When I first saw an Autistic Cycle and took a couple of steps back.

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Ponies in a row. / Photo by KidZond.

 

The conversation went like this:

Me: She’s doing really good about getting off to school. We’ve been making it to school on time for the past week and a half. I think we’ve turned a corner.

My Daughter’s Consular: Don’t be shocked if she cycles, have you heard of that? They sometimes regress.

Me: No, never heard of it. As of now, she seems fine with going to school.

My Daughter’s Consular: Hopefully that continues, yet autistics do cycle, they seem fine, but then a trigger happens and they regress back. Sometimes it feels like one step forward, two steps back.

 

Wow. Was she ever right. I had never heard of “Cycles”. I wasn’t prepared for what that entailed. One reason I had never heard of cycles is that many call it by another name. Meltdown. Some autistics have bad ones, sensory overloads that tax their brains so hard that the only recourse is to ‘throw a fit’ and shut down for a ‘reboot’. It can be terrifying for all involved. The parents, friends, other family member, and especially for the autistic person themselves.

Yet, autism, being that wicked little tailor it is, never does the same thing to each person it afflicts. Some may meltdown, others may shutdown. Still others, like Alexis, require a restart. She has to go to a start point, then work her way out of it. She rarely cries, or screams, never have I seen her throw herself on the floor or hurt herself. We’re lucky in that respect. Yet when she restarts, we are usually confused. What caused this behavior? She was doing just fine, but why now?

Give me a moment to talk about myself.

I got a new phone. A Samsung Galaxy Note8. Pretty sweet huh? Yeah, it’s not an S9, but hey, new phone.

It sucks. Damn thing has been nothing but problems since I got it 12 days ago. Tried to take it back today to be told it was just me. It’s not me. I may not be the most savvy person when it comes to ‘Smart Phones’ but still. The thing is annoying as hell. Totally froze on me today. So I went back to the store to trade it.

But…

I waited a bit. I was pissed, angry, using words that with ‘uck’ a lot. So angry I entertained the thought of using my 3 lbs sledge to solve the problem. However, that wouldn’t solve the problem. I went outside, smoked a cigarette (yes I know) and did my best to calm down. Worked the problem out in my head. Knew what I was going to say, and then, once composed, I went to the phone store.

Came back with my phone. Told politely it was me, not the phone. It’s the phone, but hey, I can calmly work it out. I have been considering the beer in the fridge. But instead, have a diet soda, and my laptop to ‘ignore’ the problem. Because if I do ignore it? A solution will come. Usually does. It’s how I restart.

Back to the kid.

So okay, stressful day. I got upset, very upset, but I resolved the problem. Took me a good hour. The darn phone has been bugging me for a week and a half. Yet it took today to get my goat. And that lasted about an hour. Phone is still in one piece. Alexis, however, has taken all day to get over yesterday.

She had a school conference.

Now, in modern American Schools, they have come up with this fantastic idea called “Student Lead Conferences”. Which means, you can do four conferences at once. Which means, Alexis had to speak to her parents about her school work…which she is struggling with… as three other kids talked to their parents. A noisy, distracting, environment.

The conference went okay, she mimed what she did. Didn’t speak to us. Her very sweet and helpful teacher was shocked by all this. In class, Alexis’ practiced this, she did well. But now? Nope, silence, the Cycle had geared up.

Now by geared up, I mean geared up. Not begun, because the cycle had started before this. A good five days before when the reality of the conference was looming in the future. I should have caught on, but I didn’t. Hindsight of course, helps. It was that flipping idiom that should have been the key.

Idioms! Ahhhh!

Idioms can be tricky with many autistics. So can sarcasm. I use both constantly, which is hit and miss with Alexis. She actually likes idioms. Yet the other day, when she wanted to change clothes to eat breakfast, then change again for school. I suggested she change into her school clothes and eat. That way she’ll be ready, and just be careful eating. I put it like this. “That way, you can kill two birds with one stone”.

Why? For heaven’s sake, would she want to kill a bird? Birds are nice.

She was serious. She couldn’t understand why I wanted her to go pick up a rock and throw it at the birds outside our house. I was puzzled, because I had used other idioms, similar to this one, that she had no problem with, yet that day? Well it was taken literally.

It was the beginning of the cycle. She was nervous about the conference and the idiom was lost to her. She can get idioms, metaphors, jocular tales and most jokes. Yet when she starts to cycle up, things get fuzzy quick. Taking things literally is her fall back, her safe mode.

