I don't mind repeating myself because this is a very important message. I've talked about it here and here and here but it keeps coming up again and again so I thought I might address it, at least, one more time.
Autism is an extremely complex disorder. It impairs communication and social interaction while causing restricted and repetitive behaviours. However, this definition tells you very little of what you need to know. It is, simply put, just a string of words. For them to be meaningful in anyway, you'll have to explore a little further. I try to help you do that with this blog, but spending time with people on the autism spectrum is an even better way to gain a clearer understand of autism.
Today, I am less interested in explaining the intricacies of autism than I am explaining how 90lbs of labrador can help a little girl maneuver a world that isn't ready for her. I would like to explain this in the simplest terms, so that this message might be passed on as regularly as possible.
National Service Dog, Oakley, is Kate's constant companion. He travels everywhere with her and here are the reasons why:
She is tethered to Oakley because she has a tendency to wander. Wandering is common among individuals with autism. We can take Kate out in public anywhere, without the fear of her wandering off, or worse, bolting from us if she should see fit. He is focused on his job at all times when he is wearing his vest, so don't forget to completely ignore him so he can concentrate on his very important work.
He provides deep pressure as she seeks it. Kate is a sensory-seeker and needs lots of pressure on her joints for the purpose of self-regulation.
Oakley gives Kate a safe place to go when she needs it. He doesn't ask questions or make demands of her. You can imagine how foreign much of the world must seem to little miss Kate. Having a friend like, Oakley, can be crucial to her mental health.
and finally, the service that Oakley provides that has become especially important to us as of late:
Oakley encourages other children to take an interest in Kate. Often times, her deficits in social interaction can make it difficult for her to make friends. Oakley is able to help Kate suppress behavioural issues and her peers are more apt to accept her into their play.
The girls have a YouTube channel and they'd be thrilled if you'd subscribe.
I had a dream last night, and to be fair I despise hearing those words from anyone, because I know what is to follow is a largely dull description of a mostly boring dream like: "It was my bedroom, but it wasn't really my bedroom....", but I'll tell you about my dream anyway.
I was in my car, but it wasn't really my car because I drive a van, and in my dream I was driving a Suburban. It was all very natural and so was the fact that the gas tank was full, and the floor mats weren't peppered with goldfish crackers and bookstore receipts. I guess I was going on a trip because on the seat next to me was a weekender bag which I can only assume was filled with different variations of yoga attire, books and wine. The window was down, which is odd because it's mid-February but on I drove.
Until up ahead I noticed flashing lights. I slowed down, turned down the radio, which as far as I can remember wasn't on anyway, and pulled over to the side of road. I stepped out of the Suburban and moved towards the flashing lights. There were police cars blocking the road, and all of the officers were standing on the far side of their cars staring at something. I kept walking towards the road block.
When I reached the police cars I could see that the officers were staring down and I followed their gaze to a giant sinkhole at least thirty feet across and spanning all the way to the horizon. In it, I could see trees, boulders and large chunks of highway. I surprised myself, when I asked the officers, "Is there a way to get by? I need to get to the airport." As if my weekend away might be a priority. One of the officers turned around and said: "The airport is down there now." and pointed to the gaping whole before us. So, I said:
"What about the train station?"
Other than pointing out my obvious selfishness, (notice I didn't ask the officers how I could help?) I think this dream is telling me something extremely important about myself.
I need a vacation (and a Suburban), immediately.
I'm not worried about today, for the most part, anyway. That's a luxury I have. Today, will probably be okay. Today she won't run away because Oakley, and others on her team, won't let her.
Kate's version of autism, currently, is quirky and funny and only a little unbelievably frustrating for her and for us.
We rarely see self-harming behaviours or violent meltdowns, anymore. Most of her aggression is directed towards me and I understand that, because I am a safe place.
Her language, although largely expressive rather than receptive is getting stronger and those that know her can usually figure her meaning before long.
I think she has some real friends. I know she has a few thousand folks who read this blog that would gladly play Paw Patrol or Star Wars with her, but school friends are different and so very important. I think you know what I mean. We reached out to the mom of a little girl in her class and then we waited, nervously, until we got a warm reply notifying us that their daughter would love to play with Kate after school someday. My stomach is full of butterflies when I think about this. I suspect it will go well, but I am nervous nonetheless. Kate doesn't really get nervous. She knows she'll kill it.
