That’s the way it should be-eeee

 

grease 153IMG_3611A repost of an event from two years ago, in honor of my friends that always come through, put up with and go along with not only attending these events but my over the top, out of their comfort zone ideas.

They will not say that they did not have fun!

But really, they are the best!

From February 27, 2014 (Event Date)

“We go together………..”

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

GreaseSR

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and just how much DC and his friends just rise to the occasion and always have a great time together,  I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***I am fortunate to have friends that are willing to go all out for something that DC loves so much; we all took a line from that song and dressed appropriately for the Sing-A-Long. He and his friends had a ball and I think after the initial embarrassment, my friends did as well.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Tonya’s house one Sunday afternoon. Tonya being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true 🙂 ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Except this guy - Grease Sing A Long - Beauty School Drop Out

Except this guy – Grease Sing A Long – Beauty School Drop Out

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

 

 

The Theater's Facebook Page

The Theater’s Facebook Page

The Theater's Facebook Page

The Theater’s Facebook Page

 

 

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings

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“Change is the essential process of all existence” ~ Mr. Spock

But oftentimes “change” or loss is something that we do not embrace very readily or happily.

And there are those days when the Facebook memories, we enjoy so much are not very enjoyable at all…..

It is hard to believe that a year has come and gone ~ I have said goodbye to many of my childhood/teen age icons in the months since, but this was the first and by far, the worst in that long line of loss….

from Feb, 2015…..

 

“Logic is the beginning of wisdom; not the end.”
...and yes, I do always have Spock ears readily available..

“Logic is the beginning of wisdom; not the end.” ~ Mr. Spock

From the post that I re-blogged yesterday: To Boldly Go…..

I admit it…

I am just a big old Sci-fi geek from way back. I watched the first episode of Star Trek back in 1966/1967 (?) and I was hooked – for life.

The first “sign” that DC learned when he was very young (for those of you that may not know, DC was non-verbal until he was 7 years old) was the “Live Long and Prosper” sign. If and when he saw a picture of Mr. Spock or heard him mentioned, he used that sign.

I’ve been in love with Star Trek and Mr. Spock since the very first episode aired back in the 60’s.

I loved the adventures in space.

I loved that all of the crew members were treated with respect and as equals.

I wanted a tribble.

I added new words to my vocabulary, most memorable –  “poppycock”.

I wanted to be a part of the crew, but not in a red shirt.

I loved everything about Star Trek.

I always had an affinity for the Mr. Spock character.  I loved his no-nonsense purely logical way of looking at things. I especially loved the episodes where he was confused and/or outright annoyed by human behavior – A piece of the action comes to mind.

I remember being sad when the show went off the air. But all was not lost! 10 years later “Star Trek the Motion Picture” was set to be released. I anxiously awaited opening day and although I admit I was a little bit disappointed in the film, I was thrilled to see all of my favorite characters again.

The movies that followed were so much better than the first “Motion Picture” and I saw each and every one of them more than once until the 2009 release of Star Trek the updated prequel. It was there that I stopped. Nothing against the movie or the actors. I’m sure it was and they were just wonderful. I just did not want to see new actors playing the parts of my favorite characters.

I  remember when The Next Generation was being advertised. I was outraged that anyone would try to create a new Star Trek even if the person creating it was Gene Roddenberry himself. How Dare He?!!! My boyfriend at the time, knowing how much I loved Star Trek taped it and brought it to my house for me to watch. I flatly refused. I would NEVER watch a “fake” Star Trek, Never!

Well…. never say never.

As it turned out, I loved it and every other that came after.

Not only was Mr. Spock my favorite character but I really loved Leonard Nimoy the actor. He was the only reason I was at all interested in watching Mission Impossible (the TV show).  I grew to love the show, but Leonard got me there. I will also never forget being glued to the TV watching “In Search Of…”.

I did at one time own the first, second and a few other editions of the Primortals comic books. I wish I knew what happened to them.

Then imagine my excitement when he showed up as William Bell on Fringe! Not to mention playing himself on The Big Bang Theory!

