“In Tut’s tomb, along with his coffee, two tiny coffees were also found -”
I stopped mid sip on my coffee and asked, “What?”
“Yeah, Tut was in a tomb with coffee…?” She trailed off with a questioning tone as I held out my hand for the book. She giggled and covered her face, “Oh, no, I did something funny again!”
I set down my coffee and pointed to the word “coffin”.
“”Coffin” and “coffee” are very different.”
She crashed her head under a pile of pillows and laughed with embarrassment, “Oh, no! I know that!”
“You see coffee is what keeps mama from feeling like I need a coffin and a coffin is where I’ll finally get to sleep.”
“No, no, NOO!” Her face suddenly was without humor, “I don’t want you to talk about it.”
“Talk about…talk about what…oh, ok, I’m sorry…bad joke, I’m sorry.”
She climbed into my arms, attempting to sit upon my lap but mostly resting her front half along my lap. How did this being come from me? How did this wondrous person come into my life?
There are still moments I feel as if I’ve stumbled upon a mythical creature that just happens to be in our house. Not all that unlike a unicorn appearing beside you on the couch. Or the feeling of a wild animal happening upon you as you sit on your front porch in suburbia. One of you no longer seems to belong yet the other’s existence is simply magical and unquestioningly beautiful.
As I sit and eavesdrop on her home instruction I listen to her read through a list of words to assess her reading and hear her ask, “Do you have any big kid words?…”
The past few weeks we’ve been working on decorations for her Halloween playdate that she had invited a handful of friends to with invitations she decorated and mailed. To her it was a huge undertaking to invite people and she fretted for weeks over what to say, what to play, what we would eat, and whether or not her friends would have a good time.
She decorated gift bags, ghost treats, organized and reorganized her toys and room, and then the day arrived. She was anxious until the first person arrived and was overjoyed when her friend, Evie, appeared at the door. Her mother and I immediately fell into conversation and I gave the girls space to reacquaint themselves with each other. Once their energy died down and another friend arrived, I suggested a game of dressing each other as mummies.
The crepe paper came out and the other two girls weren’t interested in being in being wrapped in paper but delighted in wrapping Leonora up as a “mummy”. Once her stationery bandages were complete, I took pictures of what looked like an oversized cumberbun and asked her if she was having fun. “Yeah, my friends are here and they liked making me a mummy.”
I laughed and jested, “Hey, I thought I was your “mummy”?!”
She smacked her forehead theatrically and rolled her eyes, “Ma-MA! You’re not a mummy your a mommy!”
I pretended to be embarrassed, “Oh, no! You’re right, I’m so silly.”
She giggled and ran to rejoin her friends. I paused for a moment and thought about how others view her. How they see such an exchange like we had and her playing with her friends and rightfully might be confused enough to ask, “I don’t get it, what’s the problem? She seems fine to me…”
Yet those same people weren’t here to witness the last few weeks of anxiety about whether or not their children would arrive. Would those same children like her costume. Would they like the food. Would they like her games. And, yes, a lot of kids have the same moments or anxiety like her yet they don’t stim and suffer from panic attacks. They don’t pick at their skin and scratch themselves worrying over such things. Autism is a difficult disorder to explain to people unless they’ve lived it, or lived alongside it, day to day.
Even with limiting the amount of kids, asking parents to drop off their kids and not stay, and making sure that things were loosely on schedule. Things inevitably became chaotic as the sugar set in, the toys were losing their charm, and the walls began to close in on us all as their energy became boundless and we all competed to be heard.
She hit a breaking point. We prepared for this and I reminded her that it was ok to take time to herself and rest in her room. Her friend Evie asked after her, “Is Nora ok?”
“Yes, honey. She just needs a minute to herself and then she’ll come back to play.”
