Life without Glasses.

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Photo by KidZond.

 

If you wear glasses, like myself, you have to be a little happy about living in the 21st century. For one, there are so many styles to choose from. You don’t have to have glass lenses either, you can opt for lighter plastic lenses. Heck, you don’t even need to wear glasses, just use contact lenses. Or better yet, surgery to correct your vision. It’s rather nice actually living in these times.

If you have never worn glasses, never had need of them, well…you don’t know do you? Okay so you have tried them on, a friend or relatives pair. Looked around and wondered how in the blue blazes do people see out of them? Wear them long enough, you’ll get a headache. Then, you’ll probably laugh, hand them back, and think to yourself,  “Boy, glad I don’t need glasses!”

You are lucky if you don’t have to wear glasses. I am lucky because I can easily correct my flawed vision by putting my glasses on. When I don’t put them on, the world is weird to me. Blurry, distances are a little skewed. I have to hold things up close to read since I also wear bifocals. Very frustrating when I misplace my glasses.

If, for some odd reason, I lost my glasses and the ability to replace them, I would be in a pickle. I would have to go through the rest of my life struggling to adapt to my world. Having to make judgements about distances, objects, all sorts of things. I would do my best to find a substitute for my glasses, have to learn tricks to help me with my predicament. It would be frustrating, annoying beyond belief, my own personal hell.

Of course people would understand. They would know that I had lost my glasses, and that I could never attain another pair. They would have compassion and empathy to my plight.

What if they didn’t? What if they thought that glasses were a myth? Something some egghead doctor had made up? What if they had never seen or heard of glasses before? That when I explain I can’t see as far as they can, they laugh it off, or call me silly? Tell me I will grow out of it, or just to knock off being silly.

What if they don’t know, or understand, that I fear objects coming toward me because I can’t tell what exactly is approaching me. Is it a dog? or a wolf? maybe it is a bear.

People with chronic conditions know this feeling of disbelief all too well. They know people who are dismissive of conditions that are not physically apparent. As a parent of a High Functioning Autistic child, I know this feeling too.

People believe I baby my daughter too much, or make excuses for her eccentric behavior. They think it is bad parenting, or lack of discipline. They make comments that I coddle my daughter too much, or let her get away with her antics.

As always, I have a flash of anger that I struggle to control. My parental defenses fire up, and I have to watch my tongue, or else I will make the problem worse. All this, while not backing down and accepting their beratement, and doing my best to educate.

Yet, some still believe that glasses are a myth, they always will. For they are lucky, and will never have to deal with a life without glasses.

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The Knot.

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Bag of hair supplies that has been my friend for the last week. / Photo by KidZond.

 

Honestly? I have not had a good summer. A perfect storm of events derailed all of my plans. It hasn’t been the end of the world. Just minor incidents that alone, mean nothing, but together added up to a summer of stagnation.

This was going to be the summer of getting things done. I was going to write and edit a book I had been working on for four years, get some needed repairs in the house, spend the summer doing things with the kids and just, well, just enjoying the summer.

I had started a new job in February that gave me four days off a week. Just so you know, I pay for it on those three days I do work. So much so, that my first day off my shift, I am basically useless. I should also stay off Facebook after my work cycle, but that is another story.

Nothing I had planned happened this summer. I wrote my book, only to find out because of the subject matter, it might not be well received. So, I shelved it and wrote another. Editing was definitely out. To edit a book, you need time, space, and above all…peace and quiet. I didn’t have peace and quiet this summer.

Instead, I had children. Ah! Wait for it! 

I have two children at home, and we watch our 5-year-old niece. This is all well and good. No real issues there. But, we have a really cool playhouse in our back yard. A beacon for all of the neighborhood kids. I would spend many days this summer watching out back as groups of kids played in my backyard. It was fun, entertaining, and gave my two, and my niece, friends to play with. So, while not a bad thing in itself, you really can’t do much when you have a backyard full of kids. Usually around 7 kids in total. All little psycho’s.

But, it killed projects. Hard to redo things in the house that requires my undivided attention and just let monsters roam your backyard. Plus, I was on band-aid duty all summer.

Books, work, and depression.

