Rehumanizing Access to Communication

I would like to rehumanize the communication needs of a nonspeaker since semantics seem to be the reason so many nonspeakers cannot access their basic human right to communication in school instead of what the child needs.

To put it into perspective, I am a mom to twin 11-year-old nonspeakers, Caleb and Noah, who have been told by our school district that they do not support Spelling to Communicate (S2C) as their preferred method of communication, even though we use it successfully at home.

It has been said that they have been given sufficient communication access with their AAC devices given by the school district. To clarify the extent of my boys’ AAC use in the school system, Caleb does not use his device appropriately, independently, or consistently AT ALL. In fact, the AAC evaluator has stated in our AAC training that Caleb is not going to be motivated by his device or motivated to use it independently. In fact, she stated that she recommended this AAC device for the teachers to “model language” and “facilitate his communication”. Why would we need a device to model language when the teachers can already do it themselves? He is not cognitively impaired. On the other hand, Noah’s device has brought much relief to him as a part of a multi-modal approach but continues to be limited and does not give him access to the general curriculum in the least restrictive environment.

I challenge you to put yourself into Caleb and Noah’s shoes for a few days.

In this challenge, I suggest you spend the first day without speaking to your loved ones at all. You can only communicate through gestures and nothing else. As a reminder, because of Caleb and Noah’s apraxia and sensory motor differences, their gestures are often unreliable so in this simulation you actually still have an upper hand that Caleb and Noah would not. At least, you will still get a taste of how it feels to not be able to communicate through speech. 

On the next day, you are still unable to use speech, but this time — download an app such as Visuals2Go, and this will be your only method of communication in addition to gestures. Ask your loved ones to talk to you and ask you questions, and you can only respond through the app. Observe every time your loved one assumes something about something you tried to communicate and how that made you feel.

On the last day, you are still unable to use speech, but this time — print out a photo of the 26 letters of the alphabet, and every time you want to communicate something, point to each letter to spell out what you want to convey. Have your loved one write down each word as you spell it to support you. Observe your ability to express yourself and have your needs met.

After you experience the above, come back to the below summary:

I wanted to rehumanize this issue because we are dealing with young CHILDREN. Children who are most fragile in their early development stages. Remember YOUR childhood and things that made you feel hurt, happy, excited, sad, angry, abandoned, alone, loved, accepted, etc.…

How did YOU communicate those feelings to those that you loved?

Did you feel safe? Did you feel nurtured? Did you feel heard?

Now think about it from the lens of Caleb and Noah and ALL the other nonspeakers being denied access to their method of communication, their voice. They are being told that their limited access to communication is sufficient for their education and well-being. Of course, it brought some relief to Noah, who, prior to his device, had NOTHING. The school district is telling him that it is good enough.

The school district is telling Caleb that his limited verbal speech is good enough.

EVEN THOUGH they both can communicate utilizing the 26 letters of the alphabet at home to be educated, nurtured, supported, and heard.

They cannot even receive an education in school because the teachers do not have access to communicate with them.

Imagine the TRAUMA of having the ability to absorb all information around you and not being able to respond, interact, and stand up for yourself. Imagine the trauma of the inaccurate assumptions being made about your behavior and what you try to communicate.

Imagine the trauma of being spoken to as if you don’t understand the difference between a ball and a square because your apraxia and sensory-motor differences inhibit your ability to consistently touch the correct flash card. “Touch the ball,” “No, touch the ball,” “Oh, he doesn’t know the ball yet. We’ll work on that”…

Imagine the trauma of consistently hearing your teachers speak about your progress in front of you but not being able to respond.

Imagine the trauma of wanting so desperately to learn age-appropriate material but not being given access to inclusion in a general education curriculum because you cannot tell anyone how you understand or feel.

I mean, honestly, just IMAGINE. These are CHILDREN…

A PARADIGM SHIFT IS ESSENTIAL TO THE WELL-BEING OF NONSPEAKING INDIVIDUALS.

When new information comes out that challenges our preconceived knowledge and beliefs, we must critically assess and adapt. WE MUST KNOW BETTER and DO BETTER.

It is up to US to do with the information that has been provided what is best for these children who are nonspeakers.

Don’t allow yourself to be a part of the “Bystander Effect”.

Be a part of the change we need for our children and the paradigm shift. 

Alexandra Ponsica is currently an S2C Practitioner in Training. She is a mother to twin boys who are nonspeakers and spellers. Alexandra is very passionate about helping nonspeakers to learn to communicate through spelling, and will start her practice “See Me Speak” in New Jersey shortly.