Take this stick and swallow your feelings.

20180724_084650

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.

 

 

Advertisements

In the Course of Human Events.

20180703_1416171

The three faces of Thomas Jefferson. 2004-2006. / Photo by KidZond.

Do me a favor.

Take out a piece of paper and a pen. Sign your name. Take a good look at it.

Now, I want you to be afraid of that signature of yours. I want you imagine that sometime in the very near future armed men are going to come to your house in the wee hours of the night to break down your door just because of that signature. They will drag you away, and bind your hands. Then, without a trial, without any recourse to defend yourself. They will put you on the end of a wooden cart pulled by a mule, place a rope around your neck and while a drummer rattles off a drumroll, move the cart and hang you till you are dead. Your signature just cost you your life. Also cost your family their freedom, their home, all of your property. Your friends will be harassed, maybe even arrested just because they knew you. Extended family member also. Just because you signed a nasty letter to the leader of your country.

We tend to forget history in the United States of America. It’s not one of our strong suits as Americans. Ask any high school kid which subject he or she finds the most boring, they will most likely tell you History.

I wasn’t that kid. I had the good fortune of having one Mr. Ronald Beam as my history teacher. A short stocky man, with red hair and freckles. Mr. Beam was a lover of history, he passed on that love to me and others. He made history funny, entertaining, and mostly, he made it come alive.

Maybe on purpose, or by his sheer comedic style in class, he let me imagine what it was like during important times in my nation’s history. He let me put on those historical figures proverbial shoes.

So, I think about my signature. And so should you.

We have all signed documents of importance. Buying a car, maybe buying a house, or maybe enlistment into the armed services. While important, not one of these documents would brand you a traitor. None of them would put you on a short list of individuals who must be caught and hung for the crime of treason.

Yet a group of men did just that. Put everything on the line for the stupidest of reasons. An Idea.

“We hold these truths to be self-evident, that all men are created equal…” 

Of course, this isn’t true. If anything, all men (and women) are created unequal. Even back then, the idea that this line applied to women, native Americans, and black slaves, was untrue. Yet the Declaration of Independence, wasn’t just this document. It was a letter, addressed to the King of England. And that line was critically important.

King George III was the King of England at that time. He was also a very religious man. He was also rumored to believe in the ideology of Divine Rights of Kings. Even if that was not accepted in England anymore. Still, the Revolutionaries knew how to push buttons, and by calling for all men to be equal at birth, was a jab. And a good one. The King, they contended, was no better than them.

We miss that in our study of history, and the importance of the document. It was a letter, to a far off King who was above reproach. A King that believed in absolute loyalty to The Crown, and not disobedience of a bunch of Colonials.

We The People…

If you look at the first 10 Amendment of the United States Constitution, you will find what is called the Bill of Rights. Each of these 10 amendments are reactions to Colonial rule. They are guaranteed rights to freedoms that were taken from us under English rule. From the right to complain about how the government is run, to the right of a fair trial. You don’t have to belong to The Church of England to hold a political appointment, nor do you languish in a prison cell awaiting a trial that will never come. You definitely will not be hung for saying you dislike or disagree with your political leaders.

This concept, that regular people, fellow countrymen are our leaders, because we choose them to be, was rather unique back then. That the People, not the government, was the ultimate power. That We the People decide our fate, not Kings in a distant land, nor a Parliament which didn’t represent us directly, but told us that they did.

We The People…well, we kind of forget that from time to time. That those men who signed a letter, put everything on the line, did so, so we can decide our own fate.

A little Revolution now and then, is a good thing…

I’m sorry to inform you that the Revolution didn’t end at Yorktown. Actually, it’s still going on. One unique quality of the United States of America is that we are in a constant state of revolt. Every four years we reshape our collective vision for our nation. We go from Right to Left, from Up to Down. We find those servants willing to direct us in a way we desire. And if they don’t follow the vision they lay out? Well, we can peaceable remove them in the next election.

