My youngest was diagnosed with autism at the goddamn peak of the anti-vax movement. I’ve written loads about that time but I haven’t yet been ready to share the intimate details of my righteous anger regarding the anti-vax movement and how it affected us directly then, and even now.
Let’s start at the beginning, shall we? Two years before Kate was born, we had Grace. Sweet Grace, who doesn’t say much, and is a sensitive soul, was our first. She has many vaccinations leading up to her 18 month shots, and we asked no questions, because as a teacher and an engineer we decided to leave the science to the scientists. However, on the day of those infamous 18 month shots, our nurse informed us that our little Buddha baby was going to get three needles. As first-time, overprotective parents, we inquired whether we could split those needles up, just in an attempt to save our Grace from the pain. Our doctor, who I remember as a very sweet, very smart, resident, said the following: “Do you take medical advice from Jenny McCarthy?”
(Disclaimer: This WILL NOT shit on Jenny McCarthy or any other mother led down the wrong path by con-people and the like. I am merely re-telling my story)
Having less than zero knowledge of the anti-vax movement at this time in 2008, I answered, “No”, thinking my doctor was a little odd. Maybe I should have been aware, but after a brutal pregnancy, I was far from up to date on current trends.
The nurse went on to give Grace her three needles and we went home, and continued our sleepless first year.
Over the course of that year, the strange “Jenny McCarthy” commnet began to make sense. I shrugged it off, grateful, that I didn’t get sucked into the drama, and continued on my journey to make that second, most awesome baby, we called Kate.
Now, with Kate, we were very careful to follow doctor’s orders from conception on and will continue to do so, as we do for big sister. The difference was, with Kate, the anti-vax movement was strong. Close friends and neighbors, and even some family, had comments to make about whether we would vaccinate our second born.
We scoffed, of course. We were going to vaccinate our baby, because we knew that vaccinations caused ADULTS, and we so wanted our babies to grow old.
No, I won’t pretend, that hearing these things over, and over, from people I respected didn’t make me wonder, think, question our decision for a moment, but in the end, thankfully, we let the science do the talking and fully-vaccinated our second baby, as well.
It was soon after that we noticed Kate was missing those damn “milestones” that baby books and baby shows, and other parents consider crucial (which is a whole other crock of shit if you ask me).
We were worried, of course, because Kate wasn’t talking, or making eye-contact. She was experiencing, what we now know is, major sensory-overload, and meltdowns that would shake up our home. She was toe-walking and had a very limited palette (many of these things are the same today, and that's okay)
(Disclaimer #2: Please do not try and diagnose your child, grand-child, husband, cat, whatever, with the symptoms I have listed here. Just as with vaccinations, see your doctor, please). Our Diagnosis story can be read here.
After the diagnosis, which happened relatively quickly thanks to a brave family member who had the courage to chat with us about the possibility, we barely had time to process when the comments started:
Did you notice things were different after her 18 month shots?
Well, yes, yes we did. It’s because so many of those milestones she missed were due to come out right around then, but yes, you go ahead and make me feel like a shitty parent for vaccinating my baby, Barbara.
Did she act differently the day she was given the 18 month needles?
Yes, yes she did. She had just been given three needles after an hour long wait in the doctor’s office, Janet, and she was rightly pissed off that day, but you go ahead and tell your whole church group that things changed immediately after her vaccinations.
And so on….
And you know what really sucks.
Beyond the guilt laid on parents and caregivers, beyond the guilt we take on ourselves, for so many reasons, you tried to add more. And worse….
What really hurt was that people then, and EVEN NOW, would rather risk the death of their child from a formally eradicated disease such as measles than have a child, with autism, like mine.
We know vaccines don’t cause autism.
We know the harm the anti-vax movement has done to so many, and still some of you would risk it, to prevent a life like mine. To prevent a little girl like mine.
She’s perfect, you know. You have no idea.
That makes me angry.
Not just angry that you are stupid, but angry that you don’t know how stupid you are.
Now, go vaccinate your babies.