It was today, the day after the conference, that Alexis didn’t go to school. It was just too much for her to process. We tried to work on Math, a subject she has a bizarre relationship with. She is either very good at it, or very bad. I can’t tell, neither can anyone else. Math has become part of her ‘Fuse Box’. Or maybe it’s better to call it her ‘Tool Kit’. She will purposely get answers wrong, will whine about doing problems as we sit and do homework. Yet in play, she will answer questions without hesitation. Solve problems like they are a hot knife through butter.

Today? Adding 6+6 was too difficult. She couldn’t do it. Let alone multiply two digit numbers by another set of two digit numbers. Even with the aid of a calculator, she couldn’t do it.

This is the damnation of an Autistic Cycle. Things you know become lost to you. Simple task become beyond complex. The world comes crashing down and even 1+3 is impossible to answer. It’s not a game, not a joke, it’s real. Then her brain just shut down today. Trying its best to do a restart, after a day of high anxiety, and make sense of it all.

While my emotions ran high over my phone problems, I was able to find a way to calm down. To solve the problem in my mind and move forward. What an utter hell it would have been if I had been unable to do so. I can’t even fathom how that would be.

Try being a prisoner to your emotions, locked inside you, all there, all working but unable to translate them. It would be like waking up tomorrow and suddenly speaking a foreign tongue, without knowing it. How would you tell anyone the simplest of things? How would you even begin to ask for help?

The autistic cycles are a living hell for the sufferers, and just as frustrating to those who are around them. Peace and quiet, a relaxing hobby, no pressure and the cycle completes itself. Yet honestly? I’m not sure it is over. I have no idea if I will be able to get her off to school tomorrow. If she will go, or if she will refuse.

I have come to the point where I don’t take it personally, that I am not a bad parent, that I  don’t just let her ‘get away with it’ As some seem to think. Yet I have to be careful she doesn’t use this as a manipulate tool to skip out on her education. Deciphering the difference isn’t easy. Her need to avoid over stimulation does sometimes manifest itself in manipulative behavior. But, can you blame her? I don’t. I wouldn’t want to do something that would cause me anxiety at the level she feels.

So I ride a fine line, every in search of the Rabbit Hole she is hiding in. Doing my best to be on guard for the next cycle, the next trigger, and react properly so I can lessen the impact. It’s not easy, and I am not alone in this. And I am certain no expert. I hadn’t even heard of cycles till last week.

My hope is one day she will realize the trigger, learn to minimize them, control them instead of having them control her. Find solutions, a bag of tricks, to make her life easier. One day, I hope she can deal with a stressful situation that won’t push her into a cycle. That she find an out. Till then, I have a lot to learn, and teach to her, when she is ready.

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The future for Authors…

…or where my first book is destined to end up.

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Books for Sale at the local Goodwill Store. / Photo by KidZond.

If you haven’t noticed, I like to write. Not just blogs about my family, but fiction. I tend to stick with the whole Fantasy / Science Fiction genre. I just find this realm my cup of tea. Sort of suits my creative personality.

Now even though I write, I rarely submit my writings. Because, well, it sucks. Maybe…not sure…but I am pretty sure it does.

But I want to write. It makes me happy and I have a passion for it. Writing for me is fun, entertainment, and well maybe, just maybe, I can make a few bucks off it all.

Maybe.

Then on a shopping expedition to Goodwill I found the used book section, and was humbled a bit. For several reason, let me explain.

There were a fair number of books on the shelves. Some of the books made sense that they found their way to the resale shelves. Children’s books, kids grow up, other Parents may want them. Cook books, because cooking is always a fad. Cajun cook books may have been all the rage 5 years ago, but now? Not so much.

Romance novels, well come on. Even their authors expect them to hit the resale shelves. Hope so I would think. People buy one for a buck, then buy their latest novel for $14.95. Great for marketing.

Other authors, many who have passed on to that great typewriter in the sky, well their books find their way to the resale shelf.

Others? They make you think. A story may be behind it. Books about becoming a new parent, what to expect when you are pregnant….

…Breast Cancer for Dummies.

I looked long and hard at that book. Did they survive? or did some love one sadly pack the book with other belongs to give to Goodwill? I wonder.

Books can tell a story about a person.