That Spock character resonates a bit more with me now that it did back then, if you can believe that possible. Having a child with autism has made me view Mr. Spock in an entirely different light. His matter-of-fact, logical, no grey area persona reminds me a bit of my son. It reminds me of the way many people perceive people with autism. However,  like many people with autism,  in spite of that matter-of-fact, no grey area, logical approach he had to life, his duties, his interaction with others, Mr. Spock showed compassion, empathy and yes, even friendship to those around him – in his own way.

Leonard Nimoy was one of my childhood heroes and I suppose you can say that I carried that adoration with me into adulthood. I was heartbroken to hear of his passing. There will never be another like him. It may be silly to you but I really feel that a piece of my childhood is gone forever – a small piece that I will never be able to get back.

Live Long and Prosper ~ wherever you may land.

“Of my friend I can only say this: of all the souls that I met on my travels, his was the most… human.”  ~ James T. Kirk

*******

And while you are still here, please check out two more posts from Blogger friends of mine:

Thank you Mr. Nimoy – from Autism Mom

RIP Mr. Nimoy – from SSirica

“You can’t stop the signal, Mal”


serenity

“Everything goes somewhere, and I go everywhere” ~ Serenity

 

Well Mr.Universe, apparently the signal can indeed be stopped and unfortunately wherever the “somewhere”  where everything goes is; it is definitely far from here……

During almost the entire month of November on through early December my internet was down more than it was up. After weeks of “talking” to “The F word’s” Customer Service people, getting a new modem and visits from service techs, I threw in the towel and switched my internet/Wi-Fi provider.  Although this provider is so much better than “The F Word”, my internet goes down at least once per week – for days at a time or the signal is so bad that I do have internet but it is equal only to a very bad dial-up connection from the old days. “It’s true, there’s no beacon”*.

I have to believe that I must live on “the edge of the galaxy”, (in) “that place of nothing*”. In a void. In “the darkness. Kind of darkness you can’t even imagine. Blacker than the space it moves through”* ……. or I just have exceptionally bad luck with anything having to do with technology of any kind.

We had a snow day recently and I found myself thankful that when I upgraded DC and my IPhones a month or so ago, I purchased a tablet that can run on my AT&T data when there is no Wi-Fi. It was then that I had a “What were you thinking?” moment.

I bought DC an IPad for Christmas. Why? I do not know. I don’t know what I was thinking.

Well… I do, I guess. It is extremely difficult coming up with Christmas gifts that DC will like. Basically he wants DVD’s and Books (and of course the standard Band-Aids, scotch tape, pens, paper and mustaches), all of which he receives throughout the year. He does also receive them at Christmas time as well, but it is difficult finding DVD’s or Books that he does not already have. So I decided that he really would love an IPad. He does love it – maybe too much.

DC is 24. He grew up without the benefit of all of this technology, so keeping him occupied, especially when we were out, was a battle. When he was young he really loved watching Disney videos (VHS, for you youngsters), but there was nothing “portable” for him to take with him. Still, he developed and obsession with watching these Disney VHS tapes to the point where he did not want to do anything else in anticipation of watching these movies. I had to limit his movie watching to weekends only. If you think THAT went smoothly, you are very mistaken.

When they came out with those little portable DVD players, I bought one for DC… but he was only able to use it when we traveled or when there was a day off from school and he had to come to work with me. He never used it at home, so it did not occur to him to want to use it at home. When those bit the dust, I would let him watch his DVD’s on my lap top when he came to work with me. Somewhere along the way he discovered YouTube. I did not even know he knew how to use the internet – apparently they showed him how to do this at school and really, you only need to show him once.

So okay, he was now allowed to use the computer and/or watch his movies on the weekends. After he crashed my computer…. twice, I was happy when he won a laptop in a raffle, but still it was to be used only on the weekend, when we traveled, or when he came to work with me.

Moving on….

