It’s been a long winter. A winter that’s refusing to recede to a muddy Spring and instead sends us Nor'easter after Nor'Easter to remind us who’s boss. We surrender, of course, but what else could we do. I suppose we could stand outside and yell ‘Screw You’’ at the sky or something of that nature but it would unlikely change our circumstances. So, instead, we Canadians settle in for the last ‘big one’.
It’s fine, really. It’s just fine!
Anyway, enough of that. I’m writing today because I fell apart, once again, after exiting the pediatrician's office and the saddest part of that sentence is that no one is surprised, least of all me.
You’ll be pleased to know that I made it to my van. It’s really the best place to cry. It’s the only time I am alone and if I put my sunglasses on the guy at the coffee drive through can hardly tell, or maybe he can and that’s why he keeps putting cream in my friggin’ coffee!.
Back to the van; Oh, if the airbags could talk, the story they would tell of an over-caffeinated, middle-aged mom, who alternates between loudly reliving her middle school years, loudly listening to The Cult, and crying into her steering wheel because parenting is a lot harder than everyone said it would be.
Now, I don’t mean to paint myself as a pathetic, blubbering parenting failure, because I also suck at other aspects of my life. Kidding, I kid! Relax. I have some things totally figured out; like how many episodes of Forensic Files I can fit in on any given evening or how to remember to compliment my husband’s cooking skills so he keeps preparing our amazing meals and I’ve even recently realized that painting, along with writing, are excellent ways to express myself because swearing at the sky wasn’t working for me.
That’s quite the useless preamble, isn’t it? After all, you come here to read my thoughts on autism and all things related and here I am spewing some confessions that you may or may not be interested in. Ah well, that’s the beauty of writing one’s own blog. I make the rules. Look at my lazy title, for example. And today, I feel like writing whatever crosses my mind as my fingers sweep across this keyboard. How is that different from any other day, you ask?
Fuck if I know.
The reason I opened this page on google docs today is because I spent the morning with Kate’s pediatrician. (Can anyone spell that right, first try? Sheesh). She’s joining the Co-Morbid club with a second diagnosis of ADHD. Neither Alex or I, were shocked, and it certainly doesn’t change our rock star little girl, at all, but there was something about discussing the things that are hard for Kate that got me. It’s never the label, or the potential medications or strategies or any of the good and helpful suggestions that we hear, that get stuck in my brain. It’s the fact that her Dad and I spent the better part of an hour describing how Kate has a hard time with this, and this and sometimes this and almost always this.
It hurts. It’s unnatural and the parents of kids with exceptional needs do it for a goddamn living.
I held it together, though. Until we walked out to the parking lot and parted ways and Alex, said “are you okay? Do you want to talk about anything before we head back to work?” And I with my Irish indignance, said “No, I’m fine. See you at supper.” And then I proceeded to walk back to my van and cry. I didn’t cry long, because I am an old pro now, sad as that may seem. I cried a little and then I drove with fogged up sunglasses back to work.
Before I made it to work I pulled into the grocery store and ran in and bought Kate a little Monster Truck toy she has been eyeing and I bought her sister some silly putty and I tucked them away in my purse like they are some sort of consolation prize for having an emotionally fluid mother.
I’ll give them their little prizes tonight and hug them extra hard because things are good and we are lucky and I’ll try and remember that even when James* puts cream in my coffee.
So, hey ADHD parents, and adults. Is there a secret word to join this club?
*Names have been changed to protect slack-ass drive-thru employees.
It’s St. Patrick’s Day and maybe my Irish blood has me boiling but I’m about to entertain you with some seriously lazy writing because I’m mad and I want to use all the swears.
My seven year old with autism is aggressively, and dangerously social. If you don’t know what that means, please let me clarify.
She’ll talk to anyone, anywhere about anything and she truly believes you’ll enjoy the interaction just as much as she does.
She’ll chat with her teacher, the lady in the grocery store, her Coach, the border guard, the gas station attendant and even the ex you’re trying to avoid in the grocery store.
She doesn’t understand this is not “normal”.
So when that little blonde spitfire repeatedly tries to engage you in conversation, your ass best take a minute out of your day and acknowledge her!
Sure, she may be about to remark about the size of your belly or the smell of your breath, but she she also might be about to describe, in painful detail, an episode of Power Rangers. Either way, you’re the Jesus grown-up and you need to check in with her to see what she has to say.
Not long ago, there was a time when she could not connect to anyone, and if you think I don’t rejoice every fucking time she makes a connection no matter how odd it may seem, you’d be wrong.
And furthermore, you DO NOT need to remind me that talking to strangers is dangerous. You just let me handle the weeding out of the assholes from the awesome fuckers like you, whom she relishes in chatting with.
Maybe I am asking too much. Maybe your day is far too busy to take thirty seconds to tell her your favourite superhero.
