"Let me ask you something. If someone prays for patience, you think God gives them patience? Or does he give them the opportunity to be patient? If he prayed for courage, does God give him courage, or does he give him opportunities to be courageous? If someone prayed for the family to be closer, do you think God zaps them with warm fuzzy feelings, or does he give them opportunities to love each other?"
-God aka Morgan Freeman
(Note: this is a way-shortened excerpt from my book, "Notion Sickness", which will be published via Exciting Press some goddamn day when I goddamn finish it.)
I had a meeting with the Special Ed teacher at my son’s school yesterday. The appointment was made without asking me when it would be convenient or if I thought it was necessary. Which is public school for “We need you to quit pretending your kid is normal”. Calvin used to go to a groovy Montessori school--the kind that doesn’t believe in desks, and the kids call the teachers by their first name, and they play Queen during music appreciation hour--but I’m on a single mom, public education budget these days. While Calvin was at the groovy school, I didn’t have to deal with certain realities. Realities like the fact that my ten year old son can’t sit still for more than fifteen minutes without needing to get up and run circles, flapping his hands and grimacing. “Stimming” they call it, apparently, short for self-stimulation, a need to compulsively repeat a movement over and over again. Or the fact that he doesn't use silverware when he eats and still wears Velcro shoes, things that I forget are caused by delays in his fine motor skills and aren’t just little quirks of his personality.
Calvin was diagnosed with autism and Tourettes this summer. It was a long time coming. We fought the label for years, worried it would define and limit him, and did our best to work with his challenges without making them into a big deal. Last May, after a rough and demoralizing school year, he climbed into my lap with his typical lack of body awareness, like a Saint Bernard thinking its a lapdog, all gangly limbs, giant feet, and leg-crushing weight. He burrowed into my chest and looked up at me with his intense blue eyes, old-soul serious, and asked, “Mom. What is wrong with me?” And I realized I had failed. I tried to protect him by not acknowledging his difference in the hope it wouldn’t be a shameful thing, that maybe his neuro-atypical obliviousness would lend itself perfectly to never realizing he was odd. Instead, for years, he lived in confusion and self-reproach, knowing he couldn’t function like the other children around him, assuming it was because of a personal failing. It was a huge fuck up, one I wish I could go back in time and remedy. I had my reasons. One of them was the particularly compelling argument made by Calvin’s dad, who had been emotionally-mangled by the special education system as a child and insisted that we didn’t treat Calvin any different than our other kids. That argument usually went something like this:
Me: Do you think we should take Calvin to a specialist or something? He’s eight and still can’t tie his shoes.
Ex: He’s fine. Leave him alone.
In the midst of filling out the Autism evaluation form for Calvin, I was struck by how many similarities there were between my ex-husband and my son. My ex is a good man, a good person, I am incredibly grateful that he’s the father of my children, there’s no one else I would choose instead. Being married to him was often heartbreakingly, bafflingly lonely. So much grief and confusion about why things didn’t work out between us, suddenly explained in a succinct Autism Spectrum questionnaire.
-Does your child/ex show resistance to change, need routines and sameness? (You mean, like, losing his mind when I wanted to paint the living room? Or being unable to turn around or stop for anything during a roadtrip, even an enormously pregnant wife who is about to wet herself?)
-Does your child/ex repeat words or phrases over and over? (You mean, like, after 9/11, repeating the word “Hezbollah” so often that we couldn’t fly for six months? Or needing to say “I’ll be careful” and kiss us all three times before work each day?)
-Does your child/ex show an unnatural preoccupation for certain topics, obsessing about them and talking about them long after other people have lost interest? (World of Warcraft. Solar energy. Zombie apocalypse. Helicopter rotor systems. The production and use of foam medieval combat weaponry. Yes.)
-Does your child/ex lack empathy, have difficulty understanding that other people’s perspective may be different than their own? (Fuuuuuuck.)
When I was giving birth to Calvin, he was turned the wrong way, sunny side up, and after pushing for six hours, he finally came out, eyes wide open, calm and curious. There’s nothing quite as strange as making eye contact with a human being as it exits your womb. I remember his gaze. I was near-dead from blood loss and exhaustion, my hippy homebirth having gone horribly wrong, and suddenly, there he was, staring up at me with an old man's intensity, his enormous eyes clear and focused. He didn’t cry. He never really cried, he was a placid, easy baby, squishy fat and adorable, the kind of cute that stopped people at the grocery store. Sometimes, in the middle of the night, I would check on him with a new mother’s terror, and he would be wide awake, eyes bright in the dark. Not playing with his toys or babbling. Just still, like a monk in meditation. I told my ex it was like he was an alien from another dimension, sent to absorb our language and culture, beaming it back to his home planet in the wee hours of the night. His dad was upset that I referred to our child as “spooky baby", but as Calvin grew older, it became impossible for even him to deny that our son was different.
