To Explore Strange New Worlds – Fun and Informative (A Book Review)

To Explore Strange New Worlds: Understanding Autism Through A Star Trek Lens ~ By Elizabeth W. Barnes

I have to begin by saying that I always loved to read, until I hit the age where my arms were no longer long enough to see the pages clearly and I had to begin wearing the dreaded “reading glasses”.  I do not know why reading a book while wearing the dreaded “reading glasses” bothers me so, but it does. Although I have from time to time, purchased a book with all good intentions, I can’t say I have been able to get through a single one.

The subject of Star Trek and autism relating to each other was intriguing to me. I have been a Star Trek fan since the first episode of The Original Series hit the airwaves; a VERY long time. I have a parent to a child with autism for over a quarter of a century. These are two subjects that I can relate to more than most.

I have always looked at Star Trek as diverse and inclusive. After my son was diagnosed and as he got older, I of course saw the similarities between him and Mr. Spock, Data, and Seven of Nine, but it never occurred to me just how much more there could be found in the Star Trek Universe. It was fun and eye-opening to look at Star Trek again though the scope of autism.

It took me a little while to begin reading it, because….. “reading glasses”, but once I picked it up, I was pleasantly surprised at how quickly I was able to finish it – glasses or not.

It was an easy read. It was not clinical or technical. It does not read like a “how to”, or an instruction manual.  There is no advice or counsel as to what you should or should not be doing. It does not preach.

What the book does, is point out the regular every day issues that our children deal with through Star Trek episodes. It provides thoughts and tips for discussion as a means of assisting our children though these issues.  It is a collection of episodes and specific scenarios from those episodes that are relevant to our day-to-day life. These situations and the manner in which they are resolved are broken down in a clear and simple manner to promote thought, discussion and understanding about anxiety, social situations, problem solving and much more. Once you read this book and begin looking at the episodes in this way, this method could then be applied to other episodes, other situations in the same episodes and even different television shows, movies or books.

Being a Star Trek fan, it was actually fun reading over all of these episodes and looking at them in this light.

If you are a Star Trek fan with some connection to autism; this book is definitely for you.

If you are a Star Trek fan who may want to learn a little bit about autism while reading synopses of episodes from most of the Star Trek television series; this book is also for you.

If you are a Star Trek fan and the parent of a neurotypical child; this book can also be helpful as many of the issues covered such as bullying, acceptance or fitting in and peer pressure are not specific to autism.

If you are not a Star Trek fan; first I will ask ……..

WHY?

Next I will say that I do not think it matters. I have to admit that there were a few episodes that I did not remember and it did not take anything away from the point of the book. To the Star Trek novice or the person who has no knowledge of the  franchise other than the name, I believe this book would be just as interesting and informative to read as a collection of short story synopses that begin with a problem, end with a solution and the break down of the steps the characters took to get to that solution.

I found “To Explore Strange New Worlds – Understanding Autism through a Star Trek Lens” a fun, informative and quite fascinating romp through the Star Trek Universe and the autism spectrum. I highly recommend it!

 

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To Explore Strange New Worlds: Understanding Autism Through A Star Trek Lens – By Elizabeth W. Barnes (click image to purchase)

 

 

 

 

 

 

 

 

 

 

Let DC Be DC

Last week, while waiting for his transport to arrive, DC decided that he wanted to wear a stick-on mustache. It was Monday and as Monday mornings have been difficult for DC lately,  I let him wear it. The mustache was keeping his mind off the rising anxiety he was experiencing, so there would be no argument from me.

Much like his precious band-aides, there always seems to be a pretty good supply of stick-on mustaches on hand. He loves them. They make him happy.

As I have mentioned before:

Back in the “Olden Days”,  we were taught that our goal was to try to normalize (the doctor’s, specialist’s and school system’s word, not mine) our children – we did not know any better. In our minds, we were trying to overcome autism and teach our children to behave the way we thought the world wanted them to behave. It took me a while and I had to figure a lot of this on my own (because…. no internet).  I had to get over the idea that had been drilled into our heads as parents, that we had to make our children behave like every other child. I had to figure out for myself and understand that he was not going to fit into anyone else’s idea of ‘normal’ and that I should not be trying to make him fit that mold. I should be making it easier for him to manage his anxiety so he would be able to navigate the world outside of our door.

DC is 26. He is out of school. He does not have to adhere to a dress code at his job/program. He does not have to wear a uniform. He seems to understand the difference between working his volunteer job at the theater where there is a dress code/uniform, his Winter Guard activity where there is also a uniform, and his day job/program where there is not. He has never asked or tried to, wear one of his mustaches or plaster his arms with band-aides when he goes to either of those places.