But here’s the thing.
I don’t care.
That’s my girl.
It’s your god damn pleasure to chat with her.
I've been a creator my whole life. I often think, "what can I make". And then with little skill and less money I go about creating something which usually finds its way to the garbage, eventually. I know I am not alone in this. Where are my crafty girls at?
There is something legitimately therapeutic about creating something, however. For most of my life, it's been for fun.; just another of my many expensive and messy hobbies, but lately, it's been more than that.
Lately, I find much solace in my 'art room'. I spend tens of dollars on art supplies and I turn on my favorite podcast "my favorite murder", of course (no judgement in the apartment, remember ) and I create these badass little faeries to say the things I want to say. The things I want my little girls to say, (well, not literally, but you get the picture).
Raising kids in a world where the President is a sex offender, among other things, and people are denied basic human rights for simply being their authentic self is depressing as Hell, and I hope these fed-up little faeries bring you some of the solace they've brought me.
I opened an Etsy shop to sell my faeries because of a number of inquiries regarding buying them. They are also taking over my house so they have to go somewhere. If you're so inclined you can visit that shop here.
It's getting to me, you know. This food aversion, that I know is part of autism. We've been to the doctors, the feeding team, and the nutritionists. They all say the same thing: "It could be worse."
I get that. I know some of your children exist on goldfish crackers alone. I know that is excruciating for you, because you want them to have vitamins and minerals and all those things they need to help them grow.
So, forgive me when I say this:
I might barf if I have to make her one more peanut butter sandwich. Like my eldest, I have grown to dislike peanut butter, a food I once adored, because Miss Kate eats this for breakfast every single day. Every single day for 5 years running.
Her lunch...you ask? Well at lunch time she's practically a Foodie, with her flatbread with pesto and feta and chicken. It's a pizza she was introduced to at two years old. And for lunch and supper, she has it every single day. Every single day for 5 years running.
Snacks will range, thank goodness, from apples to more peanut butter sandwiches, to more pizza and back to apples again, but at least there is some change.
Chips and nuggets and french fries have made an appearance and so have grapes, strawberries and an Aero bar of all things. but those things come and go.
Her staples remain the same.
Now if you're shaking your head and thinking stupid things like: "I could get that child to eat", "In my day we ate what was put in front of us or we didn't eat at all" or my favorite. "She's just a picky-eater", I would like to extend an invitation to my home. Please come and do what teams of professionals could not do. Please come and introduce a new food to my child, or any child with food aversion, and I will gladly bow down to your superiority, you smug son of a bitch.
But until then...
Tonight, before bed when she asks for a peanut butter sandwich, I'll make it. I'll gag a little as I slather the peanut butter on the bread, but I'll hand it to her and she'll happily eat it, again. Like she's done every single night, for five years running.
What are you food aversion experiences?
It’s been awhile since I've written to you. I’ve made it my business to write about you many times, and whether you’ll approve of everything I’ve written, and shared with your adoring public, is still unclear. I figure, worst case scenario, we’ll share a therapist someday and you’ll have ample opportunity to tell me off or thank me for my forward-thinking, and exceptionally thoughtful prose. At least that’s how I choose to imagine it playing out.
Anyway, this letter is for you. You, my seven and three-quarter year old doll, the sunshine to my rain, the sweet to my sour, the beauty to my…well…fair for my age. But seriously Kate, I love you so hard. Let’s just get that clear right away. And you know what, I know you love me, too. I really, really, do.
You won’t remember the first few years when I couldn’t get my nose out of an autism book long enough to take a good look at my littlest girl and appreciate her for every little quirky move she made. There were times when you couldn’t look at me, or answer to your name and it was crushing. You often ran off and never, ever looked back to see if we were following you. To be fair, you’ve held onto to a form of this fearlessness that terrifies me to this day (Oakley, your loyal service dog has helped with this), but back then, I felt like you didn’t need me or didn’t want me, and it hurt. I wasn’t yet able to understand that it wasn’t about ‘our relationship’ but more about your purely innocent trust of all things. I know, I know, I have this annoying way of making things about myself. Let’s explore this more in future therapy. So, I read and I read and then I read some more because I was going to understand autism, what made my little girl tick, at any cost.
I guess I felt like I was failing you if I didn’t figure out as much as I possibly could on the subject. I realize now that it was just my way of coping, and not very well, at that. Over the years I’ve found other ways to cope. Writing helps, and food, and art, oh and food, and wine, and of course, food. What did I have to cope with you ask? In your eyes, and my own, I have the sweetest, funniest, most amazing little girl who happens to have autism. In fact, some might argue that the autism made her exactly who she is. So, what is there to ‘cope’ with? In the beginning it was fear of the unknown because ‘autism’ can be such a scary word for new parents. Then later on it became anger at how misunderstood you might always be. And now it’s changing because I’ve spent the last seven years watching you hurdle mountains they said you’d never climb and more importantly, I’ve watched you do it without a thought to any other possible outcome. You, with your handsome service dog by your side, have rocked it.