When he was in his transition program (18-21) before he left the school system, I decided that he really needed to have a cell phone. The phone is something that he does not grasp 100%, but I really needed to know he could call me or someone if he needed to.  I started out with a TracFone because I did not know if he would be able to keep track of this phone and not lose it. Once I saw that he was very good about knowing where it was at all times and carrying it with him, I upgraded him to an IPhone. It wasn’t long before he discovered he could get to YouTube and his Facebook page. That was fine with me. He only used it in the car. This was one of those rules he makes up in his own head – there are a lot of those – he would only use it in the car or on the bus.

He does have a Kindle that he really is not all that thrilled about. He would rather carry 20 lbs. of books in his backpack and of course, he can’t edit a book on Kindle. Then for some reason he got over his “only in the car” rule for his IPhone. He would use it at home, but only for about a half hour so that really wasn’t a big deal for me.

Then in my infinite wisdom, because he hates his Kindle and likes the IPhone, I decided to buy him this IPad. Well….. I have single-handedly created a new obsession. It was new, so at the beginning of course I let him use it more than I should have. In my mind (and really, my mind should have known better, but the “should have known better” part of my mind was overridden by the “wanting to give him something he really loves for Christmas” part of my mind) I really thought he would just replace the IPhone half hour with a half hour on the IPad.
 
Well, it did not work out that way. He loves it and I am glad that he does, but he wants to use it all of the time and when he freaked out about the internet going down and I found myself being grateful that I had the tablet that uses my data, I knew I had created a big problem.

I was able to manage all of these years without the benefit of the IPad and I am really disappointed in myself for creating this issue. We will be working on this and it will be limited, but I am really angry at myself for creating a situation that needs to be worked on.
 
On the other hand, I am angry because he loves it and I feel bad because I should know; I DO know that everything goes from zero to obsession and why do I always have to put limits on the things that he loves?

 

*Firefly ~ Bushwacked

 

 

 

 

 

“Sing a Song” – Blog titles – Part 3

Blog titles 3

You may (or may not) have noticed that I use quite a few song titles, lyrics or variations thereof as blog titles. I do this because music is always the first thing that pops into my head when giving a title to a blog. Once it is in my head, it’s there and even if the actual song has nothing to do with the post itself, I have to use it and I have to type it the way I am hearing it in my head.”

These, along with the Short Story ‘Series’ are the posts that I put together and save for the times when we are away or when I just do not have time to write. “Fluff” or “Filler” – let’s call them. I have fun with them anyway….

(Blog titles are linked)

 

All Day Music (or Blog Titles – Part Two)

*********

#TBT We may never pass this way again – Happy ‘Co-lation’

**********

Something’s coming…Could it be? Yes it could…….Old Age?

 

********

Thunder and Lightning – Happy 4th!

 

********

Take it easy

Already Gone

birdwatching

 

 

 

********

Keep on Tryin’

 

…..

Don’t you cry no more #Supernatural

…..

Will it go round in circles

…..

stars beginning to fade…..

…..

and of course….

“Sing a Song”

Flights, Ships, Fears…

As I make preparations for our upcoming vacation I notice that I am more apprehensive than I usually am. I am worried about DC’s seizures. I am worried about being on a ship if he should have a seizure. His doctor informed me that DC should not go swimming or even take baths any more. He seems to be fine with this now, but who knows how he will react once we are there. On the plus side,  DC does not have as much interest in swimming as he used to, so I am hoping it will still be “fine” with him once we are in the warmer weather.

I am also reminded of an airport incident back October 2014. I was angry that the TSA Agents frightened and upset DC. I was more angry that they did not treat him as a human being. After writing the post below and thinking about the situation some more, my anger turned to fear about what COULD have happened.

DC is not aggressive, he never has been… but we never know what someone will do when frightened. DC is terrified of dogs. When a dog he does not know (even a dog he does know) comes at him as dogs often do – his first instinct is to run or hide behind me. His next instinct is to kick. He is not being aggressive or trying to hurt the dog, he is just frightened and wants the dog to go away. It is instinct. It is a reaction, plain and simple.

