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!

 

Click Image To Purchase

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:

*******

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

****

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…”

Everything is Related – It’s a Celebration

 

As you may or may not know, over and above his regular day job/program, DC also volunteers at a local theater. He has been there for four and a half years now. His best friend, BB just recently started volunteering there as well. 

If DC could choose his dream job, it would be one (or all) of three things; Working in a Bookstore, Working at Disney (or anything having to do with Disney), Working at a Theater (plays and musicals) – 4 Years ago today, DC and his Job Coach headed off to his first day of volunteer work at the theater. My Broadway Baby got his wish…. ~ From “His Dream Job” March 2017

 As one might guess, DC is more interested in working the Broadway Productions, but the volunteers are required to mix it up and work a few of each type of production held there. 

Some of these are difficult (or boring) for DC so I always try to come up with something to relate whatever show he is working to something he enjoys – which is usually something that begins with Disney, but not always.

A while back he was scheduled to work “The Phantom of the Opera”. Now don’t get me wrong, DC is the ultimate fan of musicals, but this is more opera than musical. To try to pump up the enthusiasm and interest, I told him that I saw the Phantom of the Opera many years ago in New York City (his favorite place) on Broadway (his second favorite place) when it first opened. 

Me: Do you know who played the Phantom when I saw it? It was the same person who played Cornelius in a movie that you really love.

DC: Walter Matthau (not pronounced quite that way but I knew who he meant)

Me: No, Michael Crawford. He played Cornelius and Walter Matthau was his boss in the store (Hello Dolly).

(Seriously, you have to give DC props for knowing Walter Matthau and knowing which musical just from the name Cornelius)

That was the best I could come up with…

When all of the attendees are seated and the show gets going (pending a 10-minute hold on the door, of course) the volunteers are allowed to go in and watch a good portion of the show. For this particular show, DC and Mrs. H stayed out in the lobby due to the production’s use of strobe lights.

There are screens in the lobby though. Mrs. H reported that as soon as the operatic singing began, DC in his not so “indoor voice” announced – This is ‘ted-a-bull’!

I suppose it was a very good thing that they were not inside the theater at the time.

Moving on to the “celebration”…..

Many years ago, when I got married, I gave the DJ a list of three songs that he was not allowed to play, even if a guest requested them. They were banned – BANNED!

The first was Kool and the Gang’s “Celebration”.

There was not any sort of affair that one could attend without ”Celebration” being the first song that was played, as if it was an original idea and no one had ever thought of it before. 

“A Party? A Celebration? Oh, we should play Kool and the Gang! We are so clever!”

Nothing against Kool and the Gang, I do like many of their other songs, but I am not a fan of this particular song.

Then, like clockwork, the very next musical offering 99.99% of the time would be, Sister Sledge, “We are family”.

No, no no no, just no.

The third was the chicken dance, because…….

Chicken Dance.

(Little did I know that one of DC’s early intervention teachers, Mrs. T (you know who you are) would teach him the chicken dance and he’d be doing it ever since)

Flash Forward to 2012 when DC’s Winter Guard Team chose – you guessed it – “Celebration” as their performance song for that season.

I mentioned my banned wedding song list to TonyaSalli’s mother one night at Winter Guard practice after listening to Celebration in parts and in its entirety all practice long. She laughed so loudly that it got the attention of the director who also had a good chuckle over the torture I was experiencing. 🙂

DC loves Winter Guard but he never really gets attached to any of the songs they have used over the years. If they used something like “A Dream is a Wish Your Heart Makes”, “Beauty and the Beast”, “Seventy-Six Trombones”, or “The Trolley Song” – that would be a different story. Being a Disney/Broadway/Musical type of a guy, he is not always interested in the popular/top 40 music they use. He does like the songs and knows them when he hears them later, but that’s about it. I thought this would work in my favor with “Celebration”, but noooooooo….

He will randomly search for it on you-tube and listen to it over and over, still. to. this. day which I begrudgingly admit might actually come in handy as the next show that DC is scheduled to work at the theater is none other than – Kool and the Gang…

No prep necessary. I simply reminded him of his beloved “Celebration” and he is ready and seems to be looking forward to this show.

So, I guess you can say that Kool and the Gang came through for me in the end because, Everything is Related.

DC’s Number One Moment of 2017 #SPNNJ #KimRhodes #Supernatural

It is that time of year again (how fast did 2017 speed on by?) to re-post my top 5 most popular posts of the year from this blog site.  This was probably one of, if not the best day of the year in DC-land (maybe even better than Halloween – shocking, I know), so it is fitting that it came in at number one. I hope to be able to bring him to another someday. I love to see him that happy.

Happy 2018 to you all and as always, thank you for your support!