It’s boring, to me, to discuss whether normal is a word we should attribute to the typical population, so I won’t. Instead, I’ll just say that among the normal crowd, is a place our youngest doesn’t reside. She instead, with her autism, her neurodevelopmental differences, lives in a world of her making. She does not, and has never, given a feeble shit about whether she is normal or not. In fact, her existence, to date, seems to rival the very idea of ‘normal’, ‘typical’ or, ‘conformity’. Her confidence in ‘who she is’ to use a weak phrase meant to encapsulate the entire idea of connecting with yourself at your very core, is so firmly bold, courageous, and maybe even a little cocky, that it might make you question whether being typical is preferable, at all. Maybe the idea is to be content and to be content you have to rock the wrong side of typical?
Do you feel bad for her, when she loses her words when she is frustrated? Me too. It breaks my heart when I think her brain is defying her. But lately, I wonder. I wonder if her anger and frustration are born from moments of losing that assurance that she is verifiably awesome in every single way. Maybe those moments of frustration are a small price to pay to never live with self-doubt, anxiety, mistrust, and a general sense of existential dread.
Yeah, for me too.
To be less dramatic, I’ll say it like this:
Don’t for a second think I am suggesting my little girl is ‘blissfully ignorant’
I am trying to tell you that she has figured it out. She understands who she is and why she is and she doesn’t care to prove it to anyone, but herself.
It this a result of her autism?
I don’t know, but it seems likely.
I won’t deny that there are dark days for her but I will say she has far fewer than the rest of us.
I know, I’m not the first or last parent dealing with issues such as this. I fully comprehend that I am standing on the shoulders of giants here. I’d just like to talk this through with you, if you’ll let me.
Autism and The concept of Time (or at least Kate’s autism). I preface that again, to remind you that no two children with autism are alike.
If a six year-old, or a sixty year-old for that matter, asked you to give them a definition of time, what would you say?
I have no idea, either.
Google gave me this:
While those definition are lovely, they do nothing for my daughter Kate. She is currently working very hard to comprehend the concept of time as it relates to her. She will work on its relation to other people when she gets a spare moment but first things first.
Time is fluid for Kate. That’s the only way I can manage to describe it. For example, when she draws a picture of her family, our ages don’t always match what we are at present. She likes to draw herself older than her sister (which is no surprise) and she likes to draw me young like a child with her. Her father gets be ‘old’ and sometimes even gets grandparent status in her drawings, ha!
Kate also asks about her birthday, every single day. Her birthday is in May. A few years ago when she began to comprehend that a birthday was like her very own toy party, she began asking for her birthday every single day after. No matter what I tried, I could not make her understand that there would be a long passage of time between her birthdays.
We are currently working on “sleeps” (as many parents do) and it sometimes seems to work. For example, I can say:
“Kate, there are four more sleeps before we go to the zoo” at which point the teenager in her will yell ‘that’s like 84 minutes!” And scream with disapproval.
As with everything else, these things (so far) will come in time. We are fortunate that way. For now, we will patiently count sleeps, read social stories and calm the anger and anxiety that 'time' creates as best we can
If you have a child with autism, like many of you reading this do, you’ll know about social thinking programs like SuperFlex that do wonders for some kids on the spectrum. Our Kate is one of those kids. Among her struggles, is some serious faulty thinking. If you’d like to explore Superflex further, you can check it out here (this is not a sponsored post, by the way ) but for the purposes of this piece, I’ll explain some of Kate’s issues with the “The Unthinkables”.
Superflex, in my most uneducated explanation, is a program that consists of a superhero, the titular character, that spends his time working to defeat the ‘unthinkables’ which consist of a motley crew of mischief-makers that cause a person to struggle with self-regulation, social behaviours and communication difficulties. If that sounds like your child, welcome to the club.
The three unthinkables that frequently bother Kate (and subsequently, the rest of us) are called:
Rock Brain: This guy is a major pain in the ass. He gets a kid stuck on a topic, subject, rule, expectation, you name it, and it is near impossible to get him to let you be flexible in your thinking. Here’s an example:
Kate: I can’t wait for My Birthday
Me: Your Birthday is Eleven and a half months away, Kate. Could we take a few months off from talking about it everyday?
Kate: Do you want to see my Birthday list?
Me: Why don’t we wait until closer to the day.
Kate: Is it tomorrow?
Me: It’s many, many sleeps away.
Kate: So three sleeps?
Me: More like three hundred sleeps?
