Communication

Quarantine Diaries – Part 11: Sabrina the Teenage Witch

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Last week I saw a post about a Sabrina The Teenage Witch Virtual cast reunion. I went back and forth with myself for a day or two between –

  1. Will DC sit through a panel? Historically with the exception of the recent Star Trek Cruise panels, (which I am beginning to second guess myself about – I’m thinking that he just he may have fallen asleep during one) he falls asleep. It doesn’t matter who it is or what the panel is about.   AND…
  2. How could I pass this up? He LOVES Sabrina!

I finally decided to go for it. What was the worst that could happen? He could fall asleep and I would just watch it by myself.

After I bought the tickets, I noticed that he could also have a one-on-one conversation with one of the cast members, so I went back and bought the upgraded ticket for the one on one. Due to my impressive capacity to over-think all things, what I actually did was purchase tickets for the panel and then tickets for the panel again with the one-on-one, but that was fine – it was for a good cause.

For the one on one we chose Alimi Ballard.

Now, I have been a fan of his since Dark Angel and NUMB3RS with NUMB3RS being one of my favorite go-to, re-watch series, but it was only a short while ago that I discovered that he was also a regular on Sabrina.

How did I discover that, you ask? Well DC told me of course. He saw him on the screen one day in NUMB3RS.  As you know, DC knows everyone who has ever played a Disney role or has had a part in any of his favorite TV shows or non-Disney movies.

DC was excited.

It could go three ways when DC gets excited about something, especially when the event is days, weeks or months away (this was probably a week from the time I bought the tickets)

  1. He can get himself so excited for so long that at the time of the event, he just shuts down.
  2. He can get himself so excited that he screeches and laughs loudly during the whole thing and misses what is going on. OR…
  3. He is just the right amount of excited that he enjoys the event fully.

Seeing that we would be first in line for the one on one on the app, I decided to tweet Mr. Ballard to give him a heads up about DC’s reaction (or worse case, non-reaction). He follows me on twitter and to this day, I have no idea why (not that I am complaining, mind you) so I knew he was very responsive to tweets. I would not have even bothered if we were further down in line, but since we were first, I thought there was a possibility that he would remember the tweet at the time of the call.

I understand that your one on one volume is probably pretty high, but because the loop app says we are first in line, I wanted to give you a head’s up. My son is 29 and autistic. He is excited about talking to the “Quizmaster” but you will probably have to do most of the talking and the answers you get back might be a lot of “GREAT” – just go with it. I wouldn’t bother to tweet this to you if we were farther down in line, but since it says we are first, I am hoping that you will remember when the time comes. Thank you!

So you all know that now DC was even more excited to have been called a “Prince”.

Once again, I have to remind you that I write in terms of his autism, so there are no complaints here at all; he came away from this event a very happy guy, but there were some issues (not the fault of the company putting on the event or any of the participants. They were all extremely helpful. I want to make that perfectly clear).

When we signed into the app, we could see the count down; 5 minutes until the event, 4 minutes and so on.

When it came time for the event to begin, there was just a black screen that read “The event hasn’t started yet”.

After 20 minutes, I saw that I was going to lose DC. Once lost, I’d never get him back. DC has really made great strides at waiting in lines over the years, but not waiting while staring at a screen. Once I saw that look in his eyes (and yes, I can see it and know where it’s going), I started making jokes to pull him back.

“Oh No! They are Late! Late, Late, Late!”

He started to laugh (Phew!)

Then he made a joke that I was pretty impressed with:

“Oh no! They are going to be late for the Smashing Pumpkins Concert!”

He laughed hysterically for a good long time. (for an explanation – please read from our “Everything is Related” series – Camp Special Days which includes Sabrina and the Smashing Pumpkins Concert). Phew! Again!

When the event finally started at 2:30 (apparently Vimeo crashed world-wide and was the cause of the delay), I still had him with me. Phew! A third time!

DC watched the entire event and loved it. No, he did not even doze off for a few minutes.

Once again I am going to say as I have in most of my “Quarantine Diaries” – He has shown so much growth throughout this “sickness”, as DC calls it. Two months ago, he would never had made it to the panel after having to wait (even with the jokes).

When the event was over, DC being DC announced “Mom, I would like to go to the restroom”.

Knowing our call was coming up…..

“Noooooooo! You will miss your call and they are not able to call back.”

So he waited (if you know DC, you know that waiting IS a big deal!) – Growth! I’m telling you! Growth!

His call came.

They had a nice talk.

DC was in category #3… Just excited enough to enjoy the call.

The call cut out before we had a chance to take the selfie (the camera icon disappeared) and DC was a “little bit” disappointed about that BUT Mr. Ballard DM’d me a photo just for DC and the Looped people were very responsive and said they would try to get a screen shot of his footage.

(Photo’s have been edited as not to reveal DC’s real name)

 

Unlike his mother who can’t take a compliment at all, DC will always agree with every compliment that comes his way.

During their phone conversation, Mr. Ballard told him that he thought he was awesome. DC agreed (because he always does and in mu opinion, he is). Mr, Ballard got a kick out of that. So when he got his message after the conversation, I had to reiterate that, yes he still agrees.


 

 

Originally we were supposed to receive a recording of the conversation within two weeks of the event, but we received ours the very next day! I was able to grab a screen shot which looked exactly as the selfie would have.

DC was excited to have the selfie and to listen/watch the recording again.