At the time, this government of the people, by the people, for the people. Was unique in the world. An experiment to see if people can rule themselves. That, we are, under our Constitution, created equality among ourselves. No one is above the law we set forth to govern ourselves.

It’s not perfect, we’ve made a lot of mistakes along the way. We have also owned up to many of those mistakes and strive to put them right. Our nation isn’t perfect, yet we strive to be. We strive to do our best, improve our lot in life, and the lot of others around the world. We, revolt, and we have never stopped from day one.

So, take a look at your signature. And by doing so, consider those imperfect men who wrote a letter to their King and said he was King of them no more. That they would govern themselves.

And as you look at your signature, consider what they put on the line to sign that letter. The price of failure. And ask yourself this simply question.

Would you have signed it? Knowing failure would have cost you everything? And if not, what would have become of us if they didn’t?

 

The Misandry of Fatherhood.

20180527_212309_002

Nick with sparklers. / Photo by KidZond.

This is a little odd for me, but I want to talk about a father that many people I know say is a wonderful Dad.

Me.

For the last 26 years I have been told this by family and friends. That I am a wonderful, caring, dedicated father. That through adversity, a horrible divorce, I stepped up and raised my two eldest daughters. I have been told, by my own mother nonetheless, very Motherly. Wasn’t exactly sure how to take it, but I was pretty sure it was a compliment.

Being a parent was something I had always wanted to be. I can remember being a teenager and fantasizing about being a father one day. Yet, it really wasn’t my initial plans.

I was going to be a paleoanthropologist. Teach at a great university, go on digs during the summer months, write tomes of works dedicated to the field of primitive man. Yet it never happened. Life got in the way. I never went to college for anthropology, I only took silly courses that amounted to nothing.

At 28 years of age, I became a father, and for the last 26 years, I added to my brood and now have four children. At first? I had no clue what I was getting into. I had never hung around babies, nor small children. My cousins, and nieces and nephews, were all around my age. Being the youngest child of a family of four, with nearly 17 years difference between the eldest and me, I never experienced children that weren’t close to my age.

So, I was an idiot. Had to learn on the fly. Yet I had good teachers in my parents.

When I split with my wife in 2000, I suddenly became something I had always dreaded. A weekend father. It was rough, very painful, and the thought of giving up was very real.

When the weekend father part ended, and I became a full-time single parent. I was so overwhelmed that first three weeks that I want to run off and hide under a rock. But I didn’t. I stuck it out, got the girls in school, and made all the arrangements from changing my shift at work, to having a neighbor watch them after school till I got home from work.

What I didn’t expect, was the misandry. In case you are wondering, misandry is the hatred of men. Or contempt, which I got all the time, being a father (Male) with two daughters (Female).

I had experienced this before, since I took my daughters to many of their doctors appointments by myself before the divorce. This was done by design, since my wife at the time worked days, and I worked nights. Made it easy.

Yet the question of when my daughter’s birthdate always came up, and my quick answer was ALWAYS met with the surprised response from the nurse that I actually knew it. This little misandry grated against me, yet it was nothing compared to when I was a single dad.

Because dad’s can’t raise daughters by themselves you see, we are incapable. We just don’t have it in us. Then of course there were the side-eyed looks, of why I would be in a house with two little girls in the first place. By myself, without a female there to guide me.

Teachers would say disparaging remarks about me, either to my daughters, or within earshot of them. They would talk down to me, be contemptuous, and overall ignored any concerns or cares I had.

“Have you talked to their mother? Could she come in and see me?”  Was a line I was given over and over. As if talking to dad was beneath them.

I did my best not to let it get to me, but honestly? When my youngest two came along, and went to the same school district? I was jaded at that point. Untrusting of teachers and faculty. But, to their credit, the school personnel that I deal with now, are very nice. Then again, there is a woman at the house, my wife, and mother of my youngest two.

Don’t think I don’t wonder. Don’t think I don’t have that little fear in the back of my mind that without my wife, once again, I am nothing.