You’ve come so far, Miss Kate; and not just in your taste in music (remember the ‘Wiggles’ years? You’re making friends, now. It was hard to imagine that my powerhouse little blonde tornado could ever slow down enough to make a friend. But you did it, Baby. You didn’t change who you are or pretend, because that is simply not an option for you. You owned your silliness, and your never-ending energy and your Kanye-esque confidence and you found your people.
I’m proud of you Kate. You’ve taught me so much, and I only hope to someday return the favor.
All my love,
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I'm not your moral compass. I'm a wannabe writer with a small but very loyal following, so please don't make any of your major decisions based on my ramblings. I'm just not who you think.
I want to be a warrior mom who spends her days advocating for the rights of individuals with autism, but I also want to stay home and read while drinking boxed wine.
I want to have the patience to talk with Kate about her birthday every single day until it arrives, and then start again the moment it's over, but I also want to turn up Netflix and tune out the birthday script. Yeah, I said it. I want to absentmindedly shake my head while actually focusing my attention on the new season of Black Mirror.
I want to make sure I arrange well-planned play dates with the two friends that finally found their way to Kate and monitor her social interactions to ensure she doesn't scare them away, but I also want to give them sugary snacks and the WiFi password so I can hide in my room and catch that elusive nap.
I don't indulge in these selfish behaviors as much as you might think; or maybe I do, I don't know how high your standards are and frankly, I can't be bothered to worry about that because I am currently using up all of my worrying time to worry about a future that is as uncertain as any of yours.
I do spend much of my time working a full-time job as a teacher, organizing speech and occupational therapy appointments. I do fret over play dates and whether her big sister is getting enough of our attention. I've devoured every autism-related publication I can get my hands on, and I've read the entire internet but I simply can't do these things as much as I did in the beginning.
It took me a few years after the diagnosis to realize that attention must be spent on vain and trivial pursuits. Time must be spent wasting away entire afternoons debating the merits of battery-operated scissors or cat houses and that's okay.
So, if you're still here, reading this, and you'll forgive me my transgressions, I'll continue writing. Or actually, maybe just keep your standards low because I'll probably just keep writing, anyway. :)
p.s. I love sharing our stories with you. If you like following along, consider buying me a coffee to help continue making this website free.
While this update might be a little late coming, it will also be poorly written and self-serving. Yes, I know what I did there.
Okay, our most recent trip to Boston Children’s Hospital so Kate could participate in her third and final round of their autism study.
It was the week before Christmas so Boston was all decked out and though we’ve been many times before, Quincey Market at Christmas is something to behold.
The girls adore Boston and all of our friends at the hospital but this trip held a big bad blood draw for Miss Kate.
In the interest of being honest with our littlest one, we told her she would be having blood drawn.
Now, before you ask, I don’t know what the hell we were thinking because she fretted about that for the months prior to the trip and her anxiety only increased when we arrived.
So, we decided, too little too late, to lie to Kate and pretend we were walking over to the clinic because the doctors wanted to see her cute outfit. (Yep, that’s the level of deception I could manage after driving to Boston for eight hours with the remnants of the stomach flu).
Well, cut to the blood draw and the unnatural strength of a seven year old who realizes she’s been lied to and you’ll quickly find a team of professionals to hold down the Herculean child like they do it every single day (and, of course, they do).
Next, they had to take blood from Alex and I for the study. Something about the parents of children with autism being ridiculously good-looking...
All in all, we’ll take the win for this trip. And you’ll be happy to know that the results of the study, though not available yet, are sure to change the face of autism for little girls everywhere.
And some photos below. The girls in the hospital waiting room (so many toys).
Kate comforting Alex after his blood draw went a little wrong. (Hers is all done at this point, you can tell by her tired eyes)
Kate at ‘Dick’s’ restaurant with a pretend pout because we always have fun there.
And finally, Grace and Kate in front of the Christmas tree at our hotel.
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There’s this podcast I used to listen to. It’s called: “The Last Podcast on the Left”, I discovered it whilst searching for podcasts about serial killers and the like because I have a penchant for those dark things and if I am being honest it might be because there is a small part of me that feels that knowing the details of grisly crimes will somehow protect me from meeting the same fate, or I am just a little bit sick. Either way, I’ll make no apologies for my love of all things murder, from Dateline to my girls Karen and Georgia over at “My Favorite Murder”.
That preamble may not have been necessary but there you have it. Now, what the hell does my odd and dark little avocation have to do with autism? Here's the thing, I was hoping the answer would be, nothing. Listening to audio-books, and podcasts and indulging in a little Keith Morrison each week is as escapist as it gets for this mom. It's a time when I don't think about autism or its hold on our family. It's a time when I don't wonder if there is something else I should be doing. It’s me time, and my favorite time to do it, is on the way to work in the morning, which brings me to the point of this gloomy little essay.
