There are so many topics they don’t prepare you for in those birthing and parenting books, so many things I wish someone had been honest with me about before I had Nora, and to that point I say to my friend two months away from giving birth to her first child, “Greer, this one is for you!”
Like, for instance, how are you supposed to go to the bathroom when you’re home alone with an infant who won’t let you put her down? That one was easy enough: strap her to a carrier on the front of me, pop her in a vibrating swing, or football hold her with the left arm.
Or how are you supposed to load the groceries into the car without leaving your child alone in the car or sitting in the cart? You load and strap in the baby into the car, unload groceries, and ALWAYS park next to the cart return or, next time, just get them delivered.
Or how do you cope with being sick when they’re not? Simple, boot camp for a future doctor. If they’re a toddler, arm them with bandaids and Doc McStuffins toys and allow them to examine you. Then hide under a blanket on the couch and tell them it’s “fort” time. When that fails, pretend your camping and give them a self-powered wind up flashlight and tent from Ikea. Entertainment, exercise, and distraction for hours. Notice a theme? Yeah, lay down as much as possible. Even if it means you double as a rug for them to lay on while they watch cartoons for hours, so be it. When in doubt, snacks. When you’re ready to wave a white flag, cartoons.
But now I’ve entered that phase everyone with older kids warned me about. This $#!+ is getting hard in a new way. Not physically but emotionally rough. Like my friend Jessica once said to me, “It doesn’t always get better but it always gets different.” Little did either of us know how apt that would be to describe where I’m at now.
There isn’t a one-size experience when you’re parenting a kid on the spectrum and the truth is that each kid with autism is unique in the behaviors they exhibit as much as each kid is unique in their personality. Which means there isn’t a quick fix answer for any given situation because human behavior doesn’t work that way and our children aren’t mechanisms to be fixed. If they’re anything like our Nora, they’re a gentle spirit that at times is wounded just walking through the world on any given day. She notices every expression, overhears every conversation, and senses even the nonverbal mood emoted by people’s body language. Yet she struggles with how to communicate and carry a conversation. The emotions of others overwhelm her like a leaf struggling to stay buoyant on top of a wave only to be submerged yet again by the forces around her.
So, I screwed up, I didn’t notice her rash right away. I remembered to give her the allergy medication every day except for one and suddenly a painful rash of hives broke out on her face. I apologized, upped her medicine, applied my requisite cure-all of coconut oil (like the dad in “My Big Fat Greek Wedding” and his Windex), applied cool washcloths and thought we were in agreement that it wasn’t a big deal. “It’ll heal, baby. It’s not contagious, it’ll go away, just don’t scratch or pick at it and it’ll be gone in no time.” Problem solved, right?
Then she went to school. People stared, people commented, they they noticed her feelings were hurt and they revelled in picking on her. Nora’s embarrassment over her rash became the only thing on her mind and she suddenly didn’t want to go to school. I reassured her that the rash would be gone and that the best way to deal with bullies is to ignore or confront them. That showing them that they got to you is giving them what they want and you can’t give in. Write about it, talk to your friends, talk to me, create your art but don’t let the bullies see you cry.
She’s reached an age where her art isn’t created to entertain or seek the approval of others in completing a task, it isn’t cute, it’s hers. Her art is clearly reached a level that matches her self awareness of her emotions and expresses those clearly in her work. I shouldn’t have been surprised when she brought home a book self titled and created about her rash titled, “I have a rash on my head.”
Second mistake on my part, I overstepped and gave in to interpreting it as adorable and hilarious. I laughed. She became furious and ran into her room, refusing to speak to me, and giving me a glare that I’m sure I’ll see more of when we hit puberty. Mom was an @sshole.
I lean towards stark honesty with my kids all while trying to be humorous to help ease their fears. Besides, a little bit of levity sure helps me keep it together as a parent and these questions lately are not easy. Yet that humor can come across as sarcasm to a child at times and it’s nothing to laugh at but to apologize for and make amends.
She was hiding under her blanket. Crying. I tapped on her door and watched as the lump under the blanket hid further down behind her covers. I gave it to her straight.
“Nora, I’m sorry.” The covers rustled a little and she moved over to give me room to sit next to her.
“Can I talk to you?” There wasn’t a response but she was listening.
“Will you come into the bathroom with me so I can show you something?”
The covers came down and she nodded without looking me in the eye.
I asked her to look into the mirror with me and I patted her face down with a cold washcloth.
“Your rash will go away but, those people that bully you, they’ll still be ugly.”
Her gaze tore from the floor and whipped her widened eyes to my face as she flashed me a startled smile.
“That rash is going to heal and you are beautiful whether you have a rash or not. The people teasing you will still be ugly because they’re ugly on the inside. People that try to hurt your feelings are not your friends and you should feel bad for them but avoid being friends with them. Ok?”
She hugged me and giggled. I could feel her little body soften and relax a little as she wiped away her tears.
“You don’t have to try and be friends with people that are turds. You deserve to have friends that are kind to you and love you. Everyone does. Don’t settle for people that are ugly inside. Alright?”
“Don’t say “turd” at school, ok? That’s a word for home.”
She giggled, “Ok, mama.”
I hung back in the bathroom and cried a little bit. It hit me that I was so much like her when I was that age and I wondered who I would be today if I had heard those words. How I wanted to kill myself at seven because of the bullying and so many times after that. How I reached out so many times for help but no one told me those words. I had to learn those lessons for myself and fight back in my own time until I really believed that I deserved to be treated with kindness. Lost in thought, my attention was inward and I thought about the word “cathexis” and how it described this phase in my life. How my days are a vocation of investing my mental and emotional energy into these people I gave birth to with their special needs. I realized I was singing under my breath as I resumed cleaning up the bathroom.
“…It’s lonely out in space
On such a timeless flight
And I think it’s gonna be a long long time
‘Till touch down brings me round again to find
I’m not the man they think I am at home
Oh no no no – “
Owen overheard me and picked up the song with his version to interject, “Rocky man!”
He squeezed his eyes tight in delight with a face splitting smile as he giggled in pride at his joke. I laughed with him and paused to listen to something in the background. I put a show on for Owen and crept closer to the hallway to eavesdrop on Nora playing with her stuffed animals.
“…that’s right, I told you not to touch my hair!”
In a snotty tone, “You’re a big baby! Why don’t you go cry?!”
“You’re an ugly turd and my mama said so.”
“Hey, Nora, you have a second…?”