My worries, these days, are focused in the future. Seems silly, I know. There is no use in worrying. It does nothing for me and even less for Kate. But I worry. I worry so fucking much.
Tonight, I don't feel like detailing my worries for you. I just wanted to let you know. My mind is constantly interrupted by these worries. I do things to keep my mind entertained so that these worries can't completely overwhelm me but they are always there.
Things I do to curb the worrying:
Read a lot about autism
Listen to a lot of audio books (Not autism related)
Talk to Friends
Drink wine with friends
Watch Cat Videos on the Internet
Drink wine with friends while watching cat videos on the internet
Things I don't do, but should do:
What do you do when things get rough; when your mind won't give you a moments peace?
The following is a guest post from one awesome sibling to another:
Dear Matthew – my one and only brother, my best friend –
I know that most people cannot wait to get away from their siblings, to move out of the house when they get married. But I think it’s safe to say that our relationship as brother and sister differs from the norm.
It will not be easy to leave you, even though I want you to know that I am not really leaving you: we’re the best pair. We have an understanding of each other that others cannot comprehend, not even mom and dad. I get things about you that no one else has any clue about; I’ve always thought we must have some sort of telepathy. But I’m not going to pretend that growing up with you as my little brother was always the easiest for me... it was hard to understand why you would get away with certain things that I never did; why it was okay for you to throw tantrums in public but I should always “know better.” It seemed like you would ALWAYS get your way: like it was part of my job as your older sister to make sure I gave up the front seat of the car when you got upset. That I didn’t complain when we had to stop at every train track to watch for trains – no matter where we were going - and stay until we saw the caboose whenever there actually was a train. That I had to pretend I was excited to take our biweekly family trips to the Toledo Airport and watch planes take off and land for what seemed like hours on end. No it wasn’t always the easiest. Growing up together was hard.
As I am writing this letter to you, I am embarrassed to admit to certain feelings that I have felt throughout our 21 years together. However, I think they are important to our story; essential to understanding our relationship and why we are as close as we are. More often than not, I found myself battling with you for attention. I know you never intentionally made me feel like I had to, it was just a concept I had to come to on my own. None of my friends understood what it was like to have a sibling with Autism; I’m not even sure that I understood until I was a lot older. It was difficult, especially during those teenage years, to feel as though I was the only one on the entire planet that lived in this unique world. Our lives always looked so different. It was hard to invite friends over because I knew they wouldn’t quite think it was “normal” when you would walk around with nothing but underwear on (sometimes not even that, ha), hold your breath and wring your hands when you were anxious/excited, or throw things on the floor when you got upset. And I’m sure they never knew what to say when all you’d want to talk about was airplanes, trains, and the number 11 – and probably still don’t, because some things never change ;) But the truth behind it is, even though at times it was hard for me, I never minded explaining to people that this is the way you communicated. It took me some time to realize that instead of trying so hard to “wish” you into my world, to conform you to whatever society claims “normal” is, I needed to come into your world. Matthew Edward Pierson, you are a blessing to say the very least. I am pretty confident in saying that not everyone’s brother calls them on a daily basis when they go off to college – but I was lucky enough to get one each day (sometimes two or three... or ten). Because of you, I know more about airplanes, airports, and airlines than most people will ever know in a lifetime, and I can always count on you to track my flights when I fly. In fact, I bet no one else can say they always get a play by play on the location their plane is flying from, the elevation it is currently flying in the sky, and exactly what time the plane will be landing to pick them up (down to the minute) – including whether it is delayed and how long. I also know that sitting over the wing is the safest place to sit on a plane ever since you took it upon yourself to get into my flight plans to Georgia last year and switch my seat from where I was sitting with Bob’s family into a seat over the wing: even though I was upset for a while after that little ploy, I know you did it to keep me safe. Not everyone’s brother cares that much. I am lucky that you love me as unconditionally as you do. You may not tell me “I love you,” but you show me in ways that means so much more than words can express. Thank you for being the person that you are. You are an intelligent man that can always make me smile, which means you always know how to make my day better when I am having a rotten one. I’m not sure that you know this, but I learn from you every day, Matt. You have taught me an enormous amount of patience, how to overcome even the toughest of challenges, and how to be genuine – because you are the most genuinely honest person that I know, and there needs to be more people like you in this world. You say what you mean, even though sometimes it’s not what people want to hear. I’ll tell you one thing, if I ever want to know exactly how my hair looks or if my dress is pretty, I can always count on you to tell me the truth (lol). Matty, you have inspired my career, directed my passion, and encouraged me to be the best teacher and person I can be. You have given me a deeper understanding and emotional connection to individuals with disabilities, which is essentially why I love my job so much – and for that I am forever thankful.
