Miss Kate is not shy. It’s one of the most notable ways her autism makes her unique. We rarely venture into public that Kate does not strike up a conversation with a complete stranger. Often, these strangers, are deemed Kate’s new best friend before we even make it back to our van. These ‘best friends’ may come in the form of a baby she accosted in its stroller, a mom choosing ingredients for a meal none of her children will eat or, and more often than not, an older man browsing the diabetic candy. We walk along the aisles and I answer her questions absent-mindedly, forever grateful that her service dog is keeping her near me, rather than chasing down the aforementioned baby. She asks things like: “Mama, should we take turns saying sumfing nice about me?” And I smile down at her and say: “I love you, Kate.” And she says: “Yeah, me too.” Her ego is strong, as you can see, which is probably why she never hesitates to engage with another person. It’s hard to say, and the older she gets the less comfortable I feel inferring how she feels, but it would seem that she assumes chatting with her is your privilege. And let’s face it, it quite often is. She comes on strong; I’ve said it before, and it can be a turnoff to her peers, though the adults find it quite entertaining, at times. Kate is an equal opportunity lover of people. She simply does not care if her friends are the people she meets out and about or the children in her class. However, her somewhat aggressive approach has made it difficult for Kate to make meaningful connections with children her own age. I suppose I shoulder some of the blame because she's begun to call her peers her “fans” and her “subscribers”. Her social media presence has made her a little difficult to say the least. So, I asked her, because I'm wondering how she relates to her classmates. I wonder how she attempts to make friends. “Kate, how do you make friends?”
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You see a dog out in public and with his velvety ears, smooth coat and impeccable behavior and you simply cannot stop yourself from approaching him. How wonderful, you think to yourself; a clever dog wearing a vest and moving around the grocery store like a little gentleman. Will wonders never cease? You remember seeing a documentary on working dogs a few short years ago and it was so very interesting. You think you'll just pop over with a kind smile and a handful of questions for his handler. Surely, she'll wan't to discuss the dog, as she must be very proud of him. Sound like you? If so, I have something very important to tell you about those stellar service dogs and their handlers. And because you have such a strong interest in them you'll likely listen very intently when I say: LEAVE THE DOG AND HIS PEOPLE ALONE. Not just because they look busy, or because they are already conversing with someone else, but because no matter what they are doing they have the right to do it without being asked extremely personal and private questions by strangers and yes, even friends. In order to make people better understand my point, I'll simply switch out the term 'service dog' and insert the term 'wheelchair' and make a list of things that have been said to me, my husband and my service dog friends: After all, a service dog, like a wheelchair, provides his user help with a disability that is, again, NONE of your business. I won't go on about why someone might need a service dog because I have done that, here and here and even here, and frankly, I'm getting tired of explaining it. And you should know, that though I advocate for my daughter on this blog, that I don't have to do it while I'm getting groceries, watching a hockey game or any other time I am out in public unless I want, and you can't make me. I don't mean to sound cranky but you're making me crazy. Okay, so here goes. The list of questions that we service dog users and handlers get every single time we step out of the house (and I reserve the right to add to this list at any time): Is that wheelchair in training? OMG, I love that wheelchair. What are you using it for? Excuse me, but do you mind if I just touch your wheelchair, (the leather) looks so soft? So, why do you have a wheelchair? My cousin had one for PTSD. Oh Cool! I saw a documentary on wheelchairs once and it was awesome. My mother knew a guy whose who had a wheelchair once. You can't have wheelchairs in here! Is that a real wheelchair? That poor wheelchair. Emotional Support wheelchair? and my personal favorite: Prayers for your wheelchair. It's been bothering me; her fearlessness. Not just for obvious reasons, like her leaving safe places or taking risks and making some very questionable decisions. It's been nagging at me that as she nears her seventh birthday that her love of strangers and her extremely high level of self-confidence is going to become a bigger problem.
