Well, I’m so glad you asked…*walks to podium and adjusts mic*
Let’s start at the beginning, shall we.
A few short years ago, in Disney World of all places, I attempted to dress Miss Kate up in a sparkly Princess Jasmine costume (her sister was all decked out as Tiana from “The Princess and the Frog” and I figured I would parade my two little princesses around the parks like most obnoxious visitors. Kate had other ideas because as soon as the bedazzled material touched her skin, she reacted as if the cloth was on fire. This might seem like a tantrum of sorts to some. Some kind of, I don’t want to be Jasmine, I want to be Belle or Buzz Lightyear, or Frank Underwood, or some such shit. Well, a mama knows, and I knew that this wasn’t a costume preference tantrum (though we’ve had a few), this was a full-on sensory blowout and it told me what I had suspected for months before. Our little girl had autism and it had been cemented for me at the happiest place on earth.
Since then, we been through a lot. Many, many hours of therapy (with great success) and all the ups and downs that come with raising a child on the spectrum. She began to manage her sensory issues much better. Chewy tubes and body brushes, weighted blankets and pressure vests, a body swing and a sensory lamp to name a few of the things we’ve spent load of money on to help Kate learn to self-regulate. There is really nothing we haven’t tried to help soothe our girl. These things combined with some intense therapies helped Kate manage some of the sensory issues that would send her into the dreaded meltdowns. There were many times she was carried kicking and screaming from the grocery story because the giant den of sights and smells was just too much, and (like rugby, as my husband points out) I just didn’t get it. We are in a better place now, because she has learned to self-soothe in many constructive ways.
So, she found her way back to costumes, only this time it was in the form of her first love and hero, Buzz Lightyear. Buzz was cool, and he had phrases that could be repeated over and over and would almost always elicit a smile.
Soon she would find The Teenage Mutant Ninja Turtles and their ninja ways would give her great comfort.
Eventually, she would find a whole league of superheroes she could pretend to be and she hasn’t slowed down a bit.
Now, I’ll attempt to explain why autism seems to be synonymous with Superhero. Lofty goal, says you? Nah, this is gonna be so much easier than introducing a new food, bedtime after a routine change or ‘explaining rugby to your uninterested wife’.
I think there are a number of reasons dress-up play appeals to Kate. Firstly, she is playful at heart, and this is particular exciting for us because play can be an issue for children with autism. Repetitive and ridged play can often hamper social interaction with peers. While, her play can be very structured and a bit one-sided, and this is a nice way of saying: it’s Kate’s way or the highway, she does seek to play with her peers.
The dressing-up seems to appeal to both her sense of fantasy and the fact that she very much relates to the characters she impersonates. She tends towards superheroes for the most part, though her closet boasts some seriously princessy costumes as well. Here’s why I think she relates to the supers of the world.
Superheroes have an alter-ego:
Just like a child on the spectrum, superheroes live two distinct existences. The one inside their complex brains and the one for the outside world. I wish I could express that idea far more eloquently, but that’s what you get. Superheroes also live two distinct existences. Is it possible that our little girl and her spectrum friends, in some way, make that rather abstract connection? You bet your ass it is.
Superheroes can be solitary:
Superheroes tend to live a very solitary life. Few Supers can relate to the average person because of their vastly different lifestyles. For kiddos on the spectrum, peers are great, but can be quite difficult to relate to, at times. They can’t possible understand the logistics involved in the organizing your toys just right while the seam of your sock just isn’t right. How could they possible comprehend the herculean effort a day at school can be with its people and their incessant and unrealistic demands?
Superheroes have different/special abilities/downfalls:
This is key. Superheroes have super-sensitive hearing, sight or strength, among other powers. Children on the spectrum also report many of the same abilities, only the real world application of such powers can result in some painful sensory-overload. Do you think Superman ever had a meltdown? Surely, he has.
Superhero language is often scripted and therefore safe:
Sometimes it can so hard to know what to say or how to react. Catch phrases such as Buzz's “To Infinity and Beyond”, TMNT's “Go Ninja, Go Ninja, Go Ninja Go” or Wolverine's "You know sometimes when you cage the beast, the beast gets angry" (okay, maybe that's a stretch for some) can often fill in when the right words just cannot be found. These phrases will often encourage a positive response from others (until they become a tad overused) and they are safe and reliable forms of communication.
Superheroes are freaking awesome:
Everyone loves a superhero. Except their nemeses (I had to look that plural up), of course. Why not adopt the persona of someone that evokes love and adoration from the masses. When it’s tough to fit it our little people have to find a way to stand out and still reach the rest of us.
As cheesy as it may sound to some, there are superheroes among us, and they live on a spectrum of which we can barely conceive. In fact, you might want to feel honored to be among them.
Dear Quiet Moments,
I suppose you think I yearn for you. You’re so cagey and rare that you probably think you’re at the top of my priority list.
You don’t even make my top three.