(#’s 2, 3, 4 and 5, are linked at the bottom of this post)

Let’s Talk About Kim Rhodes #SPNNJ – September 2017

For the few people who may not have heard, we attended the Supernatural NJ Con this past weekend. Because I have learned a “few” things over the years; specifically that I would not hear about anything else for months ahead of time if DC knew that Kim Rhodes was scheduled to be there – I did not mention it to him. But DC being DC somehow figured it out (I still do not know how) and trust me, I have heard about “Zack and Cody’s Mom” daily since July.

You can read about it here: Zack and Cody’s Mom!

and here:

and here:

 

Believe me, these….just the tip of the iceberg!

We stayed in New Jersey within walking distance of the convention center. We spent Friday in New York City (DC’s favorite place) and Saturday was spent at the convention center (Sunday, back to NYC – It was HOT…just sayin’!)

Not wanting to make the day uncontrollably long for DC, we arrived at the convention center somewhere around 12/1230. Knowing that DC expects regularly scheduled meals and remembering NY ComicCon where we sat on the floor with pretzels because we could not get near anything else – I started the lunch explanations early; we would stop somewhere on the way to the convention center and have “second breakfast” and we should be able to get some snacks in the convention center here and there during the day. Oddly enough, I only had to go over that 4 or 5 times before he stopped stressing out about not having a regulation lunch.

Our scheduled autograph session with Kim Rhodes was not until 3pm so we looked around a bit.

We stopped at the RandomActs.org table and made a donation. DC, being his charming self had trouble deciding between a button or a temporary tattoo all the while eyeing the teddy bear that was sitting on the table. He asked me for the bear. I told him that it was just for decoration (as I believe that it was). After almost finally deciding on the tattoo, one of the women whispered “Does he want a bear?” I told her that he would love to have one and asked how much they wanted for it.

She said that he had made her day and she wanted him to have one. They even put a little pin on the bear for him. He carried that bear around with him all. day. long.

Not very long after that, Ruth Connell came out to her autograph table. I am not sure that DC knew who she was but the red hair had him intrigued. She had it all pulled up so there was no need for my “Do Not Touch Her Hair” speech/warnings.

Finally it was time to get in line for Kim Rhodes. I had purchased a ticket for the autograph session and the photo op months before because I was not taking any chances of him not getting to see her. Because I never had to purchase a ticket for an autograph session before, (there are just usually photos on the table, you pick one, pay cash and they sign) I did not realize that we had to have something for her to sign already. We were second in line so I yelled for “poor” Doug and told him he had to hurry up and go to the table out in the vendor area and buy a picture. She was not at the table yet and Doug having no idea who any of these people at the convention were went up an octave or so and screeched:  “How can I buy a picture if I don’t know what she looks like?” I hadn’t thought of that and I just started laughing. Doug is a pretty mellow guy but when he does get exasperated with me (very seldom) and moves into this weird high-pitched voice, I just cannot help but laugh – a lot. The woman behind us (getting a kick out of the whole exchange) showed Doug the picture she had and off he went. Before he reached the vendor area, he turned around and started coming back…. I turned to the woman and said “Watch. He is going to give me that schedule in his hand and tell me to use that.”

She laughed.

He did.

She laughed harder.

But finally he did go back out to buy a proper pic. We just let one person at a time go ahead of us until he came back.

Finally, photo in hand – the big moment.

DC was beyond excited! There are times when he gets so overly excited about something that by the time he gets there he flames right out, but he didn’t. I asked him who this was and he answered “Zack and Cody’s mother!” with that little screech that he does when he gets that excited.

They talked about his bear. She signed his picture. She said “I am not supposed to do this but I will” and wrote “You are awesome!” On his picture. I am guessing that in order to keep the lines moving the coordinators do not want the guests to spend too much time writing anything other than their signature?

We told her that we’d see her in an hour for a photo. DC was even more excited when she said that she is allowed to give hugs at the photo ops. DC misunderstood and thought he was getting a hug right there. When I told him that she was not allowed to hug at the table he would get one at the photo op, she decided to give him a big hug at the table anyway. A practice hug, they called it.

You CANNOT IMAGINE and I can not put into words just how over the top thrilled he was! That made his day.

The photo op came up quickly and as soon as he saw her (from the line) the squealing began. He made it to the front and she greeted him as if she was so excited to see him. Now, I know that they are supposed to to that, but that little extra attention she gave him just made the whole day worth it. I do not know if she really remembered him or not (he still had the bear, so I am guessing she really may have). It did not matter, DC believed that she did and that is all that mattered.

 

You will never find a happier guy!

I did not purchase tickets for Sunday because they were too expensive (Sam, Dean and John, their “father” were appearing on Sunday only) but I decided to buy tickets to the concert on Saturday night, thinking that if they were flying in for Sunday appearances, maybe just maybe one or all of them would fly in on Saturday night and make an appearance at the concert.

