“WE HAVE TO GO TO THE MONEY MACHINE!”

 

DC called me from his van to tell me he is “Going Home Noooowwwww” as he does each day. The conversation is always the same (and I know you have read this before as he rarely goes “off script”)

DC: Hi Mom

ME: What are you doing?

DC: Going Home Noooooowwwww

ME: Did you have a good day?

DC: Great

ME: What did you do today?

DC: Dog Bones Room

ME: What did you do?

DC: Rolling the dough.

ME: Anything else?

(Usually the answer is “no”)

DC: Tied the bows

(I imagine this means he packaged the dog biscuits)

ME: Oh, that’s cool. Okay call me when you get home.

DC: (loudly) WE FORGOT THE MONEY!

ME: What money?

DC: We forgot the money for lunch.

ME: (knowing that he had enough money for lunch) What do you mean? Did you pay for your lunch?

DC: Yes.

ME: Are you sure?

DC: No.

ME: Did you have money for lunch?

DC: WE HAVE TO GO TO THE MONEY MACHINE!

ME: DC, what happened to the money you had?

DC:

ME: Did you pay for your lunch?

DC: Yes! HAVE TO GO TO THE MONEY MACHINE!

ME: Are you telling me that you need more money for next week?

DC: Yes!

ME: Don’t worry, I will give you more money for lunch next week, like always.

DC: Next week.

ME: Are you sure you paid for your lunch today?

DC: Yes! Have to go to the money machine.

I still have not determined whether he paid for his lunch or not but his wallet was empty and there was no note from the staff.

As you already know, communication is always difficult for DC. This is the way he communicates and I usually have to figure out what he really means.

We’ll start with notes from the staff:

When DC began attending this program, he did not receive a receipt for the lunch he purchased every day. Apparently they did not give receipts (it is a restaurant open to the public so I don’t know why that was the policy).

One day, probably a year in,  he came home with a photo copy of a guest check in his talk-book.

Nothing else.

No note.

Just a copy of a guest check.

Great, I thought. They started giving receipts.

The next day he came home with a copy of a guest check and an envelope that had “DC’s change from lunch today” in his talk book.

Nothing else.

No note.

Just the guest check and the envelope.

I didn’t know why they were sending his change home in an envelope instead of putting it in his wallet (I still don’t) but assumed that he had forgotten to take it at lunch time and they put it in an envelope to make sure he got it later.

The following day I received a rather nasty note informing me that DC did not pay for his lunch two days before. I asked them just how a person was supposed to know that? (DC was not as conscientious about his lunch money back then). They sent a guest check home WITH an envelope of change, who would come to the conclusion that he did not pay for his lunch. Apparently after attending this program for over a year, they hadn’t figured out that DC does not tell me anything. They Have to tell me.

Moving on to the money: Back then he was new at carrying money, so I only gave him enough for lunch that day. Sure, there were a few times when I forgot. Now that I know he won’t lose it, I give him 20.00 for the week. His lunch is 3.73 per day so I knew he had enough. Not to mention that over the last few years he counts it every night and says “Yay! I have _____ dollars left” so I can I tell him that it is enough for the rest of the week. (We will talk about his money counting skills at another time)

“I forgot” or “We forgot”: This does not necessarily mean that we forgot something (but sometimes it does). Some of the time when he says “I forgot” or “We forgot”, it means that he wants to do whatever he is saying we forgot.

“I forgot to buy band-aids” usually means that he wants to buy band-aids.

Just as “I can’t find ______, anywhere” usually means that he is going to get whatever he says he can’t find.

“I can’t find my CD anywhere” means he is going to get a CD for the car.

But, there are times when he really can’t find something.

It’s hard to know which is which.

(He can communicate what he wants most of the time, but it is difficult for him to tell me about something that has happened or something that is bothering him or anything other than his wants.)

I can only assume that he was worried about having zero bills in his wallet. Normally they use the bills and the change to pay for his lunch so at the end of the week, he comes home with a dollar bill or two in his wallet. This week they must not have bothered with the change and just used the bills every day. There were no bills left and he was nervous about that.

I suppose I will find out next week if for some reason he did not pay for his lunch, but in the meantime we will be heading for “The Money Machine” so he is all set for next week.

 

*****

For anyone that might be new here: “I tell stories, most of the time; single individual stories about this or that. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works, never to “make fun of him”

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies.”

DC and BB Do Christmas in EUReKA

 

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!

********

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

****

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

****

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

 

 

The Many Meanings of “Sorry”

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”

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.

 

Communication and Deciphering DC

 

 

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.

 

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

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.

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.

Rock, Paper, Scissors, Lizard, Spock

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.

K9

Do Not BLINK

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

Please Translate – “Mom’s Office”

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

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?”

 

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……….

Let DC Be DC

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

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

As I have mentioned before:

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

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

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

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

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

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

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

Me: What are you sorry about?

DC: Took off the mustache.

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

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

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

DC: Threw it in the garbage.

Me: Did someone tell you to take it off?

DC: Yes

Me: Who told you to take it off?

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

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

DC: Yes.

Me: Who told you that?

DC: *Donna. I’m sorry Mom.

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

Me: You do not have to be sorry.