If you've yet to meet Kate, in person or via this blog, you'll need to know a few things about her for this to make sense. Kate has autism. Her autism is hers and hers alone. Like all autisms, it's unique to its person and their environment. Kate’s happens to present as a neurodevelopmental disorder resulting in communication deficits, issues with social interaction and play, rigid-thinking, repetitive obsessions and behaviours and a confidence in herself that would put Kimye to shame. Stick that definition in your DSM. While I've simplified Kate's version of autism with the above paragraph, it will give you the basics of what you need to know to understand our most current issue. To frame the problem I'll explain an incident that happened over these brutally unscheduled and unpredictable holidays. We decided to attend a basketball game. Armed with electronics, Pokemon cards and a wrestler or two we figured we could manage at least the first half before her highness decided she was done. Instead, during half-time she spied some boys horsing around in front of her. She made a dash for the boys because the promise of wrestling and otherwise getting her sensory-seeking on was too much. I grabbed her and held her back, as this was not my first rodeo. Kate bolts towards anything she finds interesting and I had spotted the boys just as she had. “Mama! I'm going to play with my friends!” “Kate, we don't know those boys. We aren't supposed to talk to strangers.” “Mama, I have to show dem my Pokemon cards!” She's desperate to go now. She sees them moving away from our section and she is trying to peel my fingers off of her arm so she can join them. I imagine, for a second because that’s all I'll allow myself, the look on the boys faces when she ploughs into them with her Spider-Man bookbag and a fist full of Pokemon cards. They're older, eleven at least, and they'll stop horsing around long enough to stare at the little blonde girl with the LeBronesque headband that she demanded to wear (because basketball) and her pink t-shirt, and they’ll wonder what to do. She dig out a wrestler and begin her version of play. The boys will back off, looking for a parent to save them. What is she saying? What does she want? They will ultimately decide that the kindest thing to do is to walk away. They’ll move quickly to a new area leaving her behind and continue with their game. Undeterred, she will gather her things and move to follow them. I'd swoop in and carry her away. She would protest and cry wanting to be with her ‘friends’. We’ve made countless attempts to help Kate intellectualize the social rules of play. So far, it hasn't stuck. So you see, as endearing as her confidence is to some, to her peers it is frightening and weird. Right now, she cannot read the fear or disapproval on their faces. She doesn't register those things. Which is a blessing, I suppose. It's painful to watch her keep going back for more and even harder to tear her away but thankfully she is not bothered by much these days. She's a tad frustrated that her mother won't let her play with whoever she wishes; the boys she spotted at the basketball game, the baby at the grocery store (whom she tried lifting from her carriage) and the FED EX guy whom she credits for everything she's ever received in the mail. But, otherwise she doesn't take it personally. She's happy and that's key, isn't it? For now it's our problem and I guess that’s okay. It’s that time of year again. When the fragrant smells of holiday baking, the flickering lights of zealous holiday decorators and the anticipation of the big guy’s visit all come together to make for seriously painful sensory reactions from our kids on the autism spectrum. Sensory-defenders may receive so much input from the holiday assault on their senses that they may need a quiet place to process, or even a total escape from the overwhelming sights, smells and general excitement. You may see aggressive stimming (hand-flapping, rocking, spinning, verbal repetitions), meant to help regulate a nervous system gone off the rails, so to speak. Sensory-seekers may feed on the sensory onslaught and get further amped by the excitement of the season. They may act aggressively, looking for pressure, or other sensory-regulating motions. You may see aggressive stimming, meant to help regulate a nervous-system gone off the rails. You see how that works? And to be fair, most kids (and adults) are a complicated combination of both. So, what can you do to help? Here are three easy steps that’ll help your friends on the spectrum and their righteous families enjoy the season. Chill Out, Just a Little. I’m not asking you to stop competing with your neighbors for the best Christmas lights display, and I’m certainly not asking you to put away the the Santa that sings Mele Kalikimaka while twirling in his grass skirt. I’m just asking that you be mindful of the fact that these things can be overwhelming to a population of children and adults that is quickly growing. Perhaps Santa could be switched off for a few hours, or maybe the lights on your tree don’t have to be set to ‘dazzle’ for an evening or two. Be Ready for Plan B They and their parents may need an out, a plan b, an escape route, and while they’ve likely planned it out before they’ve even left their door, it is up to you to help them