Sometimes I give myself an F. Somedays, I wonder how we are going to get through another big family outing without having to be on full-attention mode, dusted with a healthy coating of anxiety. Sometimes, I cry and curse at myself for thinking the words: "I just wish you were normal." If I say the words out loud, even just to myself, I feel heartless. If I don't say them, I feel like I'm drowning.
Because there is no manual for autism. No manual for children and adults afflicted by it, and absolutely none for parents who sit shell-shocked upon hearing the diagnosis. As a relatively new phenomenon, with new statistics like 1 child in 68 (http://www.cdc.gov/ncbddd/autism/data.html) diagnosed with autism spectrum disorder, schools, dental offices, moms groups, etc. are flying in the dark about how to best approach kids who don't fit the norm.
Since Liam first received his diagnosis at age 4, I have gone through every emotion you can imagine. Autism however wasn't the first "disorder" to shape him. He was in an out of the hospital for weeks as a baby; at 3 months he almost died from a very rare kidney disorder, then suffered a scary bout of lymphatic hyperplasia (inflammation of the throat and small intestine) after becoming allergic to both soy and milk formula.
He was tube fed for six months as we worked to stabilize his electrolytes and teach him how to eat again. He developed gum decay, had his front teeth pulled at 20 months without anesthesia. The child (and us as parents) went through it all by the time he was 2. Once Audrey came along, he started to thrive, stabilize, and grow. We believed the worst was behind us, until we came out of the fog to start paying attention to his development. The autism diagnosis hit us at a very fragile time, while I was still living through crisis mode , sprinkled with daily rounds of PTSD.
Some early days in our Life After Diagnosis, I made huge mistakes. I would take him to play dates, hoping he would learn to adapt to social settings and peers. Many times he would scream and withdraw, only to have me apologizing and smiling out the door in a panic, then sitting in my car bawling my eyes out.
"Why can't you be normal?"
Other times, I would lose my temper when he would throw a sensory outburst tantrum in public. We read about bear-hugging, blanketing for comfort to help him feel safe as he learned to navigate the world when he didn't feel right in his own skin. I spent many afternoons on the couch , paralyzed with grief and guilt about how I handled a situation. Confused doesn't even begin to describe some of those darker days, when I would read websites about puzzling behavior and different techniques to use to help him feel secure and understood.
Yesterday, running out with Audrey and Aedan to the bus stop, Liam just ahead of me, it came back again. Feeling that familiar twinge of anxiety that I can't catch him fast enough to monitor his loud echolacia about Veggie Tales, redirect him before he gets in another's kid's face, yelling "do you love Veggie Tales?", or knocking on someone's door in the early hours of the morning. All of which he has done.
"Why can't you be normal?"
There were and have been wonderful days too, over the past seven years. More wonderful days than hard ones. Days when his heart shines forth, when he "gets" something I have been trying to teach him for weeks, months. In some cases, years. When he would really see his sister or brother as entities of their own, and would go hug Audrey or ask "are you okay Aedan?", without being prompted, with all the geniune care in his pure heart. Last weekend, when we ordered him an extra helping of pickles at a restaurant, he gave each of us a spear before helping himself to his favorite condiment. During those moments, my heart leaps out of my chest and flies through the roof.
No one can prepare you for the pendulum swing of emotions you feel every day as a parent. No one especially can prepare a parent for autism. There are tiny, miniscule victories that other parents of typical kids don't appreciate; there are heart-racing moments of anxiety when your child is acting out and no one gets why; there are times when you look in his eyes to see the frustration and despair he must feel inside, that you can't fix no matter how hard you try.
No one can grasp the love you feel when your child first says "I love you mom," when speech has been a struggle for him. Or the late night wake-ups when your 11-year old throws his leg over you at 3 am to say "You're my best friend mom" in an earnest whisper, followed by a kiss to your cheek. Those moments are solid gold - little nuggets of joy to carry close at all times.
If I were to write a manual on living with autism, the underlying metaphor would be a schizophrenic pendulum. Off this rainbow-colored arc would sway to the left when you see your child at the soccer field near his favorite park, watching the kids with his eyes shining, yet somehow knowing that he doesn't possess the social skills to join in. Somehow, without being able to access the correct words, feeling his loneliness like a dagger through your own heart. Alongside this loneliness, his desire to be accepted beats fast and true.
Seemingly in an instant, the pendulum crashes to the other extreme when you watch your child at his summer camp's talent show, ready to sing a duet. When he stands up with confidence on the stage, singing his heart out into the microphone, knowing every word to "Love Is An Open Door" from Frozen, next to his "girlfriend," just a year older. All the gold nuggets of joy turned to liquid love as I videotaped him singing, his confidence shining through, his smile a dazzling beacon for all to see.
When other kids look at him with puzzled expressions, when one asks "can't he hear us?" or "why does he say that over and over?", sometimes my emotional schizophrenia feels empathy for kids not understanding something different from themsleves. On my less than stellar days, though, I resent both the kids for looking at Liam like that, and , sometimes, Liam himself for being an object to be studied.
"Why can't you be normal?"
In my fictional manual, I would highlight the highs and lows of autism with unflinching honesty. I would instruct myself to have more compassion towards Liam, others around him, and myself. I would remember with exquisite details the moments that help Liam to shine. I would devote myself to understanding the confusing parts about him. I would forgive myself for my impatience and mistakes.
When he repeats phrases from Disney movies, or replays previews over and over, or writes lists of things he loves (or wants to have) in his unique, fascinating, slanted handwriting, I will use these expressions to access his emotions and needs. I'll try, at least. I'll fail a lot, but I will succed as well. When he becomes frustrated or angry, he loses his impressive gains in communication and repeats phrases he has heard ("I'm going to destroy you," muttered to his teacher, being my personal favorite). He says them not to be mean, but because he is learning the nuanced tools of acclimation, negotiation, and expression.
I will remember today, when he and I were outside, him on a scooter, me on my bike, heading down the greenbelt behind his siblings. Wind in our hair, sun dipping behind the trees. He was "yodeling" (Brendan's word for his high pitched cries of delight), and I stopped shushing him for a moment. I turned it into a game - him chasing me, me chasing him, racing towards an imaginary finish line. The smile on his face will be etched in my mind and heart for a long time. He is infinitely and beautifully himself as he learns empathy, remorse, communication in his own way, directly from his spirit through his voice and out into the scary world.
Instead of asking "why can't you be normal?" I am going to start repeating, like a mantra to myself, "Why can't more people be like you?" Less normal, more genuine. May he never change except to find more confidence, purpose and joy in the world.
If the manual continues to evolve and change as Liam grows up (and as I do too), so be it. I can't imagine Liam any other way than how he is now: "non-normal," hilarious, challenging and sweet. The pendulum will swing on, the manual will contradict itself. I may throw it against the proverbial wall a few times. But may I forever be on a quest for more honesty and understanding down this unchartered road paved with liquid love.