Both of my eldest daughters are grown, they are mother’s themselves. They had a rough upbringing, stories I will not repeat here. Yet…

They are respectful of me.

They say Please and Thank You.

They are not hooligans and in and out of the correctional system.

They both have jobs.

They both contacted me for Father’s Day. To tell me they loved me, and were thinking of me.

I worked a 12 hour shift today at my work. It was a hot, miserable, humid day. I work outside. Yet on my breaks, I saw the messages from my oldest two. When I got home, I was greeted by ‘Happy Father’s Day Daddy’ and cards. Hugs and Kisses all around.

I do not, by any stretch of the imagination, think I am the best dad in the world. I would give that honor to My Father, gone these 22 years. Yet I know so many good fathers, those with partners, those without. I see the single father’s struggle, know their plight.

Being a good dad, a great dad, is simple. You just have to care, and let your children know you care.

And to hell with the naysayers.

The Gift.

20180529_211440.jpg

A Fancy Fidget Spinner. / Photo by Kidzond.

 

The gift was given a ‘hmpf’ and put on the armrest of my parents couch. It was a book, nothing grand, just a book. A diary of Christopher Columbus and it included historical notations. It was fancy, had maps, very cool design. Yet, my father ‘hmpf’ at the Christmas gift and put it down.

I seriously hated buying gifts for my father. He was, well, the worst. Except for a set of knives I bought him once, that he absolutely loved, he never seemed to care for anything I bought him.

Well, there was that small remote-controlled car I bought him that he liked. But he used that to chase my mother’s cats. 

It wasn’t till some years later, after his death actually, when my mother handed me the book and asked me if I wanted to have it back. I commented that he probably never read it. She corrected me to let me know he read it all the time. Loved it.

I never knew it.

I had to be told after his death that the gift I thought he hated, he loved. Read it, and re-read it, over and over. It was, as my mother told me, one of his favorite possessions.

People are quirky. Things that people keep as keepsakes tell more about someone than anything it seems. Usually, something is not what it seems. The object may be special, even prized, yet the meaning behind it, that is what counts.

The fidget spinner in the above picture is one of those objects. It was given as a Christmas gift from my eldest daughter, to my youngest. Big sister wanted to give little sister something really cool. Jenelle was proud of herself to find this unique spinner. Alexis acted like it was nothing when she opened the gift. Kept it in the box it came in for months. To Jenelle, it seemed like a gift rejected. But to Alexis? It was the best gift ever. So special, she kept it out of sight of other children, on her desk, in an honored spot. She brought it out today only because we saw some fidget spinners in the store today. Yet only she could touch it, her little cousin, brother and friends were not allowed. This gift, one thought to be a failed gift, is like my father’s book. It holds a special place in Alexis’ heart.

Another special object, that would bring me to tears one very lonely day in my life, is a stuffed rabbit.

Herr Rabbit isn’t much to look at. A simple beanie baby stuffed animal. White, with colorful polka dots. Herr, the German word for Mister, was also a pun, Hare became Herr.

Playing stuffed animals with my children has always been a fun thing to do. A little window into their imaginations. It is usually silly, full of excitement from lava flows, wild animal attacks, and stuffed animals that go bad. Like the jaguar of Alexis’ that keeps wanting to eat the other stuffed animals. You know, it’s a jaguar. It’s in their nature. Don’t judge.

Herr Rabbit was ‘my toy’, the stuffed animal I played when my eldest two children and I, played stuffed animals. We would, in the days of me being a weekend father, play stuffed animals on cold winter days, or rainy days, or just because. Playing stuffed animals with them became a pastime, a father-daughter bond, one that has continued on with my youngest two, and even with my grandson. I’m sure I’ll be playing stuffed animals in the nursing home with the staff.

Herr Rabbit was German, he spoke with an accent, bad accent, but an accent. He would be the foil to my eldest two daughters plans. Usually spoiling their plotlines in a silly manner. Eliciting protests and laughter, usually both, at the same time.

