What my 11 year old Autistic Daughter would like you to know.

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Goofing off at a Park. / Photo by KidZond.

 

Author (Father’s) Note: I’ve been trying for the past couple of weeks to coax out of Alexis how she feels about being autistic. What she wants people to know about her. It hasn’t been easy, nor direct. But although this is not her direct language, it is my approximation of how she feels, and what she wants others to know.

 

First off, I don’t like the term ‘Autistic’. I don’t want to be seen as different than other children. But I am very aware I am. When I am called autistic, or told that I have autism, that is just another reminder that I am different, and who wants to be different? Not me.

 

I have emotions, plenty of them. Just like you. They are inside of me. But the difference is this. I have trouble expressing them, or when I do? I express them the wrong way. Most kids my age don’t really care. We are out to have fun. Adults however get lost by this, they don’t seem to want to take the time to let me ‘translate’ my emotions. Despite what society likes to think of me, or others like me, we are not ’emotionless robots’. We feel, but those feelings? They are like a whole other language for us, and we have to translate them in our mind. Speaking to me sometimes is like speaking to someone who has another native tongue, and they have to find the right English word to tell you what they want. Be patient please.

 

I lie. But not for the same reasons most kids lie. Well, not always. I lie to keep emotional stress away from me. When I spill something, I say it wasn’t me. It is not to avoid guilt, but to avoid the emotions connected to the guilt. We you do something bad, most people feel guilty about it, and there are a lot of emotions attached to it. For most kids, like my brother, he may tear up, apologize several time, and feel bad about it. Those emotions get lost in translation for me. It is just so hard to find a way to say ‘sorry’, so I deflect it by saying ‘wasn’t me’.

 

I have an excellent memory, better than yours I bet. However my memory is different is some ways. Recall can take a moment. I don’t want to be wrong. So, in school? I take time to answer questions, which for some teachers, it can be frustrating for them. Also, dealing with adults in general. One thing about my memory that may surprise you, I recall things from the past like they happened yesterday. Emotions are attached to memories, and when I remember good things? I smile and laugh about it. It’s the bad memories that are the problem. If someone is mean to me? Or upsets me? I remember that about them. They could have done the mean thing to me years ago, but when I see them? I remember it like yesterday. I tend to avoid people who have upset me in the past. I can forgive, but it takes me much longer than most.

 

Simple things bother me. I don’t like loud unexpected noises. I don’t like automatic flush toilets. Or air hand dryers. Loud music can bother me sometimes. Crowds too. Expecting a response from me is annoying. Like “Please and Thank You” Why do you use them? I really don’t see a need. If I give you half my donut, you don’t have to tell me Thanks. I know you are Thankful. You use a lot of frivolous words you know.

 

And about frivolous words, what is with that? My dad said to me one day to get dressed now, because we are going out later, that way I could Kill Two Birds with One Stone. I had to ask him why we needed to kill birds with a rock? He told me it was an expression. I’m not always fond of expressions. I like it when people say what they mean, not use confusing words that do not make sense. And why is Pink a girl color? And Blue a boy color? Society has a lot of rules that just don’t make sense to me.

 

I have issues with touch, hearing, sight. These senses are heighten in me. So, I wear comfy clothing, because clothes you expect me to wear? Okay fine, put on a burlap sack for a day and tell me how that feels, now do you understand my fondness for pajamas? My hair is mess a lot, because brushing it? It literally hurts. My digestive tract can cause me problems, and embarrassment, an emotion I dread just as much as guilt. I have avoided school in the past because I was worried I would have an accident at school. I am very aware of how that would have gone over.

 

About school. I don’t go anymore. I do schooling online, and will go to a smaller private school this coming Fall. Why? Well, think of it this way. When I would go to my school it would become too noisy, too busy for me. I would get anxious, and that would stress me out. If I get too stressed out? I have to shut down for a while. It is called an Autistic Cycle. I can literally forget everything for a while till my brain ‘reboots’. Emotional stress does this to me. School to me was like having someone in the background drag their nails down a chalkboard. This sound would be far away at first, but by the end of the day? Right next to me. Yet I like to think I am still go to my old school, because not going to my old school? Makes me different. I hate being different.

 

Most of all, the one thing I think you should know about me is this. I am me. I am an individual. Everyone is different…so my father keeps telling me…and as much as I hate being different? I am, I know I am. And I don’t like this about myself. I just want people to treat me like they treat everyone else. Yes, I may not behave as you expect me to behave. My emotions are hard for me to translate. Be patient, as you would with anyone else. I am working on adapting to societies expectations of me. I try, hard as it is, I try. But, could you for once, maybe adapt to my expectations? Give me the space I need to become the individual I was meant to be? Give me time to figure out this strange emotionally charged world you live in? This is a strange world for me, and I work at adapting to it everyday. My parents tells me I am on a spectrum, that there isn’t a ‘one size fits all’ with autism. That there are many on this spectrum, and each of us are an individual. And should be treated as such.