Had I known when I bought the tickets that the doors would not even open until 10Pm, I would have never done it. I was worried that DC was not going to make it that long.

As it turned out, I am glad that I did not know and glad that I got the tickets.

In an effort to get DC in to the spirit of the thing, I told him that “sometimes” Zack and Cody’s mother, who DC now refers to as  “Kim”,  sang at these concerts. I knew that to be usually true, but I also knew that I was taking a big risk in telling him so.

We thought we were already losing him while waiting in line but we got him to hold on until we made it inside and sat down. By just a few songs in, he was showing signs of being “done” and no longer paying any attention. He did not notice that she had just come out to the stage.

“DC, look who it is!”

He jumped up out of his seat when he realized. He kept pointing at her as if I did not know she was there.

He danced and clapped for the rest of the concert.

At one point, she jumped off the stage and ran through the audience, DC was in the aisle and no, I was not ready with my camera. She ran right by him. (He was thrilled just to see her up close again). But then she stopped, turned around and started back toward him waving. He LOVED IT! She couldn’t come all of the way back to him, but he knew that she noticed him and the wave was for him and him only!

Just that little bit of extra attention made all the difference to DC.

Kim Rhodes has been added to my list of heroes (or as DC would say “Here- eee- Ohs”)

*****

As for the rest…. DC and I had a good time (Doug not so much)

I have only ever gotten to sit in on two panels/Q&A’s before – Once Upon a Time at NYComiccon where DC fell asleep on me (and when I say “on” me, I mean that literally) and the “Revamping of Fairy Tales for TV Trend” discussion at Shore Leave, where DC not only fell asleep on me but did it in the front row.

We actually got to see the Costume Contest (I apologize for the photo quality; I did not think to bring my real camera)

The Mark Sheppard Q&A:

 

 

and The Misha Collins Q&A:

DC did not fall asleep during any of them (I cannot say the same for Doug)

The rest of the concert was fun (even Doug liked it). I was correct. One of the Sunday only guests, Jensen Ackles made an appearance at the Saturday Night Special.

(A very short clip)

 

Another favorite part of the day happened while standing in line for DC to have his picture taken with Mark Sheppard and Misha Collins. The woman in front of me, carrying a binder; obviously much more organized about this than I was, turned to me and said, “I am 47 years old and I have saved up for 12 years to do this.” – She bought the whole weekend Gold package (Knowing how expensive our single day was, I can see how one would have to save for 12 years.), but if she was going to get to do this, she was going to do it right! We chatted a bit while in line and it seemed as if she was having a great time and it was all worth it! I am glad. Sometimes when you look forward to something for such a long time, you end up being disappointed by the reality of it.

This did not seem to be the case for her and it certainly was not the case for DC.

It made me smile.

****

Update: Just when you think she could not be any more wonderful:

 

 

 

 

*****

Post #5 – 2017:

Look at my daughter and tell me she is not worth keeping alive #Medicaid (A Partnered Post)

We have heard (and read) about how the people who may lose Medicaid coverage from the proposed cuts, “can just go out and get a job” with an employer that provides medical coverage….

For those of us with disabled children, “getting a job” is not a solution. Many of us work and have medical coverage through our employers. (Continue)

 

 

Post #4 – 2017

Autism; In “The Old Days” – Diagnosis via St. Elsewhere – February 2017

As you may or may not know, DC is 25 (almost 26 – gulp) years old. He was finally and officially diagnosed with Autism when he was 5. I knew there was “something” by the time he was a year old and looking back, probably before that. I originally thought that he could not hear (Continue)

 

 

 

 

 

Post #3 – 2017:

He was right next to me – October 2017

It happened a few weeks ago…..

DC wanted to make pizza. “Making” pizza means opening a ready-made crust, adding sauce, ‘sparkling’ cheese (Veggie grated cheese), garlic powder (because he is obsessed with garlic) and pepperoni.

We do this often and DC helps with quite a lot of it. (Continue)

 Post #2 – 2017:

Revisiting “Feeling Chastised” – April 2017

The following was written a few years back. It was written more about the discourse  within the autism community and not about autism awareness or acceptance. In actuality, I suppose it could be looked at as a piece supporting  the awareness, acceptance and respecting the differences in the ways parents view autism. There is far too much hostility. (Continue)

Just for good measure and because it is one of MY favorites….

Post #1 – Let’s Talk about Kim Rhodes (in case you missed that)

********

Post #1 from last year – 2016 – one of my favorites….

Mom, do you love meeee?” – June 2016

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself. (Continue)

 

Happy New Year!

***

For the Top 5 posts  on my other site (((spoiler alert – Kim Rhodes made that list as well))) – please visit Take Another Step – Life with DC  

Traditions New

 

Three years ago we left for vacation early on Christmas morning.

Two years ago was the very first time in my life I believe, that I did not have to go anywhere on Christmas Day.