Yet his silly antics earned him a special place in their hearts. He was mine to play, yet his owner was my daughter Kayla. It was her toy.

When I went from a weekend dad to a fulltime single parent, Herr Rabbit and the stuff toy playtime, helped easy the emotional burden. Kayla would sleep with Herr Rabbit, or put him in an honored spot in the girls bedroom.

Growing up, can do a number on playtime. While it is all the rage when you are pre-tween, those few years between a child and a teenager seem to have an effect on you. One minute you are imagining that you are the Queen of the World, the next you stop with Barbie in hand and go “This is childish” and stop.

Jenelle stopped. And of course, since she wouldn’t play, it just wasn’t the same anymore. So, Kayla stopped, and we found other things to bond over. Herr Rabbit, however, was still around. Waiting patiently for someone to pick him up and give him his voice. Even if it was in a bad accent.

As things go, and as parental custody does sometimes in divorces, my eldest two went to go live with their mother, out-of-state. Although I kept a good face, and did my best to alleviate their fears, inside I was dying at the prospect of being so far away from them. The pain and anguish was horrible.

When the time came, I drove them some 30 miles from our home, to their Aunts, for them to continue their journey. All the time telling them that everything would be okay. On my drive back home, alone, seeing the road was difficult. I had to keep wiping my eyes.

My duplex, where just us three had spent a few years together, was now a lonely tomb. I wandered around for a good five minutes just looking at an empty place. Then, I went into my daughter’s room. Two empty beds, made, and all their belongs gone.

Except one.

On my daughter Kayla’s bed sat a small stuffed white rabbit with colorful polka dots. Sitting their as if he too was wondering when the girls were coming back. Herr Rabbit sat there, his black eyes staring at the bed, waiting to play again.

Although on loan mind you, this Gift, was one of my prized possessions. Even if it is just a memory. That moment in my life stands out like no other. Because at that moment, I knew I would still be in their lives, even if I wasn’t there physically.

Like a Book, and a fidget spinner, this small little rabbit with a funny accent, became my prized possession.

 

 

For Robert.

20180518_212107.jpg

Here sits a lump of clay, ready for me to shape. / Photo by Kidzond.

 

I’ve been reading a book this week. Sort of a horror/dystopia story about vampires. I have about another 90 pages to go before the end of the story.

I didn’t like how the author started off the story. The setting was cool, but he seemed to lack focus on what the issue was. Hints to, but never explains what the real issue at hand is.

Despite the grammatical errors, hiccups with elements of the plot, the two main characters are good. I am truly curious as to what their fate will be. And that has to be the best part of the story. I actually care as a reader what will happen next.

Yes, this is my story, my first draft of my ‘first’ novel. Why quote marks? Because it truly isn’t my first. I wrote a novel a few years back and sat down to read it, like I am doing now. My father’s ghost tapped me on the shoulder and whispered in my ear.

“That truly sucks you know. What are you trying to even say? What is your point?” I could only look over my shoulder and nod, placing the pages into a manila envelope and dooming the novel to sit upon a dusty shelf for all of eternity.

This book I am reading? It may actually see the light of day. I hope it does. It is still a lump of clay, but has a shape. A structure that I can look at and say, “I see where you are going here.” and take out my tools and start to shape it into a book that will keep some up past their bedtime, turning the page to see what happens next. That is my hope, the hope of every wannabe author.

Stories rarely just pop into my head. Usually a scene does, one that I think on, expand upon, and if good enough, commit to paper. I normally hand write out my stories, then sit at my laptop and tap them out.

This story, came from an oxymoron. We went swimming at a local pool years back. I was sick, so I did not want to get into the water. My youngest children were kiddy pool age, so I sat and watched them. It was on July 14th, Bastille Day for the French, that will become germane in a moment.

So, sitting down, watching my wife and kids splash around in this public pool that is only opened during the day, I notice they had lights. A really good lighting system. New. But why?