Kate: So should I start inviting people?
(and so on...)
Kate’s birthday is one topic that she gets majorly stuck on, but it can be seen as funny, even if somewhat exhausting.
To be fair, though, the ‘getting stuck’ part can actually be quite debilitating if it stops your child from moving on and navigating their day.
There are far less charming examples that actually cause some pretty difficult days in our home but I don’t feel like sharing that, right now. More out of laziness than concerns over privacy.
This silly unthinkable tends to play the same joke over, and over and over and over again. I cannot tell you how much Kate loves playing practical jokes (or her version of them, anyway). For example, she takes the batteries out of the remote control and she laughs every single time we fall for it. It simply never gets old for her. It does, however, get old for the rest of us.
She has a rubber pencil and a bottle of fake spilled glue and a water squirting calculator that give her so much entertainment. How do you tell her peers that she doesn't understand that it isn't funny the second, seventh or seven hundredth time?
This unthinkable is pretty obvious, I think. Energy Hare-y keeps Kate’s energy level at full tilt from morning until night. She’s busy and actually talks non-stop (even when she is alone). All the sensory input from her day comes out of her mouth and her non-stop limbs. This is why she is playing basketball. She isn’t entirely sure what the rules are, but she gets to run and jump a lot so she’s happy.
Just my two cents for what it's worth.
Happy Social Thinking!
Once, before I had children, when autism was not the subtext of my very existence, I thought I might be happy if I settled down with a nice person and found a job that paid enough that we might have a middle class existence. I, of course, wanted to travel. I wanted bi-annual vacations with my future family, and at least one real designer bag. I thought I might exist like that for many years in a sort-of happy, unassuming state. I would teach other people’s children for what passes for a livable wage and I would raise my own children to be strong and feminist and everything would be just fine. I wanted a little drama in our lives, but just the good kind, like when you see your neighbor being arrested for money laundering or racketeering (what even is racketeering?)
And then autism happened. My beautiful second born was diagnosed and I fell apart and more importantly re-assembled into a most unrecognizable person. Now, I still wanted the aforementioned things in my life but now I wanted more.
I wanted to study autism obsessively so I could prepare my youngest for the world. I did this for awhile but it was less productive than one might think because knowing and doing are so far from each other in this arena it’s almost comical...almost.
I wanted to advocate tirelessly so I could prepare the world for her. But there were times when I did get tired and do get tired so I’ve learned to pace myself on that one.
I wanted to write down everything I thought about, worried about, dreamed about, obsessed about in case there were others out there like us, that might relate in some way. And I began to wear out a little because the confessional narrative is cathartic, sure, but it can also be exhausting.
I wanted to burn it all done and build it back up again so many times I’ve lost count.
I wanted to celebrate autism and respect autism and destroy autism and wrap autism in a bow and deliver it directly to Hell. (Clearly still a penchant for the dramatic)
I began to want bigger things for us, for her. And it surprises me even now that they aren’t all autism related.
I wanted more.
More for her, and more for us. I wanted to remember there was ‘a rest of us’ in all of it.
And that’s what I am currently working on. And that’s enough for right now.
Except, I would still like that designer bag.
I’ve been absent. I know. There is hardly a good reason, except we had a great summer and I didn’t feel the need to document every minute of it. I guess my extended break from the computer can be attributed to spending lots of time doing things instead of thinking about things and if you’re anything like me, you’ll know that getting out of your head for an extended period of time is good for the soul. As a classic, over-thinker, I can sometimes create entirely false scenarios to fret over. For some reason, after forty-one trips around the sun, I don’t even much energy for this kind of thing anymore, and frankly, it’s been liberating.
Having said that, I will say, that I am not done writing, and I am certainly not done sharing, because I get so much more than I give when I tell you guys our story.
So, how about a quick re-cap to get you all caught up:
Things have been good. The girls have been good. Alex and I have been good.
Now some housekeeping:
I’ve been doing some mixed-media art as some of you already know. I’ve even sold some of it to people I’m not related to. It’s been a therapy, much like writing, that helps calm the thoughts. The girls also spend a lot of time creating in our ‘art room’ as we like to call it, because ‘studio’ implies that I think I am a ‘real artist’ and that’s just too much pressure for me.
