Autism spectrum disorders occur at various levels of cognitive abilities. Those kids on the spectrum with high intelligence (like my Ryan) tend to have unevenly developed skills. They may be near genius level with their non-verbal skills, but their verbal skills may be way, way, way below most children their age. These kids may have memory and visual skills that are off the chart, yet their abstract thinking may be virtually non-existant. Dustin Hoffman played an autistic man with savant like abilities in the movie Rainman. Most often these savant skills are in memory, mathematics, music and art. Sadly, for many people this portrayal of autism is all they know and only about 10% of people with autism have savant abilities, therefore, Rainman most certainly is not a representation of the majority of kids on spectrum. No, Ryan will not be able to count how many toothpicks you drop on the floor in record time, so please don't ask him to try and rest assured he will tell you to count them and pick them up yourself since you were the clumsy oaf who dropped them in the first place
Needless to say, with Denial and Clueless sitting on either side of me in our soccer mom issued camp chairs sharing cappuccinos, I was anxious and frustrated. "Just go play" I shouted in my Wal-mart mom voice (you know the one I mean) while his chunky thick soled New Balance sneakers were pinching and ripping my flesh and tearing out the hair on my legs (It was fall, remember short season was over so cut me some slack). As I glared at the laughing, smiling, not holding their ears children playing happily with the sun in their face, the wind in their hair rolling in the tall, tickly grass, completely oblivious to the teenage referee blowing his whistle every five seconds caught up in his newfound power, I despised them. Yes, I know it wasn't their fault, but I blamed them anyway. Why didn't they sit on their mother's laps hating the sun and wind and covering their ears so I wouldn't feel so bad? Children are so selfish.
Eventually, I left Kyle and Dan at the soccer field and packed up my sensory overloaded child and went home. I had no idea if Kyle's team won or not, but I knew I felt defeated. When we got home I was emotionally spent and I felt like I just got out of the boxing ring with Sugar Ray. Between the shoe prints all over my body and the whacks to the face from Ryan's large, hard head I felt beaten and scared. Scared that something was really wrong with my baby. You know how fear sometimes takes an ugly turn? Like when your child almost runs out onto a busy street and instead of hugging him and telling him how glad you are that he is okay, you snatch him by the arm and scream in his face. Fear took over my brain and my heart as my roller coaster plummeted to the ground. I looked at my beautiful little boy who was so happy to be in his safe home out of the bright sun, the hair blowing wind and the unescapable loud whistle and I said (I promise I'd be AWEnest...gulp), "Why can't you be normal like those other kids?!!" Oh. My. Gosh. There it was. I said it...out loud. I had felt it in my heart and I had thought it silently inside my own head, but I never, ever gave THAT thought a voice. The Positive and Negative G forces of this da** roller coaster just crushed my heart to a pulp and I jumped out of my car and collapsed into a heap on the tracks.
Meanwhile, oblivious to my smashed heart and collapsed body, Ryan just kept rolling his Thomas engines on their tracks scripting and smiling away. I know he heard me because kids on the autism spectrum hear and understand so much more than they let on. Whether or not at the age of three he understood what those horrible, awful words meant, I don't know, but I've been trying to make it up to him every day since. Oh, and I have also decided to pay for any therapy bill he may need as an adult. What kind of mother says that to her child? I knew that moment would forever be emblazoned in my brain and my heart...what was left of it. I can still see the shirt he was wearing and which engine he was rolling. James, the red engine. Same color as my pulverized heart.
My heart may have been crushed on the tracks, but, fortunately my brain is still able to recall a discussion a few years later that occurred in an occupational therapy office waiting room. As I shared my heart dropping moment with the other moms who were at the same amusement park with me riding their own coaster, one mother looked at me as both our eyes welled with tears, and with a big AWEnest smile she said, "Oh honey, if that's the worst thing you have ever said then you are a great mom." I loved that woman not only because she "got it" but because she was right. Ryan and I have had our ugly moments as we try to understand and live in each other's world. Sometimes it seems as the child gets bigger, the ugly moments get bigger too. There have been many days where I think he deserves a better mother than me and that's where my husband, my family and my girlfriends, wearing their medals of honor, pull me off the tracks and sit me upright in my coaster car. Just like the other mothers in that waiting room and mothers everywhere, until you have sat next to me in my car on my roller coaster, you can't judge me (and in case you are, it may make you feel better to know I cried while typing THOSE awful words).
I no longer harbor angry thoughts towards those soccer player siblings who were so happy and uneffected by sun, wind and whistles. Today, those children may be super star athletes, hanging with the "in" crowd and wearing all the right clothes, but I bet not one of them knows where the country of Bahrain is located. I would bet my soccer camp chair that not one of them knows how many deaths occurred in PA by tornadoes in 2011. And I would stake it all that not a single one of them has the gift of perfect pitch. And as those kids now pull away from their mother's at the bus stop or in the mall for fear of looking like a baby or being uncool in the eyes of their friends, my Ryan still jumps in my arms and loves me up regardless of location or crowd. Go on and be cool, we could care less.
Whether it has been Ryan's development, cognitive abilities, or my emotions, having a child on the autism spectrum truly has been a Comet like roller coaster ride. Once the amusement park attendant snaps you in and pulls down your lap bar, there is no opportunity to say, "I'm sorry, I've changed my mind I would like to get on the kiddie coaster instead please." As Ryan's mother, I own this coaster and it is mine to ride alone although it's nice to have your husband, family and friends waiting down below holding my sunglasses and purse. And as my heart and stomach bottom out from the 90 degree drop, I try to remember that just around the banked curve is another climb to the top so I white knuckle the grab bar and hold on tight. The drops may make my heart stop, but the view from the top is glorious.