Back, many years ago when I was single and working in a convalescent home, I would always volunteer to work on Christmas Day firstly because I absolutely LOVED the clients which turned out to be a big reason why I decided going to school for nursing would not be for me – I just got FAR too attached to the patients/clients.  Secondly because I could avoid the whole Christmas dinner with relatives and just show up later, after work.

Then I became a mother and still, staying home never seemed to be an option. DC had little time to “play” (I use the word, play loosely) or use his gifts before we had to leave and go somewhere for dinner.

We go to my mother’s on Christmas Eve, a tradition she started many years ago for the same reasons – too much to do on Christmas Day. He gets his Grandma fix. We have dinner. We open presents. He gets to see his “Fam-ill-lee”, which he loves. So he is not missing out on any of the regular Christmas festivities.

I believe it may have been the vacation three years ago that finally allowed us to break the Christmas Day tradition for the following year and, this year became the second Christmas that we just stayed home. DC was happy. I was happy. Doug who is not really a “holiday guy” and is really only in it for the food, was also happy.

DC had time to look at and play with all of his loot. He had time to just “chill out” (his latest phrase) and like the year before, we went out for Chinese food at night for dinner. We are lucky that there happens to be a pretty good sit-down Chinese restaurant about 5 minutes away, in the next town.

Chinese Food Is a Newer Development in DC-land: We all know that DC is a picky eater. There are only a handful of items he will eat in a restaurant. You see, eating out is supposed to be fun, so yes, he will eat a salad at home, but don’t ask him to eat one in a restaurant. He will eat vegetables at home, but vegetables are not restaurant foods, so just forget it. He will eat pasta at home (another newer development) but he is not happy about it and will NEVER eat it anywhere else – correction: he did twice but both times he was at a party and there were no other options.

Restaurant food is:

Cheeseburger and french fries

Wings

Pizza

Garlic Bread

Chicken Tenders

BREAD

His limited menu, limits our dining out choices, especially on Christmas night when almost all one can find open are Chinese restaurants.

About a year ago, we ordered takeout and the only thing that DC would eat on a Chinese food menu was the wings, so that is what he ordered. I ordered the sweet and sour shrimp. DC saw it. It was battered and fried, so he wanted to try it. I warned him that there was shrimp inside, but it was battered and fried so he was not going to pass it up.

He liked it.

He came back for more.

We determined that this was not just a fluke when the next time we ordered takeout he ordered the wings and again took half of my ‘Sweet Sire Shimp‘.

So now our new Christmas tradition of Chinese food is something he looks forward to and not something we have to research and figure out what we can talk him into.

We went…..

There was no heat….

It was okay though….

We, along with the 3 other tables of people, ate with our coats on…

DC, in his short sleeve shirt (we just recently transitioned from his fall coat to his heavy winter coat, so the transition from short to long sleeves will have to wait a bit) did not want to wear his coat. One does not wear a coat while eating in a restaurant.

Normally I would try to avoid this argument, but IT WAS TOO COLD not to make him wear it.

He got over it when I told him he could wear it over his shoulders like a cape.

 

We ordered a Pu-Pu Platter, which he thought hilarious.

He ate the wings.

We had the rest.

He ordered his “Sweet Sire Shimp

 

Let’s just say, normally when DC is done eating – and he eats very fast – he is done. Keeping him occupied while Doug and I finish is not always easy. He has his book, but that only lasts so long.

Believe it or not, we stayed, I am guessing close to an hour after he was finished talking to the people in the booth behind us – which is what one does in an almost completely empty restaurant. He was totally included in the conversation and seemed to be enjoying it. He never once asked to leave.

They were visiting from the warmth of Arizona and staying in a hotel so unlike us who planned to be there,  I imagine that this restaurant was one of the very few options open for them.

We had a good time and there were hugs all around when it was time to leave.

It just goes to show that you do not always have to do what you have always done, just because you have always done it or are expected to. You can make your own holiday traditions and have a good time doing it.

 

Merry Christmas and Happy New Year from DC, Me and Doug too!

 

 

 

 

 

 

 

 

 

We are allowed to Vent sometimes…

I wrote this post a few months back but due to the string of crabby posts I had published around that same time, I decided to sit on it for awhile…..

Just a few days ago I was involved in a couple of discussions that were not about this topic exactly,  but sort of around the same areas of frustration, I remembered this post and have updated it to include the other topics of discussion….

I am also realizing that this is what is becoming my annual, before the holidays crabby post.

I do want to be very clear that I am in no way complaining about my child. I love him more than life itself and there is nothing I would not do for him. This has little or nothing to do with him directly, just the people around us (all of us).

(updated portions are in italic)


I was reading a face book status recently written by the mother of an autistic adult son. The post was about a certain event that her son was planning for. He was planning out everything everyone was going to do for him and give him, while never giving a thought about doing one thing for his mother (the poster).