When I spend time up there, throwing layers of paint and ink and paper down onto paper that is far more expensive than paper ever should be, I work out a lot of things that might plague my already overwhelmed brain.
I guess, I’m curious about what things do that for you?
Alex likes to Fish.
Grace likes to Dance.
Kate likes to make videos.
What do you do?
Anyway, I just wanted to quickly check in and tell you I haven’t disappeared and I shall be back to discuss all those autism-related things that we love to ponder over.
I know you think you’re being cool. And in many ways you are. How refreshing; an establishment that allows pets. You can shop with your Shitzu or have a beer with your Boxer. It’s kinda great, right?
Here’s why this is a problem. Don’t get me wrong, I love animals. In fact, I prefer them to the rest of you if I’m being honest, but here’s why the luxury of having your lizard at the liquor store sucks for some of us.
There are Service Animals in your city that have a very specific skill set and when faced with the smells and antics of other animals it can be extremely distracting and difficult for them to focus on their task.
Now, I know any asshole can throw a “fresh from e-bay” fake service vest on their designer dachshund and claim emotional support, but most of us can sniff those jokers out in a heartbeat.
I’m talking about the real deal here. The Assistance Dog International Certified, professionally trained Service-Dogs that spent years perfecting their skills before they were even placed with an individual.
I should know. My daughter has one. His name is Oakley, and he’s a National Service Dogs graduate and the most beautiful ninety pounds of Labrador you ever did see.
If you want to know more about how what Oakley does for my daughter you can read this, or this, or even this. But for the purposes of this manifesto you’ll have to take my word that he’s crucial to our family and every time you decide you can’t possible have a cappuccino without your Corgi you might be making life just a little more difficult for someone who struggles to navigate the world in some way.
This is not me calling you out for bad behaviour. Before Oakley joined our family, I thought the idea of bringing my cat every where I went was heaven. I’m just simply letting you know that what might seem like a great idea could very possibly be a barrier for some pretty awesome people.
I wanted to say: “Don’t you dare look at her like that, you little assholes”, but instead I ushered her away.
I wanted to say: “Don’t you dare look at her like that, you little assholes”, but instead I ushered her away.
I suppose I should give you some background.
Kate had some birthday money to spend this past weekend. She wanted to go shopping, so off we went. She dressed herself, which, if you’re the parent of a child with autism, is a total fucking win, but her choices are not exactly typical.
Kate chose hot pink leotards and refused to add a skirt even when I explained to her that leotards technically are not pants. She added a ‘too small’ t-shirt and finished off the look with a flowered headband worthy of a royal wedding. She was ready to go, and choosing my battles wisely, I ushered her to the van and off we went.
She often wears costumes and dresses herself according to current interests, like her decision to wear a 'cowboy' get-up to her most recent birthday. Most of us, love this about her.
We entered the craft store, because she is obsessed with these little hard plastic animals they carry and she was interested in adding to her collection.
She browsed their selection and chatted happily to herself while I waited in the aisle for her to choose her prize.
I glanced up when two girls, maybe a year or two older than Miss Kate, though they would not know that because she is tall for her age, were standing at the end of the aisle, staring at my girl. Normally, I don’t spend time reading the micro-expressions of tweens but their disdain was clear. They snickered and stared.
Now, I’ve worked with children for my entire career and I knew these girls would never show disdain for a visibly disabled child. They would be the first to offer to push a wheelchair, or spend recess helping our most obviously vulnerable children. They, and their parents, would pride themselves on how selfless these little girls are to their classmate with down syndrome or how kindly they offer to play with the non-verbal kiddo in their class. When these things are not really selfless at all, but often an attempt to gain recognition for their efforts. These same children, when faced with a child that is not visibly different but exhibit minor characteristics or interests different than their own, will often recoil, because, to them, to be a little different is a very serious 'social sin' and acknowledging this allows them permanent membership to a very elite club.
I became fiercely protective of Kate, as any parent will do, and walked over to my girl, trying to block their view. They would bond over their mutual contempt for a peer that missed the mark on fashion, or age-level toys, or any of the strict social structure these girls have built for themselves.
Miss Kate, oblivious to her mean-girl counterparts, continued to try out each and every plastic animal on the shelf, complete with animal noises and grand gestures.
