That’s the way it should be-eeee

Posted by TakingItAStepAtATime

A 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!”

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

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

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

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

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

Posted by TakingItAStepAtATime

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….

Repost Feb 2016 – from Feb, 2015…..

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

“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 than 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”

Posted by TakingItAStepAtATime

“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

Posted by TakingItAStepAtATime

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

********

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…

Posted by TakingItAStepAtATime

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…

Posted by TakingItAStepAtATime

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..

Flap like a Chicken

Posted by TakingItAStepAtATime

It has been a little bit of an odd week here in DC-land. Some plusses but just all around odd. At this point even the positives worry me since he began having seizures. Right before both he was hyper-aware and oddly communicative. I just haven’t relaxed enough yet to take the positives as totally positive. So, I worry.

On the plus side, he tried and ATE zucchini! TWICE! – That is MAJOR!

Most of the “oddness” we’ve encountered this week are not out of the ordinary things they just seem to be elevated.

I know I’ve written previously that DC does not cry – never has. When he hurts himself or is upset, he will yell or scream, but he never cries. Even as a baby his crying was more like screaming and he really never had tears. To this day, it is very rare for him to have tears. When he does, it is usually due to allergies and still even with allergies, tears are rare. He will at times use water to make tears so he can look at himself in the mirror and see “tears”.

He started taking seizure medication back in August with really no adverse side effects except for one day about 3 weeks in, he was watching a YouTube video and just started bawling, uncontrollably complete with tears and “ugly cry face”. This went on for a good hour. When I asked him what was making him sad, he said it was the Barney song.

(If anyone should be crying over the Barney song, it should be me. I have had to listen to that song for 24 years now. He’s been watching that show since before it hit PBS, back in the days when Barney was dark purple (and a little scary looking, if you ask me) and Sandy Duncan played Michael’s mother. Yes, I am still looking for that Barney support group.)

I chalked the crying up to the meds and I did inform his neurologist. It never happened again, until this week, when three times he went into the same over the top crying, like “overly emotional” me crying over a Hallmark commercial.

Each time he said it was because of the Barney song. The last time he did also say that he missed his Aunt Kim, who he is going to visit tomorrow. Now I have to wonder if it is/was a side effect from the meds why did it happen 5 moths ago and not again until this week?

****

Mrs. H reported that on Friday, he came home from work out-of-sorts which seemed to stem from his immediate need to change his shirt. He couldn’t wait. Now clothing issues are ongoing here, but as annoying shirts go, this one really shouldn’t have caused him that much anxiety. Years ago, yes – but really not so much anymore. It was just a plain black shirt, no buttons, no pockets, no collar, no tags – pretty much, a long sleeved t-shirt, but it had to come off… immediately.

****

Today DC and I went to meet my mother for lunch. We were going to an Italian restaurant that we have been to a few times before. DC always has a hard time finding anything to eat there. They do not have even one item on “DC’s Restaurant Triad” – Burgers, Wings or Pizza, so I have to plan ahead when we go there. I have to remind him more than once and check the menu on-line after which he chooses mozzarella carrozza (but we must call them mozzarella sticks, even though they are triangles) and garlic bread also with mozzarella – always.

At the restaurant; his order placed, he heard me order grilled chicken and insisted on having grilled chicken as well! Now, this ‘boy’ loves chicken. He eats chicken just about every day, but it has to have bones. “Chicken with bones and sprinkles” (Mrs. Dash) or wings or tenders (tenders are not required to have a bone). He never wants chicken without the bone unless they are tenders. This…. another MAJOR plus in my book – a fourth menu option!

****

The minus… He got very anxious at lunch, which is not really all that uncommon. He said he needed to “flap his wings”. The restaurant was not busy and there was no threat of him hitting anyone with his flapping so I said it was fine but to try to keep the ‘clucking’ at low volume. He did, but I could see that it wasn’t working for him. I asked if he wanted to go outside for a bit. First he said no, but then he decided he would since he was done with his appetizer and the rest of our food had not arrived yet. Normally, he would think he was being punished if I asked him to go outside – I always tell him that this is not the case but that is what he thinks, so I was surprised that he agreed.

