By Brigitte Shipman | May 6, 2021. | Autism, Mother Guide, Life Lesson
We all have a voice although we do not all have the capability to speak. I will never forget the morning that I understood the depth of not being heard, literally.
When my son Joseph was very young and freshly diagnosed with autism, his father and I began searching for answers to help our son thrive in a world that seemed like a foreign land to him. We were truly desperate to find any therapy or words of wisdom to help us navigate our son's journey.
We ended up at the Arkansas Autism Society Conference in Little Rock. We lived in a rural small town and our resources were limited to say the least, back in the early 90s. We were fortunate in that we had family support to help us take care of Joseph so that we both could attend.
We were both exhausted due to the constant stress, anxiety, and lack of sleep that most parents experience with small children. Our exhaustion also came from Joseph’s difficulty in going to sleep and his need for constant attention when he was awake. So, getting up at the crack of dawn to start our first day of three at this conference was challenging but we did it. We did it because we were determined to find at least one therapy to help our son.
The conference room seated at least 500 to 1000 people. It seemed huge to me and I was a bit overwhelmed in finding our seats. We were seated somewhere in the middle and were lucky to find seats at the end of the aisle which my then husband preferred. As we got settled in our seats, we heard the MC begin speaking to start the day of events.
We didn’t know what to expect from our first keynote speaker. Once she was introduced, I kept waiting to hear her speak. I sat up straight in my seat to view the speaker to understand why I was not hearing her voice.
I saw a young lady in a wheelchair with an aid to assist her with a device. Within a few seconds, I heard a voice with no words. She was attempting to speak but nothing other than a grunt managed to come out of her.
I looked at Joseph’s father with tears in my eyes and a slap of reality came over both of us. As her aid assisted, her voice came through the device loud and clear. I did not know exactly how this assistive technology worked but I could see her type with help and a robotic voice came through. Now I know it is called Augmentative and alternative communication (AAC).
It appeared that she didn’t have a voice because she was nonverbal. That slap of reality woke me up.
As this young lady shared her story through the AAC, I learned that she was trapped in her body. She taught herself to read while laying on a mat in the institution that her mother decided to place her in, watching Sesame Street.
Her mother believed she could not care for her daughter. She also believed that her daughter did not have the ability to function in our world. Her daughter was mentally challenged. Her daughter was not able to speak or use her body so therefore she was not going to do anything in this world but exist. She shared with us that she forgave her mother for placing her in the institution until her 18th birthday.
Once it was discovered that she in fact was highly intelligent and was educated by her own will, she ended up graduating from college. She was an author and speaker and also loved an occasional margarita. I never saw or heard of this young lady after that day but I often think of her and her powerful message.
What I learned that morning was that this young lady had a voice and was finally being heard. This was a wake-up call for me, and since that day, I pause before I judge the value of each person I encounter.
As we navigate on this journey of autism, I continue to learn. I have been researching, reading, and listening to experts for the past 20 plus years. I have learned the most from autistic individuals. The greatest lesson is that rather than working so hard on getting my son to function in my world, I need to work harder to enter his.
I have had yet another aha from a young lady that I just had a conversation with on the topic of resilience. She is an accomplished author, speaker, and advocate for our autism community.
She taught me through a clever analogy that those who are on the spectrum are speaking German and those who are neurotypical are speaking French. Those of us who are speaking French expect those who are speaking German to only speak French. The lesson is to become more fluent in each other's languages.
We all have a voice! We need to learn how to speak more than one language. By the way, her name is Yenn Purkis. Her interview with me will be going live next week.
I will continue to keep learning and working on how to become more fluent in my son Joseph’s language!
Stay well and safe.
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