She was venting…. just venting.

Now… parents of Neurotypical children seem to be allowed to, and quite often do vent, and I have read much worse from some of those parents. For some reason, we are not.

When we do, one or more of these things happens:

1. we get a truckload of advice

2. we are made to feel as if we should somehow be above complaining

or

3. we have people feeling the need to explain autism to us.

The comments she was receiving came mostly from group number 3 and I really started to feel bad for her.

“You know he has autism”

“That’s what autism is like”

“Being self-centered can be a trait in autistics”

News flash….. we know this. Just because we know this does not mean we do not still have our feelings hurt from time to time. We are still human.

DC is a pretty lovable guy and I do know that he loves me. Not being from a very affectionate family, except when we were forced to hug and kiss every single person who came to visit or we went to visit (children should never be forced to hug and/or kiss ANYONE if they are not comfortable doing so – my opinion only), I am sure I over-compensated for that with DC and some of his “cuddliness” is learned behavior – not all, but some. I also know that in his mind, everything is about him. I am not complaining at all, I know this. This does not mean that I don’t get my feelings hurt when his Dad shows up and it’s like the heavens have opened. Or when I know he is only excited about my birthday (that comes right before his) because HE is going to get to go out to dinner.

Sure, there are times when he goes out of his way to do something nice for me out of the blue, like bringing me coffee (sometimes out of the sink, but he tries) but the reality is that yes, he knows he is doing something nice, but he also knows he is going to be praised for it. He does it for the praise and I am his biggest enabler in that area (She says after buying and just finishing wrapping a gift to myself from DC, so he can be excited and praised for giving me a gift on Christmas. Do not worry, he is a man and practiced at the art of taking credit for anything given or sent with his name attached, whether he knows about it or not.). Being raised in negativity, I do tend to go out of my way to praise him for every little thing and I do love to see him happy. I am thankful that he does want to do nice things for me and others, no matter the motivation behind it. After all of this time and understanding everything I have learned and understand about him over these past 26 years, I still can have my feelings hurt. I know it is not his fault and I am sure that the face book status poster knows that as well, but sometimes we just need to vent – just like everyone else…

Sometimes we get our feelings hurt too – just like everyone else and there should be no shame or guilt in that…

****

I was recently involved in an “All kids do that” discussion. “All kids do that” is a pet peeve of many parents of autistic children and adults. It tells us that you believe we are exaggerating their behaviors or difficulties or worse….. feeding into them or creating them.

My reply: (edited because many of my comments written on my phone are strewn with typos and could be said a bit better if in front of a computer with time to think)

I think that much of the problem comes from it being very difficult to explain our children to people (especially when they are not listening due to their own preconceived notions). Saying that he can’t stay alone or he is impulsive does not give the full/true picture. Because we cannot stand there and give 1000 examples to make them understand – they just will not get it. This is a big reason why I continued to blog. Lots of Stories to give a snapshot of how his mind works. Unfortunately the people who might benefit from understanding how his mind works probably do not read Autism blogs. Believe it or not, I get the same response “all kids do that” and I have to remind them that he is 26 and all kids or adults do not do that.

(Please listen to Val’s video that came out of the same conversation: THE BLAME GAME – WHY WE BLAME OURSELVES BUT YOU SHOULDN’T (VIDEO) )

****

Coming in on the heels of  “All kids do that” for me is “All parents have to do that”

I have been doing this parenting thing a long time now and I have come to realize that some events and gatherings are just not worth it. Most times, DC really could not care less if we go or not. There are a few exceptions to this and we do always attend those gatherings. 

When I try to explain that these events are not enjoyable for me (and as I said, he does not care if we go or not) because I have to watch him every minute – not because he will do something horrible but because he is not always aware of his surroundings and I have to make sure he does not bulldoze over a smaller person or child. He gets excited and wants to hug everyone. He does know to ask permission first, but there are times when he just gets too excited to remember to ask. Some people do not like to be hugged. He is a big guy and a bear hug from him can make you feel as if you are being crushed. I have to watch that he does not stick his hands in the food and a hundred other things.

“All parents have to do that”

Really? 

Do all parents get relegated to the basement when it is announced that all of the children have to go downstairs? The other children’s parents could let their children play in the basement without them, but I could not do that. I still could not do that today.

After 2 1/2 hours (I know this due to the number of times we watched the Winnie the Pooh video) in the basement while all of the adults were either upstairs or outside playing football – I had to wonder why we felt we had to attend. I could have been watching Winnie the Pooh in the comfort of my own home. How was this enjoyable?

Do all parents have to make sure their 26 year old child is in their line of sight at all times?