The girls giggled and walked away.
I actually wanted to scream in the faces of small children at the craft store for staring at my girl like she was, in some way, “wrong”. I wanted them to turn and run in fear of this crazy woman who might, at any time, unload her giant basket of overpriced art supplies, right on their smug little heads.
Wait, that didn’t feel right. Why, on earth, would a relatively even-tempered Kindergarten teacher, like myself, ever wish to scream in the faces of a couple of entitled little monst...okay, I’m clearly still angry. They were just little girls. They were just little girls who saw something that made them stare, and maybe they couldn’t help themselves, because maybe their world is so rigidly constructed by social media, and youtubers and whatever else pre-teens worship, that they couldn’t manage to hide their snide little expressions when they saw and eight year old that didn’t quite look or behave like the status-quo.
It didn’t make me feel better.
Kate was no worse for wear, as usual. The kid is bullet-proof, I swear. But on that day, I wasn’t.
This isn’t a cautionary tale. Most kids are great. Especially this latest generation of kids who are educated in an inclusive classroom. There are still a few, though; a few you’ll come across on the long way that will crush you with their repugnance, and they will remind us that we still have so much work to do.
It’s her birthday next week. She’ll be eight. A little older, a little taller and a little more obviously behind her peers.
It’s not that she isn’t smart, you know. Maybe she’s not at grade-level, but I’m one teacher that will tell you that matters none at all.
The fact is, she is smart in so many ways. And I couldn’t be more proud.
It’s the social stuff that gets her. It’s so damn confusing for her, and her peers are getting less and less patient.
Don’t get me wrong, there are a core few that have the patience of Saints. These little ones will gently explain some very obscure playground rules to a very frustrated little girl. She'll rarely go with the flow, because the 'rules' likely sound 'all wrong' to her, and she'll let you know.
There are others, though; others that don’t have the patience and nor should they. They are just children, after all, and they are trying their best to navigate the complicated web of playground decree and they may not have time to explain its intricacies to Kate.
I can see them getting tired of her rigid moral code. I can see them scrunching their noses and deciding it might be ‘too much work’ to play with her.
That’s far harder to witness than a poor spelling test or lowered reading level.
Now, I know, I have friends who wish this was their problem. Friends who are working on toileting and self-harm. I want you to know that I fully appreciate that our concerns are not theirs and I am hopeful for them and grateful, too. There are never words to explain this divide because no one's worries need be diminished but let's be real. If you're working on toileting, than the playground is going to be a lot further down your list. I get that.
The social stuff is everything to us. Absolutely everything. The curriculum has it all wrong. A new generation of kids, kids like mine, are growing up unable to intuitively pick up on what the collective has deemed appropriate social behavior. These poor souls are left to work on numbers and letters and other such nonsense when they have yet to make a friend, accept an injustice or read an emotion on another’s face. How sad, that we are failing a whole demographic at once. How short-sighted of us.
I suppose, I’ll hop off the soapbox, for now. I know I have little authority to talk about much more than my own daughter’s experience. (But if you read me at all, you’ll know I often take liberties I shouldn’t).
Kate has made herself popular, among her school mates to some extent. She walks around with a Prince of a dog, a dog she considers her very best friend, after all, and her self-confidence has drawn many to her side. But these are friends of a superficial kind and she is growing older and yearning for more.
She deserves a meaningful peer connection and she is struggling to find that, right now.
I want to help her. Her team wants to help.
So we try with social thinking therapy, and speech therapy and occupational therapy, among other things.
And she’s come so far. She really has.
There are just times I can see her wishing she could find a way to fit into these strange and exclusive groups, with their unwritten rules and their pricey social memberships.
I can see it in her slumped shoulders, a posture she wasn’t capable of this time last year. I can see it in the way she is beginning to hang back. There was a time she would rush toward any time of potential fun.
Now, don’t be too sad for MIss Kate. She is quite fond of herself, and most times, considers these exclusions the loss of the group members that reject her and not her own.
I’m thankful for that.
It’s just that someday; she might see it a little differently, and those cracks are starting to show, and that is one of my greatest fears.
Happy Birthday my girl.
As always, if you'd like to send Kate a birthday card, you can forward it to:
27 Wellington Row
Saint John, NB
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)