J. Lorraine Martin
www.cheeselesspizza.blogspot.com
I was sitting in a lawn chair in my garage with the door open. A thunderstorm was in progress. My tears synchronized with the outpouring. I don’t usually take the time to really feel and watch a storm, but on this day I was drawn to the outside, perhaps seeking a powerful physical stirring to match the emotional stirring that had just occurred.
Earlier, mulling around the kitchen, I reviewed the details of our planned social outing with each of my kids. My initial goal was to gently stretch my autistic son outside his comfort zone by having my daughter invite one of her friends to join us to go bowling; however, it soon hit me that allowing new people a full view into our life brings to the surface feelings of vulnerability that we all would prefer to avoid. In fact, the mother of our invited friend had to ease my own self consciousness by assuring me her daughter would love to help us. I then in turn assured my surprised daughter of her friend’s openness. My youngest at first said he had no interest in going; he often craves a break from autism. However, at the last minute, he changed his mind.
Naturally our fears and reticence pale in comparison to the obstacles my autistic son must face. When a new person comes to our house, he usually insists on retreating in some way. I’ve tried to hire new people to come “play” with him, and he often hides in a closet, only able to talk through the door. One time cherished relatives came to visit, and he could only fleetingly look at them before hiding in his bedroom during the duration of their stay. Sometimes, even with the most loved and trusted of therapists, he has insisted on turning off all the lights in a dark, windowless basement room before he can interact with them. I theorize he tries to close down one sensory system, like vision, in order to manage his bombarding and overwhelming emotions and sensations to life.
With a lot of talking, planning and anticipating, my son chose bowling over a home play date. He actually seemed excited until he comprehended a detail about the outing that he had missed in earlier discussions.
“I thought she was meeting us at the bowling alley. I can’t ride in the car with her.”
Through a process that was nearly impossible years ago, my son can now talk through his fears without simply yelling that he can’t do it.
He lamented: “She might cough.”
Readers take note: my son would like you and the rest of the world to not cough, ever. He finds the surprise sound startling. He has run out of many a restaurant, movie theater, and school room in a panic over this rule being broken.
We discussed the fact that people may cough. He decided that if he told her to warn him first, he could handle the cough sound better. He calmed and said he could ride in the car with her.
The outing became not just about him, but us all. His reactions to life may fall outside society’s normal definitions, but in a way he seems to be conveying in bold extremeness what is true for most: the need to navigate the unknowns of life with some sense of control. Going out in public with my oldest son is a venture into unpredictable territory to say the least. However, with the repeated hammering of experience, I’ve come to conclude most of my ideas around the concept of control have been illusory; true control lies in the choice I make once life presents its various manifestations.
My other children had been prepped that our goal was not about some prescribed outcome that must meet certain requirements to be deemed successful else we stamp it with failure. Mind you, I didn’t come to this way of thinking without a lot of hard knocks. In the past I would have said: Oh no he cried! Oh no he yelled! Oh no he’s different! Oh no how will this affect his siblings? Oh no no no! We have failed! Thankfully life brought me wise and insightful teachers, coupled with organic experiences, to help me re-frame my defeatist thinking.
We prepared for him not talking at all, or talking too much, or getting anxious, or saying something embarrassing, or even for a potential meltdown. We prepared that our guest was simply learning about autism, so no matter how the day played out, she would learn. In this way of thinking success had already been achieved by the simple act of taking our first step out that door.
Our friend entered the car. My son surprised me by gregariously talking. Sometimes he talked appropriately. “Do you have classes with my sister?” Sometimes he went to a script barely listening to her replies as he moved from one self-interested and random statement to the next. “Have you ever listened to Moby? I love the crazy you tube video with Ronald McDonald! I hate the Montel Williams Money Mutual commercial!” Everyone rolled with it, and I felt a sense of acceptance once hard to find from others; if I’m entirely truthful, my own acceptance and peace was a hard-fought-for triumph.
We drove along, all of us attempting to foster conversation. He at one point rolled the window down and hung his head outside of it, removing himself from interaction. I understood this gesture.
“Why don’t you tell our guest what you are worried about?”