As much as I would LOVE to post the recording here, I can’t because his real name was used. I didn’t want to have Mr. Ballard call him DC instead of his real name just for the purposes of posting it here. I wanted the call and the recording to be for him and about him.

I did post it on my personal Facebook page and I believe that Mr. Ballard has garnered a whole new crop of fans.

Thank you for putting on this event. It has been one of the brightest spots for DC throughout this quarantine.

We would definitely do it again!

*******

In other news: I am now the proud owner of FOUR (yes I said FOUR) cans of (fake) Lysol!

It was a great day all around!

Quarantine Diaries – Part 9: Story-time With DC

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In an effort of trying to keep this guy busy, we have been recording stories (and some songs) to post on our Facebook Page (Take Another Step). DC is having fun with it.

If you follow our Facebook page, you may have seen some of these before, but maybe not all.

I was looking around for a short book for DC because I thought it would be fun to have him read a story for the Take Another Step page. Instead I found this book that I wrote as a joke for Christmas 2008. The original intent was for me to write this story and DC to draw the pictures, but that proved to be too much for him (he did draw some, though). It IS A TRUE family story about an event in the mid-seventies when I was a kid and we had a squirrel trapped in our basement for about a week. We did call it the killer squirrel at the time and all the events written about in the book actually did take place. All of the names mentioned in the book are some sort of variation of the actual person’s name so they we all able to recognize themselves in the story (even if they were too young at the time to remember it)

DC had a hard time with some of the words so he opted for me to read and he, the page turner.
This was an impromptu story-reading, so please excuse the camera work and me stumbling over the pages I could not see from over DC’s shoulder.
THE TALE OF THE SQUIRREL

 

 

Our Next Story, DC was able to read himself. We only practiced once before recording. I may have posted this one in another Quarantine Diaries post, but in an effort to keep them all in one place, here it is again.

So first…there are supposed to be subtitles. I spent a long time putting them in, but I don’t think that it worked. I can see them but others reported that they could not. If you opt to turn on closed closed captioning, I cannot be held responsible for the way YouTube interprets his words!

Anyway, DC wanted to read one of his new (believe it or not) favorite stories… Chicken Little
We had fun making this. (Yes, I am aware the he keeps touching his face. He washes his hands before and after every activity he does because I can’t make him stop) 

 

 

Doug is a “Job Coach” at a SPED Transition program. Due to all of the schools closing, he was placed in charge and created a virtual music program. One of the things he does twice a week is make up songs for his students. Most are about the virus, how to help at home, etc.

(I did find a subtitle program, but it takes a very long time and as you will see; I am not very good at it yet. One of these days I will go back to add proper subtitles to Chicken Little)

DC helped Doug out by singing a Doug “original” (part of it anyway) for Doug’s students – some of the words were difficult, so he only sang two verses – you will have to sing on your own for the Disinfectant and Covid-19 verses  and then make up your own verse using Vitamin C – we have supplied the words and music!

 

 

This last video has not been posted anywhere yet. We will post it to our page on Monday. You are seeing it first right here.

The Tale of the Lion and the Mouse.

 

He is looking forward to telling some more stories and singing more songs for Doug’s students. We are hoping to get DC’s best friend, BB to help him sing a song, tell a story or both – so stay tuned!

***

Updated: Just one more (this was posted on another installment but I decided to add it here so they are all in one place)

DC had a hard time with this one. He thought it was hilarious and wanted to do it, but he got so serious trying to get the words right that I asked him more than once if he was having fun. If he wasn’t, we did not have to tape it. He insisted.
These Are Ways To Help At Home (another of Doug’s songs for his students)

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DC and BB Do Christmas in EUReKA

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Just a little bit of ‘cross-posting’ for the Holiday Season from our EUReKA podcast.

DC and his best friend BB co-host the two EUReKA Christmas Episodes.

DC has co-hosted a few times with me in earlier seasons. It was difficult for him. I normally had to play the episode silently for him and ask him specific questions about what ever scene we were talking about and then still I sometimes did not get a response and had to prompt a response out of him. There were also times when I just had to go back and record me asking him questions, getting his answers and then insert them into the already recorded episode. Although he wanted to do it, he found it difficult to sit through an entire recording session.

When BB is with us, DC seems to be able to sit through the entire recording session, without watching the episode on mute. He answers questions and even adds his own two cents with out prompting. I am really proud of both of them. (BB does have his own on-line radio show, Wbjb101’s Show so talking “on mike” is not new to him, but talking about an episode of a TV show surely is). They both did a bang up job!

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The first episode, aired after the mid-season finale in the original run of the series.

Our podcast episode was published on August 21, 2019 in the same position.

S4-E10 O Little Town

Vickie is joined by DC and his best friend BB for one of DC’s favorite episodes of Eureka – O Little Town – a Christmas episode of course.

We had fun recording this but it did get very noisy! So please try to ignore all of the background noise and enjoy the episode.

“Sheriff Carter relates a Christmas story in which the defensive field malfunctions trapping everyone in town for the holiday. So Fargo throws a big party, unaware that the town is shrinking. All from a quest for the perfect fruitcake” ~ IMDB Description 

If you are a first time watcher, we suggest that you watch the episode BEFORE listening to this pod cast.

LISTEN HERE:

Or Listen at Podbean

Download: here

Also Available on Google Play

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Episode number two originally aired at the end of the 4th season. Our podcast episode was published on November 20th in that same position.