Unlike others who have that nosey habit of looking into your medicine cabinet, I will look at your bookshelf. What you read tells me a lot about you.

Romance lover? Then you probably are a hopeless romantic. Horror lover? Well, you like to be surprised and scared. You probably love rollercoasters and haunted houses. Science Fiction lover? Then you like to think of What If? and love NASA with a passion. Spy Novel lover? You always think someone is keeping secrets, you love cat and mouse games. Crime novels lover? You are always looking for the reason why behind everything, noting clues when something is amiss. Fantasy lover? You like to look at the magic in the world, see the connections that others miss.

Of course these are generalizations. You read to escape. To find a little bit of entertainment in-between the pages of that book in your hands. You want to forget about your problems and worry about the Main Characters problems.

And of course, when you are done exploring those other worlds, and those characters become fond memories just collecting dust on your bookshelf, or taking up room in a box in the basement. You end up giving up on them, shipping them out for others to find and enjoy. For a new generation of reader to find that escape you so loved.

For some, this bequeathing to new readers, may happen soon after you read the book, or years down the line. Then again, if you are like me, it will happen when you can no longer read the books, because, of course, the dead can’t read.

Yet eventually, one day, those books you read will end up on a shelf (if the book is lucky to survive that long) and will be sold for a pittance of what it original value was. Many may pass it by, others may pick it up and look to see if it peaks their interest. Some will smile at the book because they have already read it. Still, it will sit.

As a would-be author, this is my future. My books…you know, when I get around to writing them…will end up on a shelf one day.

I can take a little satisfaction that the library of congress may keep a copy. You know, if I publish.

 

Then of course, there is this…

 

Although I desire to be a writer, and have written many short stories and a few novels, they all sit in old xerox boxes and filing cabinets in my basement. Dozens upon dozens of storylines and plots waiting for me to get off my butt and get serious about it all.

Yet while I desire to be a writer, my youngest daughter will be. For in an odd twist, my autistic daughter loves to create stories. She loves the English language, and would give a ‘Grammar Nazi’ a run for their money. She has the potential to be a novelist, to do this thing that I desire, far better than I will.

And unlike me, who looked upon with a little sadness at the realization that my future books will end up on a Goodwill shelf, I think Alexis will relish the idea. Than even though her books may fall off the Best Sellers list, she will be delighted to know that they are still there, out there waiting for others to discover.

A little on the quirky side.

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Alexis behind a Unicorn Mask. / Photo by KidZond.

 

Like any parent, I have a lot of hopes for my children. You bring these little persons into the world and try to teach and guide them so they can stand on their own. You wish nothing but the best for them, and wish with all your heart, that they will succeed in their life better than you. You’re fearful of the world, and what the world may do to them, but you know if you give them the right tools, they will be just fine.

Yet when you have a child with High Functioning Autism, the fear is magnified a hundred fold. The deck is stacked against her from the start.

We’ve only been on this rollercoaster of learning about our Autistic daughter for a little less than a year now. Dozens of meetings with doctors, counselors, school staff and reading. A lot of reading and research. At times for me, the challenges of giving my daughter the tools to have a happy healthy life are daunting. It can make you feel very small, very ignorant, and very angry.

Anger is my biggest problem. Most people don’t see my anger. I’m usually considered a jovial guy, even when subjects come up in the course of conversations that normally piss everyone off, I’m the guy who takes it all in stride.

Except when it comes to my kids. I’m very defensive.

Yes of course you should be defensive of your children. I’m not a helicopter parent, more of a military drone style. I’ll let it go on for a bit, then come in low with missiles ready to fire and blow you up verbally. It’s not a good trait, I don’t like being like this. But, it’s my kids. Still, until my wife pointed out that this drone style of attack wasn’t helping the situation, I had been lashing out.

She was right of course, I was wrong. I ran afoul of my own passion to defend my daughter, just to exacerbate the situation. I need to find a way to redirect, to work on getting those who can understand Alexis, to understand. Those who are incapable…well to just let it go.

Fairy Brides are Quirky.

For years I have been an avid Folklore buff. Mostly British folklore. In those stories that I have read and re-read, I have run across the Fairy Bride. A quirky set of tales that have not made it to Disney yet. Yet these tales help put things in perspective, and makes me wonder if Autism was a foundation for the tale.

