Autism is changing in our house. I have been resistant to write about this for a few reasons. Kate is older now, and though she would tell you she loves when I write about her, I wonder if she will always feel that way. Yes, I have thought about that, thoroughly. She currently loves me to read old posts to her and show her old videos and she howls with laughter when I discuss some of her less than stellar moments. Biting my cheek while I was checking out of the grocery store, removing two fistfuls of my hair during a particularly rough bedtime. Don’t get me wrong, she isn’t laughing to be cruel, because these were far from funny moments when they happened. She is laughing at the silliness of the thought of her being so hard on anyone when she has blossomed (for lack of a better word) into a kind little spirit that wouldn’t dream of hurting a soul.
So, as I re-read our history with our now nine-year old girl. I wonder how she came so far and so fast and I’m lead back to the idea of ‘Our Team’. Grandparents, friends, therapists, teachers, EA’s, Siblings, family in general, and you guys. You guys that read this blog and comment how it has either helped you or informed you in some way. I tell our girls this, and they feel proud. They feel proud of sharing our story so that the next Mama who gets a surprise bite attack at the grocery store, will know, that it CAN get better.
While Kate’s communication skills are still lacking, and her social skills leave something to be desired, her character is second to none. And while she sits below her peers academically and she struggles with food aversion, her constitution is staggering. Her growth has been breathtaking.
While I feel proud of Kate and our family and all of the accomplishments to date, it is important to remember that these accomplishments may not be where others are headed, or even need to go. At the risk of sounding cheesy, just take it one small victory at a time, because I can clearly remember when biting dominated our conversations and our world. And if you told me then, when I was crying in the bathroom trying to cover up little teeth marks on my face, that I would be well beyond that issue today, I would never have believed you.
T’il Next Time
I was running errands in a typical middle class subdivision, not unlike my own, this week, when I spotted a women, carefully crouched on the street-side of her perfectly manicured hedge. Now, if this wasn’t odd enough, this lady had a Diet Coke in one hand and a cigarette in the other. Strange, yes, but also, rather intriguing, because this woman had completely abandoned her prescribed roles as mother, wife, neighbour, executive, whatever titles she held, for a handful of minutes alone with a Coke and a Smoke and I fucking loved her for it.
Now, I think, I slowed down in the my basic-bitch Honda CRV, the same car, I’m sure, that sat in her garage, and stared at this woman for a bit too long. She was, like a Gorilla in the "wilds" of a Disney Resort, who was supposed to be swinging arms and grooming babies but decided, instead, to browse the New York Times.
I knew, without really knowing, that this new hero of mine, had a couple of kids in that house behind her. The eldest was probably still calling out grievances from her spot below the Post Malone poster on her wall in her far from tidy bedroom, unaware that her mother had snuck out for some time alone. The youngest was likely making slime with no regard for the dining room chairs or the family dog. And that mother, had decided, without fear of judgment from the outside world, that she needed to remove herself from the grind of maintaining her home, her kids and her sanity, for a moment and since she was going to be crouching in front of her hedge for a little alone time, she might as well indulge in a few of her vices. Vices her ‘beach body’ toting neighbours would likely abhor.
And as I drove by, that Lulu-clad, cigarette-smoking, diet-coke drinking mom, I nodded in solidarity, and you know what, I’m pretty sure, she nodded right back.
Just this last week, our Kate (with the help of Mom and Dad) completed her third Public Access Test with NSD Oakley. While, of course, Kate would not be the primary handler she can made to feel like one and for that we are very grateful for the way this public access test played out.
Just like last time, we headed to our local grocery story because we spend enough time there, that both Kate and Oakley were comfortable in those surroundings. The employees and customers rarely give us a second look, unless it’s too admire the cutest little kid/service-dog combo from afar.
I won’t bore you with the details of the P.A.T, but just know that your boy NSD Oakley dominated that test, and his girl Kate felt like a superstar for showing off the skills that her best friend excels in.