In fact, you’re rather dreadful. Worse than the dentist and a pap on the same day. Worse than two kids with the flu and an incontinent cat. And worse than the sound of windchimes.
The idea of you is so distressing that I wrack my brain for something to focus on should you be thrust upon me by some unknowing Grandparent or other kind soul.
I remember that last time I had a moment to think. It wasn’t date night because Alex and I are pretty good are filling those nights up with mindless activities that allow us to detach from thinking. It was a Sunday afternoon when Alex went skiing and the girls went to see Grandma. I noticed I was alone and frantically organized the house, avoiding only the laundry, because, please I was not that desperate. Once the house was in order, I began to sift through the pile of books beside the bed. Books that I had bought or borrowed with every intention of reading, someday. They are terribly neglected in favor of books on autism interventions but this would have been a great opportunity to have a go at one. As I was flipping through a fantasy novel that would have been perfect had I been able to get lost in it, my mind was infiltrated with the thoughts I spend all my cognitive energy trying to push out:
Did I do this to Kate?
No, that is silly. I am smarter than. I’ve read countless books detailing the link between genetics and environment in autism diagnoses. Experts haven’t blamed the mother for years; not since the ridiculous refrigerator mother theory.
I reached for a text to back up my thoughts and placed the fantasy novel back on the pile.
Wait…I can’t do this again. I need to spend some time on me. Maybe I’ll watch a little TV.
I turn the TV on and find I have multiple choices on our much neglected list of recorded shows.
As I scroll through I see we have twelve episodes of Teenage Mutant Ninja Turtles taped for Kate.
Funny Kate, such a boy brain, she has. I wonder if autism really is the ‘extreme male brain’ as some have suggested.
I wonder if I contributed to that when I forgot to take my folic acid. Or maybe I didn’t forget. Maybe I took those vitamins religiously. I can’t remember. I remember I drank root beer a few times. Probably a diet coke or two. That can’t be good. I know I ate feta cheese. There is something about feta, isn’t their? I flew to Boston. Has anyone studied the effects of air travel on the fetus, yet. I’m going to check…
On and on this will go until I can root myself in an activity that is either more meaningful or mind-numbing. Either will do, I don’t really care.
??:?? am - Wake, grind the palms of my hands into my eyes and search for the glowing numbers that will either start my heart racing or put my mind at ease. Does it really say 8:88? Rub eyes again, take another look. 4:19am. Make mental note to contact optometrist. Roll over, attempt sleep. Brain laughs and laughs. Brain decides to run through a list of things that are currently causing me great anxiety. Eyes snap open and Brain is told to shut it down. Brain fights to be heard, so audiobook is implemented to shut out brain. Audiobook is just the right amount of murder and intrigue and Brain settles down. Prepare to sleep for two luxurious hours...alarm sounds rudely. Palms to eyes, take in the clock. 6:20am. Did I sleep? Fuck.
6:27am- Black cat climbs up and snuggles in. Cat is soft and warm. Considering surrender when youngest child pokes eye to encourage wake-up time. Youngest asks: "Is Terry Fox dead or dead-dead?"
6:28am- Encourage child to ask Teacher. Usher child to bathroom to begin morning routine. Pretend thirty-five minutes will be more than enough time to get everyone ready and out the door. Feel gratitude that husband chauffeurs kids to school.
6:44am- Silently celebrate finishing shower and getting dressed in record time. Make lunches. Watch husband make breakfast. Scroll phone for four minutes, feel guilty.
7:04am- Kiss children, grab purse, forget lunch and rush out the door, feel guilty.
7:11am- Arrive at Tim Horton's to order coffee. Fight the urge to order a pumpkin-spice muffin and lose.
7:20am- Make the highway without an traffic to speak of. Regret muffin, but not enough to not eat it. Feel guilty.
7:50am- Arrive at work. Enter classroom and finish coffee while computer boots up. Wonder if 'boots up' is still a computer term. Decide new winter boots are needed. Wonder if LLBean has any boots on sale. Wonder if LLBEAN was a real person. Decide to google for answer. Feel confident that question is crucial and relatively more important than preparing for a classroom of five-year olds.
Leon Leonwood Bean (October 13, 1872 – February 5, 1967) was an American inventor, author, outdoor enthusiast, and founder of the company L.L.Bean.
8:10am- Bell sounds. Students rush in. Lesson plan comes up. Day begins.
8:15am- Student A raises hand: "I have an uncle and his name is Alan." Inform Student A that though this is a lovely anecdote, we must get to our morning meeting and start our day. Student B: "My cat likes lemonade." And so on.
8:16am-3:05pm- (The School Day) Imagine trying to teach the cutest bunch of kittens to knit when they just 'don't wanna'. Still totally worth it, because of the cute thing, mostly. Mid-day, feeling utterly exhausted when the Principal approaches me and asks about a little girl with a terrible cough. I inform the Principal that the little girl has swollen testicles. Principal informs me that the word I am looking for is: tonsils. Principal kindly laughs.