 

S4-E21 Do You See What I See?

Vickie is joined by DC and his best friend BB for DC’s favorite episodes of Eureka – Do You See What I See? – a Christmas episode of course.

We had fun recording this but it did get very noisy! So please try to ignore all of the background noise and enjoy the episode.

Sheriff Carter and Allison Blake are secretly planning the perfect holiday surprise for their kids, but a mysterious kaleidoscopic wave of color crashes over Eureka, leaving the entire town and its inhabitants animated.

Listen Here

Or Listen at Podbean

Download: here

 

Also Available on Google Play

Theme Music: That Positive Feeling (Loop) – Track

By: alumo

Standard License

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Happy Holidays from DC and BB (and me too!)

 

 

The Many Meanings of “Sorry”

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I wrote the post below six years ago. If I were keeping track, I would have to imagine that “Sorry” would most certainly show up in the top 5 on the list of DC’s most used words.

Some of the time, he IS sorry for something or another, but as I have said and written many time before, he really does not understand what “sorry” means. For him it is just something to say when he thinks he’s done something wrong, when he going to do something he shouldn’t and for many reasons that really don’t have anything to do with being sorry.

This morning, I, (“grace”) tripped over the coffee table, broke a coffee cup – spilling the contents on the way down and smacked my arm on said table hard enough so it was bleeding. DC told me he was sorry. In cases like this, I am never really sure if he thinks he has done something or is he reversing things and really thinks that I should say that I am sorry for falling over the table. Or… as a speech therapist once told me, is it his go-to word that he uses when he does not know what else to say?

I explained as I do every time he says he is sorry for no reason, that he did not do anything and there was nothing for him to be sorry about.

I have come to realize over the years that “I’m sorry” is not only used for the reasons above and in the post below. Sometimes he uses it as his way of telling me that something is bothering him….

The other morning his iPad broke, right before he was ready to leave for work.

I know you all just stopped breathing (as did I) in anticipation of the fallout.

Surprisingly, the fallout was minimal. He was upset but calm. For once, he did not apologize for something that was not his fault. He listened to me as I told him I would have to buy him a new one but he could use his phone or my “tablet” in the meantime.

He repeated all of that back to me a few (or more) times before he left. I, in turn had to verify all of what he was repeating and repeat it all again to him.

His transport arrived and he left.

Just like that.

My phone rang on my way to work. It was DC (Spontaneous phone use… Yay!).

I said “Hello” and the first thing he said was:

“I’m sorry”

I did not know what he was sorry for now. I thought that maybe he did something at work and he was now telling on himself – something he does often.

But, no. When I asked him what he was sorry about he said:

“No sorrys. Mom will buy new iPad.”

He was worried about the new iPad more than he let on before he left. It was bothering him. He wanted to talk about it again.

Saying “I’m sorry” is his way in to a conversation about something that is bothering him.

The iPad was bothering him,

He wanted to talk about it.

He called me (again, spontaneous phone use – I will take it)

“I’m sorry” helped him to start the conversation.

 

 

“Happy?” – “Sorry” – What’s next?

Yes, John Lithgow is "Happy"

Yes, John Lithgow is “Happy”

Years ago, DC and I were out doing errands. We had to have stopped at 3 or 4 different stores, which at the time was very difficult for him. By the time we got to the Health Food store, he was so out of control that the cashier saw fit to stop the line to try to educate me about just what vitamins, etc. I should be giving him to combat his ADD – (Holding up a line of customers to give me advice in front of all those customers, was just what I needed). I informed him that my son had autism, not ADD, but thank you very much!

On the way out, I said “I am not very happy today”. That one single comment led to years of DC asking everyone if they were happy. He did not have many “words” under his belt at the time, but he did manage to ask everyone he met if they were “Happy?” (Can you say “guilt”?)

* We have an autograph on a golf card from John Lithgow making it clear to DC, that yes, he is “happy” (see photo).

Eventually he stopped asking people if they were happy and the “Happy” question was replaced with “sorry”. I am sure this is my fault as well. Somewhere along the line I must have told him to say he was sorry for something and there it began.

He is sorry for absolutely everything! Partially because he believes an “I’m sorry” will get him out of anything.  He thinks that saying “I’m sorry” even when he doesn’t know what he is sorry about will get him out of anything or at least get me to stop talking. When he really wants to bring it home he will move on to: “I’m ‘ter-bly’  sorry” or “I am soooooo sorry”. He will even throw in a “Can you ever forgive me?” (movie line) when he really thinks it is necessary.

He says he is sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he is covered, he already said he was sorry. Or he will say he is sorry when he is about to do something he knows he shouldn’t. He is covered- he already said he was sorry!

He says he is sorry when he asks a question and the answer happens to be “no”. In his mind, “no” is a negative even when it is just an answer to a question. I have tried to explain all of this to him but as much as I try to simplify there are just some things he will never understand.

Don’t get the wrong impression; he is not upset or anxious when he says he is sorry. It is just a word to him. He does not constantly think he’s in trouble. It is just something for him to say….. over and over again.

A few days ago he somehow figured out from one of his books that the word “Sympathy” in a way means “sorry”. So on that day, DC was “in sympathy” for sneaking chips.

I think I might like that better.