Writing is very cathartic for me. I love to write, and will get lost in it. The entertainment for me is the creative part. I wrote one book, some 120K words, only to find out that the subject matter may run afoul of the MeToo movement. It shouldn’t, but it could. Not something you want to put out for the world to take wrong. So, I shelved it and wrote another story I had floating around. But, I can’t edit right now, so both books sit collecting dust waiting for me to edit them.

Work has been a paradigm shift for me. For the last 11 years I had worked with only one partner. Now, I work with a group. The dynamics are different, and so are the multiply personalities. I am not exactly fitting in, and have questioned if this job is worth it.

Which unfortunately, has led to feeling depressed. Now luckily? I have dealt with depression before. Years ago when I was going through a horrible divorce. So, I know the signs, they symptoms, and when to seek help. Not there yet. How do I know this? Because of a knot.

The Knot.

The knot first appeared shortly after school got out. It was an annoyance that turned into a festering little animal that would not come out.

My daughter Alexis, who is 10 years old, is a High Functioning Autistic. With autism comes little complications. One of them is tactic issues. Essentially, Alexis doesn’t like her hair brushed, nor brushing it herself. It hurts. Not like it would hurt you or me (you know, if I still had my hair). But it hurts in a dramatic fashion. True physical pain.

For the knot, we sought out professional help, and the knot was gone. Only to come back with a vengeance. What was a little knot, now was a big as my fist. It was a snarled mess of tangled hair that had a life of its own. Attempts to remove it were disastrous. Seeking professional help was out, since although the hairstylist who help us before was wonderful, the pain and trauma meant utter refusal. So, we tried at various times to remove the knot, to no avail.

Unfortunately, we had to wait the knot out. Even though I came to the unfortunate conclusion, we would have to treat it like the famed Gordian Knot, and just have it cut out. Needless to say, that option was a nuclear option. Not well received at all.

Then, everything changed in the last three weeks. The knot, which Alexis had ignored, did not want touched, was suddenly asked to vacate its home. She wanted it out. We began the task of removing the knot.

With help from a good friend, and oils from a good hairstylist, we begun the task. Using a hair pick, patience, and oil. The knot that was the size of my fist is now down to about three fingers. It’s coming out, slowly, but it will be gone before school starts this Monday.

And you know what? The knot has taught me a great deal about this summer. I work on the knot for a good hour at a time, days in a row. Trust me, getting a 10-year-old to sit still for an hour is a task in its own right. The knot is not coming out in one felled swoop, but little picks, little pulls that unravel the complicated entanglement of hair. It requires breaks, different approaches, and above all, the knot requires determination.

I realized I have a tendency to micromanage my life. I like order, I want things to go my way. Most of us do, but I know I tend to go overboard. This was not this summer. Nothing went my way.

Yet, if I work at it, pick at it slowly to untangle the issues that are stymie my current situation in life, then much like the knot, it will slowly become manageable. The problems may even go away. As long as I keep picking away at them.

 

 

Take this stick and swallow your feelings.

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A diagram showing the difference in Male/Female arguments. / Illustration by KidZond – don’t laugh.

 

It was one of those conversations that stick with you. I was in my late twenties, over at a friends, who was in a rocky relationship with his spouse. We were discussing relationships and he drew a diagram like the one above. A very simply diagram.

The purpose of the diagram was to explain how men and women argue, or discuss issues that affect their relationship. Men tend to argue linear. They build on point A to point B, to point C and so on. Women do the same, yet point E may be vitally related to point B, and even point B may involve point Q. Women’s arguments tend to be interconnected.

I was amazed by this revelation, it made so much sense to me at the time. Of course, this diagram is a very broad generalization. Not all men argue in a linear fashion, nor do all women build their arguments like a spiderweb. I’ve often wondered what the marriage therapist was trying to tell my friend and his spouse.

I will say, that over the years, the idea that men and woman look at things differently has stuck with me. I have had discussions with women in my life that I saw the spiderweb, knew I was going to lose the argument and eventually be rolled up in a silken web only to be devoured later. I have also had these conversations with men, usually managers, who find ways to make sure it is your fault.

For the most part, I don’t take credence in the diagram anymore, it’s cute, a generalization, but not accurate.

 

Inside Out

 

Yet the other day the diagram popped back into my head. I had a different perspective on it. One I am still pondering about.