3:30pm- Sit at desk to prepare for tomorrow. Prepare to leave instead. Decide planning tomorrow's day at home will be a safer bet.
3:55pm- Pull into driveway and sit in van longer than necessary to hear end of audiobook chapter. Decide to ask husband for iTunes cards for Christmas to feed audiobook obsession.
4:00pm- Enter house to be greeted by children. The eldest wishes to discuss potential new Fall Wardrobe. The Youngest wishes to discuss the death of Canadian Icon, Terry Fox.
4:40pm-Youngest asks for food. This can only be one of her two meals. Pita bread and peanut butter or Pesto on flatbread. Reach for the pita bread and pull out the last slice. Shit, shit, shit there are dark marks on it. She is going to notice. This batch of bread looks different from the other batches. Try to cover the dark marks with distraction while handing the child the pita bread. Walk quickly back to kitchen to begin next "meal".
4:41pm- Youngest shouts: "Mama, my bread has dots on it!" She then promptly places the pita in the garbage and reaches for goldfish. Pretend not to notice and pray that husband didn't buy the whole grain goldfish by mistake. Feel guilty.
4:45pm-Remove packaging from frozen lasagna. Feel guilt for not cooking fresh lasagna more often, for not cooking from fresh more often, for not cooking more often.
5:30pm- Husband arrives home. Surprised he isn't tasked with cooking our meal, is pleased to smell lasagna. Makes no comment about its level of freshness.
6:05pm-Youngest child wants to talk about her birthday again. Time is abstract and a difficult concept to understand so is often confused because her birthday is not 'tomorrow'. Have the same discussion about her May birthday that we've had most days since May.
6:17pm- Eldest decides she needs an Instagram account. She is instructed to 'ask her father'.
6:18pm- Exasperated by what has been a relatively uneventful day, state: "Is it bedtime yet?" Make same tired comment every evening. Husband no longer politely reacts. Beginning to annoy myself.
6:19pm- Announce the following words to no one in particular. HOMEWORK, BATH, SNACK, BOOK, and then BED, let's go! (Ipad time if you're good). No one moves.
6:20pm- Decide I will read my book and ignore everyone if they plan on ignoring me. See how they like it. Yeah, they'll come running when they see how hard the bedtime routine is without me.
6:22pm- They don't appear nervous.
6:24pm- They don't appear to notice my aggressive stance on tonight's bedtime.
6:25pm- Husband yawns
6:26pm- Turn pages of book angrily without reading a word.
6:27pm- Husband: "Did the kids do their homework yet?" Kids jump to attention.
7:09pm- Homework and baths complete, snack being prepared. Youngest is eating flatbread and pesto. Eldest is eating apple slices. Finally, something to not feel guilty about.
7:33pm- Eldest wishes to read a book about kittens. The youngest finds a book on Terry Fox.
7:45pm- Children rewarded with ten minutes of screen time for reading. Wonder, vaguely, if this is a parenting mistake. Shrug off the guilt for this one in favor of wallowing in guilt regarding the elation that bed time is near.
8:00pm- Remove screens. Tuck children.
8:01pm- Sit down.
8:02pm-Scour DVR for mindless entertainment to play in the background as I prepare to lesson plan.
8:03pm- Youngest calls: "Mama, Terry Fox is my best friend, but not my real best friend, but my dead best friend ok?"
There are days when I can’t bring myself to write. Which is strange because, for the most part, I need writing, like I need air or sleep or the expensive towels. Basically, it’s rather important to me and my mental health. So, it surprises me when for weeks and sometimes months, at a time, I can hardly produce a single sentence.
Maybe it's because I am back to work. I love my class but working for a living can be a drag, can't it? What did Oscar Wilde say again?
Work is the curse of the drinking classes
I'm a selfish writer. I know that. I write what I want, when I want and share only what suits me. It’s my blog, after all. Even though, there are those that feel it’s a direct line for their complaints.
I suppose you have every right to have an opinion about what I write since I insist on sharing publicly. Many of you share with me your almost entirely constructive criticisms. I think they make me a better writer, don’t you?
What the hell is she going on about now? (RaisingaPrince)
She swears too fucking much. (Patriots12)
Why should we care about autism? Isn’t there a vaccine for that? (MrSmith)
And my personal favorite:
There is not enough vomit in the world. (BeerMan)
But it’s not the negative attention that slows me down, or the lack of remuneration. After all, I get paid small amounts of American dollars for writing listicles each week but have never brought in a penny for writing here, on this blog. I can bang out ‘17 Reasons Cake is a Breakfast Food’ in my sleep but to tell you anything else seems nearly impossible at the moment.
So, why am I stuck? Why am I sitting here writing about not writing?
I have no idea, which is strange because according to Anonymous1967:
This asshole is a friendless know-it-all who could fill a book with her specific brand of bull-shit.
Anyway, guess I wanted to tell you that we are still here.
I’m not done sharing our story.
Grace and Kate's mom. (Shanell)