Fairy Brides are a big part of British Folklore. A man meets a beautiful woman and marries her on the spot, so to speak. Yet his bride is quirky, she has trouble adjusting to the mortal worlds social norms. Fairy Brides tend to cry at Weddings, and laugh at Funerals. Much to the consternation of the mortal husband. They do socially inept things that often cause the husband to have to admonish his wife, to try to change her, mold her into being a ‘Good Wife’. Often the story ends with the Fairy Bride leaving the husband, his life now in ruins.

While the moral of the story is one about the fallacy of Love of Beauty alone, (for Fairy Brides are the loveliest of creatures) it also makes me think of Autism. A woman, from another plane of existence, has to adjust to a world that just doesn’t make sense to her. A world that demands she conform, behave as they expect her to, not as she is. Yet she never does, and in the end, goes back to a world that makes sense to her.

This is a problem I face with Alexis. Not so much her, and her autism, but to how others react to it.

Some people just believe that we are bad parents. That we need to correct her more. Others feel she is conning us, twisting things around so she can get her way. They get confused by her actions and react badly because they just don’t understand that she does not think like they do. That social norms they take for granted, are not to be found with her.

Now while some will learn, other will refuse to. No matter how I explain it. Even if I say those infamous words “Don’t take my word for it, read this…” , they still are locked into their opinion that this is some sort of great game to Alexis. That she is a puppet master and we are merely puppets.

Of course the part that really gets my proverbial goat is the “Fix it” or “Grow out of it” mentality I run across. Those who believe they can fix Alexis’ autism by doing this or that. Or that she’ll one day just grow out of it. She won’t. This is her, it is how she will be for the rest of her life.

And that is when I call for a drone strike, lashing out verbally against those who think this is all some sort of game.

And, I have to stop that.

Because my wife was right, lashing out isn’t helping me, her, or our daughter. You can educate people, help them understand that Alexis isn’t being a brat, it’s just that she thinks in a way that you can not fathom. I need to just learn that not everyone will get it, not everyone will accept her, and that my job as a father, and our job as parents, are to work with her to help her understand that not everyone will understand.

Our hopes are to give our HFA daughter the tools she needs to lead a good life. To enjoy family and friends. To have the career she wants. To teach her that although like a Fairy Bride in the mortal world, she can learn to adjust to our theoretical “Neural Typical” world, and still be herself.

Because like a Fairy Bride, with all her quirkiness, she is the Most Beautiful of Creatures to us.

Putting on the Mad Hatter’s Hat.

And helping others get their Alice on.

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Alexis. Self Portrait.

 

 

A little fact about myself. I only have 9 toenails. I lost one due to a childhood accident. Now when I tell the story of how I lost it, I’ve never been asked the question will it grow back. Little children do sometimes, but never from adults.

This is typical. Most adults don’t go around saying to a one-legged person, “So when do you expect your leg to grow back?” or “It will get better, just keep working harder, relying on that prosthetic leg is not helping you”. I could never imagine saying that to someone, could you? No, you wouldn’t.

Yet I get this a lot with my daughter who is a HFA, High Functioning Autistic. There seems to be this perception that if we just teach her this, or that, her autism will go away. As if it is just a cold, and given time, it will go away.

It won’t.

People seem to get lost that because she looks like a typical 10-year-old girl, which she is…just one with HFA…they expect her to interact and behave like any ‘A neurotypical’ 10-year-old girl. Which she doesn’t.

Alexis has quirks. Little things that people don’t notice at first, and when they do? Well they become Alice in Alexis’ Wonderland. Just like the story Alice in Wonderland, where a little girl goes into a world, that doesn’t make a bit of sense to her, most people try to correct Alexis, believing it is all just bad behaviour. Not understanding that the behaviour they expect? Is just as alien to Alexis as Alice was to the Mad Hatter. Remember, the Hatter thought Alice was Mad.

I find people perplex by her quirks. Even after I explain her quirks to them, explain that she is HFA, they still just don’t accept it, and suggest she ‘grow her leg back’ so to speak. I am given parenting advice, tips, links to articles. All sorts of stories of how they were raised, and what their parents did to correct their bad behaviour. Because that is how they see her, behaving badly. A product of bad parenting. An extremely ironic stance if you know the history of autism.