I want you to know that you will always be my brother, my best friend, and my partner in crime. Even when I get married, our relationship will never change. You can still call me every day and tell me about the flight you are currently tracking, explain something about the Yankees and the Lions that I know nothing about, and ask me 5+ times “what are you doing?” I will always pick up the phone. I will always want to talk to you. No matter what, we will always be the best pair. I will still understand you better than anyone, and I take pride in that. I take pride in the fact that you are MY little brother, because I am proud to be your older sister. I don’t honestly know whether you truly understand the words I am writing,but I’d like to think that most of what I said you already know to be true. Sometimes I’d like to get inside your head just to be sure,because I like to know the answers, but really I think I already do. Thank you for being more than just my brother – you have already turned out to be my hero and you’re only 21 years old – that’s a pretty awesome accomplishment if you ask meI am so very blessed to have you standing up with me on my wedding day; your presence alone will calm my nerves (not about marrying Bob, of course, but about the crowd of people watching!) I could not have asked God for a more perfect brother than you, because I truly do not believe there is anyone better. I love you to the moon and back bubba, and even that doesn’t cover it.
Love you always, Sam
There is something fundamentally wrong with a system that takes the moral high ground in terms of their implementation of extreme full-inclusion when it's failing students, staff, and their families at an alarming rate.
American friends often ask me if my autistic daughter is mainstreamed or in a school for children with autism. I always answer the same thing:
In my province we have full-inclusion. This means that all children regardless of diagnosis or needs are placed within the regular classroom. (If I stopped here, it would sound ideal, as if my Province is on the right side of history in terms of educating 'exceptional children', as if my Province is progressive and exemplary in its treatment of individuals with exceptionalities, as they say.
and then I continue:
This typically results in chaos within the classroom. Today's classroom is so very different than any classroom you might remember. Unless you work in the system, you might be shocked to spend even an afternoon in one of today's classroom.
(The below description is not my particular classroom composition but this particular classroom does exist, and it exists right under your nose. In fact, maybe your child spends her days in this classroom.
Imagine an average of 25 children per class.
One teacher and one educational assistant (if you're lucky)
4 confirmed diagnoses of ADHD
2 Confirmed diagnoses of autism (1 severe non-verbal resulting in need for support 100% of the time, and 1 with debilitating anxiety and hyperlexia resulting in frequent crying and outbursts )
1 Undiagnosed mental illness resulting in anger, hitting, biting, spitting, swearing, resulting in need for support 100% of the time.
7 'typical' children
1 Child who has recently experienced serious childhood trauma
2 Children with various learning disabilities (Dyslexia, Dysgraphia, Dyscalculia)
2 Gifted children (Is that even the term we use anymore, it doesn't matter though, it's not like we have time to get to them)
1 Medically Fragile child
We are all in the same room, in a (to borrow a term) resource-starved situation.
There are multiple IEP, SEP and violent incident reports to be managed.
The children must be able to function within the classroom with as little disruption as possible in order to maintain the integrity of the learning. (If you're a teacher in this system you can't help but smile a little at this thought).
In what utopian system is there a classroom without almost constant disruption?
Do you think I exaggerate? Come see for yourself.
Let me break down a ten minute period for you, because to detail an entire day would be far too much for either of us.
You leave for work around 7:00am. You are already agitated because you've had another argument with your spouse about how much you spend to maintain your classroom.
You find the drive-thru that serves your morning drink of choice and you drive on to work.
You make nervous comments to your colleagues, upon arrival, about potential difficulties you may face today. Will he blow? Will she refuse to stand for O'Canada? Will he cry upon being asked to remove his boots? Will she hit, bite, spit before the recess bell?
You laugh because that's how you cope.
You hear the bell. You are already standing outside your classroom waiting for your class to come into the building. Your heart is warm because here they come, but nervous, too, because here they come.
Will little Mary learn a new curse word today? She is so innocent. Surely, she'll never forget the day her classmate bit her teacher while screaming obscenities.
How will you make time to work with your non-verbal little doll today? She is acquiring language at such an exciting rate. It would be amazing to spend some 'floor time' with her.
