It’s time. Our beloved NSD Oakley Long Legs is retiring. Fear not, he’s got a lot of great years left in him, he’s just finished his task of helping our girl get through her day. She’s grown so used to having those velvety ears at an arm’s length. She’s yet to spend a day without the comfort of his ninety-pound frame, relaxed and ready to offer her some sensory support. Gone are the days, where she was attached to him with a lead that would keep that little spitfire in the room for her own safety. Now, she doesn’t venture far, for fear of missing a moment with her boy.
To be fair, to both Kate and Oakley, we have had to take a long hard look at what kinds of services he is providing for her and how much longer it will be to her benefit. With the help of her team, as usual, we have decided that Kate will attempt school on her own, with the sweet promise of seeing her best bud immediately after school. This way, she can explore her independent side, with her teacher and EA never too far, and she can get used to not having Oakley with her every minute of the day. Because the sad fact is, someday, he won’t be there, and while it seems impossible to think about, we have to prepare her, for her sake, as well as our own.
So, Miss Kate, and Oakley will embark on new adventures. She, exploring the world without him, and him, well, with him we are hoping to find a way, to use his nothing less than magical powers to help others during the days he is not at school with Kate. We aren’t quite sure how this will look at the moment, but some of the things that have crossed my mind are as follows:
Could he become a visiting therapy dog? Could, I, as a teacher and his handler, spend my days visiting students who have experienced trauma. If you’ve met Oakley, you’ll know that his gentle ways and calm presence would be key to helping any child navigate a difficult situation.
Could he become the kind of dog that visits children (or adults for that matter) in the hospital? Could his big brown eyes help heal or at least bring smiles to those who need them the most?
Or maybe there is another path for Oakley. What do you think?
Of course, we will lean heavily on his NSD dog family for the answers to these questions, as they are the experts in all things Service Dog. But, it truly is our hope that Oakley will continue to work, as he loves to do, for as long as he can. As long as he comes home to Kate each night, that is, because, even in retirement, he’ll always work for his girl.
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In the early days of Kate’s diagnosis, I found solace in internet friendships with other parents in the same situation. Having no real-life friends with a child on the spectrum, I felt very alone. Reaching out, electronically, to strangers was my best bet, and for a long time, it worked for me. I’ve made internet friends that I still keep in contact with today, (though, if I am being honest, I would probably only ever want to meet one or two). Those would be the two that would have trepidation about meeting me, because I find that ‘fear of strangers on the internet’ thing, is a great trait to have.
My point is that I have taken a giant step back from ‘online friends’, because I felt overwhelmed at the level of commitment some of these friends expected. I didn’t really know these people, though I felt a solidarity in many ways. In some ways, I was sure they were all lovely, and kind and in no way, secret serial killers, but in other ways, I was always questioning why, my inbox was full of messages that demanded immediate attention, and my notifications were full of comments needing to be acknowledged. The pressure was mounting and that wasn’t the worst of it.
Online communities have a level of drama that can rival any middle school clique. They thrive in the comment sections of articles and blogs, where people feel the sharp pains of a passive aggressive comments or worse, aggressive-aggresive comments . It’s childish and boring and the worst part of online relationships.
When I first noticed that people would actually expend energy arguing with someone they knew only as a profile picture of a sleeping dog, I was ready to move on. I slowly stopped commenting, and replying to emails. I had my husband teach me how to turn all my notifications off, and I felt zero guilt about it.
I still browse all those pages, to keep up to date on the kiddos, but I don’t have the bandwidth for anything more.
I didn’t leave anyone specific. I left it all, and I’m much happier for it.
I don’t know how the conversation started. My students had begun to discuss “sports dogs”, which, I can only assume meant “support dogs” when one particularly articulate student stated: “Sports dogs help people with different abilities.”
How sweet. This was not a topic I had ever brought up them. For some reason they had questions so I entered into the conversation.
“Perhaps, you are thinking of Service Dogs. Those are dogs that have jobs to help people who need some support, to navigate their day.”
This rivets a group of seven year-olds, because, unlike adults, they firmly understand that there is nothing quite as magical as a dog that becomes a person’s pilot for managing a day. In fact, these kids were, at that very moment struggling in some way, to manage their own.
Surely, each of these seven year-olds stayed quiet for a moment while they imagined having a special dog of their own.
I decided to share a little of my story, with a picture of Miss Kate, and her Autism Service Dog, Oakley. I shared the one above.
They oohed and awwed over his velvety ears and then asked a few appropriately innocent questions:
“Where does he poop?”
“Is he in Grade Four too?”
And then a question, I should have, but hadn't been prepared for:
“Why does she have a Service Dog?”
Well, she has autism.
And I didn't mind telling them this, because Kate herself, has a sweet, sort of pride in her condition, but it was what was coming next, that was going to cause me some trouble.
Not only are there children with autism in this very class, but my prepared speech for adults, when they have questions, simple wasn’t going to work.
I couldn’t discuss the idea of a neurological disorder, and I wasn’t even sure I believed that particular idea, anyway. I had seen so many fabulous neurotypes by now, that I knew autism was certainly not what the experts had been telling us all along.
What then, would I say, to these sweet faces, some of whom carried the diagnosis themselves, and may not even be privy to it yet.
I wish I could say, I called on years of teaching wisdom and autism parenting and let out a sound bite worthy of their ears.
But instead, I stuttered, talked over myself, and said some rambling incoherent version of all the definitions that have been swirling in my head, over the years, as I’ve tried to understand my sweet girl.
Could I even put into words what autism was for Kate? I created this blog, to try, and have yet to succeed.
It may have taken me a lot longer than it should have to come to this conclusion, but I finally realize that the only person that can truly understand Kate’s autism, is Kate herself. So, all I can do is hope that one day, she will explain it to me.
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.
Happy Mail to:
27 Wellington Row
Saint John, NB
Click below for info on getting a custom illustration of your pet, by yours truly!
Grace and Kate's mom. (Shanell)