Constant Barrier

Most don’t understand that communication isn’t just being able to speak. I never knew of the word non verbal till my son.

I grew up around those who could verbally speak or spoke using their hands for sign language. But I never thought of it as non verbal.

When I heard those words come out of my son’s doctor’s mouth, I felt my heart sink. My thoughts immediately went to how will I communicate with my son.

I started learning about alternative forms of communication. Sign language, PECS (picture exchange communication system), and AAC (augmentative and alternative communication) device. I quickly learned that what worked for one child may not work for another.

We started our journey with sign language. We worked on asking for “more” and “all done”. But after many months, I finally learned to speak up and say this isn’t working, I requested to try PECS.

The process seemed like once again we were getting no where communicating with our son. For the longest time it was requesting music or bubbles. I was getting discouraged once again.

This continued for months until we started home ABA therapy. They ordered him his own PECS book and we immediately dove in to work on his communication.

Before I knew it we were going from phase 1 to phase 2. Sharing videos with family and friends of how well Graham was doing. This continued until we hit phase 4 of PECS.

He then proceeded to echo us saying a few words. So our ABA shifted their focus for communication to verbal. We worked so hard on those few words he would repeat.

But by doing this I started to see all the communication we had acquired slowly slipping away.

I advocated that we needed to continue working with PECS. I didn’t care it wasn’t verbal. My biggest concern was losing all the communication we had gained.

But my fear was happening. He no longer wanted to use his PECS book. It caused more frustration leading to behavior issues.

During this time our son had managed to master navigating my phone to Spotify. Not only finding it but searching for music he liked. So ABA therapy suggested we look into transitioning to an AAC device.

Getting an AAC device is not a quick process. I spoke with our Speech therapist so we could start the process. But during this time we lost our speech therapist and our replacement was out due to medical issues, so we had a “temp” therapist. This only delayed the process even longer.

I was desperate and couldn’t wait any longer. I found an organization that offered loaner devices. So I applied and we were able to get one. Six weeks with a loaner device. Then what? It takes usually three to six months to get a device approved through Medicaid. Luckily the company that did our son’s evaluation offers a loaner program where most of the time the child has the loaner until they receive their own device.

So here we are starting from scratch again with communication. With all these changes all it did was confuse Graham. The confusion once again causing frustration.

While he had gained vocalization through echoing us and his YouTube videos, his communication was continuing to disappear. He didn’t know which route to take to let us know what he wanted.

Just because he could vocally say words he didn’t understand how to use those words to communicate.

He would say “I want bubbles”, but that could mean he wanted a drink or his tv changed.

My heart hurts. It’s been two years of therapy. Two years of trying to gain communication with my son. Trying to be patient as he learns these alternative forms of communication.

I thought these were stepping stones to reach verbal communication, but that doesn’t always happen. The hope is always there but the one thing I long for more than anything is a constant form of communication with my son.

To know what he’s hungry for.
To know what hurts when he doesn’t feel good.
To know if he wants to go out.
To keep him from becoming frustrated because he can’t communicate.

All I want is to understand my son.