“Well maybe it’s for the vampires.” I mused. Swimming on Bastille Day, a short story, was born. I wrote it down, then I tapped it out on my laptop. It sat. I tweaked it, it still sat. I had in my cloud, and thus on my phone. By now, almost 3 years had passed. And every once in a while I would look at it. I had the good luck to look at on the flight back from our family vacation. It caught the eye of my sister-in-law’s fiancé.

“What’s that your reading?” He asked.

“Oh, short story I wrote.” I said.

“Really?” He said as I handed him my phone. A half hour later he handed it back. He liked it, but had so many questions. In the end, the story didn’t make sense to him. I needed to explain it more.

I think I rewrote that short story a dozen times, cursing at each draft. It was not going to happen as a short story. Maybe a Novella? Wasn’t sure.

The novel was delayed by a conversation with my brother Jay. Who stated that everyone wrote about vampires. Which, is absolutely true. Stick a fork in the genre, it is as crispy as a vampire in the sunlight.

As I turned away from the novel, and life interrupted me more than I wish, drawing me farther away from my writing, I considered something. Is my story about vampires? Is any story just about its genre? No, it’s about the characters. How they react to the situation they are in.

It took me 45 days to write the first draft. Countless interruptions, coffee breaks, smoke breaks, potty breaks, and life’s general interruptions.

Then I started to read my book. I frowned a lot at the first 70 pages, had to do my best not to pick up a red pen and attack it. I reminded myself this is the critical part of writing. Do you like your work? Are you, as the author, curious as to the ending. Even though you know the ending? Like re-reading your favorite novel again? Does it still peak your interest? So far, yes. I want to know what happens to my characters.

While writing a story is the fun part, the nuts and bolts of creating a novel really intrigue me. I am doing the first read of the first draft. I will edit my novel. Then, hoping it won’t cost me a small fortune, get with an editor I know. Have her go over it with a nit comb. Then after that, have it proofread again. Finally have a few people read it.

One person that I hope will have the time to read my story is the person who looked at me on that airplane flight and asked so many damn good questions. Yet still said, they liked it. My brother-in-law Rob. He’s a bit of an asshole, which is fine, because so am I. We argue, discuss, and love each other fiercely. We truly are family.

Yet I would be remiss to say I don’t dread his reading of my tale. For while others will tell me they like it, yet secretly harbor dislikes, I will not get that from him. He will simply hand me back the printed pages and shake his head. “Nah, didn’t like it.” And that will be the truth. It is rare to find an individual with his bluntness. It is also alarming and scary.

However, if you want to succeed at anything in life, you need a Rob. You need someone to tell you if your work is good, and to give you constructive criticism. To ask the hard questions and have you explain yourself. And, like he did on that flight, when I explained a point to my ill-fated short story.

“Why didn’t you say that in the first place then?”

So, with so many people I will have to thank for this novel when it sees the light of day, I could think of only one person to dedicate it to. My harshest critic.

…Not Judgement.

20180421_194044.jpg

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.

 

A Letter from a Little Brother.

Jay Jon 1967R1

My brother Jay and I. 1967/ Photo by KidZond.

 

I have no shame. This blog today is my birthday gift to my Brother Jay.

Just so you know.

Figured it was best to be honest.

However, I write about family relationships mostly. And what could be more family than siblings relationships?

I have three siblings, fairly spread apart in ages. Jay is my closest sibling in age, 7 years older than me. Then my brother Gary who is 13 years older and my sister Karen who is 16 years older. Till I was 11, Jay had been a constant figure in my life. Not always for the better I should say. Being the bratty younger brother was a special talent I cultivated when I was little.

It took me years to get to know Jay, many years actually. As kids our favorite pastime was taunting each other. I would always pull the ‘Mom Card’ and rat him out, which you know, probably wasn’t the best thing to do. He’d find ways to get me back.

It’s funny, but back then the taunting, teasing, being mean to each other was so dramatic and a tad terrifying at times to me. Now? That time in my life are some of my best, definitely  funniest, memories.