She has yet to see the SLP, PT or OT because they are so overbooked themselves, they can barely manage.
Will little Ben be bitten for reaching for another's child's play dough? He won't be able to cope with that today. He's tired and he looks as if he didn't sleep well and he certainly didn't have breakfast this morning. You rush to find him some fruit.
The Math lesson was postponed again because the safe word was called at 9:25 am and the entire class was evacuated as one overwhelmed little guy, tried to take the room apart in anger.
The bell rings because you are supposed to send them out for recess. You are supposed to pee and grab a snack. Ha! You stand defending yourself from the sweetest, brown-eyed, rage-filled little person you've ever met. You wish you could scoop him up and hug him and tell him everything will be okay, but this is more than you can handle. You are not trained for this and you are terrified that you are making it worse.
He can't manage right now and your job is to help him manage. You are failing him. You are failing all the other children in your class who've been sent to the library for their own safety. The curriculum is calling. When will you teach them number sense? 5 Star Writing?
Your lesson plan sits on your desk.
Your intentions were good. Didn't you just spend your weekend laminating the math centres you bought on TeachersPayTeachers.com? Didn't you just argue with your husband about the cost of the lesson, and the laminator sheets.
I have to stop there. To go on would indicate that no learning of any kind could ever happen in the classrooms of today. Of course, it does. We teach the children in small groups (we call it flexible grouping) but we really mean it gives us a chance to focus on some serious learning issues when we can.
I don't vent here because I don't love to teach. I adore it. It's all I could ever imagine I could do. I'm just desperately frenzied in my need for help within the classroom, within all classrooms.
Our children deserve better. And so do we.
I know you struggle. I know that verbal doesn't mean what people think it means and I know how crushing it can be to watch other kids reject your child because they're different.
I also know it can be unbelievably frustrating and infuriating to constantly feel you have to prove your child has a disability that requires services and accommodations.
You might be spending your days attempting to prove the diagnosis to family and professionals who prefer to believe your child's issues are a result of shitty parenting, your paranoia or even a diagnosis-happy generation.
You probably hold your tongue (or maybe you don't) when you hear autism being described as the 'diagnosis du jour' or the 'flavour of the month' and you might even have to count to ten when people make comments like, "Autism! In my day we called it spoiled brat."
I applaud you for staying out of jail, I do.
You're up against it and you keep going and you spend your days trying to prove your child is disabled (and that hurts like a motherfucker) and you are forced to consistently repeat all the things that are ''wrong'' with your child, in an attempt to get the services they deserve.
Then you feel guilty because there are so many at the other end of the spectrum, where the autism is so very clear, and so very serious and you find yourself wondering if you have any right to feel bad, at all.
"He doesn't look autistic?"
"But, she's so cute"
"Will he grow out of it?"
"What's her talent?"
"At least he can talk."
You see the dark side of the quirky version of autism'. The side where your child has no friends and although appears to be able to function in society, will probably never live independently, paralyzed by anxiety and the fear of social interaction, or conversely, oblivious to their social deficit and so aggressively social that people shy away unsure of how to interact.
And while you stay awake at night wondering if they'll have friends, be invited to birthday parties, have a relationship, live independently or any of those things that all parents wish for their children, you're also going over their deficits again and again so you can list them at tomorrow's meeting when the school team tells you they are removing support because there are other children who need it more.
You're constantly being asked to prove there is something wrong with your child and there is something inherently wrong with that. That's the kind of thing that can tear a person apart.
I write this, not because I have the answer, but to let you know that I live here, too, and so many of us do.
Below, the three and half cake pops that "turned out" and next to those gems, the photo of what they were supposed to look like. WTF cake pops? Why are you trying to make me feel bad? I consider myself a pretty sophisticated thinker and yet these small balls of cake and candy seem to have mystified me. This is bullshit and I don't like it one bit. I documented our progress as a warning...a cautionary tale, if you will. Don't promise your kids you'll make cake pops with them. Just spend that small fortune on wine (for you, obviously) and candy (also for you) and send those kids outside to play.
This was after I cleaned up most of our mess. The girls were well-behaved and patient, even when I growled at the instructions multiple times. Possibly, they were a little afraid because this little snow day activity was going to be more work than it was worth, and it was written all over my face.