execute it. Maybe they’ve got to leave quickly. You can grab coats, or wrangle siblings and meet them at the door. Maybe, they just need that aforementioned quiet area. Direct them to a room with low-lighting, no sound and complete privacy. Don’t worry, parents generally won’t be shy in telling you exactly what they need. Just be ready to listen. Don’t Take it Personally Sure, you’ve spent hours perfecting your place settings. The Christmas crackers are homemade and each contains an item that your guests will adore. You’ve made different dishes for the tastes, allergies, and lifestyles of all your party-goers. You’ve even dimmed the lights, lowered the music and prepared for your sensory-sensitive, food-aversive guest. And he or she, walks through the door, takes one look at your jingle bell earrings and falls apart. Relax, it isn’t you, it’s your stupid earrings. No, seriously, it’s just the combination of everything was too much. Keep these things in mind this season, and we’ll all have a Happy Holiday. My kids are the apples of my..eyes, the fruits of my...well, labour, the icing on my cake, the silver lining to my cloudy disposition. I love those two tiny people more than anything and yet...I have my suspicions that they can, on occasion, be complete assholes. I’m not just talking about their indifference to a good night’s sleep or their penchant for toys that make noise. I’m talking about the times they make seriously misguided choices resulting in rude, cruel or just plain ignorant behavior. And this might be hard for you to hear, but I’m guessing your kids might possibly be guilty from time to time, too. Your kids (and mine) will sometimes lie, cheat and otherwise be less than stellar human beings. I know that when you watch them sleeping they look like perfect angels but trust me, I work with children for a living, after all, and none of them are perfect. Even little N, who told me I was better than a Pokemon, and little G, who said I smelled like Skittles, are not perfect. But, you know what, that’s okay. Just make sure you are aware of it, and deal with it when need be or else those ‘perfect angels’ might grow up thinking their bad behavior is okay. It’s Probably Not a Reflection of Your Parenting I don’t know you, so I can’t say for sure, but I’m pretty sure the vast majority of us don’t raise our children to be mean. So, if you suspect your child is dabbling in being a class A jerk, don’t beat yourself up about it. And, if you notice my kids are doing it, kindly let me know. I’ll look at the facts presented with an objective lens (or more likely, a ‘what did she do now? lens) and decide how best to deal with it. You’d be smart to do the same. It’s Exploratory Behavior (Most of the Time) Sometimes kids like to try things on for size. Is my kid acting ‘too cool for school’, ‘like a mean girl/boy’ or a total bully? This doesn’t mean my child (or yours) is any of these things, it just means they are exploring their options and it’s up to us to make sure they don’t decide to continue down a bad path. Child-centered media makes being mean look pretty glamourous. Have you ever watched an episode of anything written with girl viewers in mind? It’s an uphill battle for sure, but I’m willing to fight. You Probably Did it Too You might remember your childhood as being rosy, but the truth is we all made some poor choices. Can you remember ever being on the wrong side of a teacher? Remember taking a turn in some bullying yourself? Did you ever lie to your parents to get a friend or sibling in trouble? Sure, you did. You most likely didn’t like it, especially if you spent any time on the other end of that kind of behavior, so be aware that your kids might be guilty, at times, too. That Doesn’t Make it Okay Just because you don’t teach it, or encourage it, doesn’t mean you shouldn’t consistently address bad behavior. I’m not talking about whiny, cranky, or defiant kids here. I’d have a second full-time job if I had to address each and every misdemeanor. I’m talking about when our kids hurt others with their words or actions. Teach them it’s not okay, and remember to model what you expect. It’s okay to adore your children, but it’s also important to be aware that it’s our job to take an honest look at how they are behaving and help them make the best choices they can. I woke up. I stepped gingerly out of the bedroom. I found my husband. I had to ask. I didn’t watch the results coming in because, well because American politics is stressful and anger-inducing. American politics, with its anger and fear-mongering can make you want to curl up with a picture of Justin Trudeau and fall asleep wrapped in a Maple Leaf decorated duvet while listening to The Tragically Hip. “Who is their President?” I asked. I didn’t expect I would be surprised. Surely, common sense prevailed. Surely, I would get to tell my girls that history had been made and there would be a Madame President to discuss over breakfast. “The Bad Man.” My husband said. “No, you’re just saying that.” I laugh. He wanted to see the look on my face. He wanted to have a laugh, right? “I’m not