Alexis doesn’t say ‘Please’ and ‘Thank You’. She finds those social niceties absurd. Often I run across the Adult who withholds giving her a toy, piece of candy, or some other object till she says ‘Please’. Which to her is traumatic, and frustrating beyond the comprehension of the adult, who is perplexed by her reaction. See, Alexis isn’t a child who needs to ‘learn their manners’, this is akin to me giving you a $1,000,000 check after I won the lottery and telling you I wrote Void on it. Your first response would be “Why would you do that?” and all I can say is Exactly! Welcome to Wonderland Alice, you have just stepped inside my daughters world.

This is the Mad Hatter’s Hat I have to wear sometimes. Stepping into Alexis’ world so I can tell all the Alice’s  of the world, why she acts the way she does. I have to play interventionist just so people can understand her, and not get frustrated by her reactions. Which they do often, but mostly, I have to intervene so she doesn’t get frustrated and slip into a traumatic state that will take hours, if not a whole day, for her to calm down.

Alexis does has quirks. She likes wearing certain clothing, namely, pajamas. She even wears them to school. Now you may find this cute, or inappropriate, or weird. Yet trying telling your daughter who is standing in her bedroom, wearing only her underwear, refusing to dress, because you forgot to put her jammies in the dryer last night. And do your best to keep calm as she melts down, crying, with only 10 minutes to get to school before the first bell rings. You see, it’s a tactile thing for her, certain fabrics bother her as fingernails on a chalkboard bother most of us.

Alexis isn’t a picky eater. Provided that the food she eats, say pork chops, tastes the same each time she has it. If I get a different cut, or use a different spice, she notices, and will refuse to eat it.

Then there are the constant routines, things that have to be a specific way or else it sets her off. Her pillow has to be just so, her blanket too. Stuffed animals arranged in a specific order. People coming over unexpectedly, or not coming over. Us staying a friends longer than what we told her originally, or someone staying at our place longer than she expected. Or say a substitute teacher at school, even simpler things like not having the cup for her drink. Those disruptions which seem so mundane to us, that I can say to my 7-year-old son, “It’s fine, Nick”, and it is fine for him, become an obstacle for Alexis, that she struggles to overcome.

To the Alice’s of the world, she seems nothing more than a spoiled brat who isn’t getting her way. Because they only pop into our Wonderland for a short time, they don’t live there like we do. Many want to correct her, or berate her. And by doing so, upset her. They don’t know she doesn’t understand why they are ‘mad’ at her. Nor why doing something their way is ‘proper’ and her way is ‘rude’.

There is more of course, the personal hygiene, physiological issues that come along with autism. Well, at least my daughter. Even being HFA, there are issues. Because Autism is truly a Wicked Little Tailor that makes a suit for each person it affects. You learn to deal with those issues, while working hard to avoid public embarrassment for your child.

Alexis is very high functioning on the Autistic spectrum. By guiding her, help her deal with all the Alice’s of the world, she can find an inner translator for her Wonderland. A Hatter’s Hat, so to speak, that she can give out, to all those who just don’t quite get her quirks. Till that day comes, I don the Hatter’s Hat, get out my translation book, and tell the Alice’s of the world that No, she will not act the way you think she will. And No, this is not bad behavior, or being a brat. And NO, this will not ‘go away’.

 

 

 

 

 

Remember the Magic words, Please and Thank You…unless you’re Autistic.

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Alexis and BenBen / Photo by KidZond.

By Js Kendrick

 

I had a little eye opener yesterday at my daughter’s therapy session. We were discussing her habit of not saying ‘Please’ or ‘Thank You’. I found it rather odd that she seems to refuse to say these common niceties. The reason behind her refusal has always eluded me.

I was raised saying Please and Thank You, my Mother had always demanded courtesy from us, and it would even go so far as to not pass a dish at the dinner table because I didn’t say ‘please’. This was how I was raised, and of course, this is how I raise my children. Even my eldest daughter has carried on this courtesy with her children. I wouldn’t say our family is obsessive about it, but good manners usually opens doors in life. People appreciate being treated politely.

So it shouldn’t be a surprise at my consternation when my youngest daughter would refuse to say those words. She has had this habit for as long as I can remember. When she was younger, I didn’t put much thought into it. Four year olds tend to forget, so you remind them. However it was around seven that I noticed she refused to say Thank You. Please would only come out on rare occasions. I worked with her, withholding items till she said the magic words, but she only did it begrudgingly.

It was last year, when she was eight, that the problem became more than learning, more than some sort of joke to her. She wouldn’t say it for the life of her. Alexis seemed more upset that I wanted her to say Please and Thank You, than I was she didn’t.