I think the moment I knew that these cake pops were just little sugary assholes sent to ruin my day, was when I tried desperately to mold some cake into one of the little plastic molds that came with the kit. The kids tried equally hard, and produced, what looked like, little turds, and then I found a place in the trash for those stupid fucking molds right next to the frying pan that just wouldn't come clean this morning. Come to think of it, maybe today wasn't the day to test myself with the fabled cake pop?
There were many, many bowls of tiny colourful decorations, because that's what "good" moms do. This bowl, was especially memorable, though, because I dumped it all over the kitchen floor before we even got started. What's left in the dish is what I recovered from the counter. Those other little green bastards are still floating around the kitchen and likely will be until Easter.
Instead of using those goddamn molds, I told the kids to roll the cake into little balls with their hands. This was the most successful part of the afternoon. There was even a little hope, at this point, that these little fuckers might actually work out.
You're not supposed to have infinite patience when you are seven. You're not supposed to have an in-depth understanding of autism and disability and how it can affect a family. You're not supposed to quietly take a back seat when things get hard for us...for her...for you.
You're supposed to be selfish. Not the mean kind of selfish, but the childlike kind of selfish where you put yourself first because you're a kid and that's okay.
You're supposed to exist in a bubble, for at least a little bit longer, and you're supposed to have no idea that there is a world outside of that bubble. Your bubble should be full of play dates and birthday parties and school functions.
You're supposed to demand attention, and scream that things aren't fair, sometimes.
Did you know I've been noticing how you watch my face for reactions every time your sister has a moment? We'll call it a 'moment' because this is about you and you know exactly what I mean. You glance at me looking for signs of frustration', or tears and your sweet brown eyes are, for a moment, afraid of what you'll see. We're soul mates, you and me, because I know if you saw those things in my eyes your heart would drop and you would come to me and do anything to take those feelings from me. And you know I'd do the same for you.
I want you to know those feelings aren't always bad. When you're older you'll understand more about this. It's okay to feel frustrated and sad, sometimes. I know you want to protect me, but I promise I'm just fine. Your sister feels these things much of the time, too, you know. She just doesn't show it the way you and I do. Sometimes she uses aggression or anger to show us she is sad or scared or confused. She is never really angry at me, or you. She is just afraid. It's my job to make her feel safe and when the thought of this gets to be a bit too much, I sometimes get sad or even cry a little, and this helps me cope. It's a good thing. This must be so confusing for you. I wish it wasn't something you had to learn right now.
I know you get angry at her, sometimes, too. For all the patience you've shown, there are times when it becomes too much for you, ,too.
You have your moments, you do. Like when she destroyed the American Girl set it took you hours to arrange. You made tiny cardboard tables and chairs complete with tiny, colorful napkins from tissue paper that day. I watched as you arranged your dolls as if they were having coffee and discussing a great book. Was the dark-haired doll supposed to be you? Was the blonde, your baby sister? Do you imagine growing up and having coffee dates just like that with your sister, your best friend? I bet you do.
I dream of that for you.
Most of the time you play so well. You translate rules and confusing social norms for her as if you're her interpreter, and I guess in some ways you are.
You go into bed with her when she can't fall asleep and you even watch her 'baby shows' as you call them, but I think you secretly like them, too.
Just yesterday, you offered your tooth fairy money to help buy her the Fisher Price Zoo she found in a catalogue. She's going to work on earning it, without the aid of your five dollars, and you know what, the day she earns that toy, you'll have earned something, too. A date with mom and dad and a special treat, too. It will be something so special and out of the blue to make you smile. Maybe some new doll clothes. I can't wait to see your face. I wish it could be so much more.
Your sister gets a sticker for her chart when she falls asleep in her own bed, or puts on her own pajamas, among other things. And you watch as her version of doing these things involves much support from us. We slide her pajama top over her head and praise her for helping pull it down. We lay her clothes out in the morning and hug and kiss her for letting us put them on her without a fight. Meanwhile, you've dressed yourself, made your breakfast and are sitting patiently, waiting for a chance to talk with us about what the day might bring. And those are the good mornings.
My chest hurts as I type this. My eyes full of tears because you are so amazing and you have given up so much of what is rightfully yours.
You deserve more kisses and more snuggle time. You deserve more bedtime stories and more times when someone helps you pull your pajamas over your head and pours your cereal. You deserve to be cranky, and frustrated and most of all you deserve to never worry, because it's my job to do that.
Sweet Grace. I Love You. I'm so proud of you. I wish it was easier for you. I'm Sorry.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)