paradox-noun-the paradox of war is that you have to kill people in order to stop people from killing each other: contradiction, contradiction in terms, self-contradiction, inconsistency, incongruity; oxymoron; conflict, anomaly; enigma, puzzle, mystery, conundrum.
I try not to write blog posts immediately after emotional events occur, because then the word usage is harsher and more painful. The situation is still raw. Often times, I sit in my car or at the top of the stairs in my house after experiencing something traumatic, texting my thoughts to myself, blinking away tears, and angrily typing as fast as I can. Then I delete. Or I amend. Because I can’t say that on the Internet. I can’t admit that. I can’t text anyone that. I can’t swear or disappoint or offend.
But honestly? It gets exhausting.
It wears me out to delete and amend and reword my feelings. It is taxing and physically draining to pretend, to paste a phony smile on my face while I walk up and down the aisles of Target in my sunglasses, to breathe in through my nose and out through my mouth, grit my teeth and continue robotically through the day, pushing my anxiety into the pit of my stomach as if nothing happened. As if nothing is happening.
I’m going to say it because it just needs to be said: Some days, I just fucking hate autism.
There. I said it.
Don’t like my language? Unfriend/unfollow me or simply exit the screen. All it takes is one click in the top corner and you can go on about your day. I’m not going to be sorry anymore for how I feel or who I am or what I have to say. My only outlets are running for miles, eating junk food, and type-type-typing away at my phone or computer when I have three minutes to myself. I’m trying desperately NOT to do one of those three, and even after running over 80 miles so far this month, my mind is racing with thoughts. So here I am. And some things just feel like they require one expletive.
This post probably isn’t going to be pretty. It’s not going to end with that satisfying “aha” moment or a quote from a famous person—not that I’m saying I’m ever super philosophical or leave any readers breathless with my words.
If you read my initial post regarding my son’s diagnosis of Autism Spectrum Disorder and Sensory Integration Disorder, you know that I see possibilities when it comes to my son. I welcome his quirks. I embrace therapy sessions. I believe in him and support any progress he makes. If you read my next post about people’s reactions, you know that I don’t want pity. I don’t want people to say I’m sorry. Because it accomplishes nothing. There’s nothing you can do to change my son’s diagnosis. There’s nothing I can do to change it. Knowing that you’re sad for me doesn’t help or support or strengthen me. In fact, it ends up making me feel worse.
Both of those posts generally came out with an optimistic tone. A tone of acceptance and tolerance and deep within me, I do still feel optimistic. Most of the time.
Two weeks ago was not one of those times.
So far, being an autism parent has been the ultimate paradox for me. A mystery. A conundrum. A contradiction. A conflict. It’s a mix of: Yes, of course I care where autism originates. Of course I want to know what causes it, because then maybe either preventative measures can be taken or treatment and support can be improved for the thousands affected. But wait. No, I don’t want to know because why does it matter? And what if it’s something I did? And why should my son need to be fixed? I mean, then I’m admitting something’s wrong with him. He’s not wrong. He’s just different. Right?
It’s a mix of: Yes, of course being involved with all these special needs parent support groups that people invite me to join online is beneficial and encouraging. But on the other hand, some days, the posts there are downright discouraging and depressing and I just want to talk to someone who hasn’t faced her own personal hell that day.
My life—and more importantly, my son’s life—is a veritable mix of yeses and nos, rights and wrongs, dos and don’ts, cans and cannots. And my head just spins and spins and I somehow have to continue teaching, continue driving my son to appointments, continue parenting, continue cleaning and cooking and taking care of husband/dog/house, when all the while I feel like Kate Winslet in Titanic, standing in a crowded room screaming at the top of my lungs and nobody even looks up.
Two weeks ago, I took my son from school to his speech therapy appointment. The same time and place every Tuesday for the last 13 months. For some reason, he wasn’t having it. He started protesting and kicking in the waiting room. “Remember, William, we use gentle hands and feet.” “I want water. I want outside.” “William, we can go outside and see the water AFTER you play with Ms. Maria. Don’t you want to play with Ms. Maria?” ::kick:: ::hit:: “No!” So Ms. Maria came out to get him, and we both could tell it was one of those days when I would need to accompany him into the room. This has only happened three times total thankfully, and even when it does, usually he settles, completes his 30-minute session, and we move onto what he really wants to do: run back and forth in the grass behind the office, throw twigs into the lake, and pick leaves off the trees.
That day, I had the worst public parenting experience I’ve ever had. In front of a professional, I pretty much had to wrestle my child into a corner because he was so aggressively hitting and kicking, swinging over and over again no matter the tone of my voice, no matter the words coming out of my mouth, no matter my facial expressions, no matter my attempts to distract and deter and redirect.
I had to pin down his legs, I had to hold his arms, and still, as his limbs and face turned red, he struggled to hurt me. To hurt me. Because he does hurt me. Did any of you know that? He hurts me. He doesn’t mean to hurt me. I truly believe his intent isn’t to harm. But it happens. It happens to me. It happens to my husband. It happens to my son’s teachers.