kidding.” He said. It’s one of those things you know. You’ll always remember where you were and how you found out. Like the day Princess Diana died, or September 11th or when you read your first Harry Potter novel. This won’t be measured prose, or even well-thought out, for that matter. This is a completely reactive and emotional response to one of the scariest things I’ve ever had to witness. You knew I’d write about it, right? I feel I’m at a safe distance, up here in Canada, to see your American Election results for what they are. A complete and utter abomination of all things good and fair. A terrifying testament to what a large portion of your country is thinking. A confirmation of the racism, misogyny, and general hate in the hearts and minds of enough of your population to elect a fucking MadMan. He’s a bad man, an evil man, and he didn’t even have to hide it from you to garner your support. You elected a boogeyman and now you have to live with it. Many of you voted for Hillary. Many of you see the monster for what he is. You fear for minorities, people with disabilities, women and children, LGBTQ and those seeking asylum from dictators and wars and other such atrocities. You’re shocked. You’ve no choice but to watch the next four years unfold like some fucking slow-motion nightmare from which you can’t wake up. I’m so sorry. Come up here. We have civil rights and freedoms for everyon. We can protect you from him. I guess, it’s true, anyone can grow up to be President of the United States. It’s brutal, to be honest, to watch Kate become confused. Though I’ve little experience with Alzheimer’s patients, it occurs to me that there might be a strong similarity, at times. Surely, there is some research in this area. I’ll have to check, at another time. Tonight, I sit instead, and try to imagine myself in Kate’s world. Sure, she’s painfully literal, and rarely gets our references, but those things are often the things that television writer’s use to ensure a giggle and to let us know the character has autism of some kind. It’s surface stuff. Those are the things that we can usually find the funny in. Thankfully, because the funny is so very important. However, Kate’s confusion is not funny. It’s not a one-liner on a sitcom or the fact that you must be careful not to ask her to ‘hold her horses, or keep an eye on something. It’s more than that. It can be absolutely devastating. It’s about the lens through which she sees the world. A lens which changes the most basic of social interactions into bizarre rituals that intimidate and mystify. It’s about the connections she cannot make, though she tries because she would love to have a best friend to play with even if she doesn’t always understand the game. It’s about her desperate attempt to understand the concept of time and her anger that her birthday doesn’t come back to her soon enough. It’s about the confusion that scares her when she works herself into a meltdown over things that just don’t make sense. And I hope, so much, that we are helping Kate navigate all these things in all the ways that she needs. I don’t have a thyroid problem (I had that checked) or any other medical reason for weight gain. In fact, I don’t have any legitimate excuse to be fat, at all. I’ve suffered no serious emotional setbacks in recent years (though I act like I have, at times; but I tend towards the dramatic on a good day). I simply must have decided, at some point, that I would no longer limit myself in the areas I could control. Food, obviously, being one of those areas. I guess I decided I wouldn’t like it restricted in any way. I likely would have allowed myself some unlimited spending as well if I didn’t think they might restrict my food in jail. I feel like I’ve taken on the attitude of those fat cats that I so admire. You know, the ones that say, “I want it all and I want it delivered”. Those cats, those self-serving little assholes have kinda been my heroes lately, and maybe that’s not for the best. By the way, this isn’t going to be some declaration that my attitude changes today, or worse, an invite to follow me on my weight-loss journey because I’m still working on those things and I don’t really want to share it with you or anyone. Part of my problem, you say? Perhaps, but that’s not for you to worry about, is it? This is, however, a journal, of sorts, of some of the things gaining the weight has caused me to lose. With each pound I’ve gained, I’ve lost a little more confidence. I do boast the fiery temperament and the strong liver my Irish heritage affords me, so it might surprise you to know, that I have serious confidence issues. Maybe you relate? Maybe, if you know me, you’re thinking, ‘she wasn’t lacking confidence Saturday night when she argued loudly that a Barrister was a person who served gourmet coffees.’ But I do feel inadequate in many ways, with my weight at the top of the list. Sometimes, I think what appears to be confidence might, in fact, be just the opposite. We fat girls have to compensate somehow, I guess. With each pound I’ve gained, I’ve lost the energy to do the things I used to love. This is the worst of it, I think. I do want to set a good example for my girls. I do want to be healthy and strong, and really, really rich (well, I do). I remember how it feels to have the energy and strength to play with my kids and to ski with my husband. I am rudely reminded with every new ache and pain that this weight is going to stop me from doing those things, or at least stop me from doing them without fear of a major injury. With each pound I’ve gained, I’ve lost the ability to shop in a regular store. Do you know how purely shitty it is to love clothes and fashion and basically be shunned from it because of your weight? Sure, I did this to myself, but can this fat girl not even get a sweater without that fucking keyhole cut-out at the neck that reminds everyone that fat people dare only show that tiny triangle of skin. How I despise having one store to choose from for all my clothing needs. How I hate when I see every other fat woman wearing the same Fall wardrobe and we exchange a glance that says: ‘I hate these fucking fat girl clothes and I know you do, too.” With each pound I’ve gained, I’ve lost the respect of strangers. If I’m not crazy, there is a difference in the way I am treated in public. Strangers are less kind and less helpful. I lack an authority that comes with being thin and put together. Maybe I’m assumed lazy, or unpleasant. Maybe I make those same assumptions about other fat people and feel shitty about it. I wish I didn’t have to wear it day in and day out. But, if wishes were fishes right… Anyway, you know me. If I’m over-sharing embarrassing personal thoughts to ten thousand people who’d really rather chat about autism, it must be Thursday. Well, I’m so glad you asked…*walks to podium and adjusts mic* Let’s start at the beginning, shall we. A few short years ago, in Disney World of all places, I attempted to dress Miss Kate up in a sparkly Princess Jasmine costume (her sister was all decked out as Tiana from “The Princess and the Frog” and I figured I would parade my two little princesses around the parks like most obnoxious visitors. Kate had other ideas because as soon as the bedazzled material touched her skin, she reacted as if the cloth was on fire. This might seem like a tantrum of sorts to some. Some kind of, I don’t want to be Jasmine, I want to be Belle or Buzz Lightyear, or Frank Underwood, or some such shit. Well, a mama knows, and I knew that this wasn’t a costume preference tantrum (though we’ve had a few), this was a full-on sensory blowout and it told me what I had suspected for months before. Our little girl had autism and it had been cemented for me at the happiest place on earth. Since then, we been through a lot. Many, many hours of therapy (with great success) and all the ups and downs that come with raising a child on the spectrum. She began to manage her sensory issues much better. Chewy tubes and body brushes, weighted blankets and pressure vests, a body swing and a sensory lamp to name a few of the things we’ve spent load of money on to help Kate learn to self-regulate. There is really nothing we haven’t tried to help soothe our girl. These things combined with some intense therapies helped Kate manage some of the sensory issues that would send her into the dreaded meltdowns. There were many times she was carried kicking and screaming from the grocery story because the giant den of sights and smells was just too much, and (like rugby, as my husband points out) I just didn’t get it. We are in a better place now, because she has learned to self-soothe in many constructive ways. So, she found her way back to costumes, only this time it was in the form of her first love and hero, Buzz Lightyear. Buzz was cool, and he had phrases that could be repeated over and over and would almost always elicit a smile. Soon she would find The Teenage Mutant Ninja Turtles and their ninja ways would give her great comfort. Eventually, she would find a whole league of superheroes she could pretend to be and she hasn’t slowed down a bit. Now, I’ll attempt to explain why autism seems to be synonymous with Superhero. Lofty goal, says you? Nah, this is gonna be so much easier than introducing a new food, bedtime after a routine change or ‘explaining rugby to your uninterested wife’. I think there are a number of reasons dress-up play appeals to Kate. Firstly, she is playful at heart, and this is particular exciting for us because play can be an issue for children with autism. Repetitive and ridged play can often hamper social interaction with peers. While, her play can be very structured and a bit one-sided, and this is a nice way of saying: it’s Kate’s way or the highway, she does seek to play with her peers. The dressing-up seems to appeal to both her sense of fantasy and the fact that she very much relates to the characters she impersonates. She tends towards superheroes for the most part, though her closet boasts some seriously princessy costumes as well. Here’s why I think she relates to the supers of the world. Superheroes have an alter-ego: Just like a child on the spectrum, superheroes live