Although we didn’t know it at the time, being the youngest two we had a lot in common. Our childhood was at a bad time for our Dad. He was in the manufacturing industry, making screws, nuts, bolts. That industry took a dive in the early ’70’s. So he went from job to job. We, being the youngest, and still at home, moved along with our parents. I had the luck of being 7 years younger. I could make friends easier. But when you are under 10 years of age, back in the 1970’s, all you had to do to make friends is hold up a football.

During a phone conversation, we counted how many different schools we had gone to. Jay had been to 8 different schools, I had been to 7. Jay was always the new kid in High School. Sometimes twice in one school year. This instability in our lives wasn’t good for us, it isn’t good for anyone actually. Adjusting to such instability was harder on Jay than it was on me. I didn’t understand it back then, only when I was older did I get it.

When Jay was 18 he joined the army, I was living in Mexico at the time with our parents. He wasn’t allowed to come to Mexico. A fight between our father and him. I don’t know the full details. Yet that parting was when I was only 11 years old. So I had known my brother as a child, not as an adult.

Years went by, and Jay came to back to the midwest to live for a while. We actually got to know each other as adults. It was a little odd at first, I think for both of us, I know it was for me. However I think we both aged well, and for the first time, really enjoyed each others company.

Back then when he first moved back (it would only last about a year before he moved back West) we could talk to one another, as adults. We moved on from being siblings to being friends. I guess that is the best thing I can say about my brother. I would pick him as my friend even if he wasn’t my brother. Lucky for me, I can have both.

Now, we talk fairly often. Easily once a month, sometimes more. Unfortunately we live thousands of miles apart. He lives on the West Coast, I live in the Midwest. So visits are not simple. Whereas his kids are grown, I still have a young family. Not easy for me to just jump on a plane for a weekend getaway visit.

Time and distance can be cruel when it comes to love ones. I have entertained the thought of moving closer to my West Coast family, our sister lives out there too. Yet my roots are here in the Midwest. As are my wife’s. His are west of the Rockies, where he lives with his wife Leslee and their cats.

We did get together last year. It was a fun time, and that week will live with me till the day I die. Especially one night we talked and drank, talking about Everything.

KarenLesJay

From Left to Right. Karen (My Sister) Leslee (My Sister-in-Law) Some dude whose birthday is today. / Photo by The Annoying Baby of the Family.

 

When I think about relationships, family, friends, and even co-workers. I look very fondly upon my relationship with my Big Brother Jay. He’s one of those people who fall into the Real category. If you ask his advice, he’ll give you it, straight forward, no-nonsense type of advice. He will state his opinion if he needs to, remain silent when he thinks he should. We don’t always agree on everything, but we both are okay with having different opinions. If you think on it, that’s kind of rare in siblings. People in general for that matter.

Over the years I have found a deeper appreciation for our relationship. His wit and humor that reminds me so much of our fathers (without the bite to it). His complains about his receding hairline…I just shake my bald head at him. His love of cooking, which he has perfected to an art form. His love and respect for our sister, who at very low times in his life, was his rock. And his love and appreciation for his wife Leslee. A woman, who upon after our mother met her, said to him bluntly “She’s a nice girl, don’t screw this up”.

We are also in the same business, Trucking, so it nice to get advice on matters from someone who has your back. Knows the trade and can give you pointers.

What I wish most for my brother is for him to know he’s a great guy. Not prefect, not even close. It is his imperfections that make him perfect. Life has beaten the crap out of him at times, yet he keeps going. He does what makes him happy, and keeps it real.

Life isn’t easy, nor is it close to being fair. We all have regrets, we all wish things would have been different. Yet those things, those choices we make, shape us into the person we are. Many I know would have given up if they went though half the things my brother Jay has gone though. I doubt I could have been strong enough.

I told my oldest daughter Jenelle what my father’s thoughts on my brother Jay were. That my father said “Jay alway took the harder path, even though the easy path laid before him”. I disagree with my father’s assessment, yet my daughters reply was most eloquent.

“The harder path is more interesting.”