Now, we often get questions about what Oakley can do for Miss Kate, now that she tends to stick around (oh, when she would bolt and wander, we were so terrified and being tethered to a ninety-pound beast was a great comfort). She would still leave if the mood should strike her. She’s still believes everyone is a friend so to be lured away or wander to something that sparks her interest is still a fear of ours. However, now, she’s grown so much and she uses Oakley for some different reasons beyond safety. Here are a few:
I’ll preface this next section with a reminder that if you don’t get this, it is not MY job to help you through it, but for the love of all things labrador retriever, I shall make the attempt anyway.
Have you guys heard of goally, yet? It's this great little device that allows you and your child to track their routines, behaviors and, most importantly, rewards.
We've been trying this out for a few weeks now, and we've had some great success. Kate's goally reminds her to brush her teeth, eat breakfast, clean her room etc and for every completed task she earns points. This is hugely motivating for Kate.
The language is simple, and there are visuals to help explain what's next. The tasks in Kate's daily routine are also timed. It's like an executive functioning dream come true! Obviously, goally was founded by a parent who knows, if you know what I mean. Also, I am pretty sure they are having a huge summer sale right now. Check them out here and tell them I sent you.
How do you tell someone that all the things that make life so hard to navigate are the very same things that make them so amazing?
It used to be easier. Even last year, when she went to Boston to take part in a study about girls with autism, she didn’t really ask about her Autism. She just generally believed, as do the rest of us, that autism made her amazing. You could ask her for an explanation and she would usually launch into a rather disjointed but incredibly adorable speech about her awesome, sparkly brain.
This week things changed for her. I am not sure when, or why, but all of the sudden, she wants to know some serious detail about what autism means for her. So then, what shall I say?
Kate’s expressive language is far stronger than her receptive language, so while she can talk your ear off, she doesn’t always comprehend your message. You can ask an expert about the finer details but, for Kate, I imagine it’s a lot like this:
Kate hears the words you say and then each of those words goes into a different compartment in her brain. Then, she must access those words and put them in an order that makes sense. This is my best guess. I could be way off, but for now, this is how I imagine it. Somedays, she can organize those words quickly but on other days, when she is all out of tokens, as we say, she has a much harder time making sense of everything.
Now, on top of this communication issue, there are a number of other things that make up Kate’s version of autism. She’s excessively overconfident, she has little concept of her body in space, she knows no strangers (which can be terrifying as I’ve often said) and she has low tone, or very little muscle tone which makes her pretty uncoordinated, but only in the cutest way possible.
Sure, there are other things that I could mention but that’s enough for now. You get the idea. Right? In order to explain her autism to her, I would have to explain to her why things are often confusing and frustrating. And, while she has every right to know, she isn’t quite able to fully understand yet, so we end up in a more confusing state than when we began.
So, you can see how this isn’t easy.
She has questions, and rightly so.
I worry that I don’t have the answers, because the answers are really all inside her fascinating brain. I hope she can tell me someday, but for now she will have to do with my rudimentary explanations.
How do you tell someone that all the things that make life so hard to navigate are the very same things that make them so amazing?
I know I share intimate details on this blog, which might lead you to believe I have some level of confidence, but the truth is, I suffer from anxiety and depression and I take medication daily.
This won’t shock anyone that knows me. But, part of my problem is the insistent need to overshare.
Maybe that’s why you like me. Maybe that’s why I make you uncomfortable.
If you don’t suffer from anxiety, you may not understand, but I’m guessing, if you read this blog, you have some knowledge in this area.
Isn’t everyone a fucking basketcase, in one way or another?
Why am I telling you this?
Just another example of oversharing?
A warning that what I write is either fueled by anxiety, depression or, if I’m lucky, a mid-level red, costing less than $15.
Relax! I love to write on caffeine, too.
I recently made a list in my journal of all the things that cause me anxiety/depression (and what,EVEN, is the fucking difference?)
Here it is, in NO particular order:
I could go on and on, and get into some serious minute detail, but I’ll spare you that shit. You have your own worries I’m sure.
