Amy McMunn Schindler is a native West Virginian who has lived with her husband in Pittsford for the past 12 years. She has earned degrees in both journalism and law and is a stay-at-home mom with the couple’s two sons, Trey, 11, and Will, 9. You can read more of her work on her blog at www.fromthemomcave.blogspot.com and in the latest edition of Chicken Soup for the Soul: Raising Kids on the Spectrum.
Last summer, I sat in a lawn chair at a picnic by a lake in my home state—a seven-hour drive away from where I now live. There to celebrate the high school graduation of my older nephew, I watched him as I sat.
He was my sidekick, my special little buddy, long ago before I became a mother to autism.
After that, I learned that those seven-hour trips back to my childhood home became much more difficult with a child in crisis. Our older son was born with classic autism. Formally diagnosed at the age of two, he struggled to get through each day. He struggled to sleep. He struggled to eat. He was not soothed by our hugs. He had no words. He simply spent his day running. Running from us. Running from others. Running out of our house and from stores, running into streets and into parking lots.
We threw ourselves into a life of therapy in order to help him as life in my home state moved on without me. My niece and nephews grew up without me beside them. My children grew up away from their maternal grandparents, uncles and cousins. Family members aged. Some members died. In the end, I know that I had to focus on our child; however, that understanding did not soothe the pain of being isolated from my family.
Therefore, the opportunity to leave our older son at home with Dad while I took our younger son to the graduation picnic was a welcome reprieve from the emergent pressure that came along with severe autism. Yet, I was not carefree. With our younger son as my traveling companion, I had the hope that we would simply “blend”. Please, oh please, could we have the opportunity to relax, have a little fun and just blend in with the crowd?
Our younger son was just minutes old when he was placed on my chest and locked eyes with me. Such a direct connection with my child shocked me. In that moment, I realized both how seriously in trouble our older son was and how different his new little brother was going to be.
I thought Little Brother was going to be “normal”.
When did I realize that he was not? Was it when his preschool classmates sat angelically at circle time while he rolled around the room? Was it when he cried at loud noises? Or, was it when he started talking ad nauseum about topics such as severe weather patterns, the Japanese railway system or the mating pattern of the prehistoric Megaladon shark? Oh, I don’t know. Today, I see them all as red flags that I missed because of the intensity of his brother’s autism.
He received his formal diagnosis roughly a year before the picnic at the age of seven, and in a matter of months, I found our happy-go-lucky, overly-chatty, younger son selectively mute, school phobic and so crippled with anxiety that he didn’t want to sleep alone or leave the house.
This was nothing like the autism we learned from his brother.
This child who appeared so “normal” was just as much in crisis as his older brother. It’s just that his crisis was buried deep inside.
He almost didn’t go on that trip to my home state. He was so very anxious and scared. But, the thought of fun with his cousins finally convinced him, and we set out on the open road.
I coached him along the way, “Buddy? You need to remember that people don’t like to be licked, okay?”
“Okay, Mama,” he replied. But, I wasn’t sure my message resonated with him.
However, it did. He did not lick. What he did do was scratch, hiss and act like a rabid animal. It was something he did in social situations. To him, crazy = cool.
He also kicked a cousin out of anger because he was unable to process his emotions. Did that cousin even fully understand his issues? I wasn’t so sure.
After a while, none of the kids wanted him around. From my lawn chair, there at the lake, I saw our son sitting off to himself at the end of the picnic table. He looked confused and dejected. He didn’t understand why nobody wanted to be with him. My sweet boy. He sat alone.
I realized then that the concept of my little family blending into general society would never happen no matter how hard I tried. Emotion got the better of me. A decade of failed efforts washed over me, and I began to sob in defeat. Every day, absolutely every day, I tried so hard just to get them through school or to go to the grocery store or to a movie or a birthday party. I just wanted to make it through to the end of an event like any other person. Why the heck did everything have to be so darned hard?
Desperately wanting to hide my tears, I bowed my head and put on my sunglasses, but I’m sure that I fooled no one. The fact was, autism held us firmly in its grasp. We were forever changed. We, my little family and I, were autism.
My son and I, we were strangers among family and friends at that picnic. Our lives were very different. Trying to “blend” was trying to pretend that we were something we weren’t. And, further still, by trying to blend, I wasn’t giving those around me the chance to rise to the occasion to help us.
That trip to my childhood home state was a disaster. I left it in tears and cried most of the seven-hour drive back to where I now live. So much for being the supportive aunt to my nephew. Yet I realized that it was my approach, although born from a natural desire, that was the flaw.
In the past year, I’ve blogged and written about this life of ours to all who will kindly read. The desire to blend is no longer an option, and I’m actually happy about that. I’m realizing that the more the people around me learn about my diverse little family, the more they really do want to help us.
Ultimately, the goal is not for my family to blend to society, but for society to understand my family.
I have since returned to my home state with both of my children, and the increased awareness and acceptance of their needs have made my heart swell with emotion, but, more importantly, they have eased my children’s struggles tremendously. It’s amazing what difference even the smallest of efforts can make.
Thank you, AutismUp for the work that you do to spread the word and to help our children. Thank you to my faithful readers who then care enough to listen to what I have to say so that you can carry the message back to your own communities. Truly, every little bit helps.