“No, I don’t want to.” His curls were getting matted to his head as he continued to hang his head out the window. The siblings complained over the stifling heat.
“Does it feel hard to tell her?”
“Yes.”
“Would you like me to tell her?”
“Yes.”
I shared his coughing fear with our guest. She said she understood and would warn him if needed. She exuded compassion, and I was thankful for her presence.
He rolled up the window and rejoined us.
We arrived at our destination and began to bowl. We’ve bowled with a few special needs groups over the years; the bigger sounds of background music and balls hitting pins somehow muffle the smaller, uncontrollable sounds like coughing, so it’s a place that has always brought relative safety to him. Although, our history isn’t perfect here; in the past he often had to walk away when it wasn’t his turn as sometimes the waiting in close proximity to others proved too daunting. I’ve even stood outside with him pacing in freezing weather to give him the distance from others he craved.
On this day he was able to wait his turn and sit with us.
I came to realize it was my younger son who struggled a bit more with this outing. Not only was he in last place but he saw someone he recognized from school. I suspected memories of difficult public moments with his brother were also running through his mind.
“Mom! This is so embarrassing! Those tube socks you both are wearing are hideous, and your tie die shirt is awful!”
I was overjoyed that his biggest expressed fear was our nerdy look! I felt ever so normal! He focused, moved up in his ranking, and seemed genuinely happy. He and his sister confidently fostered interactions with their brother and our guest. I celebrated all the progress before my eyes.
After dropping our guest back at her house, my son and I reflected.
“I had so much fun today.” And then three, unimaginable words followed from him: “I felt normal.”
In the fifteen years of raising my son and being kicked out of numerous school programs and often looked at as if we were rare oddities, “feeling normal” has always been outside our realm of experience. It was only a few weeks ago that I dropped him off at a new summer camp, and he resembled a frightened preschooler, asking me to stay close by, self isolating, heartrendingly trapped in fear that has always gripped and stifled his experiences.
I burst into tears and hugged him. Years ago he could only receive a hug in a stilted way. He now received it tenderly.
“Why are you crying Mom?”
“Because I’m happy for you that today went so well!” Many times he has asked me how I can cry when happy, and it’s a concept that has been hard for him to understand. As he looked at me and smiled, I couldn’t help but wonder if together we had chipped away ever so slightly at his lack of understanding.
His sister walked in, and I explained my tears through stuttered words.
She asked her brother: “What do you mean by feeling normal?”
“I felt like you.”
My daughter commended her brother in his progress; she then hugged me and thanked me for making the outing happen. Then my youngest walked in and saw me crying and grew sensitively alerted, as he always does. I shared that my tears came from joy; he hugged me the deepest. I thanked them both for being willing to take the risk of facing their own fears in order to help their brother.
And that is when the sounds of a storm tugged at my overwhelming emotions. How often have I ignored such natural occurrences, yet on this day I was drawn?
Sitting in a chair tucked back several feet from the downpour, tears of joy and mystery commenced from a deep well of remembered pain. Why had autism receded in such a way today as to make my son not only feel normal but have the self awareness to declare it? What had brought my son out from his regression a year ago when he hid in forts under tables at school, raging and panicking across a wide array of settings, to a boy who went bowling just like any other teen? I did not have answers as to why his storm of autism on this day experienced a temporary quell, giving us the profound words: “I felt normal.” From the dark and often hopeless places we have been together, I cannot imagine words that could feel more powerful and meaningful, imparting the clear and inspiring message: continue to hope, continue to try.
Suddenly, a gusty wind gathered force, whirring and sweeping across my skin. Soon I was bathed in a misty wave of rain, so surprising that my entire body braced, hands clung to the arm rest, face thrust back, resting and cradling on my left shoulder. My lungs drew in, exasperatingly holding the breath for an extended moment, and then released a drawn out “ahhhhhhh…” It was a rush of power and physical sensation that matched the overwhelming swell of my emotions.
At bedtime, we reflected some more.
“You’ve had so many hard times. I’m glad today felt so good for you.”
And I was blown away again when he said: “I felt like someone else today.”