 

Cheerios and the Order in Which They Shall Be Eaten

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DC was always a big fan of Cheerios. He eats them every day for breakfast and sometimes just as a snack.

His ‘weekday’ breakfast consists of dry Cheerios (no milk, ever), a banana (you knew that), an apple, a glass of orange juice and a glass of water.

Over the last few months or so, I noticed he was not finishing his Cheerios. He was handing back the bowl with only a few spoonfuls being eaten.

First I thought that he just decided he no longer liked Cheerios. It would not be the first time that he LOVED something for years and then just stopped eating it.

I got him a different, agreed upon cereal. He liked it but again started handing it back to me after only a few spoonfuls.

I started thinking that there was something wrong with one or more of his teeth and maybe it hurt to chew the cereal. He said “yes” and pointed to his tooth.

I took him to the dentist and they found nothing wrong.

Yes, I know! I asked a leading question and got the answer he thought he should give.  I should know better at this point.

Thinking that maybe he was just becoming impatient with the chewing and just wanted to finish and move on with his morning, or that because he had lost so much weight, he really wasn’t that hungry anymore – I started giving him much smaller portions.

He still handed it back to me after a few bites.

We alternated between the Cheerios that he still insisted that he loved and the Chex that he still said he liked, but he still handed it back to me.

Hmm.

Everyday after he finishes eating the food portion of his breakfast, he takes his juice and water to the other room and finishes it while using his iPad and writing his ‘princess papers’. This is what he has done every single morning for years.

I realized that I was partially correct with my ‘impatience’ assumption when one day I after he handed me his cereal bowl, I moved it to his ‘spot’ in the other room with his iPad and princess papers. He finished it while he was watching/writing.

The other day he handed me his cereal and said “I want to take a break”.

“I want to take a break” was new, usually he says “finished” when he gives me his bowl. I realized that the other issue was that he would not eat his apple or banana until he was finished with his cereal.

WE

EAT

ONE

THING

AT

A

TIME

I told him that it was okay to eat a little cereal and then have some fruit and then go back to the cereal.

He could even have some banana first! (GASP)

He thought that notion was just too hilarious to even consider and I must have been joking.

So I moved his cereal into the other room.

With that gone, he was able to eat his banana.

And with that gone, he moved onto his apple.

Bottom line; he thinks he has to finish one thing before he moves on to another. If he wants to move on to the other before whatever he chose to eat first is gone, it has to be removed from his sight (even if he does still want to finish it) until he has eaten whatever he wants to eat next.

He just can’t have it there in front of him.

And, so….

he ate the rest of his cereal in the other room.

****

Updated (before publishing): Although DC seemed to brush off the talk we had the morning before and ate his cereal in the other room – it must have sunk in later on.

The following morning he showed me his bowl and said:

“I want to take a break”

Me: “Okay”

Instead of handing it to me to remove from his sight, he put the bowl down in front of him and started on his banana!!!!

It did not have to be removed and he went back to it later!

He still announced it as if he needed permission, but he moved on.

Progress!

 

Communication and Deciphering DC

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DC’s way of communicating is oftentimes mentioning a tiny detail that no one at the time found important (but it was important to him).

It is my job to go back in my memory to see if I can remember anything that might connect to what he is trying to tell me.

This one,  turned out was not as difficult as some but it took some thinking and questioning. Knowing that too much questioning will shut him down, I had to do my questioning in limited doses.

Trust me….. no one called him a “jerk”. He made that connection all by himself – which is actually pretty impressive.

I posted this conversation on my facebook page in November:

DC was going over his Thanksgiving Weekend Schedule (as we have done daily over the last week).

He was very excited about everything we have planned.

While describing and jogging his memory of the Holiday Stroll from last year that we’d be attending again this year, DC jumped in with…

“I don’t want to be a jerk”

(I’ve never heard him use that word and I didn’t even know he knew the word until today)

Me: What do you mean?
DC: I’m sorry to the people.
Me: What people? When were you a jerk?
DC: At the fire. I’m sorry to the people – jerk like Gaston.
Me: Did someone say that to you?
DC: I’m sorry to the people at the fire.


He does not seem upset at all, just stating facts and still excited about the weekend.
This is going to take a lot of thinking to decipher. I think I have to concentrate on the times he’s been around a bonfire and work from there.#Communication

*****

I will confess that I laughed for an entire day about the “jerk” comment.

Later, I asked him again about the “people at the fire”.

He said: I’m sorry to the people.

Me: What people?

DC: Fire……. Hurt Mom’s feelings.

I had a little glimmer of a memory.

I vaguely remembered that we had gone on the North Pole Express before going to the “Holiday Stroll”. By the time we arrived at the stroll, DC was a “little bit” agitated because …… Arrival Anxiety AND he wanted dinner.  Even though we went directly to a restaurant, his agitation was already in full gear. I remember that he said something mean to me – I don’t even remember what it was, but as soon as he said it, he knew that he had hurt my feelings and the “apology tour” began.

This explained “Hurt Mom’s Feelings” but not the fire and “The People”. I was thinking that maybe there was a fireplace in the restaurant? But who were “the people”?

After thinking about it for a while, it all came back to me. He was talking about and combining two different incidents on the same night.