We were at home watching the movie Inside Out again. If you never have seen this 2015 Disney/Pixar movie it is a much watch film. The story revolves around a tween girl named Riley that is uprooted by her fathers new job. They move from Minnesota to San Francisco California. What makes this simple premise work is the little people inside Riley’s head. Her emotions that live inside her head and operate the control room.  For adults, there are a myriad of little gems in the story that will elicit guffaws. From the Train of Thought, to memory of a jingle that just won’t go away. An earworm from Hades.

But what really caught my eye were the Islands. Called the Islands of Personality in the film, these little places were meaningful things in Riley’s life that became so special they have their own place (island) in Riley’s mind. Each island is connected to Headquarters (control room) and the ‘little voices’ inside Riley’s head can look out on the Islands of Personalities. I noticed that the islands were connected by a straight line, like a conduit or synapse to headquarters.

Looking at those connections, and watching my autistic daughter giggle at the movie, made me think about something she has recently started to say. And I wondered, are those connections really a straight line of thought with her?

 

Swallow your feelings

 

About a week ago, my daughter handed me a small stick and told me to “take this stick and swallow your feelings”. She giggled, and so did my son. (I did not swallow the stick, just so you know.) I did asked where this phrase came from. Did it come from a cartoon? A video game? A friend. My son told me that Alexis just said it. She made it up he said. Honestly I am not sure that is true, but wherever it came from, she had taken a liking to the phrase.

She used this phrase most of the week, then on Friday we all sat down in the evening to watch a movie, Inside Out.

That is when the old diagram and the conduits to the Islands of Personalities started to merge in my mind.

What you will find often enough with young autistics, is that when you ask them a question, there is a delay in response. In school, this can sometimes be seen as not knowing the answer to a particular question, but in reality, it is processing time. Autistics seem to have a delayed response. This, I should note, is the appearance to us Neural Typical people. Not necessarily what is going on inside their heads.

With High Functioning Autism, I have found more and more there is scant research and information as to how they think. Most of the research is devoted to making them behave like us, conformity. While that isn’t wholly a bad concept, I personally think it’s a little off. Personally, I would rather they would work with Translation than Conformity.

Translation works like this. My daughter has emotions. She isn’t dead inside. In fact she is vibrant with emotions. She just can’t get them out for you to see. Or when she does, she selects the wrong one. Her islands of personality do not have straight paths, in fact, they are a spiderweb of paths. She has to sort through the tangle web to find the correct response. Sometimes, the paths get crossed, or intertwined. Yet while the character Riley from the movie had Emotions that controlled her from Headquarters via a console, in Alexis’ case, the console is a little glitchy. She may select one emotion, yet another comes up. Much to her chagrin.

These are the things I work on with her. Helping her learn what is the ‘normal’ response to a situation. How to deal with emotionally charged moments, and to seek out the proper response. I don’t force her, I guide her. I ask questions, and if the response is incorrect to what society expects, I do my best to explain. It is not a perfect method, it is time-consuming and well, frustrating at times for both of us.

The common method now is conformity. Basically taking away and giving, to make an autistic conform to societal rules. This method may work better for some, I’m not knocking it, have used it to a degree, yet I don’t feel the carrot and stick method works that well with HFA. They will outsmart you, and use it against you.

 

Spiderwebs

 

It was the combination of the movie, and my old friends diagram, and her new catchphrase that gave me a new insight into my daughters mind. What exactly the stick represents, I really am not sure. Yet swallowing one’s feelings? I have a hunch that is how she sees our world. That maybe, more often than not, she has to swallow her feelings rather than express them. Because expressing her feelings is hard, yet swallowing them? That is easy for her. Better to leave them inside rather than select the wrong emotion.

Yet, it comes with a price. Like the stick in the metaphor, to swallow a stick would be a hard thing to do, getting stuck in one’s throat, tasting nasty and dry. Leaving you with a bad taste, and a sore throat. Emotions, and our ability to express them correctly, is hard enough for those of us that do not fall into the Autistic Spectrum. For autistics, the wrong selection could be catastrophic. So, swallowing the stick is sometimes better than selecting the wrong emotion.

 

 

…Not Judgement.