Having this agent grab him and search him as he did frightened him into the closest thing we’ve had to an actual meltdown in years. I really thought he was heading for one. It took awhile but he was able to get himself together. What if DC, in his frightened state, kicked him or hit him? What if he tried to run away?  What would have happened?

If these people saw fit to treat him this way, KNOWING he is autistic, I am terrified to think of what they would have done if he lashed out at them. I would like to say that I don’t want to think about it, and I really don’t want to think about it, but I have to – of course I have to……..

The more stories and news reports I hear and read, the more fearful I become.

From October 2014 is an excerpt of that post:

Off we go….. (almost)

Flying:

The flight is also making me anxious. I am not one who can ever sleep on a plane, ever. I can’t sit still in those seats. DC, on the other hand is very good on airplanes – now, not so much when he was young – but he is really good now.

DC has flown quite a bit, but this will be his longest flight so far. Security is always a bit overwhelming for him, but he gets through it. As many times as he has flown before, he never had to go through the body scan until our trip in October to North Carolina’s Mountain of OZ.

There were a few times over the years when the security lines were not very busy and I wanted him to go through so I could explain it to him without holding up the line, but as soon as I mentioned “Autism”, they whisked him though the old walk-through before I had the chance to finish my sentence. That was fine, but I really wanted him to do it once in case there was ever a time that we weren’t given the choice. Of course I do explain it all to him while we’re in line and make him watch what everyone else is doing, just in case but as you know, no amount of explaining can take the place of doing.

Heading home from the Charlotte airport – it happened. He had to go through the body scan. As always I explained and showed him what he had to do while waiting in the line. Doug went through first as always and waited on the other side. I was behind DC. The security people saw us giving him instructions and the woman let me get up close so I can show him exactly what to do. He put his feet on the foot prints and raised his arms and waited for them to tell him he was finished. He did a great job.

He turned to walk out of the body scan when the guard on the other side near where Doug was waiting, grabbed DC with absolutely no notice and without saying a word and searched him! It happened too fast for either of us to react! DC was now screaming “Not all right! Not alright!” while I was trying to get through the scan to get to him. Both security guards saw us giving him directions. I told the woman he has Autism. I thought that they ‘got it’. There was no way they could not have seen that maybe they should approach with care or at least say something to him before he was grabbed and patted down.

I finally made it to the other side and DC was still yelling and really could not function – he couldn’t get his shoes and other items off of the conveyor belt – he just continued to yell, fists in the air “Not all right!”. Now all of the other security people in the area were watching as I tried to calm him down. I was praying that none of them would say anything or try to approach him and make matters worse. He was really causing a “disturbance” in the airport. This went on for a good long while. I had him sit down and tried to explain to him that he did everything correctly. The man should not have grabbed him without letting him know first. This was not his fault and he had every right to be upset. Eventually he did calm down and there were no aftershocks on the flight home.

People do at times overlook him completely and direct their questions to me instead of talking to him. I do always ask him the question myself and make sure he gives the person the answer himself. I mentioned earlier in the post that I thought that there was no way on earth that the security guards did not understand even before I explained that DC has Autism.  Now as I think about it, I wonder if they actually did understand and decided that due to his Autism, they did not really need to talk to DC directly at all…… and THAT is a problem.

***

Versions of this post were also published:

On the Mighty: “My Son Did a Great Job at Airport Security. But This Guard Did Not.”

and at The Behavior Station

Those pesky tree branches…

tree branch

I know that I have written more than once about DC’s inability to communicate to me or anyone else if/when something might be  wrong. There have been very few times that he has actually volunteered information to me when he was not feeling well or when something hurt or was bothering him.

Most of the times when he does communicate a problem to me, it is really just a ploy to cover himself in Band-Aids:

DC: “Mom, my leg is killing me.” (there was nothing wrong with his leg, I checked)

Me: “What happened to your leg?”

DC:”I broke my leg.”

Me: “How did you break your leg?”