Do all parents have to bring extra gifts for their child to open so while everyone else is opening “just what I wanted” gifts, he does not end up with just an Autism Awareness Bag (just a bag – a shopping bag) or a mini-sharpie on a key chain or one of those little lunch boxes that he knows come filled with candy, without the candy? 

Your child tries numerous times to say hello to a child on the other side of the room. She just stares at him as if she is terrified, and her father, instead of asking her to answer him, puts his arm around her as if he was protecting her from this horribly scary person who is saying hello from across the room. Do all parents have to lie to their child by telling him she answered but he just did not hear her, so he won’t have his feeling hurt?

Don’t get me wrong; DC is not sheltered. He does many things and goes many places, but I have learned over the years that these types of gatherings are just not fun for anyone.

While we are on the subject:

If your child is an adult…..

Do you have to look for a babysitter if or when you want to actually go out without your child? I do.

Can you just run to the store whenever you need to? I can’t. (I could be there and back by the time I round him up and get him out of the house)

Can you just relax at the pool like everyone else while your adult child swims? I can’t.

Do you have to watch your child while he eats so he does not choke? I do.

Do you have to stand outside the rest room while your child is using it because 1. you don’t know who else might be in there and 2. in case he has a seizure? I do.

Again, I am in no way complaining about my child or our life, but hearing “all parents have to do that” just sends me over the edge. All parents do have to do that…. for a time, not forever. I do not have a problem doing this forever, I just do not want to have to explain myself to anyone anymore.

So, yes by all means invite us. If we can make it, we certainly will. If we do attend, please refrain from the advice, the guilt or the lectures about everything we are doing wrong and how you can do it better.

If we decline; “all kids do that” or “all parents have to do that” is not the road to take to try to change our mind.

Wishing you all a Happy and Anxiety Free Holiday.

 

 

 

 

 

 

 

 

 

Holiday Reruns – Lessons from Santa

train s

December, is the time for reruns. I love reruns, especially holiday reruns. The following is a post from December 2014 about the important lesson DC and BB learned while riding the Santa Train.

******

Lessons learned on the “Santa Train” – 2014

train

(Code word of the day: “Supplement”)

As parents, we all come to the ‘Questioning the Existence of Santa’ crossroad sooner or later. It is a sad milestone. It begins to be difficult for them to understand and believe in something that they can not see. Sure we see Santa and his helpers quite often during the months before Christmas, but never during his Christmas Eve deliveries. This causes our children to question his existence. Why can’t they see him? Why must they be asleep? As I explained to DC, Santa has a job to do. If he took the time to stop and visit with the children in every house he delivered gifts to, even with his magic, he would never be able to finish in time to get back to the North Pole to celebrate Christmas with Mrs. Claus and the elves.

It took DC many years to understand Santa. He knew he would receive gifts, but the whole idea of Santa was not something that could be understood easily. His not understanding, did not stop Santa from leaving him gifts.

When it finally clicked and he did finally get it, he was all in! Now that he does understand, he would never and will never question his existence.

The one problem was, DC ‘s Christmas requests have always been small (in size) gifts. Santa could very well bring him 20 DVD’s, but the pile of gifts (visually) would be very small. DC doesn’t understand cost/size vs. number of gifts. He expects a very big pile of gifts. So, over the years I would always “supplement” the Santa pile with gifts of my own.

Being a single mother for more than 20 years now, I am the sole “supplement-or” (yes, I know that is not a word) of DC’s gifts. Which means I not only “add” to what Santa brings just to make the pile look more exciting for DC, but I also, of course, have to buy additional gifts from ‘Mom’. This gets to be a little bit overwhelming for me, not only in cost, but in trying to come up with other gifts ideas to make that “pile” he needs to see.

Now that DC is an adult, and the items he asks for are smaller still, it is becoming harder and harder to “supplement” Santa’s  gifts, to make that Christmas gift pile”,  I did finally have to confess to him that some parents, with adult children, have to help Santa out a little bit. Santa has so many little children to deliver packages to on Christmas Eve, that it is hard for him to get to everyone. So now that the is an adult, Santa only delivers his stocking and the rest of the gifts in his pile are from Mom. Santa always did a pretty good job with his stocking, by the way. He was fine with this. As long as Santa is coming, even just to bring a stocking, all is well.

Coincidentally, the morning I read the post from Autism-Mom, was the day that DC, his best friend, BB, BB’s Dad, Doug and I were going to take a ride on the Santa train.

Earlier this week, BB had just been told by one of his other friends that he was too old and should not still believe in Santa. He was upset by this, but BB knew better. He knew he was correct in believing.

Both DC and BB were very excited about riding the train. They always have the best time when they are together anyway.

stst2

Santa boarded the train a few minutes into our trip. He received more hugs that he expected, I imagine.

BB mentioned to Santa, what his friend had said to him that week. Santa took a little bit of time to talk about it with BB and DC.