two distinct existences. The one inside their complex brains and the one for the outside world. I wish I could express that idea far more eloquently, but that’s what you get. Superheroes also live two distinct existences. Is it possible that our little girl and her spectrum friends, in some way, make that rather abstract connection? You bet your ass it is. Superheroes can be solitary: Superheroes tend to live a very solitary life. Few Supers can relate to the average person because of their vastly different lifestyles. For kiddos on the spectrum, peers are great, but can be quite difficult to relate to, at times. They can’t possible understand the logistics involved in the organizing your toys just right while the seam of your sock just isn’t right. How could they possible comprehend the herculean effort a day at school can be with its people and their incessant and unrealistic demands? Superheroes have different/special abilities/downfalls: This is key. Superheroes have super-sensitive hearing, sight or strength, among other powers. Children on the spectrum also report many of the same abilities, only the real world application of such powers can result in some painful sensory-overload. Do you think Superman ever had a meltdown? Surely, he has. Superhero language is often scripted and therefore safe: Sometimes it can so hard to know what to say or how to react. Catch phrases such as Buzz's “To Infinity and Beyond”, TMNT's “Go Ninja, Go Ninja, Go Ninja Go” or Wolverine's "You know sometimes when you cage the beast, the beast gets angry" (okay, maybe that's a stretch for some) can often fill in when the right words just cannot be found. These phrases will often encourage a positive response from others (until they become a tad overused) and they are safe and reliable forms of communication. Superheroes are freaking awesome: Everyone loves a superhero. Except their nemeses (I had to look that plural up), of course. Why not adopt the persona of someone that evokes love and adoration from the masses. When it’s tough to fit it our little people have to find a way to stand out and still reach the rest of us. As cheesy as it may sound to some, there are superheroes among us, and they live on a spectrum of which we can barely conceive. In fact, you might want to feel honored to be among them. Dear Quiet Moments, I suppose you think I yearn for you. You’re so cagey and rare that you probably think you’re at the top of my priority list. You don’t even make my top three. In fact, you’re rather dreadful. Worse than the dentist and a pap on the same day. Worse than two kids with the flu and an incontinent cat. And worse than the sound of windchimes. Just me? The idea of you is so distressing that I wrack my brain for something to focus on should you be thrust upon me by some unknowing Grandparent or other kind soul. I remember that last time I had a moment to think. It wasn’t date night because Alex and I are pretty good are filling those nights up with mindless activities that allow us to detach from thinking. It was a Sunday afternoon when Alex went skiing and the girls went to see Grandma. I noticed I was alone and frantically organized the house, avoiding only the laundry, because, please I was not that desperate. Once the house was in order, I began to sift through the pile of books beside the bed. Books that I had bought or borrowed with every intention of reading, someday. They are terribly neglected in favor of books on autism interventions but this would have been a great opportunity to have a go at one. As I was flipping through a fantasy novel that would have been perfect had I been able to get lost in it, my mind was infiltrated with the thoughts I spend all my cognitive energy trying to push out: Did I do this to Kate? No, that is silly. I am smarter than. I’ve read countless books detailing the link between genetics and environment in autism diagnoses. Experts haven’t blamed the mother for years; not since the ridiculous refrigerator mother theory. I reached for a text to back up my thoughts and placed the fantasy novel back on the pile. Wait…I can’t do this again. I need to spend some time on me. Maybe I’ll watch a little TV. I turn the TV on and find I have multiple choices on our much neglected list of recorded shows. As I scroll through I see we have twelve episodes of Teenage Mutant Ninja Turtles taped for Kate. Funny Kate, such a boy brain, she has. I wonder if autism really is the ‘extreme male brain’ as some have suggested. I wonder if I contributed to that when I forgot to take my folic acid. Or maybe I didn’t forget. Maybe I took those vitamins religiously. I can’t remember. I remember I drank root beer a few times. Probably a diet coke or two. That can’t be good. I know I ate feta cheese. There is something about feta, isn’t their? I flew to Boston. Has anyone studied the effects of air travel on the fetus, yet. I’m going to check… On and on this will go until I can root myself in an activity that is either more meaningful or mind-numbing. Either will do, I don’t really care. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |