One sunny day near Louisville, Kentucky, my husband and I entered a prison with the Kentucky School for the Blind Choir. We practiced with this amazing group for weeks, and it was our first time to sing together in formal attire for a literally captivated audience (sorry, I couldn’t resist the pun).
The impressiveness of this experience spanned beyond their ability to memorize entire pieces of music in a few hearings. Since their hearing senses were heightened, this choir surpassed the musicianship of any choir with whom I have sung. Completely astonishing was their ability to read Braille words on one side of the page and raised notes on the other side simultaneously while using fingers on different hands.
The few sighted members, including my husband and myself, were minorities and were there to help all members get through security and be placed on stage for the prison performance. Many members were not only blind but had physical disabilities that required wheel chairs or walking apparatuses. Others had distinguishing savant qualities. The choir director’s blind child who had passed away years prior had inspired her to dedicate her retirement years to directing this group. She was there for those who could see, while the rest of the group would collectively take a breath and start singing together with no visual cueing.
Clearing security was a major undertaking, because many members played instruments as well. Sighted members were tasked with taking each person through a security procedure with their instruments, personal belongings, and items needed for mobility. Nervously arriving at the police station, I had not given much thought to myself or my own preparation.
Once everyone was secure, we gathered on the platform to sing. The director gave us our starting notes, and we sang as she waved her arms rhythmically in front of, but essentially unnoticed by, most choir members. The choir was oblivious to the confused, comical looks she gave me during the first song – but smiling and singing, I just went with it – after all, nothing had been typical about the entire event up to that point.
After our first song, a prison guard got up to make our introductions as a group. Our director used that time to come and sit beside me.
“Do you notice anything different?” she whispered to me. (Different? Is she serious? Everything about this is different! I thought.)
“Well, what do you mean?” I inquired.
“Look at your dress….” she nudged.
(Looking down, I still did not understand…) I shrugged.
“Your dress – it’s… on backwards!” she giggled.
(long pause as I looked down and then looked around at all the others).
She continued, “Don’t worry….they’ll just think you’re blind!”
The irony is not lost on you, I am sure. I was the only one who had any trouble dressing myself that day. And it was a formal! These are usually pretty self-explanatory to wear. This day, what divided us was not disability. This day, I was distracted by circumstances and hyper-focused on others without giving much thought to myself.
This happens as an Autism Mom quite frequently: Appointments, therapies, sibling relations, friendships, apprehension in class, perceptions in church, public fits, finances, exhaustion, marriage, potty accidents, trying to understand speech, isolation, not connecting, or being too connected. This is not an exhaustive list.
Parents of special needs children accommodate more than we realize. We guard, direct, and create opportunities for our children to succeed, because so much in their lives is perceived as failure or not measuring up to normative standards. Sometimes this can be mentally all-consuming. Other times, we fear we are missing something because of the weight of having a small window in those early years to give them the best opportunity to be somewhat independent.
When our children initially appear typical to outsiders, our tendency is to either 1.) label them ourselves so others will relax their expectations, or 2.) attempt covering up social, emotional, or behavioral deficits for as long as possible. (I personally hope I get much better at doing neither extreme, because my child is more than his Autism!)
Being self-aware is almost non-existent. God thankfully only labels us as His children and not by what is different about us or difficult for us. He does not announce me to others as “DeAnna-the-easily-irritated” or “DeAnna-the-hard-headed-one” (though that can be easily identified by an observant friend). While I believe He guards us from more than we can realize in our finite human minds, I am also thankful for times He has not covered up or rerouted us past our deficits because without seeing our sinfulness and weakness, we could never identify the depths of His grace and His power at work in us.
I am proof of an often intensely distracted Autism mom who may have trouble dressing herself in formal attire, but is fully and appropriately clothed by the One who clothes me Himself with Himself (since I cannot do it on my own), in the “garments of salvation and the arrayment of the robes of His righteousness.” (Isaiah 61:10 – NIV).