“Alexis, if you want me to get you a glass of milk, say the magic word.” I would say. Then one day she looked at me and said the magic word.

“Abracadabra.” She said. I laughed, probably shouldn’t have, but it was funny. That became her ‘Please’. She started to use the magic word every time.

I still worked on Please, even discussed with her that while Abracadabra is the ‘magic’ word it wasn’t what I meant by magic word. But to Alexis, Abracadabra is the factual magic word. 

The term “Magic Words” came from my mother. When my sister Karen was going to Kindergarten there was a sign above the classroom door.

“Remember the Magic Words: Please and Thank You!” 

My mother, always into manners, remembered that phrase and quoted it often. My mother was no Miss Manners, but she did believe in being polite. Until she was mad, then it was best to run. politeness took a backseat for a bit.

I’m not sure how my mother would have handled Alexis’ refusal to say Please and Thank You. Probably would have driven my mother mad I’m sure. I know Alexis drives her sister Jenelle mad by refusing to say those magic words. My grandson BenBen says Please and Thank You, as with other niceties, even as he is being a holy terror. Yet as he holds a bag of potato chips, that he had just dumped on her floor, he will say “I’m sorry”. Jenelle and BenBen are still working on those connections with being polite and acting polite.

Yet while in therapy, when Alexis refused to say Thank You when offered a page from a coloring book, I mentioned this peculiar habit to the therapist.

“Well it’s not literal. If you stop and think about it, why do we say Please and Thank You? It’s an emotional response, a social niceties, but it has no practical value.”

The therapist then went on to ask me if she says Please for specific items. Alexis will say Please for wanting specific things. Yet those are more built into our language. She knows to say Please if she wants us to buy her a toy, or to go to restaurant. However Thank You is harder. Because why do we have to say “Thank You”? What value is that phrase?

In reality, Please and Thank You have little value. Unless you look at it in the terms of socialization. We say these phrases, along with a host of others, to be nice to each other. Many of those phrases aren’t even practical. When you ask someone ‘How’s your day going?’ Rarely do you wish to know how their actual day is going. It’s just a common phrase we use as a greeting. You may exchange a few words, but a detail accounting of their day’s events isn’t expected as an answer.

If you have ever dealt with persons to whom English is a second language, even worse, American Slang as second (practically third) language. You have just had a taste of what it is like to talk to someone with autism.

Alexis isn’t being rude, it’s not like she doesn’t “Know Any Better”, it is simply that she finds such phrases and niceties absurd. Why? Why do we say Please? What is the value of Thank You?

For me, it may be a consternation. Raised with a mother who valued manners, who valued the Magic Words, and now with a daughter that finds such words absurd.

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Apples from a friend.

 

Take these apples in the picture above. As I was writing this blog, Alexis came in to show me them. The young neighbor girl brought over apples from their backyard tree. These two are for my son and grandson. As Alexis handed them to me, being very specific as to tell me which apple was for whom, I said…

“Did you tell her Thank You? Because that would be nice.” Alexis smiled at me like I was a half-wit. I could see her thinking ‘Why should I say Thank You? She gave them to me, I give her things too, we’re friends, that’s what we do.’ She just looked at me and walked off. I went outside to tell her friend ‘Thank You’ to which she replied ‘You’re Welcome’. Alexis looked on disinterested in this little exchange.

The Magic Words, as with many of our social niceties, open doors in life. They let people know you care, that you have empathy for them. From, “I’m sorry for your loss” to “Congratulations!” we use these phrases to let other know we care. Alexis cares, but finds our language to be a ‘bit much’.

So, I continue to look for the Rabbit Hole, hoping to find it. If for nothing more than to have her say those Magic Words.

How to lose sarcasm in 7 days or less.

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The sarcastic Cheshire Cat. Illustration by John Tenniel / Illustration from Wikipedia Commons.

 

By Js Kendrick.

 

A week ago today I was asked to do something I thought was impossible. Stop being sarcastic. Now, very few people can ask this of me and actually get me to even think of doing that. My daughter Alexis’ therapist is one of those people.

Alexis, my 9-year-old daughter, is a high functioning Autistic. Most people wouldn’t even notice what I have been learning to notice. They would pass it off as bad behavior or that maybe she was tired, hungry or just having a bad day. Yet people do catch that Alexis is sarcastic.