“William, you need to calm down. Take deep breaths in and out, like this,” I said, and I breathed in through my nose, out through my mouth, the way I’m always doing to keep my own stress buried. “We use gentle hands and feet. We don’t hit and kick because then we hurt people. You hitting and kicking makes Mommy sad. Look, gentle hands,” and I took his hand and tried to rub my face. He clawed and pinched instead. Thankfully, he’s a nail biter. No harm done. Small favors, right?
Then, guys? Then he just cried. Miserably, loudly, full on tears streaming down his face. And me, in a skirt and heels, all professional and put-together, crumpled on the floor in front of a 35-lb toddler, sweating while restraining him and looking into his frustrated eyes, trying not to cry myself in front of this woman who must think we’re both crazy.
He had a good day at school. He slept well the night before. I put calming essential oils on him. I promised him a trip outside and a lollipop if he would just sit calmly and participate in speech. I was trying to do everything right. And it didn’t matter. The poor thing.
“Why are you sad?” I asked, still holding him.
“Sad,” he said. He can’t tell me why.
“I know you don’t want to be here,” I said. “I know you want to be outside. But FIRST (I have to emphasize, as he learns time), we play with Ms. Maria. She has a dollhouse and some toys for you. We have to learn and use words, and THEN we can go outside. It’s a few minutes. I’m sorry you’re sad.”
He kept crying. I was still holding his arms. And then I had a thought. I loosened my grip and helped him to stand.
“Look at me,” I said. And he did. “Do you want to sing?”
“Sing,” he answered.
“Can you make a…” I started.
He sang, “Happy face, happy face, jack-o-lantern. Can you make a sad face, creepy face, jack-o-lantern.”
Ms. Maria and I clapped. “How about twinkle twinkle?” I asked.
“Twinkle twinkle, little star…” he sang. And he smiled. And he breathed. And he sang.
Those moments of relief really mean the world to me. Not even because I’m relieved. But because I can see his relief.
We salvaged about ten minutes of his speech session.
But, at the risk of sounding dramatic, I think I had already died a little inside.
The amount of physical effort, the emotional up and down and up again, the weight of someone’s eyes and ears on me during this meltdown, this argument, this difficult moment, whatever you want to call it, just… I don’t know. Sometimes I feel like the English language is seriously inadequate. It’s like a piece of me cracks off every time I have to witness my son hurting himself, hurting others, breaking down.
Because here’s the thing. A lot of you have probably carried screaming children out of stores, felt the eyes of others on you in public as you figured out how to discipline your child. A lot of you have dealt with hitting or kicking or biting. You’re sitting there reading this like, “Quit being so dramatic. Every parent has dealt with the terrible twos or the three-teens. Every parent has had to carry a kid kicking or screaming—stop acting like this is a big deal.”
Maybe you’re not thinking that. But if you are, chew on this: at some point, hopefully, your neurotypical child—like that? I get to use big words now that I’m an autism parent. On the support group pages we even use acronyms like NT! So much fun. Only not.—eventually learns to rationalize. Hopefully your child can understand, “30 minutes of speech and then you get a lollipop and to go to the park!”
My child doesn’t process language the way he should at his age. His receptive and expression language skills lag behind, and so he struggles to communicate. He can’t say, “I don’t want to do this right now” so instead, with hot tears streaming down his face, he kicks me, or his teacher, or his speech therapist, or his father, or the kid who took his toy away and he can’t ask for it back because words never ever come to him the way he wants them to.
In addition to that, there are direct correlations between physical strength and autism spectrum disorder. Every professional, every family member, every friend who William comes in contact with inevitably makes the same observation: “He’s so strong.” And inside, I’m like, yeah, no kidding. He is incredibly strong. And it’s scary. Because right now I’m bigger. Right now I’m stronger… mostly. But a year from now? Two years from now?
So yes, I love my son’s quirks. Sometimes. I love that he pushes his face so hard against my face on a daily basis because of his sensory needs and that he is active and loves to climb and play. I love that he counts and sings songs over and over again because his voice is the absolute most beautiful sound in the world to me. I love that there are some things about him that only his father and I know about. I love that he turns upside down every time Olaf comes on the screen upside down while he watches Frozen. There are so many aspects of him that I love. Even the things that are hard to love, I love. He’s my baby.
But no, I don’t love that he struggles. I don’t love that he’s different in a society of same. That while your child plays tag with another child on the playground, mine doesn’t understand how to interact with other people and instead, runs away from your child. Wanders. Throws mulch. Stares at signs, backs away, and stares at signs, backs away. Walks up the steps and down the steps the same way over and over and over because his autistic brain is so repetitive. That while your child can tell you that another kid hit him at school or tell you what he did today at school, mine can’t.
I don’t love that sometimes I feel like I’m losing him. Like sometimes, he’s so far away.
And then, when I let my feelings sit saved and unheard on Microsoft Word for days at a time, I get small gifts that remind me to breathe in, breathe out, to sing “Twinkle Twinkle Little Star,” and give myself a break.
My gift for the last two weeks, nearly every night, was a little boy holding onto my arm when I tried to put him in bed. He wants me to lay next to him while he falls asleep, still clinging to my arm.
I guess I’m really not losing him at all. He’s there.
Somehow, somewhere, some way, he’s in there.