DC: “Tree branch. Ouch!” (we are in the house)…

The lengths that he will go, to plaster himself in Band-Aids.

A tree branch seems to be the number one culprit in many of his injuries. This leads me to believe that at one time or another a tree branch was indeed the reason for an injury. When? I have no idea, but once he comes up with an answer he likes, it usually becomes one of his standard answers.

More often than not the answer I get is Nothing ‘wong’ or Nothing happened. Although DC never really gets cuts or scrapes – which I assume is the reason for his obsession with Band-Aids and really is not what I’d call accident prone, he does always seem to have an odd mark or “spot” somewhere or another. These “spot” mysteries oftentimes take a good amount of time for me to figure out. He is not always a big help in that area.

There was the one time that he came home from his senior class picnic with a red mark (scrape, but not really band-aide worthy) on his arm. When I asked him what happened, he told me that his IA (Para, to some of you) Mrs. G. pushed him into a bush and he fell down. Now, if I were a more paranoid person (hahaha, who am I kidding, we all know I am) I would have believed this because He Was Actually Telling Me Something, but I have known Mrs. G for years so his explanation did not hold water. Of course I did not tell him that I didn’t believe his story because: 1. He actually told me something and I didn’t want to discourage him from doing so in the future and 2. I assumed that he probably really did fall into a bush and Mrs. G was there to help him out. ~ It’s all in the translation. I spoke with Mrs. G the next day and yes, my version was correct.

Or the time that I noticed a large quarter sized mark on the side of his leg/hip one morning before camp. I could not for the life of me figure out what happened. He was offering no information at all. I asked the camp nurse to take a look at it. She did not think it was any kind of bug bite (I am always concerned about bug/tick bites when he is at camp). I asked DC again what happened he just kept saying “swing”

“Did you fall off of the swing?”

No, swing.

“Did you get stuck on something on the swing?”

No! Swing (he was beginning to get upset – so I had to stop because if I ask too many questions he thinks he is getting it wrong and changes his story).

After thinking about it for quite some time, I realized that he was actually telling me what happened. It was the swing. DC loves the swings at camp. He will spend any free time and all of the outdoor rec. portion of his time on the swings. He is a big boy. The swing was rubbing against his hip every day, causing something that resembled a very large healed-over blister. Once I figured it out, we just kept it covered with Band-Aids, so as not to cause so much friction. This was one of the very few times where Band-Aids were applied for a legitimate reason .

Then there was the big stripe down the side of his neck, which is a regular occurrence now, but the first time I noticed this mark, it scared the life out of me.

“Oh My God! What happened?”

“Tree branch”

He was in the car with me all day. He did not come in contact with a tree branch. Once again, it took me a while to figure this one out. When we are driving he rocks back and forth in his seat with so much force that it shakes the whole car (very distracting to the person driving). Because we had been driving so long, the seat belt was rubbing against his neck with every rock for a good long time, causing this large red stripe down the side of his neck. I do not think he even felt it. I have always believed that he does not feel pain the way we do or he does not process pain the way we do.  This and the fact that he is not always able to communicate what might be going on is and will always be a huge worry of mine. Verbal does not always mean communication.

Last week, I noticed a mark on the back of his leg. I asked him what happened. “Nothing happened”

He hates for me to look at these things because he is afraid that he will have to go to the doctor. After a lot of back and forth and ‘egg – guo – ing’ he let me put some anti-bacterial cream on it and he went on his way. He brought it up again the following day on his own as his way of apologizing for giving me a hard time the day before. “Feels much better now, Mom! Thank you! Thank you!”.

I asked him again what happened and he rattled off a list. I am sure the answer may be in there somewhere if I think about it long enough – and then again, maybe not… one never knows.

“The swing” (which would have made perfect sense as it looked similar to the swing injury –  if he had been on a swing.)

“A rock”

“A spindle – ouch” (my personal favorite)

‘The chair”

“Tree Branch”

So…..

Sometimes I do get the answer I am looking for albeit in a round-about way,

and other times…..

I am just left with a tree branch..