Yeah, that ones on me.

To say I speak to others sarcastically is putting it mildly. Usually it is in good fun, to keep thing from getting tense, or just because that is my nature. My conversations drip with sarcasm. If you call me a ‘Sarcastic Bastard’ I will just profusely thank you for the compliment. Sometimes I get so bad I have to say, “No, actually I’m being serious”. Just so people know I am. Even then I might have to convince them.

Yet Alexis, who has a father who jokes, says the wildest things, and teases (nicely) all the time, well, she doesn’t see the difference. She thinks speaking sarcastically is normal. You know? because that’s how daddy talks.

 

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Alexis and I ‘smiling’. She started to ‘look mad’ for smiling about a month ago. 

 

So, I’ve had to stop being sarcastic. Okay, around her. Let’s be real, if you are a sarcastic person, stopping is nearly impossible.

However I know when to stop. I don’t tell a Police Officers who pull me over for a broken tail light that,  “I am surprised you guys finally found me”. Or tell my boss when he asks me to come in early that “Sorry, I’m still on the North side of Mt. Everest, can I come in at my normal time?”. I do know when and where sarcasm is acceptable. Alexis can’t filter that.

Here is an example of how her mind works. The other day we watched ‘Fantastic Beasts and Where to Find Them’. It’s a good little movie set in the Harry Potter Universe, by author J.K. Rowling. If you know anything of the Harry Potter Universe you know they have all sorts of creatures. Which of course is part of the movie’s plot line. When I asked my kids if they wanted to watch it again, having to call it the “movie with all the magical creatures in it”, she said to me:

“Yeah! But they’re not real creatures are they? Because they don’t exist. It’s just made up right?” She asked. Her brother Nick, who is 6, said to her they were just ‘made on a computer’.

Now you might think, as I had in the past, she was just confirming that there are no such monsters like that in the Real World. But that isn’t what she was doing. It wasn’t out of fear, but out of the need to reaffirm that there is a difference. Differences trouble Alexis. It’s the simply social cues that we take for grant that she struggles with.

As her brother Nick knew right off the bat, those creatures do not exist. Alexis knew, but wanted a confirmation that they were fake. She does this often. Confirming if something is funny, or scary, or dangerous, or true. Truth is important to her, along with facts. She often tells me why I am incorrect, because the facts don’t support my statement.

Thus the problem with sarcasm. Sarcasm is literally speaking the opposite of what is the truth.

“Wow, you just hit your thumb with a hammer, did that hurt?” I may be asked. To which I would respond sarcastically. “Oh no, I do this once a week just for fun”. Obviously a contradictory statement to the facts.

Usually when I hit my thumb with a hammer it involves very Bad Words and sarcasm. As in “Well that blanking felt lovely”.

So discerning the difference is hard on Alexis. So she has learned to be sarcastic. As you might have guessed, this isn’t a quality you want in your 9-year-old. Especially with school right around the corner.

My project for myself this past week has been dropping my sarcasm as much as possible around her. Try to be more Black and White in my speech so she picks up that and not the reverse snarky speech of sarcasm.

It has been a helluva a week for me.

No, serious.

Some Assembly Required…

Alice and cards
[Illustration by Sir John Tenniel / Wikipedia Commons]
By Js Kendrick

 

We went to a wedding this past weekend. It was a lovely event, watching two young people start their lives together. I, my son Nick and my daughter Alexis were part of the wedding party and…

 

We went to a wedding this weekend.

 

That whole week before I fretted. Who was going to show up at the wedding? Alexis or Autistic Alexis? Yes of course they are one and the same. Yet one is a playful child that laughs and jokes with her cousin and brother at family events. Who is silly and willing to do all sorts of tasks asked of her. The other lives in a world of fear, one where emotions and tasks become crippling and she retreats into herself as a defense mechanism. I was unsure, I was worried.

I had been warned by her therapist. “You know, you will need to leave when she is done with the wedding.”

Meaning that when it becomes too much for her to handle. When the emotions become too hard to process, we would have to leave the hustle and bustle of the wedding. I planned to do as much, I had made a contingency plan. Take our car to the wedding and from there, the reception, leave when we needed to. What’s that saying? ‘The best laid plans of mice and men often go awry’? Of course nothing ever goes the way one plans. I had a learning curve lurking around the corner.

