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. 

 

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.