After we left the restaurant, we walked up the street and waited in line for the horse and carriage ride (it was a long wait). After the ride we continued on the stroll where he saw Santa outside of the ice cream store and next, outside of the bank, a musical trio of girls that could not have been more than 14 years old. We stopped to listen for a minute – only a minute because DC decided he would announce loudly, while blocking his ears (while standing only 10 feet from the girls) ……

“No! Stop Music! Want to Go. Stop Playing”

Yes, it was a long day, yes, I got it. I knew it was not about him not liking the way they were playing but I would have to assume that the girls would have no reason to think that it wasn’t about the way they were playing. And, yes there was a bonfire.

bonfire

 

So listen, DC has autism and I understand his reactions BUT everything he does is not because of his autism. I know the difference between him having a hard time because of autism and him manipulating the situation to get what he wants.

We left that area and continued on our way down the sidewalk toward the green for the tree-lighting. I took that opportunity to explain to him that he acted rudely and those girls probably thought that he did not like their playing.

<Insert> Another “Apology Tour”

Having figured all of this out, I asked him where he heard the word “jerk” because I would have expected him to have said “rude” because that was the word I used at the time. Knowing that new words often come from movies that he’s seen, I was not all that surprised when he answered:

“A Christmas Story Live”

Not that “jerk” is a word I would have taught him, or would like him to continue using, BUT it is impressive that he took a word he heard in A Christmas Story Live, related it to Gaston from Beauty and the Beast and THEN related it to his own actions that night.

After laughing to myself all day, I did explain that he was not a “jerk” and that it was not really a nice word to use.

Now…… if anyone can help with this one, I would be eternally grateful:  Snowvee, Miss Snap, Teacher, Good Time ….. Anyone?

*****

This has been a Finish The Sentence Friday Free-For-All –  “share a photo and the story behind it” post, or with a 2018 review, or anything else…… Free For All.

Finish The Sentence Friday – hosted by Kenya at Sporadically Yours and Kristi at Finding Ninee

 

 

 

 

 

 

Summer Reruns: Shore Leave

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Four years ago this weekend, we made the ‘Trek’ to Baltimore to attend Shore Leave…… yes, everyone puts up with me and my Star Trek obsession.

The previous October, we made it to New York Comic-Con. I was nervous – it was so crowded, but the hope of meeting Felicia Day, kept DC pretty much on track. He also got to meet William Shatner and the Real Mike Tee Vee. All were very nice to him and he was very, very happy.

A few years back a friend of mine told me about “Shore Leave“,an event held in Baltimore every August. It is smaller than ComicCon and the original plan was to try this first, see how DC managed it and then move on to the bigger ‘Con’ in NY at a later date. Somehow we ended up doing it in reverse. But, since DC did so well at Comic-Con we decided  Shore Leave would be a breeze.

To Boldy Go....

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.

Today, he is verbal but will still, at times use his signs in conjunction with his speech – that “Mr. Spock” sign has come to represent Star Trek in general for him and he still uses it.

We left on Thursday afternoon as soon as DC came home from his work program. It took a full 8 hours to get there (traffic). It was late but at least we would be there to spend some time in Baltimore on Friday before Shore Leave opened on Friday night.

Reading the Shore Leave schedule, I noticed that there was a “Rock, Paper, Scissors, Lizard, Spock” tournament at 6pm. DC loves the Big Bang Theory and thinks “Rock, Paper, Scissors, Lizard, Spock” is the most hysterical thing he’s ever heard. He does not really know what it means, the words are  just so funny to him. I thought if we attended the tournament, he would see exactly what it is…. a game.  I didn’t think he would actually understand the game, but at the very least he might understand what they are talking about in the show.

When we first walked in, the moderator was explaining the rules, reading from a very confusing T-shirt, complete with diagrams and pictures of the signs. One of the participants piped up “That boy (DC) has the directions right on his shirt” – I don’t think the moderator appreciated this, he looked up, sighed and went right back to explaining with HIS T-shirt. DC got a kick out of the tournament and asked me more than once “to play“. I knew he really didn’t understand it and thought about asking the moderator if someone could play a quick game with him when they were finished, but during the practice rounds I did with him, I could see he really didn’t get it. He just threw whatever I threw. I told him he could play against me. We played at the table while the tournament was in progress. This seemed to make him happy enough.

After the tournament we were walking down one of the hallways and I noticed the TARDIS in the corner and pointed it out to DC. He recognized it immediately yelling,  “Dr Who” We went to check it out. It was a photo booth. I don’t know what sort of directions the man gave DC when he was in the booth, but I could see from the computer screen outside that every time “Look at the Camera” came up on the screen, DC did something with his hands and his face, when the prompt was not there he sat looking at the screen normally. I’m sure he was following his understanding of the directions the man gave him.

He also happened to find a pair of TARDIS slippers. There were only two pair on the table, but thankfully one pair was his size. He was pretty darn happy to get them. He has a “thing” about slippers lately, I don’t know why. He has a few pair of slippers at home but never wanted to wear them, all of a sudden he loves slippers and wears them all of the time. The Tardis slippers were a nice find for him.

Pictures taken, slippers purchased, now DC was beginning to get antsy. He had enough for one night and as you may or may not know, DC’s favorite thing when on vacation – besides bookstores and restaurants, that is – is the hotel room. He really just LOVES hotel rooms, so he was anxious to get back to “his” desk and all of his “stuff”.