(This video below is very poor quality – it was dark on the Santa train, but you can hear some the conversation and Santa’s advice to BB)

“Those who don’t believe, well they are the one’s that are missing out” ~ Santa Claus

So there you have it, straight from Santa’s mouth. BB felt much better. He knew it before but now he really knows that he was right all along…

 

 

 

 

 

 

 

 

Holiday Reruns – In Search of… the Christmas Spirit

 

From December 2016 – In an attempt to muster up some Christmas Spirit, we decided to try to find and visit a few “Christmassy” towns and/or events. What I was really looking for was one of those little towns that one sees over and over again while watching far too many Hallmark Christmas movies (they start running in October, you know).

I wanted to find one of those places where the hotel room is decorated for Christmas. Where you can walk out onto the overly decorated street to find carolers singing, a hot chocolate/cookie stand, Christmas parades and Santa out on the town green. I don’t really care all that much for hot chocolate, but that is what I want. Where can I find a place like that?

Although we did not find the “Hallmark Village”, we did visit a few interesting and yes, “Chrissmassy” places.

Our search will be continued this season… so look out Hallmark, here we come.

In the meantime, let’s revisit last year’s search.

 

#TravelingWithDC – Christmas Quick Trips

DC loves Christmas as much as he loves Halloween.

He loves getting to see Santa, but even more than Santa, he LOVES the rare occasions when he gets to see Mrs. Claus.

His Mrs. Claus cup runneth over this year…..

Me, not having the happiest year this year, needed a boost and set out looking for some Christmas Spirit. Although, I did not really find it – DC sure did.
It was enough for me just seeing him enjoying himself so much and all of the Mrs. Claus sightings certainly added to his excitement about Christmas coming.

Below are a few Facebook posts along with some photos of our journeys this Christmas season (and maybe a little bit before the season)

Our first Christmas-themed trip was accidental. We decided to visit the Yankee Candle Village in South Deerfield, MA. We did not know that we would find Christmas, but find it we did.

Trees, lights and snow.

There was singing in the snow……

And…. the first Mrs. Claus sighting of the year!
Thinking he was going to be disappointed that Santa was not there – she apologized and told him that Santa was busy at the factory. Little did she know that Mrs. Claus beats Santa anytime in DC’s book.

There was lots to see and still enough time to take in a show – a quick one.

Thanksgiving was spent in the Essex, CT area but Christmas was already all around..

No trip is ever complete without a book store visit.

December hit and even after a full month of sappy Hallmark Christmas movies under my belt, the spirit was eluding me. So we took a trip to Mystic, CT for the Christmas Fair.

DC’s first meeting with Santa of the season. Santa was unprepared for the big hug he received!

Then he spotted Mrs. Claus! She got an even bigger hug! The icing on the cake!

There were elves, carolers and llamas wandering about. There was music, magic

and an Alice In Wonderland Tea Shop and Store.

There was of course a visit to a book store but I forgot to take a photo.

Treats; we can not forget the treats with hot chocolate.

DC, of course was full of Christmas Spirit by now. I, on the other hand was not…. but it was still enjoyable watching him get so excited.

We planned a weekend in Sturbridge Village the weekend before Christmas, but there was a big storm. Luckily we were able to cancel and re-book for the following weekend. This would mean we would be away on Christmas Eve, Eve and Christmas Eve Day. We would have to rush home for Christmas Eve night at my mother’s house. It would be a little bit rushed, but we decided to book it.

I am glad we did. DC had the best time!

It was just beginning to get crowded when we arrived so one of the workers told us that we would have better luck if we followed the map backwards and went to see Santa first. Later the wait would be hours long. We took that advice and headed straight for Santa.

Santa spent quite a long time with DC -, so much time that I was beginning to get nervous that we were holding up the line. DC was thrilled.

Next, we visited the Talking Tree – he got a big kick out of that.

But he was a little preoccupied by a sign he noticed on the way up to see Santa so that HAD to be our next stop. He was not going to wait any longer.

His THIRD visit with Mrs. Claus this year!

One Happy Guy, right there.

The rest of the Village was “A Christmas Carole” inspired. We watched the lighting of the tree, Carolers were singing. DC met the Ghost of Christmas Present and actually asked him a question instead of his usual reciting of movie lines.

He was not willing to try a sampling of the Cratchit Family Christmas Dinner, though.

“No, No. No! I didn’t! No, I don’t like it!”






At the Bonfire – “Mom, I am getting very nervous about this!”

Yes, of course. Didn’t you know? Couldn’t you guess? There were …….

BOOKS!

****

That year we weren’t home for Christmas..

 

The holiday season is here and I will admit to having a bit of a Love/Hate relationship with holidays in general. I want to love them, I do, it just does not always work out that way.  I have reached the age where I should be able to place a 2 or 3 foot silver Christmas tree on a table somewhere and have that be the end of it, but I may never achieve that particular rite of passage because of course, DC loves the holidays.

