It was time to get Kate's haircut and we decided to get that old hair out of her way and give her the punk rock, gender bending, haircut our little rock star deserves. Do you like it? Wait, don't answer that, because it doesn't matter. She loves it. That matters. She is happy. That matters. It is far easier to fight bad guys with out all that hair in the way.
Happy at the hairdresser. If you would have told me this one year ago, I would have laughed and laughed and then I would have made you take her for a haircut.
She's tall for her age with a haircut so chic you'd think she prefers the runway to the racetrack. She's convinced she's a boy right now with her race cars and her light sabres. It doesn't bother us in the least. In fact, we called her 'little fella' as a toddler because she exuded all those characteristics we so often associate with boys. Neither my husband nor myself tried to deter her interests. In fact, we often get a kick out of her penchant for trucks and superheroes. The autism has taken her love of Ninja Turtles and Spiderman to a level considered inappropriate by some but we envy her ability to adore something so wholly and so authentically that she gets such joy from it.
She's getting older now. She cannot be considered a toddler anymore. She's still painfully cute and except for a few cranky-pants people she still gets a smile from every stranger she hugs. Her behaviours, the ones that make us smile because they are so 'her' are the same behaviours that confirm her diagnosis to those around us. Her lack of fear both thrills us when she tries to make a friend and terrifies us when she bolts from my arms in a parking lot. There are so many conflicting emotions it is exhausting at times.
Her vocabulary is so extensive now. Just today she ran from her room and raised up high on her toes and said: "Mama, I am Peter Parker and you are bad guy, ok?"
I remember the days when I would have counted the words in her sentence and immediately called my husband at work to tell him. 'Eleven Words!' I would scream into the phone and he would cheer from his desk. There were days when she said none and only cried or hit us. There are no more days like that. She hits still but no those attacks are accompanies with beautiful and clear angry words and we appreciate it every single time. We don't have conversations yet, because back and forths are tough but she can express goings on if they are 'in the moment' and sometimes feelings, too. You should hear her script an episode of TMNT. She kicked pretend play's ass this year, too. She's come so far.
I'm watching videos to remind myself how far she's come. I thought you might like to see them, too. In the first video there is a lot of babble. I think I can make out "Are you serious?" at one point but otherwise she is resorting to nonsense words. In the second video just five months later she is once again angry at me :) but it is very clear why. For the record, I didn't 'take' her treehouse. ;)
I am not sure how healthy this is to admit, but the truth is Netflix has become my new obsession. I hide my addiction like a prison boyfriend but I can easily binge on a whole season of Damages in two days. When you ask me to do something on the weekend you are really competing with Netflix.
And sometimes, just sometimes this outstanding mom will set Kate up with a string of Spiderman shows and plug Grace into an exciting adventure show so she can get just one more episode in before it's time to cook supper. Haha, just kidding....I don't cook supper.
Anyway, you'll be happy to know the bulk of our Netflix indulgence happens long after the kids are in bed, but in the spirit of being honest, I do appreciate the times when they decide they want to satiate their need for Netflix because I am tired. I am 'wake up in the morning and immediately think of going back to bed' tired. Who's with me?
So, to the other moms and dads who look at their phones too much and gorge on Netflix and cook from frozen and drink from a box and turn down invitations because Netflix doesn't ask questions...I understand.
I know I've written things that have riled you up. I know I've written things that have pissed you off. I've even penned a few that have made you cry. That's the point. To start a conversation. That is always the point.
If you think my title references my power, you're way off. I might have your ear once in a while, but Kate; she has you. She draws you here. Her innocence, her authenticity, her complete and utter devotion to all things superhero. She is making you, and me, think about and question everything we thought we knew.
When you find yourself on the side of the majority, it is time to stop and reconsider.
~ Mark Twain
Much of this is not my reality but it is the reality of many people whom I call friend. So please, I want you to read this with as must seething anger as I feel when I type it:
Despite what Hollywood would have you believe, autism isn't always a visionary version of genius, a different processing unit, or the quirky side of normal.
Autism IS a neurodevelopmental brain disorder. Autism can make people's lives very scary and confusing. Autism can and does hurt children and their families.
Here are some terms that many live with:
Intense Behavioural Intervention
Little to No Awareness of Danger
There are many more.
Autism IS NOT A NEUROTYPE that should be celebrated. When you posit such bullshit you tell the world that we do not need research, therapy and medical attention for autism. It is both irresponsible and dangerous.
In no particular order:
"Where do you live?"
I'm NOT your friend, unless I AM your friend. So, please don't try and come to my house. I have a team protecting us, remember?
"Do you pray?"
Once, in college
"Does Your marriage suffer because of Kate?"
Nope, it suffers for all the regular reasons. It's great, too.
"Do you have autism."
Not that I know of.
"Do you think your girls will be angry at you, for sharing so much about them, as they grow older."
I sure as hell hope not. I like to think they'll be proud.
"Do you feel like you've 'sold out' now that you get paid for writing and featuring products?"
If by 'sold-out' you mean 'thrilled to be paid for doing what I love', then, yeah, big time!
"What does your husband do?"
He's an engineer, but not the kind that drives a train.
"What do you do?"
I teach. All day, every day. I hope I am doing it right now.
"I write, too. Will you share my stuff?"
Sure, if it makes me laugh, cry or inspires me, in some way, I would be happy to.
"What causes autism?"
A number of things, ranging from reality television to breathing while pregnant. Take your pick.
When I dream of Kate, she is chronologically the age at which I feel her social and verbal skills would be appropriate and it guts me every time.
Why does it matter?
She's getting so big. Every time I look at her I can't believe she's ours. This little turtle-loving doll, that gives so much more love to the world than she could ever take, is our girl.
She starts preschool soon. I know she doesn't really fit in. I know she doesn't really understand. None of that matters. She doesn't care about what I 'know'. She doesn't care about what you 'think'. She's just happy and ready for whatever comes, in the most authentic and pure way.
She thinks you're wonderful, you know.
She's maybe never laid eyes on you, but the day she does, if you let her, she will show you how amazing she thinks you are with hugs and smiles and babble that means she is so excited to be with you she's temporarily lost her language. Her arms will flap like she's about to take flight and she'll be up on her toes because she is thrilled to be with you. Can you imagine how good that feels for us? She greets us like that every single day.
She's getting better at answering questions. We've been working really hard. If you ask her what her favourite turtle's name is, she'll touch her chin and look to the ceiling (because she knows this is how one 'thinks') and she'll say: "Hmm, wet me Fink?" And then she'll say: "Waph" because Raphael is the coolest turtle these days.
Her world is changing again. I hope her new world will be as good to her as she is to it.
I'm getting all caught up in it. The attention, I mean. It's starting to feel twisted. I write or post or comment about something that has happened to our perpetually overwhelmed family and you immediately feed me with attention worthy of the curated content I am feeding you. I know it. You know it. We all know it. I wanted to write this to start a conversation. I don't want an internet war because I can tell you right now if I can't win I won't play. I just wanted to engage you in a conversation about something that has been bugging me lately.
Do our blogs, books, essays, posts, comments, charities etc subvert the efforts of the strong, educated, powerful and fierce autism parent? Does our tendency to offer post after post of pity porn for your heart breaking pleasure corrupt our cause? Is all press good press? What do you think?