On Saturday morning, we decided to take in the “Fairy Tale Panel” back at Shore Leave. DC must have been much more exhausted from Friday than I realized as he fell asleep and slept (in the front row, mind you) throughout the entire hour. 200lbs of dead weight hanging on me the entire time – just what you want when you are running a panel, someone fast asleep in the front row!  He did also sleep through the Once Upon a Time panel at ComicCon, but at least it was a dark room and we were nowhere close to the front. I suppose it could have been worse, he could have been snoring.
Saturday was much more crowded than Friday night had been. We tried to stay away from the most crowded areas, but refreshed from his “nap”, DC made a bee-line to the Buffy doll that I knew he wanted but refused to buy the day before – I think he was just too overwhelmed on Friday night to know what he wanted until he found the Tardis slippers, that is..
We had purchased tickets for 3 photo ops the night before, but we still had a little time to kill, so we went to the autograph tables, which surprisingly, were not very crowded.

Our first stop was Robert Picardo. I explained to DC that he was once on a Star Trek (Voyager). His sign read “I’m the Doctor”. This confused DC, he knew it wasn’t David Tennant, the only Dr. he is aware of, but the sign did say “I am the Dr.” so he called him Dr. Who.

– just following directions, Doc…….

We moved on to Michael Welch. He was exceptionally nice to DC – really, they all were.

We then headed to THE most confusing Photo Op line ever. We had tickets for 3 Photo Ops which meant we had to get in line 3 times. The lines did move quickly, but it was all very confusing trying to figure out where we were supposed to be.

The woman at the entrance to the photo room just Ooo’d and Ahh’d over DC every time we arrived for a photo. “Oh! Look at him, he is so excited!” – he was, plus there is no one that loves to have their picture taken more than DC does.

His first photo was with Robert Picardo, “Dr. Who” from a half hour earlier. He didn’t call him Dr. Who this time even though he was wearing a Dr. Who shirt (he didn’t have his “I’m the Doctor” sign with him and it wasn’t David Tennant on his shirt).

Next up was Eve Myles. She was a few minutes late getting to the photo room and when I saw her coming down the hallway, I got a little bit anxious. Her hair was much longer than it is on TV and in photos. DC LOVES long hair, LOVES it! Before we were faced with another  ‘Snow White Incident’ I launched into “the rules”.
“DC, you can not touch her hair”
“Okay Mom”
“DC what is the rule? – Tell me”
“Don’t touch your hair” (the usual pronoun confusion,but I knew he understood)
and then….. just for good measure…
“DC, what is the other rule?”
“Don’t pick up the people”
and he didn’t……….

Next and thankfully, last as DC was tired of getting in and out of lines…. Silas Weir Mitchell. I love Grimm. DC has seen it a few times, but I don’t think he really knew who he was. It didn’t faze him because, someone was taking HIS picture and isn’t that really all that matters?

At this point, DC was starting to get edgy. Our last stop was the Eve Myles autograph table. We had a good 1/2 hour wait until she was finished with the Q&A she was leading. We slipped inside to listen and more importantly to move DC out of the hallway.

He didn’t want to sit down.

He didn’t want to stand where we were standing.

He didn’t want to stand in the next place we moved to.

We moved close to the door and he seemed okay with that.

But then a staff person came over and told us we couldn’t stand there so we moved back to the hallway.

We decided to just wait at the table.

There was a wonderful lady sitting at the table who just happened to be a Special Ed teacher (we seem to run into Special Ed teachers everywhere we go, she was the second on this trip), she let DC pick out the photo he wanted autographed early. He picked a photo of Ms. Myles from a Merlin episode. We chatted a bit, she chatted with DC a bit as well. She told him he was doing a good job waiting – he loves compliments….. who doesn’t.

The Dalek from the Tardis photo booth was now roaming the hallway “EXTERMINATE!”,  so that helped to keep him occupied until Ms. Myles was finished with her Q&A. When she arrived at the table, the woman whispered something to her and then introduced her to DC. She told her that he was waiting a long time for her. He was first in line for her autograph, she was lovely to him. He was thrilled…..

but he was also “done”.

I didn’t try to push him to do any more. We arrived that morning at 9 and it was now after 3. That was a long stretch for him, even with the nap. He had a few sketchy moments throughout the day, but I really I think, overall he did a fantastic job!

In the words of DC, “We all had a wonderful time”

except for this guy…………..

this guy....

this guy….

 

*****

(This post was originally posted as “To Boldly Go” in August 2014)

Please Translate – “Mom’s Office”

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This post is yet another in a long line of posts about the way DC communicates or is not able to communicate.  Let me first say, in case you are new here; although he was non-verbal until he was seven years old – DC is now what you would call verbal.

Since is is the last day of Autism Awareness Month, I decided we could talk about communication one. more. time.

Verbal does not always equal communication.

He can recite lines from movies. He can usually tell me what he wants. He cannot always tell me when there is something wrong or if something has happened. Even when he has the words, he cannot always use them to communicate what he is trying to tell me or anyone else.

There are times when he will still use his sign language to help in his communication when something is important enough to him. In most cases if I do not get what he is trying to tell me right away, he gives up and just says “Nothing wrong”. Once we get to “Nothing Wrong” the conversation and whatever he was trying to tell me is lost.

As I have written before; one of the hardest things for DC to convey to me is when he is not feeling well or if something hurts.

Over and above the fact that he DOES NOT want to go to the doctor or “rest” at home, he does not often have the words to tell me when he does not feel well.  Or he DOES have the words, but cannot put them together or figure out how to use them in certain situations.