I very rarely intervene in his clothing choices unless they are weather related or there is a safety issue. He works in the greenhouse during the summer months at his job/program so fleece sweat pants are not THE best idea. When he was younger, he always wore a purple cape. Because I have a thing about him wearing anything around his neck for fear of whatever it is getting stuck in something and choking him, I would only let him wear the cape around the house.

DC also does not like to wear anything around his neck and to be honest, I am not a fan of him having anything around his neck either. When I was a kid (an infant really), I saw Isadora, a movie starring Vanessa Redgrave about Isadora Duncan and that was the end of scarfs or anything around the neck for me – Yes, it IS hard to be me. 

In case you might be wondering; he has only ever worn a scarf once and it was on Halloween.

That afternoon when DC made his daily call to me from the car on his way home from his program, he went “off script” and said, “I’m sorry Mom.”

Now, unless we had a rough morning or something has been on his mind all day, an apology on the phone does not necessarily mean that he is apologizing to me. Usually it means that something happened at work (or wherever he had been) but he cannot communicate it to me.

Me: What are you sorry about?

DC: Took off the mustache.

Me: Why are you sorry for taking the mustache off? 

DC: Threw the mustache away. I’m sorry for mustache.

Me: Did someone tell you to take the mustache off?

DC: Threw it in the garbage.

Me: Did someone tell you to take it off?

DC: Yes

Me: Who told you to take it off?

DC: Threw it in the garbage in the Dog Bones Room (the department where he works during the winter months)

Me: But did someone tell you that you could not wear it?

DC: Yes.

Me: Who told you that?

DC: *Donna. I’m sorry Mom.

At this point I was beginning to get my back up because there was absolutely no reason for someone to tell him to take it off.

Me: You do not have to be sorry.

DC: Threw it in the garbage.

Me: That’s okay; we have more.

It went on like this for a while, but what I got out of the conversation was that he was told he could not wear it.

When I got home – I checked his “Talk Book”. There was a note from *Donna:

“I liked DC’s mustache but he must have thrown it in the garbage. I asked DC where it was and he said ‘garbage’. It’s too bad. I liked it” ~ *Donna

His apology to me was all about *Donna asking why he threw it in the garbage. He was apologizing to her because she asked where it went and he thought he had done something wrong by throwing it away.  At times when he wears his band-aids or a mustache, he is happy for the attention. Other times, if they are mentioned in any way, he takes them off. I think there are just days when he wears them because they make him happy and other days when he needs them as a calming mechanism and he does not want to talk about it. He might, at those times feel a little bit of embarrassment as well.

He wore a mustache again a few days later with no issue, and trust me – he needed it that day.

The points that I want to make here are:

If I did not receive the note in the book, I would not have been able to figure out what was going on. He did offer more information that he usually does, but it was not expressed in a way that gave me the true picture. Verbal and Communication are two different things. When I say (over and over again) that I worry because he cannot always tell me when something is wrong; this is what I mean. There are things that I have never been able to figure out.

You can see why his inability to communicate what is really happening worries me to no end.

The second point would be that we just need to stop looking at these quirks as something we have to fix or something to be made fun of.

If he needs a mustache, band-aids, a Christmas shirt in July, or a Halloween shirt in February – then that is what he needs.

Let DC be DC.

 

 

 

 

 

 

What my nightmares are made of…

This week’s Finish The Sentence Friday prompt is: “I’m really afraid that/of…”

If you have been around here for any length of time, you know all too well what my nightmares are made of.

Dying, of course. I am sure that most people could say that they are afraid of dying, but when you have a child with autism, fearing your own death takes a whole new turn.

When DC was young, my greatest fear, being a single mother (and before that, having a husband that worked nights) was something happening to me and worrying about just how long it would be before someone/anyone realized that DC was alone.

And then he grew up….

As I have written about this subject many times, I am just going to give you excerpts of some of the previous posts that were written about this subject.. He is 26 (almost 27) now.

*****

DC is 24 years old. He is a happy guy.  He has a good life. He is the joy of my life. But even with all that he has accomplished the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings. Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again, he doesn’t have brothers or sisters. He will probably have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers. This is devastating to me. It is what keeps me awake at night.  It breaks my heart already.

He deserves to live the rest his life just as happily as he lives now; and that is the one thing I cannot promise him.

From: Insert Colorful Metaphor

*****

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, it becomes a whole different ball game.

Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them?  How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

From: Dear Abby; Feeling Chastised in New England

*****

If this is not enough to worry about, there is the other issue of him really not understanding death:

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On the way home from my mother’s house the night my step-father passed away, I mentioned to Doug that I still was not really sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it is so important to me that DC understands. Why couldn’t I just let him believe what he believes, the way he believes it and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”

  From: Understanding Death it not like a Disney Movie

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This has been a Finish the Sentence Friday Post. This week’s prompt: “I’m really afraid that/of…”

Finish The Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular prompt (different formats each week of the month). Please visit Kristi or Kenya to read more submissions on “I’m really afraid that/of…”