That Friday night we had rehearsal, then a dinner afterwards. Rehearsal went fine, silliness and solemness abound as we practiced for the ceremony. The Reverend fielding questions from the adults, the children just nodded as they listen to instructions. Everything seemed fine. I felt a bit of relief.

Then at 2:30 a.m. I was awakened by Alexis.

“My tummy hurts, can we go home?” We were in a hotel room, a town some 40 miles from home. We had, like most of the wedding party, booked a hotel room for expedience. Easier to be there in the morning than to drive the distance to the Church. I looked at her and calmed her down. Asking her to lie down and not to worry, we could talk in the morning. She needed an ear to calm her fears, I hoped mine was good enough.

In the morning it was trying to keep a semblance of routine. Routines are good, you know what to expect. Weddings, for all their joy and zaniness are anything but routine.

There was the bath, the hair, the dress. The dress! The one she refused to try on for weeks on end. The one that I finally got her to try on only a week before the wedding. The one she told me she hated and didn’t want to wear. The one she now, on the wedding day, loved.

Yet she was dressed, she was pretty, she was in a good mood. I relaxed a bit, having more struggles getting a 6-year-old into a tuxedo.

So we rode to the wedding in a limo / bus. The bridal party going before the grooms party. Yet she loved the bus ride. She was enjoying herself with mom and her soon-to-be aunt. It was, as Alexis told me later, “girl time”.

At the wedding all my fears were washed away. Alexis, as an accompanying flower girl, walking down the aisle with her 4-year-old cousin, very carefully dropping color coordinated petals. For they were yellow and blue, can’t mix them up you know. Order is very important. And she stood next to her soon to be aunt and was happy.

During the lovely ceremony, the groom and bride assembled a unity cross. Two pieces of a cross held together by three pins that represented the trinity. Although the meaning behind this was two becoming one with God, I had a different take.

Some assemble required.

Because in life, some assemble is required. All marriages are work, a lot of work. If you assemble your life correctly, not to fret over the little hiccups, and stick together when the storms hit. You will assemble your life and enjoy the blessings of marriage.

Yet it is also a mirror of autism. As a parent I work at assembling the life of my daughter, so she can enjoy the most out of life. Alexis is high functioning, so it may seem a little self-serving for me to worry about her, when so many others struggle with more profound issues. But I do, of course I do. I’m her father, I worry about her as I do my other three children. I’m also new at this autism, so I feel inadequate when problems arise.

The wedding went off without a hitch, everyone preformed their job perfectly. Even the Bride and Groom said the right words…you know, the I Do part.

It was the reception, the one I had planned to make my escape from that became the issue. Both my wife and I had taken the bus. We didn’t have our car. We were ‘stuck’ at the reception from 5 p.m. till 10 p.m. when the shuttle bus would arrive to take us back to our hotel.

Yeah, that plan of mine went south quick. Oops!

Loud music, people laughing and talking, crowds of ‘strangers’ walking around you and a place you had never been to before. Alexis left, someone else took her place at the reception. Someone that couldn’t process all the commotion, who felt overwhelmed.

“Daddy I want to go home.” I was told in a terse whisper. On the verge of tears, she put her fingers in her ears as the music played.

Now what?

“Hey let’s go outside okay?” I asked her, she nodded and we went outside to the quiet. The reception was held at a golf course’s club house. A nice place, a quiet place.

Outside Alexis wanted to know when we were leaving. I silently cursed myself knowing that, short of a taxi, we weren’t leaving anytime soon.

Then she found the rocks. Large boulders of different shape and sizes that circled a large tree. She got up on one rock and as she asked about leaving, started to go around the tree.

“Daddy help me?” She pointed to a gap between the rocks. I took her hand, pointed and told her where to put her foot so she could make the gap and we went around the tree. She smiled, giggled, we did it again. Then she did it by herself.

“If you feel you need to come outside again, let me know okay Alexis?” I said to her as we walked hand in hand back in. She looked up at me, a question of the greatest importance was forming.

“When are we having cake?” Alexis asked me.

 

We went to a wedding this weekend.

 

We went back out twice more. Then she played on the putting green with her brother, cousin and friends, we danced, we laughed, we had seconds on the cake.

I had learned to redirect my daughters breaking point. I had beat the learning curve…this time.

In life, some assembly is required, sometimes that assembly is oneself. Learning new ways to handle new problems, new situations and hurdles.

We went to a wedding this weekend, and we had a blast.