This is an example of a conversation we had just the other day…

DC came running into the room stimming wildly and it was apparent that he was upset about something.

I asked him what was wrong.

DC: “My heart is beating, beating, beating”

Me: Does your chest hurt?

DC: “No! My heart is beating – boom boom”

I do understand after all of these years that his “Heart Beating” means that he is upset about something or something scared him. It does not have anything to do with his heart but I always ask (just in case) if his chest hurts.

Me: Can you tell me what happened?

DC: (pointing to his mouth) Sink!

I went into the kitchen and he pointed to the sink – which was relatively clean.

Me: What happened?

DC: (annoyed that I did not understand) MOM’S OFFICE!!!!

Now, knowing DC as I do, I had to search my brain and think of something that happened to him at some point over the years when he was at work with me.

Fortunately, I remembered.

He was in Middle-School. MIDDLE SCHOOL!

When he was younger, he would “tell” everyone that he was sick; actually he would just sign “sick” with no other details. Most of the time he was not sick at all, but he knew the school nurse had jellybeans in her office so that is where he wanted to be! Then he discovered when he was finished with the jellybeans that they would call Mom to pick him up. Most of the time, knowing that he really wasn’t sick, I would pick him up and bring him to work with me – which he loves, so I wasn’t really winning any battles there, but I had to work. (We’ll forget about the ONE time, he threw up all over my office, the ONE time he really was sick and no one believed him. I guess he showed us!) ~ From:   Look in the Mirror and Spit Cookies, September 2013

Me: Did you throw up in the sink?

DC: Yes!

Obviously, not very much and he must have run the water before coming to get me. He has been jumping and dancing around the kitchen so I suspect that all of that activity was the cause of the situation as he did not seem sick otherwise.

Since the “Spitting Cookies” incident (linked above and here) he has learned and does know the word. He has used it before, but just could not figure out how to use it to tell me what was wrong.

The plus side of it all is that he tried to tell me and did not give up (although one would have to be me in order to figure it out). He does that sort of thing often. He brings up an example of something that happened at an earlier time to try to get his point across. This often works with me, but everyone else that he deals with in his day to day life do not have all of this information stockpiled in their memory and often do know know what is important enough for him to remember. What is important to him is not always what others would even give a second thought to.

Verbal and Communication?

Two very different things.

 

 

 

Speaking of Love

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There are many words and phrases spoken by DC that are not pronounced properly. Most of the time I will help him to try to pronounce them correctly or at least a little closer to correctly so others are able to understand what he is saying.

There are also a few other words that are not pronounced correctly that I happen to adore his version far too much to correct him. That list is growing shorter and shorter because someone always comes along and decides that they just HAVE to teach him how to say it the “right” way.  It kind of takes a little chip out of my heart each time it happens.

Below is one of my favorite posts about one of my favorite words….

So far, no one has taken it upon them self to try to change it and should not even think about doing so.

Just don’t.

“Mom, do you love meeee?”

 

I love you Magly

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.

DC can and does tell me that he loves me many times a day – complete with and accompanied by the “I love you sign”. I know that he understands in his own way, what that means. This is not to say that I believe it is always all about me. Much of the time it is but there are times when he just needs to have something to say. It’s kind of a comfort thing for him. He says it over and over again when he is in an uncomfortable situation or a place that is new to him.

But, back to me….

I especially love it when he, at 25 reverts back to “I love you Mommy” instead of Mom, Mother or Vickie.  He is probably one of the most lovable people around and I am willing to take complete credit for that.

Is it just learned behavior and not real emotion?

Is it comparable to the times that I have to make a rule because I know he does not understand something?

Is he just, in his mind, following another rule?

Is he just going through the motions because that is what he thinks he should be doing or how he should be acting?

I used to wonder about that when he was younger but now I am convinced that although I am sure that some of that lovability was originally something that he learned, it IS also very full of emotion.

All of the above does not mean that he does not hear his fair share of yelling because let’s face it, every behavior can not be blamed on his autism.

When these situations arise and he is “in trouble” and after I start finding his apology notes everywhere – we always sit down and have a talk.

“No matter how upset Mom might get when you do something you are not supposed to… I always love you. When you are in trouble, I always love you. You never ever have to worry about that.”

When he is “in trouble” and we have not had the talk in what he thinks is a timely manner, he will come to me and say “Always ‘loves’ you.” He knows it, but he needs to have the talk. It’s a ritual and it is comforting to him.

DC’s ongoing “I Love you” campaign has evolved recently. While all of the above still holds true, he has added, ” Mom, do you love me?” (in his high pitched squeaky voice with the emphasis on the “me”).  I know he is not questioning the fact. I know he knows this and I know that he just wants to hear it again. I also know that this line must be something he picked up from a book or a movie because he is using the correct pronouns.

Just to change it up a bit, my response to this question is: “I love you madly”.

Just to change it up a bit more, I will ask: “DC, do you love me?”

His response is another in the long list of words/phrases that he uses that I know I should correct speech-wise, but I do not because I love the way he says them. I hope that this response never changes.

Mom, I love you ‘Magly’.

No corrections necessary……….

