate. In fact, Ezzy is very communicative, if you know what to look for. From a very young age Ezzy expressed happiness in her eyes and her dancy little feet. Now that she is more creative and assertive with sounds, she communicates her mood very well, whether through chipper “ah ah ahs,” self-satisfied growls, or needy “uh uh uhs.” And while she doesn’t do typical signs or body language, she uses her body very expressively. Her feet still play the most major role in her expression–to the point that we have a potty training system developed entirely around her legs and feet.

But these aren’t things she can use to communicate with people who aren’t with her every single day for hours.

She is also good with pictures and has shown some skills at using them to select activities. I made this picture board out of fabric to hang off of things so she can reach it from the floor.

We used the same pictures as are on her iPad communication program. She responds well the the pictures, but lacks the coordination to select one item on the iPad screen. She usually gets so excited she  somehow manages to exit the program or open a menu or something. I can tell it will be a good system for her once her concentration and motor skills permit it.

It is my hope that the Augmentative Communication folks will be able to help. I am not holding my breath, because I am so often disappointed by these kinds of programs…which can seem only to tell you want common sense stuff you already know. But here’s hoping that they can help give Esmé more of a voice…and help other people hear her words.