DC: Threw it in the garbage.

Me: That’s okay; we have more.

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

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

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

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

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

The points that I want to make here are:

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

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

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

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

Let DC be DC.

 

 

 

 

 

 

That year we weren’t home for Christmas..

 

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

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

He is excited, so I am excited for him.

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

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

No.

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

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

And then I worried about the gifts…

From 2014:

The Christmas Vacation Dilemma

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

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

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

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

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

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

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

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

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

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

Gifts from Mom on Christmas Eve

More gifts from Mom and Stocking from Santa on Christmas morning

More Gifts From Mom and a Stocking from Santa

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

Christmas Eve – ALL of Mom’s Gifts

So…..Christmas morning would be just Santa.

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

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

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

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

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

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

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

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

*****

This is a Finish the Sentence Friday post:

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

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

Envelopes, Bags, Shredding and Communication

 

Last weekend was one of those weekends where DC was just all over me, all of the time. I could not make a move without hearing “Mom! Come here please.” or “Vickie, where are you going?”.

Every step I took, he was calling me, most of the time for no reason at all.

I was upstairs plunging the bathroom sink. I really do not know what the deal is with that sink, but I seem to spend a lot of time plunging it. DC had already checked in to see what I was doing more than once and had gone back to his computer. I had already been up and down the stairs a good 6 times because he always waits until I get to where I am going before he asks me to “Come here, please” so I decided that I would call him for a change.

We had just been grocery shopping and I left the bag that held the drain-o on the kitchen table.

For someone who was so concerned about where I was all day long, it took me six (very loud) tries to get him to answer me.

“DC, please bring me the white bag that’s on the kitchen table.”

He came to the bottom of the stairs with a shipping envelope.

I would understand the confusion if I had asked him for an envelope from the table. The table holds, I can’t even tell you how many envelopes and other papers that I think maybe I need to keep, or that I have to find a spot for, or mail that I don’t really have to keep but has to be shredded or junk mail that has to be shredded before throwing away (Chase, Capital One and AARP – I’m talking to you!). Getting rid of all of it would mean that I would have to empty the shredder – so there it all sits.

(You will be happy to know that I did get rid of about 50% of the envelopes and paper this week while watching an episode of Star Trek Discovery on the computer in the kitchen. All of the shred-able items went into the sink to be mashed up into clumps and thrown away while the shredder sits there, still full… Oh, the lengths I will go not to have to empty the shredder.)

He knows what a bag is, but for some reason the request threw him off. I asked again for the white bag that was on the table. After the second request he brought me the bag, but now I had to worry about what he did with the shipping envelope because it contained part of his Halloween costume.

When I got back downstairs I asked him where he put the envelope. He pointed upstairs – which is where he brought the bag when I asked for it. I tried to explain:

“DC, before you brought me the bag, you had an envelope in your hand. Where did you put it when you came back to get the bag?”

He just began pointing to random places. Places in the living room, in the kitchen, outside, and upstairs.

I even tried to re-enact the whole thing by getting an envelope, bringing it to the bottom of the stairs and saying “No DC, I need the bag on the table” going back to the kitchen and asking “Where did you put the envelope that you had?”

He just could not understand what I wanted.

I did not want to give up because at this point I wanted him to understand the question.

As we were going through the reenactment, I noticed that the envelope was in a box, which was probably right where he found it originally, but I did not let on that I saw it. So I went through the whole thing again, this time pointing to the table where it clearly wasn’t, asking “Did you put the envelope here?”

DC: “No”

Pointing to the empty chair – “Did you put it here?”

DC: “No”

Pointing to the box, where I had spotted it – “Did you put it here?”

DC: “Yes”

“There it is! Thank you for telling me where you put it.”

He was glad that we found it and was no longer anxious about what I was asking for and I hoped that after all of the looking, reenacting, and explaining he finally understood what I had been asking him.

But this, right here is my point. This is why I write these stories. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works.

He has speech – yes. He can communicate – yes. But communication is difficult, he cannot always tell me anything other than his standard scripted answers. He cannot always follow directions. He might understand something one day but the next day he just cannot get it.

A simple question about where he put something took a good half hour to get him to understand. I am not positive that in the end he actually DID understand but we had to play it out all the way so he was not anxious about it anymore. He had to be the one to say “yes, it was there” or he would not feel better about it.

This is DC.

This is how he communicates or at times does not communicate. This is how he follows directions and at times cannot follow directions. This is how he processes questions and sometimes cannot process questions. This is how he processes information and sometimes just cannot process information.

Because he gives standard answers, people do not always realize right away that he is not giving the correct answer to their question. People who know that he may just be giving a standard scripted answer may not realize it when he DOES understand the question and gives the correct reply.  Other people he meets along the way in life are not going to take the time to reenact the whole scenario to get to the answer to that question. It is a constant struggle for him and for me, but we do not give up.

I know at 26 years of age there is not a lot of progress that will be made. I know that we will never get to a point where I don’t fear the future when he no longer has me to help him,  but we do not stop trying. There is always a little bit of progress made – there is always something…..

 

****

I AM absolutely aware that this post is just all over the place but sometimes that’s just how our life is – all over the place.