I take pills for my blood pressure, too. It’s as bad as my anxiety/depression insofar as it makes my day more difficult than it should be.
So there it is; I take three pills every morning.
I wish I didn’t, but if wishes were fishes… to steal a phrase.
So to my workout...which is the point of this post.
Christ, I can ramble.
I’ve started Working Out, as you may know.
Maybe it makes you roll your eyes.
I visit CrossFit about four times a week.
I don’t love it, because that’s stupid. That shit hurts and makes me sore and nauseous, among other things. I am loving the people, for sure, but the workout...it’s hard and it hurts. I can’t do most of it and spend my workout scaling everything back to a manageable movement.
I’m always last. I’m always slowest. And, for the most part, I’m always confused.
But there is something that makes me want more. Something that makes me look forward to my next visit.
That’s so strange to say.
Why the Fuck, would this tired ass, obese (relax, the truth hurts) teacher and autism mom, enjoy a level of self-harm that puts her emo-stage in the early 90’s to shame?
Here’s what I’ve discovered (and yes, most of you probably already know this)
When you kick your own ass, there is something released into the brain that rivals the pills I take to make it through my day.
Do you hear that?
CrossFit makes me happier.
Isn’t that the most fucked up concept?
This special-needs mom, with a severe level of anxiety and mild depression is telling you…that...exercising until you think you might vomit on an elite athlete’s shoes, is better for your head than any pharmaceutical out there.
There, I said it.
And if you don’t believe me…
Fuck off, I don’t care. CrossFit doesn’t make me nicer.
I’ve been to crossfit 37 times. I know that because I have been obsessively marking the pages of my planner whenever I go.
I’ll start at the beginning:
It was January 2nd, and as usually I was going through a list of possible resolutions. And just like Lent, for this lapsed Catholic, I always try and make my resolutions more about getting than giving up. My list read like this:
In 2019 I promise to:
I didn’t know where to start, having failed miserably at every fitness attempt to date so I decided to google some of the obvious and honest questions that were rolling around in my head:
Best gyms for fat people
Gyms where fat people are welcome
Least Painful workouts for out of shape people
And so on
(I know you think these search terms are all about the self-hate but trust me they were just a pragmatic way to find a welcoming gym)
It was a particularly dreary and depressing January morning when I decided to I needed to tell my husband straight away that I wanted to try Crossfit, because in all of my searches it kept coming up first.
He was in the shower, but I really didn’t want to wait to tell him that we were about to join a gym. A gym where I had said to its members: “Call your Dad, you’re in a cult.”
I burst through the bathroom door and held my phone into the shower showing him a picture of the gym website.
“We are joining this gym...tomorrow.”
He agreed; probably because he was shocked to hear those words from my mouth.
I contacted the gym immediately and set up an appointment.
Here’s what went down:
Starting Weight 268lbs
I donned my cleanest and newest ‘yoga’ pants, that, to date, had never been to yoga, and in fact, might be more aptly named “pajamas”, and drove, with my gym-ready husband, to our first appointment at Crossfit.
(I do love a run-on sentence, don’t I?)
This session was designed to go over the fundamentals needed to partake in a crossfit workout. So, basically, practicing movements like squats, lunges and a number of other workout-y terms that I don’t remember.
We practiced these movements for an hour, and I went home a little excited that we were about to start working out and making some positive changes to our health.
And then the next morning came…
It hurt so bad that when I sat down on the toilet to pee, I debated staying there until I had to pee again to avoid the pain of going from sitting to standing.
And if you think I am exaggerating, I invite you (if you’re out of shape like me) to come work out with me anytime.
I hurt like that for two days, and then I went back for more.
It doesn’t hurt that bad anymore, but it sure still hurts on some days, and I’m learning to appreciate those sore muscles because it means I got off my ass and did something.
Now at 37 workouts or 10 weeks in:
Current Weight 251lbs
Stay tuned for more.
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.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)