I stayed to watch from the doorway. Near enough to reassure her but far enough to give her privacy. Her little body rest in a fetal position holding her stuffed giraffe aptly named “Rainbow” given that it looked like something regurgitated from the imagination of a toymaker who enjoyed raves. She was silent, unmoving, yet awake and listening. She stared out the window sleepily that way for half an hour until her friend, Evie, was leaving and I reminded her of that fact. She returned to the party and no one commented or seemed to notice her sudden departure from the games. The party had continued without her and yet it was as if she had never left and seamlessly resumed her activities.
Only five kids at the most were present at any given point yet to her it was “a lot of people” and to them they were accustomed to her needing breaks or wanting space. They’re a good bunch of kids and I’m thankful that we’ve found them for her. Like most, just because I like someone doesn’t mean their kids are going to like mine or vice versa. Additional obstacle, even though the parents are accepting of us doesn’t mean that their kids are.
It’s the small realizations like this that have become common place for me. Not just as a parent but as a parent of kids with special needs. I tell myself I just need to make it through the hour, the day, the week yet the implication is that things will suddenly get easier or better but they don’t. There’s always going to be an extra layer of challenges that I can’t expect others to understand anymore than they should expect those to disappear. Circumstances will change, things will be different, but autism is an inextricable part of our lives.
It’s implied at times when people ask after them. That hanging silent question of them getting “better”. Does anyone’s kid get “better” when the most we hope for is that they grow? Autism isn’t a physical ailment per se and it certainly isn’t curable so why is it that people inquire after them as if they are ailing from a disease?
I mark down meltdowns in a log, sleep cycles as well, and I remind myself to do so is to search for patterns to help them, not to cure them. They won’t outgrow being autistic anymore than I’ll outgrow my personality. As I jokingly say to my husband, “Once an autistic, always an autistic…”
We have moments between us now where we share our epiphanies about autism and even have personal jokes. It’s taken a few years for us to get to this point. We share our fears in those rare moments when we’re away from the kids. Those questions that we barely can speak.
Will they always live with us?
Will they live indepently?
Will they be able to go to university?
Will they be able to maintain a relationship, or family, of their own?
What will their lives look like once they’re adults?
Will they be able to travel or negotiate the difficulties of finances?
What will the world be like for them in the future? Will they ever feel accepted?
Will I forever have the Big Block Singsong songs stuck in my head?
(The answer unequivocally is, yes.)
Will Owen ever grow out of his obsessions for wheels?
Will Leonora ever stop loving the color pink?
Will Owen ever learn to not hug stray dogs or lick cats?
Will Leonora give up her love of dancing spontaneously in public?
To all of those questions I can only theorize. I’ve stopped myself from thinking about the possible outcomes any longer because the only ones that have control over those are my children and, at times, the world around them.
We’ve been consuming every “Who Was…” book written. Leonora has an endless curiosity for biographies. The latest is King Tut but her favorite is Susan B. Anthony. She insists on reading the books on her own and our compromise is that she highlight the words she doesn’t know so we can review them later. This compromise is not strictly followed since she still attempts to guess the pronunciation of words without my assistance.
As I sat and wrote this I listen to her reading aloud to me.
““…King Tut’s “mommy” was buried with many treasures…”
I stopped and looked at her. She covered her face and began to laugh.
“A “mummy” is buried with treasure and a “mommy” is expecting her treasure!”
We both laughed and she waved her hands at me, “Ok, ok, OK – “MUM-y.”
I tickled her and she sighed against me.
“Hey, mama? Can I switch books now?”
“Of course, which one?”
“Susan B. Anthony?…”
“Ok, go for it.”
She settled in beside me and resumed her reading from the footnote about Quakers.
“Quakerism is a “ridiculous” sect…” (I bit my lip and added “religious” to the word list.)
She looked up at me questioningly as I clearly couldn’t contain my laughter. I answered with, “Well, once a “mummy” always a “mummy”.”
She shook her head and groaned in amused exasperation, “Ugh, grown ups are weird.”