This morning, as I indulged, some of my favorite podcast personalities “The Last Podcast on the Left” (ep 35) used the following phrase: “What kind of retard you rockin’?” as if this was a most clever way to ask about his podcast partners “autistic sensibilities”. The r-word banter went on for a few more minutes before I angrily switched it off. Now, I’ll be honest, I tried momentarily to reason out why these podcasters would say such things. Were they using it ironically, (which is still not okay)? Were they playing characters that were supposed to repulse? In the end, it didn’t matter. They used the most archaic and hurtful idea of my child and yours in an attempt to get a laugh and my stomach turned.
So, what am I going to do about it?
Tell my tens of followers for one. If I can’t reach those short-sighted, small-minded, ‘peaked in high school’ sons of bitches, I’ll just have to tell my loyal following that we still have work to do and it starts with calling these people out every chance we get.
When the phone rang, it seemed as innocuous as any mid-day call from my husband. He calls rather than texts on occasion, mostly to annoy me. Today though, today he had placed our seven-year old Kate on the line. Kate’s autism makes communication tricky, at times, but when she is upset, as she was this day, it takes all of her hard-earned communication skills and garbles them with-in an unrelenting brain. She sobbed on the phone and I knew immediately what was up.
She had been scheduled for a flu shot along with her sister. My mother-in-law and my husband had decided to take the girls to the doctor, knowing full well, it would take at least two adults and a brave nurse to administer the shot to Miss Kate. Of course, it was not her first. We are a family that is grateful for the invention of vaccines and we will always protect our children using them.
Her sister, the perpetual ‘good girl’, likely sat for her turn without a word. Grace, would have been more worried about causing trouble for the nurse than the shot itself. She probably thanked the nurse and went to sit patiently for her sister to be vaccinated.
Even Grace, having done this with her sister many times before, would have been prepared for an extremely dramatic show. She knows Kate will not settle and accept any kind of needle. There are not enough toys in the world to convince Kate that something that ‘hurts’ is a good thing. Her brain doesn’t work that way. Her brain simply cannot conceive of any reason why someone, especially her mom and dad might want to hurt her.
This is particularly crushing. She can’t understand. She can’t be reasoned with. She can’t be bribed. Her autism presents as a cruel barrier to her understanding that we do this out of love for her, to protect her. Instead she feels scared, trapped, hurt and lashes out.
To say it blows, is an understatement.
I don’t want my little girl to think I want to hurt her.
Kate proved too strong that day, and after multiple attempts, many tears and a mountain of frustraton the nurse decided not to administer that shot. We’ll be trying again soon.
Sometimes, this shit is hard.
My nine year old doesn't have autism.
Her little sister does.
However, that nine year old often shares a ‘look’ with me. To be fair, it’s actually a range of ‘ looks’ I wish she hadn’t come to know. These ‘looks’ should be reserved for grown-ups who glance at each other to share unspoken sentiments about the trivialities or silliness of youth.
The looks we share are a silent agreement that we understand her little sister’s autism and all those ways, both good and bad, it can affect each of our lives.
There is a look of frustration. A sideways glance to see if I have noticed that her sister has pushed her too far. A check-in to see if she can take a break from autism for a while, knowing her sister can never do the same.
There is a look of anger. Though rare, it can be both heartbreaking and liberating because Grace has taken a backseat to her sister for so long. This look, with its raised shoulders and furrowed brow, occurs when her sister aims the worst parts of autism directly at me, her mother.
There is a look of sadness. A look we very rarely exchange, you’ll be pleased to know, but a look we share when her sister becomes confused or angry because the world stopped making sense.
There is a look of embarrassment. And that’s ok, because when her sister casually tells the woman at the next table in a restaurant that she ‘loves her big belly’, it’s okay to turn a few shades of red.
There is a look of guilt. This look guts me because she is already wondering ‘why not me’. Why was she born ‘normal’ while her sister fights to make sense of every single day?
There is a look of fear. A look that scares us both. A look that says, ‘will she be ok?’ Will she drive a car, live alone, have a family? All things a girl not yet ten should never think about.
There is the a look of appreciation: With her eyes crinkling, and a knowing smile she nods to me because at nine she is already aware of how funny her very literal sister can be.
There is a look of pride. A small smile when her sister makes a connection that has been troubling her for so long.
There is a look of surprise. When her sister smashes a barrier that has been holding her back in some way.
And most importantly:
There is a look of love. When her sister plays happily or makes a friend. When all the frustration dissolves because these sisters have a connection that eclipses it all.
There is a 'look' to autism and I see it every single day.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)