I am glad he does and watching his excitement does help me get more in the spirit of things (that and watching too many Hallmark Christmas movies).

He is excited, so I am excited for him.

A few years ago we decided to move our then regularly scheduled, first week of January vacation to the week of Christmas just to avoid all of the holiday hoopla.

Did we choose a “Christmassy” destination like those found in the Hallmark movies?

No.

We chose Disney because nothing else could take the confusion out of or help soften the blow of a “different” Christmas than another trip to Disney.

I was still worried that this would not be Christmas in DC’s eyes because Florida is really not the place that comes to mind when one thinks Christmas.

And then I worried about the gifts…

From 2014:

The Christmas Vacation Dilemma

A few days before Christmas, I read a post from another favorite blogger of mine, Mother O’ Jim, titled “When Delaying is Enhancing…” . The blog was about her son’s Christmas anxiety over a gift he knew he was going to receive (give it a read if you have a minute) and the steps taken to minimize his anxiety.

While I was reading this post I was thinking about DC. Although he does get very excited and anxious around Christmas-time, reminding me many times everyday that “Christmas is coming soon” – he does not seem to get as anxious as Jim from the blog.

I was a little bit concerned about this Christmas though. Everything about this holiday season seemed to be different. Thanksgiving is normally spent at a restaurant (the same restaurant) with DC, Doug, my brother and sister-in-law and at times, my niece. This year, my niece had moved out of state a few months earlier and Doug was away on a cruise with his sister and his father. The restaurant even seemed to be different, more crowded and much less organized.

DC’s Dad decided to go to Florida for an undetermined amount of time. He left in mid-November. He would not be here around Christmas for DC and for the first time ever, we decided to take our vacation a few weeks earlier than usual and were scheduled to leave Christmas morning. We had to leave the house by 8:30 in the morning.

DC does understand that now that he is an adult, Santa only brings his stocking. The rest of the gifts are from me (Mom). But, would he understand when he woke up on Christmas morning to only a stocking, even if he received the same big pile of gifts the night before? I explained this to him over and over again and he said he understood. This NEVER means that he really understands.

After reading the blog I spoke of earlier, I got a little bit more anxious about it. Jim was happy to get his gift early as would DC, but I know in his head, this would not – even if he agreed that it would – eliminate the expectation of the Christmas morning pile of gifts. I know this from the many, many times I have given him choices to do “this” or have “this” now instead of later or instead of doing or having something different. He agrees but then still expects whatever he traded away.

I realized that I would have to do more than explain it to him over and over again. I thought about showing him pictures, but then I realized that it would make more sense to him and he would not think he’s missing out if he saw the same pile of gifts just being given at a different time.

So I took a photo of our tree and another of the bookcase where Santa usually leaves his stocking and I usually leave his surprise gifts. Then I cut out photos of presents that I could move from one place to the other so he could see that he would be getting the same amount of gifts, just earlier than usual.

(These photos are not of our tree. The originals were terrible. It seems that every time I need to print – the ink just about gone)

Normally after opening gifts at my mother’s, we come home and DC opens the gifts that are already under the tree. There is usually only a few because he knows he’ll be receiving Mom’s hidden gifts in the morning with his stocking from Santa.

normalxmaseve

Gifts from Mom on Christmas Eve

More gifts from Mom and Stocking from Santa on Christmas morning

normalxmasday

More Gifts From Mom and a Stocking from Santa

I had him move the gifts himself, from Christmas morning to Christmas Eve.

vacaxmaseve

Christmas Eve – ALL of Mom’s Gifts

So…..Christmas morning would be just Santa.

vacaxmasday

(Santa would surprise him with another stocking at the hotel when we arrived, but he was not aware of this yet)

We did this every day until I was as sure as I could be that he understood that he was getting the same amount of gifts… just earlier.

Still I was a little bit nervous about Christmas morning….

He was up very early as usual – this was fine since we had to leave early.
He saw the stocking filled with everything he’d asked Santa for. He was happy, maybe not as excited as he usually is, but he wasn’t disappointed – that had been my biggest concern.

There was enough time to use and play with everything in the stocking and enough time to watch the entire Peter Pan Live DVD he’d asked for.
He never made it through the 3 hour version when it was live on TV, but without commercials, it was only an hour and a half!
I am still not a fan….but this time around, DC really enjoyed it.

As DC would say, “Phew, I was very nervous about this!”

Fortunately, it worked out well and he had a Merry Christmas!

As for me, I am still in search of that Hallmark-like Christmas Town and that 3 foot silver tree remains a dream.

*****

This is a Finish the Sentence Friday post:

Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular sentence. This week’s prompt – “The holiday season is coming, and…”

Visit the link at Finding Ninee to read more FTSF posts.