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A sign posted on an elementary school wall.

 

Last week when I picked up my 5-year-old niece from her Pre-K class I passed a wall plastered with pictures and stories. In the center was this sign.

Autism is one word trying to describe millions of stories. and underneath, offer support, not judgement.

This may seem sappy, but the sign, the wall, what had been going on in my life at that moment, hit me hard. I did my best to hold it together and walked on to pick up my niece. Walking through a crowded hallway of parents and overly excited 4 to 5 year olds, who jostling each other for a turn at the drinking fountain. I signed my niece out, lead her out of the school, stopping to snap a picture of the sign. Then I thought about writing this blog. But I didn’t write. I thought about it for nearly a week.

I fully feel the support. From friends, family, school teachers and professionals who help us with Alexis’ Autism. It is a wonderful feeling, and I am truly grateful.

Yet at times, I feel the judgement. For many, Autism is just an unknown. They look at it from the outside and see…well they see a new car. See, I thought about the sign for nearly a week, and found an analogy that made sense.

 

Analogy Time!

 

Lets say, for the sake of analogies, Alexis is a new car. Snazzy, looks great on the outside. Sunroof, all the new fangled bells and whistles. I drive this car everyday. So I know this car well.

On occasion I give people rides. They like my new car, say it works like every other new car they know, looks like a normal car to them too. But they don’t drive it everyday like I do.

See, every once in a while, my navigation system won’t talk to me. It is very frustrating. I really need it to work sometime, but it doesn’t some days. Selective Mutism.

Then the fuel system doesn’t work, and my car vapor locks on me. Just stops.  Getting it to work again can take days. Sometimes, I have to take it into the shop. Gastrointestinal issues.

The sun roof is stubborn too. It will open, but refuses to close. Hangs up and the navigation system complains it hurts too much to close. Tactile Issues, Hair.

But everyone sees this awesome car on the outside, and they don’t understand the issues I have with it. I can tell them, and they will listen, but then they look at my new car, and shake their heads at me.

“It’s fine, what are you talking about. Can I have a ride?” They ask.

“Sorry, not today, the fuel system is backed up and the navigation system quit talking to me about it. Sunroof needs an adjustment too.” I tell them.

“You know? You complain about that car too much. It’s fine, you just need to drive it like everyone else who owns a car like that. You probably don’t know how to operate it properly, it looks just fine to me!” I hear. And all I can do is sigh.

Silly as this analogy is, unfortunately it is accurate.

Alexis has issues that come with Autism. Even as high functioning as she is, there are still issues that seem to baffle people.

In her case, Autism is expressed by extreme anxiety. Yet this anxiety is quirky. Things that freak other people out? Like roller coasters? She’s fine with them.

She loves roller coasters.

Yet a word, a phrase, a look can push her anxiety levels to nearly catastrophic levels. She will go mute, she will lash out, she make odd sounds and nervous tics. Then she will become constipated due to her anxiety. Which, a little TMI, becomes a nightmare to deal with. From as little as going through ten pairs of undergarments a day, to doctors visits when it gets severe.

There is also the impression that she needs to learn to behave like other children. Or that this is just a phase she will just grow out of. As if this is a cold she will shake, and I am overreacting.

She will never behave like other children, she will not grow out of it.

She will learn to adjust to our world. Find ways to cope with stresses that plague her now. She will grow, learn, become a productive adult. In her own way. I am so very thankful she will. Other who have autism, are not so lucky.

I don’t doubt her future successes, yet right now she is (and we are) in the adjustment part. Working on routines to keep life on an even keel for her. Because at this point, routines are important for her, and difficult to keep in the busy, fast paced, modern life.

I call Autism The Wicked Little Tailor, because it is. Autism truly is one word to describe Millions of stories. Each person whom it touches, it does so in its own unique way. No two autistics are alike. Each person wears their own little suit of autism, and has to cope with it.

Those of us who are the caregivers, we have to not only help them, but be an advocate for them. Do our best to teach others.

And honestly? It sucks sometimes. Teaching others. They would rather judge than listen.

Because to them, the car is new and shiny, it should work like every other car its age. They are only the occasional rider, they don’t drive it everyday like I do.

 

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.

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.

Unicorn Alexis

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.