 

 

This is Austin. He’s Autistic, not Broken.

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Who wouldn’t want a Rainbow cookie? / Photo by KidZond.

 

For Spring Break we took a family vacation to the Mall of America. It was nice to get out-of-town and walk around, seeing the sights, riding the roller coasters, and being conned into zip lining by my 8-year-old son.

It was on our first day at our hotel that we met Austin and his Mother. We would see them only once, and not for the rest of our trip. How we met during breakfast was simple. Austin, around my son’s age, was wearing the same pajamas as my son. A cute little red-haired boy who came up to our table to smile at my son, delighted they accidentally dressed as ‘twins’.

Austin did not speak to us, just smiled. His mother came up to us, put her hand on her son’s shoulder and spoke these words.

 

This is Austin. He’s Autistic, not broken.

 

I said hello, and then it hit me what she said. It was cute, catchy, and sounded like a mantra she had repeated often. And although I only met Austin and his Mother once on that trip, I have thought about what she said, that mantra. Autistic, not Broken.

I went though a lot emotions thinking about this mantra, from finding it mildly offensive. I never said your kid was broken lady! to inspired. What a great way to introduce autism to others! Yet I couldn’t get over the sadness of it all.

See my youngest daughter is High Functioning Autistic. I never told this to Austin’s mother. I didn’t have a chance. I have never thought my daughter was broken.

 

Then again, maybe I have.

 

As hard as it is to admit. There are many times I wish my daughter was not Autistic. Sometimes this wish is selfishness on my part, most it is for her. I absolutely HATE the fact the world will be a challenge for her. That people will look down at her, ignore her, and ultimately categorize her into a slot that they can ignore.

The endless explanations to family, friends, strangers, about why she behaves this way or that. Or choices we are forced to make on behalf of our daughter that people are confused by. The advice that is more condemnation than support. That you just have to smile through, and nod, while internally you are screaming.

The many private things we do not discuss. The bathroom issues, the sensitivity issues, the Autistic Cycles she gets caught in. All those things that are a challenge to my family, to her, and our choice not to broadcast it.  They don’t understand the why’s. Even when you have explained it a thousand times.

Because Autism is a Wicked Little Tailor that fashions a suit for each individual, those of us who are A-Neural Typical can easily get lost by autistic behavior. Is the kid rude? Is she dumb? Wow she’s smart! Is she top of her class? Why is her hair messy? It’s 3 pm, why is she in pajama’s?

The questions, looks, attitudes abound. You as a parent navigate these perilous conversations and hope the adult will not be an ass to your kid. It doesn’t always turn out that way.

Sometimes the world surprises you. I was surprised at the Mall of America, at the Sea Life exhibit. If you have the chance, this is a wonderful place to visit. You can see an array of marine life, and even touch some.

One part of this exhibit is an acrylic tunnel you walk through. It takes you though 300 feet of the exhibit showcasing the aquatic life native to Minnesota, the Amazon, Rainbow reef and mythical Atlantis. You literally walk under the water and see the wildlife swimming around and over you. My son loved it, was beyond thrilled to go through the tunnel.

My daughter on the other hand, stopped dead at the entrance. I tried to coax her to go in just a little bit, but she was not having it. I did my best to alleviate her fears, but still she would not go. I let her mother and brother walk on as I tried to decide what to do.

Then the wonderful happened. A Sea Life worker noticed my dilemma. She came up to us and asked if we needed help. I told her that my daughter was High Functioning Autistic and seemed to have an issue with the tunnel.

The day before I couldn’t get her off the roller coasters, so I was a bit shock at her balking at the tunnel. Plus she is an animal lover extraordinaire, why this bothered her? She still hasn’t told me why. But it did, and the Sea Life worker noticed, and knew what to do.

Opening a side door, the worker walked us a short distance to another door and we bypassed the tunnel. I got the impression the worker had done this before, and that she had done this before for Autistics.

I was incredibly thankful to the worker. To the whole of Mall of America, which is sensory / anxiety friendly place.

It was a moment like that one, that gave me hope that others do understand. That they do get what Austin’s mother said, and now I do too. That with awareness comes compassion, with awareness comes understanding, and ultimately, with awareness comes knowledge that we are all individuals, we are all human beings deserving of respect.

This is National Autistic Awareness Month. 

And my Daughter is Alexis, she’s Autistic, not Broken. 

 

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.

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.