We are all very different

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Below is a comment I made recently on another blogger’s post (See: I can’t let it go). Due to the long-windedness of it, one might assume it was in opposition to what was written. Believe it or not, it was not. I did agree with much of the author’s points and began my comment by saying just that. It just so happened that this was the time and this was the post that I randomly chose to get it all out of my system. Apparently I did not accomplish my mission to get it all out, because writing it in a comment did not keep the subject from gnawing at me so I am copying most of it here and adding the things I have already said said over and over again after the comment.

“I have done my share of complaining *on my blog* but the complaining is never directed at my son, it is directed at the people who do not understand my child or the people/professionals who should know better. I do not go into detail about melt-downs or behaviors and I certainly share and celebrate all of his accomplishments.

I do not mourn my child.

I do not mourn my life.

The only thing that I mourn or worry continuously about is his life after I am gone. He cannot live on his own. He cannot take care of himself. He does not understand danger. He does not understand when/if someone is taking advantage of him. He has no siblings *so there is no one that I can count on to take care of him after all of the adults that have been appointed are gone*. He is verbal but communication is *difficult* so he cannot communicate when something is wrong.

Even though I have taken all of the steps that I can to make sure that as much as possible is in place for him when that time comes, he will, I am sure have to live in a group home when I am gone and that terrifies me. He will be at the mercy of strangers.

I want him to be as happy as he is right now for the rest of his life. I do not want to think about him being abused, hurt or treated poorly. I do not want to think about him not having his beloved books, markers, band aids, dolls or computer. I do not want to think about him not understanding why – *if  any of the above concerns come to be*, this treatment is happening to him.

This is why I write about him. This is why I tell stories about him so that maybe people will understand how his mind works and understand that not all autistic individuals are the same. This is all that I can think of – every . day . of . my . life. I love my child more than I could ever have imagined that I could love anyone and I live in terror of what will happen to him when I am not there to protect him.

This is not about my life, it’s about his – his future. 

*Maybe other parents who have more than one child do not worry about the “later” as much as I do because they know their child will be taken care of, but this is my reality.*

Although I do not agree with some of the blogs, articles and videos out there, at all. I do think we need to shine a light on the fact that everyone is not the same. Maybe not in the way it has been done recently and not in the words that were used – but we do need to see every side. We don’t need to share every detail – I don’t but I understand that some people do. It is sad that all of this is causing so much upheaval in the *autism community* – there has been enough of that already.“

 

 

This is not to say that I don’t have hope. I always have hope. DC, even at this age continues to make progress – little things and small steps, but it is there. I hope that I will be able to find someone his age that is willing, not to take him in but to be there to see that he is being treated the way I want him to be treated, to see that he has the things that he needs and wants, to see that he gets the proper medical attention, to see that he is able to go places and participate in the activities that he loves.  This is where my hope lies.

I had a coworker who after listening to a now ex-coworker complain about having kids, having to work and the fact that no one understood her situation, said “Are you kidding me? Vickie has given up her whole life for her son”. I suppose that was meant to be a compliment, but no; I have not given up my life and it is sad that some people might see it that way. He is my life. I do not feel as though I have given up anything. Sure there are times when I would like to leave the house without having to find someone to watch him, or go to the store without waiting for him to go though his entire ritual before we can leave – where I could have been there and back by the time all of that happens. I would like to not have to worry so much about him when he is not right there with me. This is not giving up my life. I am sure I complain at times; as anyone might complain about their children once in a while.  This is my life. I do not feel as though I am missing out on anything.

DC is happy. That is apparent to everyone who meets him or knows him. He has his days, but doesn’t everyone? He is happy. He is healthy. He loves his life. I know this.

I tell stories, sometimes with humor; sometimes not. I tell stories because if I were to try to explain autism – his autism to anyone, I would be talking for hours and still never be able to give a true picture.

I tell stories to show you how his mind works. I tell stories to show that even when your child hits adulthood (he is 26), you could be going along on your journey and BAM, seizures start at 24 – or BAM, new or old behaviors crop up.

I tell stories because NO ONE is the same.

Everyone’s life is different. Every child is different.

I wrote a piece a while back about death. I wrote about the death of my stepfather because I was not and really am not sure that DC understands death.  I had someone comment that her son is autistic and she was there to tell me that DC absolutely does understand.

No! It does not work that way.

Everyone is different.

I wrote a piece about whether or not DC understands that he has autism (we talk about it because I never want him to think it is a bad thing) and I got a comment saying “I am autistic and believe me, he understands”.

No! It does not work that way.

Everyone is different and unless you know my child and have spent a lot of time with him, you can not tell me what he does or doesn’t understand.

I wrote a piece about all of these worries before, the comment: “I am autistic and I can live on my own – he will be fine”

No! It does not work that way.

Everyone is different.

I guess this has been my point all along. Everyone is different. We need to see that instead of bunching everyone under the same umbrella.

We may not agree with the videos and posts that have been out there recently and I agree that no one should be made to feel as though they are a burden, these people are talking about their children, not autism in general. They are trying to show the side we do not normally see. I do not agree with a lot of it but I do not think that they are trying to demonize autism. They are talking about their life and only their life and oftentimes are posting these items during some very raw moments.

Let’s face it; we all can feel sorry for ourselves once in a while. It happens to all of us. Maybe when we see or read something like this we should not begin with bashing. Maybe we can try to look deeper and maybe even have a discussion. No one will ever be able to see a different perspective when we begin with hostility.

Everyone is not the same.

*****

*Added to the comment for further clarification here