There we stood, on the sidewalk in front of the restaurant clucking and flapping. The clucking was even more intense than usual. The only way I can describe it would be that it looked like his head was motorized. I do not know how he was doing it. I have never seen such extreme clucking. We stood outside for a good long while until he decided he was ready to go back inside. We were not inside for very long before he decided he needed to go out again. More flapping more intense clucking. Eventually he calmed down and I could see a bit of a smile on his face so I knew this would probably be our last trip outside. We went back in and he was fine for the remainder of our time there.

He had a hard time; the minus – but really the plus side is that he agreed to go outside and he decided for himself that he needed to go back outside the second time.

****

I know that these incidents may not seem like a big deal to many of you. Years ago, all of the above would have been much worse but we are over a lot of that now or I should say that it all comes in lesser degrees now, so all of it combined plus the continuous repeating of random words as if the needle is stuck on a record and the out of control over the top laughing is making me nervous that he is gearing up for something.

He will be going to visit his aunt tomorrow. This will be the first time (other than when he is at his job, with “trained professionals”) that he has been anywhere without me, Mrs. H or Doug since his seizures started (our world has gotten much smaller) and given his odd behavior this week, his poor aunt will have to listen to pages of instructions tomorrow when she picks him up. Fortunately, she is used to me.

Over the years as I gave my lists of instructions to his Dad (I’ve always had many instructions even before the seizures), more than once he’s asked, “You think I am stupid, don’t you?” ……………………………………..

To the many other people who have had to listen to my barrage of instructions, I will say, No, I don’t think you are stupid. Yes, I know that you probably know all of this. On the slim chance that there might be one little thing that you do not know, I am going to say it. I will not feel better unless I say it out loud even though I am sure you probably already know it.

He is excited to go to his aunt’s tomorrow and I am sure he will be fine. I have every confidence that she is ready for my list and that there may be a quiz 🙂 –

Just kidding, no quiz…. maybe just on oral exam…

Yes, I am very fortunate that she has had many years to get used to me and is able to put up with me.

Walk Slowly

Posted by TakingItAStepAtATime

We’ve had some “weather” over the past week or so. Ice and snow are not on the list of DC’s favorite things. Usually I have to walk him out to his transportation if there is even a patch of snow or ice on the sidewalk – and believe me, he does not have a problem taking me down with him (or instead of him) if he falls or even just slips a little bit. It is drama all of the way. Watching him walk down the sidewalk the other day (it was clear enough to “do it all by myself”), reminded me of the following post from right around this time two years ago.

So, from January 2014, we have…..

Literally Speaking

Raining Cats and Dogs

Twelve years ago, I wrote this:

“You can NEVER be too specific:

While learning “grocery shopping” in the classroom; his plastic cart full of plastic food… he was told that it was time to “put everything on the counter to pay” – Instead of taking the food out of the cart, he lifted the entire cart onto the counter!”

And

“When you tell your child to pull his sweat pants down over his socks and he proceeds to PULL HIS PANTS DOWN from the waist to his ankles – You know you were not specific enough with your request.”

And a few years later, this:

My son loves to write little “stories” (he thinks they are stories, but they are usually just one line).

I had been home from work for a few days with the “Flu”. It really didn’t occur to me that he had no idea what the “Flu” was and I wondered why he would laugh each time I mentioned it. He decided he would write one of his one-line “stories” for me to make me feel better ……

“Mom was so high”

It took me a few minutes…… but then I realized he thought I “Flew”

Then there was the time I said “Now listen closely” and he stuck his face one inch from mine…..
He laughed for about a week after I told him it was time to “hit the road”.
Or.. after the third round of kids whacked the piñata at his camp Halloween party, the Director said “Okay, DC, lets’ see you to tear it up” – he yanked it down and ripped it apart with his hands.

tear it up

There are so many other examples, but these few really stick in my head.

