“I know you think you understand what you thought I said, but I'm not sure you realize that what you heard is not what I meant.” Robert McCloskey
Have you ever watched a video of a crying baby receiving a hearing aid? When they hear their mother’s voice for the first time, their crying stops. Their eyes open wide. They become calm at first, then smile or even squeal with delight? Then, of course, the mother begins to cry. It’s that moment of mutual connection that those of us who hear often take for granted.
If you have ever seen one of our home videos on YouTube or Facebook Live, you will see All Things Autism. What you may not recognize is that Morgan has a hearing, or rather a listening, impairment. Even though her physical hearing is intact, her ability to process and interpret sound is interrupted by something called CAPD (Central Auditory Processing Disorder). My unscientific explanation is that there is a glitch in her central auditory nervous system wiring. This is a separate diagnosis from her autism. For signs and symptoms of CAPD, visit asha.org . American Speech-Language-Hearing Association.
It is hard for Morgan to separate and make sense of sounds, especially speech. There is actually a slight delay in what she hears. When we are at home, in a one on one, quiet environment, it’s much easier for her to navigate. We’ve learned to slow down and give her time to respond. You will see she is very talkative and engaged. She is Very Able to express herself in our home environment.
Morgan and Papaw showing off an April window painting they did together.
When Morgan is in a group setting, there are lots of competing sounds and distractions. Large gatherings can be confusing and stressful. This usually stops her from initiating engagement. When she is overwhelmed, her reaction is to grunt and vocalize her displeasure, in order to get away. Or she will completely shut down, squinting her eyes, bending over and putting her head in her hands. Unfortunately for her, this makes others see her as Less Able than she actually is. When we are able to know what to expect, and provide Morgan with a schedule ahead of time, this takes down the stress and helps her be more successful.
As things speed back up again, we find ourselves stumbling a little more, trying to regain our footing in this world. I guess that’s life, with or without disabilities. I still believe the joy of a meaningful life ride is worth the learning bumps we experience along the way.
There is a giant chasm between hearing and listening. This year of slowing down has really opened my eyes and my heart to the difference. Many of us have forgotten how to listen. It takes time to really get to know anyone. It takes time, patience, and a sincere caring effort to get those moments of mutual connection, where we can all truly communicate.
We openly share our family’s journey with autism in the hope of creating understanding and acceptance for all individuals with disabilities.
Until Next Time,
Know The Hope,
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