You know those scary kid shows like 'Goosebumps' and 'Are You Afraid of the Dark'? Well, I think I am ready to let Grace have a go. When I was young I could not get enough of R.L. Stine and other scary books and I get the feeling she might be just as interested. Who's with me?
I think she is old enough now and even though we constantly monitor what she is watching because she has been known to be a scaredy cat, these shows are tame enough to be appropriate and scary enough to be fun.
Did you know these were Canadian shows? Me either. I found them all on Netflix and I think this Saturday might be a scary Netflix marathon for Grace and I.
Any ideas for some creepy treats to go along with our fright night?
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?
I tend to get a lot of mail. Partly, kind letters and cards from you; some products to share and review and most recently an interesting little package that I stared at for quite awhile before figuring out its meaning. My friend Karen figured it out in under two seconds. Let's see how well you do:
Inside the package was:
A Terry's Chocolate Orange
Orange Nail Polish
A gift card for a restaurant (Kind of unrelated)
Don't look below for the answer. Be fair. Did you get it? What does this package represent?
Yes, you got it! Orange is the New Black. I am a huge fan. My latest obsession is Sherlock, however. Who's with me?
I am a huge fan of Netflix in general. I love being on their #StreamTeam and they are very generous and often send decadent little packages like this. In fact, I have been debating whether or not I need to keep cable or not? My children watch Netflix (Or strange videos of adults reviewing toys on YouTube) the majority of the time. My husband and I watch Netflix the majority of the time, too. Why are we paying a huge cable bill? The only answer we can come up with is for the sports. What do you think?
I don't love you more each day. I guess you could say I get more used to you each day but then who could ever get used to that annoying way you interrupt people all the time. And then, there's your incessant need to work out everyday and make the rest of us look bad. It might be fair to say that I get more annoyed with you each day, instead.
To be fair, I should mention that I do love you. Probably about the same as I did the day we got married. I mean, really, on that day, you were pretty easy to love. You were still on your best behavior and so was I. Plus, we had no kids, free alcohol and a little wedding cash so we were doing just fine.
We've been through good times and bad (just like they made us say in those wedding vows that felt so phony to us) and it's been kinda awesome, at times, and other times, it's really sucked. I still kept loving you, even when you went home for a nap after I stayed up all night birthing our second ten pound baby girl, so that's gotta mean something, right?
I can't imagine, that you love me more every day, either. Just this morning I slept past the alarm and left in a hurry for work, leaving you with two crying children to tend to and lunches to make. That had to piss you off, a little, right? You won't give me a hard time, though, because I've been in that boat so many times, too. We understand each other. Yes, we understand each other more and more every day. I can say that for sure.
You're pretty damn genuine, too. Like, really genuine, in a way I pray our children become. That part is pretty cool. I know you, and I know you don't expect me to love you more and more everyday. You don't need grand gestures or public declarations of adoration (and if you did I think you'd know you'd be barking up the wrong sleep-deprived tree). You just need someone to understand you. So, honey, I can promise you this. I understand you a little more each day.
I remember the day like it was yesterday. A day when my eldest girl, only four, decided she was too old for the toys that she had adored to the point of obsession for so long. She was sacrificing her best friends in favor of saucy ponies that worried about the style of their manes and princesses that dreamed of a prince charming. Woody, neither a gentleman nor a scholar, but a worship worthy hero in his own right, was left at the bottom of the toy bin trapped beneath discarded Barbie parts and long forgotten 'baby' toys. Jessie, his gender-stereotype smashing sidekick would suffer a less dignified fate when she would be found under the play table helping to balance an uneven leg. I rescued these two loyal friends as I knew our littlest girl would soon be two and they would once again find a loving embrace.
As the little one grew and autism was diagnosed, these two cast offs, would benefit from that diagnosis in a way that only a toy could. Not only did she love these two best friends, but she needed them; she ate, slept and breathed them. She perseverated on Woody and Jessie and their feature films like a maniacal little film critic. She learned to use language through them and to this day she has never let them go. They are as important to her today as the day she discovered them. She offers these toys a level of love and respect that is unmatched and I'm sure they give it right back. I'm not hard pressed to find positives in my daughter's autism diagnosis and I'm guessing Woody and Jessie might feel the same.
Did you know that my story, your story, your child's story is big business? Wanna know how I know? Because I am profiting off of it every single day. I am a blogger edging so close to 'writer' that it hurts and I am using my story, our story, her story, to showcase what I've got. I've got 'chops', I've been told. I've got 'voice' and 'heart', but if I were writing fiction would I be so popular? If I were writing children's literature would I be such a prize? It hurts my brain, you know. Every time I get paid for writing about our family and Kate, I wonder, if I am just another tool (so to speak) in this big business called autism. If you hashtag autism you'll draw in a crowd that is hungry for answers and for solidarity. A crowd that is desperate for help and understanding. I am one of you and I am using us for profit. I can pretend that spreading awareness is the goal but paying off the line of credit is the goal. Paying for Kate to have private therapy is the goal. Saving for her future is the goal.
Your story and my story and their stories are big business. People will take your money and in exchange offer you a small bit of comfort or hope. People will take your money and offer a false promise and a shallow hug. People, like me, will take your money because we know you will click and read on anything related to autism because you are so afraid and so alone.
Be careful, then. Be careful when you listen to the promises people will make to you. Be careful, when so called professionals have news of cures and answers. Be careful, when 'writers' tell their story. Be careful.
Sometimes, I am so overwhelmed by the massive amounts of shit information on the internet, that I can only cope by pouring a Jack and Diet and hoping, or denying, that I rarely contribute to the brain numbing, unbelievably dangerous misinformation about autism, and children with different needs in general, that permeates hyperfuckingspace.
Do you want to know the worst part? It sure as hell isn't the idea that the parents of children with autism are reading this bullshit. It isn't even the fact that professionals in the field are reading this drivel. The real problem lies in the frightening fact that some dangerously small-minded, open-mouthed individuals might read, and worse, share information that could potential harm our children.
I certainly don't profess to know all of the answers. In fact, I recently learned that I don't have any of the answers but I know enough to know that little tidbit and a few other things, too. For example:
Dairy Products DO NOT cause Autism
Ketchup Makes Everything Taste Better... Except Ketchup.
The Psychological assessment happened; the test that tells me that my girl is not okay. The test that tells me she cannot compete with her peers. The test that tells me that cognitively she is well behind where she 'should' be. I thought I would cry. I thought I would write about how unfair the system of comparing our Kate to one hundred 'so-called' average children would be.
The truth is, I don't care. It didn't hurt me in the least.
Kate walked into that assessment the same kick ass little girl ninja she was when she walked out. In her unique mind she spent hours playing with a 'friend'. She doesn't know the words 'test' or 'normal' or any such shit. Alex and I giggled when the doctor asked her questions that were well beyond her reach. Not in a cruel way, you see, but in a, 'you don't know our Kate' way. Alex and I talked about how phenomenal she is in so many areas. In fact, she'll make you smile immediately upon seeing her but she won't be able to tell you what she did today. She'll make you feel like a rock star each time you walk into a room but she won't be able to tell you the colour of a banana. She'll make you feel adored but she isn't quite sure how to hold a pencil.
What's more important? We think we know. We think Kate knows. We hope you know.