He didn't do many of the normal toddler behaviors; didn't walk until he was two, didn't like to color with crayons or play with blocks or read books. He ground his teeth into broken nubs, and I started to notice facial tics, compulsive hand flapping, and other Tourette's symptoms. But his differences made him special, as well. He was an early talker, using short sentences when he was just a year old. (His first was “All gone now spooky", in response to me turning on a light.) He could count to twenty by the time he was two. And he had a creative, curious mind much older than his years. My favorite Calvin story happened when he was around three. We were at a busy birthday party and all the other children were running around playing and screaming. He climbed into my lap, pointed up at the sky, and said, “Do you think there’s life on the moon?” We call these “Moon Moments”, when in the midst of all life’s bustle and chaos, Calvin remains a serene oasis of contemplation.
As a teenager, I was a YMCA camp counselor. I was always given the scholarship kids, troubled kids from foster homes and juvenile detentions. I got the boys, boys with ADD and ADHD, boys who needed several rounds of "Who Can Run Longest While Yelling?" or "Go Find Me A Stick" before they could sit through lunch. I was a perfect foil to a cabin full of wild, lost little men, a placid sloop amidst a stormy sea of boys. At lights out, I would sing them to sleep, surprised each night that such rough and tumble feral souls would allow this small act of gentleness, that they would soften just a bit, when it was safe, in the dark, and allow themselves to be soothed to sleep. One of the boys wrote me a letter after camp, saying that he liked me because I didn’t try to make him be someone he wasn’t, that I accepted him, “farts and all”. (He also apologized for pushing me into the lake with my camera in my pocket.)
I went through a lot of grief when I finally accepted that Calvin had autism. That I would never get to have the "normal" parenting experience I wanted. That all the plans I had for my son had to be set aside or, at the very least altered, that I had to accept him just as he was, “farts and all”. I went through denial, depression, anger, the whole gamut of emotions, and I felt like I was doing it twice, once for my son, and again for my ex-husband. I felt like I was experiencing loss in three dimensions, past, present, and future. It’s painful to love so much, to want something so much, and not quite get it.
For the first few months, I kept thinking “This is not how it’s supposed to be, this isn’t what I wanted”. I didn’t want to have a special needs child. Or to get divorced. I was so angry at my ex when we first separated. Everything was his fault, it had to be somebody’s, after all, and how could it be mine when I worked so hard to maintain the semblance of normalcy while everything was falling apart? Within a few weeks, however, I could no longer deny reality: being separated, with my ex living five states away, felt almost the same as being married. Imagine the space that has come between two people when being broken up feels the same as being together. And in that space, I finally faced the unhappiness I had kept buried for so long. I had been lonely and sad for years, the separation just made it official, undeniable. I finally accepted that it didn’t matter how much I struggled or hid my eyes or tried to force and control things, in the end, I didn’t get what I wanted. For the first four months, I railed against the universe, filled with fury. My heart hurt constantly. It just hurt and ached and didn’t ever seem to stop. I cried every day, regret and disbelief ripping out of me in soul-wrenching sobs. How could the universe do this to me? Why couldn’t I stay married? Why couldn’t my son be “normal”? Why wasn’t I getting what I wanted?
“Who the fuck are you?” This amazing thing was said to me a few months after I received Calvin's diagnosis. I was at a support group for the parents of special needs children, and the topic of "happiness" was being discussed. I had shared that I wasn't happy, I felt like nothing seemed to be going the way I planned or wanted. An older gentleman who had a son with Down's Syndrome, one of my favorite members, perked up and said, “Who the fuck are you?” He smiled and continued in a calm, gentle voice. “Your birth certificate doesn't come with a little stamped guarantee that you will get everything you asked for in this life. Who the fuck are you?” He explained that he believed that, in the end, it came down to the difference between joy and happiness. That happiness is selfish, not wrongfully so, and that joy is not. Happiness is when you are getting all your cozy, little needs met and you feel good. Happiness is shallow, and easy, and too often ego-driven and entitled, I deserve this, I deserve to have everything I want. Whereas joy is about letting go, accepting that life is imperfect, that you don’t get everything you ordered. Joy is about finding peace and contentment within your reality, and hoping, that at the very least, you leave the world better than you found it.
I think most of our frustration and pain in life comes from not getting what we want, fighting against what is. After I finally accepted my son’s diagnosis, a funny thing happened. I remembered those campers, from all those years ago, and how the other counselors would often remark on how patient I was. It was something I was proud of, this natural, compassionate forbearance I had for wild, wayward boys. In my failed marriage and in parenting my son, I had forgotten it, had never allowed myself to pause and feel grateful for my gift of patience because it would mean admitting there was something to be patient about.
It has been difficult to have a child who takes longer to do everything. I have to calmly hand Calvin a sponge after every meal because yelling at him for making a mess while eating would be pointless and cruel, but teaching him to be responsible is essential to his navigation of the neurotypical world. I have to gently remind him to wear shoes to his friend’s house without humiliating him for forgetting simple, instinctive tasks. I have to stick up for him with kids, teachers, parents, and family; trying to educate them on his differences without encouraging special treatment or ostracizing him. Having a child (and a co-parent) with Autism is a challenge, but I have met parents whose children are suffering from disabilities far worse than my son’s, and they are handling their situations with awe-inspiring grace, dignity, and humor. If I hadn't been so busy wrestling with reality, I could have noticed that, hey, thanks to Calvin, I've been blessed with the chance to develop some of those qualities, myself. Good work, kiddo. Now, please, seriously, could you shut the fuck up about Minecraft for ten seconds?