Needless to say, like many people with autism, DC takes everything literally. Over the years, I have gotten much better at recognizing when something is said or read that taken literally will not make much sense to him. I always try to stop and explain what it means in that context, whether he asks or not.

He has made a great deal of progress in that area as well. He knows that the “flu” does not mean “flying”. He gets that “hit the road” means we have to get going. But he knows these things because they were explained to him, he is not able just figure it out himself – how could he?

Knowing this about my son, I suppose, when I told him to “walk slowly” on the sidewalk just in case there was ice (there wasn’t), I should have expected this:

and still more Short Stories

Posted by TakingItAStepAtATime

Below are some “short stories” (statuses) that have been posted on my own and my public Facebook pages – too short to qualify as a blog post, although many have turned out to be the inspiration for an official blog post. You may have seen a few of these before, probably not all though. Some are recent, others are old “Facebook Memories” (love that!).

This is one of those posts that I put together and save to post later when we are away or when I am really busy and really don’t have the time to write. Like the “Blog Title Series” (Series? Yes, there’s more), they are very often off topic or “fluff”. I like fluff, sometimes fluff is fun.

DC taking a bow at Best Buddies Karaoke today. “Somewhere Over the Rainbow” – Anyone shocked at that selection? Thanks for the picture, Steve!

…..

DC’s been dancing and singing since 7am “I like to be in ‘Mary – Ka’ “. He’s ready for West Side Story today!

…..

It’s a Cinderella Halloween Wedding! “Do you take this man to be your Wedding Wedding husband?”

…..

Good Morning and Happy Halloween! (Song from “Sabrina the Teenage Witch”)

…..

He came back with Bread and only Bread.

…..

The DR also loves wings (Giving up the “fish fingers and custard” for the evening)

…..

It is now time for us to stand uncomfortably around the staff room for the third cake of the week.

…..

Official review is in: DC is giving #peterpanlive a “two eyes closed” and that means I can be done with this!

(He did totally love it on DVD without the commercials)

…..

I have completely lost my voice. As much as I am sure that many people are happy about this – DC, on the other hand has been pretty freaked out.

He’s “very nervous about this”

…..

“Mom! I am so exciting for Friday is Christmas Eve!”

(I gave up explaining that Christmas Eve is Thursday, early on – I think he really means “Christmas” anyway)

Me: Yes you are!

“Work on Monday, Tuesday, Wednesday! No work ‘Firsday’ and Friday, Please!”

Me: No, no work Thursday and Friday, don’t worry.

“Please!”

Me: No, no work – don’t worry.

(30 seconds later)

“Mom! I am so exciting for Friday is Christmas Eve!”

Me: Okay.

“Work on Monday, Tuesday, Wednesday! No work ‘Firsday’ and Friday, Please!”

Me: No, no work Thursday and Friday, don’t worry.

“Please!”

Me: no, I told you, no work.

(Repeat 700 times)

How was your day?

…..

Too many things needed to be charged tonight so I unplugged the lamp in the living room downstairs where no one is or will be until morning (one of three lamps) – This is what is keeping him awake tonight. “The Lamp- Unplugged”
…..

“Vickie, I got the most “skata-brand*” idea!” ~ Hayley Mills ~ The Trouble with Angels~ (and no, I still have not been informed of what that idea might be) …

…..

So DC had “Secret Breakfast” this morning, but he asked for it with BACON. I voted “no” on that one because “That would be ‘dis-dust-ing’ “

“stars beginning to fade……”

Posted by TakingItAStepAtATime

The passing of David Bowie hit me hard, it did. The passing of Glenn Frey hit me even harder. Is it because we are losing so many of the icons I grew up with and unconsciously my own mortality is now not only slapping me but slugging me in the face? Is it because I have been a fan of the Eagles since high school and the death of Glenn Frey really means the end of the Eagles forever? Maybe it is little bit of both. Whatever way you look at it, I am sad. Sad, as if I knew him personally.

Steve, one of my best friends in high school gave me my first Eagles album for my 16th birthday. I still remember finding “The Eagles Greatest Hits” album on my chair in biology class. Since then, I have always owned a version of that album (Vinyl, 8-Track, Cassette, CD and now downloaded on my iPhone) – of course I have added to that collection with many of their other albums since, but I will always remember receiving my first.

I had the opportunity to bring DC and his friend BB to see the Eagles in July. I had not been to a large venue concert in quite some time and we were in the “oxygen necessary” section, but it really did not matter. They were great. I am so glad that we opted to go!

Did/does DC know he was in the presence of legends? No. Did he/does he understand that I grew up with their music? Not really. Still I am happy that I had the chance to share that with him and BB.

Below is the post that I wrote after attending the concert but first, please give a listen to the two songs that coincidently I have been listening to obsessively over the past two weeks:

“Well, my time went so quickly, I went lickety-splitly
Out to my ol’ fifty-five.
As I pulled away slowly feelin’ so holy
God knows I was feelin’ alive.”

“And the storybook comes to a close…… Gone are the ribbons and bows. Things to remember, places to go”

From July 2015 – Take it Easy

Take it easy
DC’s best friend, BB is a big oldies fan and has been from the time he was very young – Elvis being THE ultimate favorite. I once asked his mother where this came from, he was definitely too young at the time to really know who Elvis was. She had no idea. His love for Elvis led him to the Beatles and oldies in general. He listens to the oldies station and the DJ’s, before the station changed format, would always take a phone call from BB.

DC is always open to do anything BB likes – they do have quite a lot in common to begin with, namely their love of musicals, but DC never really had much of an interest in concerts, other than the Wiggles (kill me now).

He has been to plenty though. Most were outdoors where we were free to move about.

6 years old -blondie-better-than-ezra-our-lady-peaceecho-and-the-bunnymen-mighty-mighty-bosstonesks-choice-local-h-moist-moby-rane

6 years old -blondie-better than ezra-our lady peace-echo and the bunnymen-mighty mighty bosstones k’s choice-local h-moby

BB’s love of the oldies opens up another door for DC, away from the realm of Disney. If BB wants to go, DC is open to it and will almost always end up having a good time. I am always on the lookout for oldies concerts. DC and BB have been to quite a few Beatles cover band concerts, one with an Elvis impersonator as the opening act. I never have to try to “relate” these concerts to anything for DC – BB likes it so that is good enough for him. Of course Elvis was easily relatable to Lilo and Stitch, but that was just a bonus. We’ve been to a “Happy Together” concert and even Chicago. BB of course loved all of them and DC really did enjoy himself too, even though he really did not know any of the music.

When my brother offered me Eagles tickets back in March for my birthday, BB was my first thought. Keeping it a secret from him for 3 months was not an easy task for BB’s mother. Much like DC, we can not tell BB about these events too far ahead of time. One of the last times we were planning on taking BB with us somewhere – he went snooping found it written in his mom’s calendar. He always seems to find out ahead of time – a true detective indeed. This time I told her to write it in as “Bird Watching” (yes, I crack myself). That is exactly what she did…… We did actually manage to keep it a secret for possibly the first time ever!!!!! When we came to pick him up, he still had no idea where he was going. Impressive!

And how did the boys do……………?

BB was certainly surprised and excited when he found out where he was going. He was a little bit overwhelmed by the crowds. I don’t think he was expecting quite that many people – The ‘Beatles’, Chicago and Happy Together shows were all at much smaller venues. At intermission while standing in the massive crowd, he asked me if this was what ‘the’ concert was like in 1971………. (sigh)…………..

I explained to him that I while I did not go to many concerts in 1971 because I was ELEVEN….. this is what a concert was like and is still like now. He had just never been to a large concert venue before. Because the Eagles were talking a lot about 1971 while going though their history, he had it in his head that all of these people attending were there as a reenactment of a 1971 concert. I don’t think he realized the amount of people who attend concerts in large venues.

DC found it necessary to nap during the “mellow” first part of the show. He caught his second wind for the second half and I do believe they both had a very good time – crowds, naps, bird-watching and all.