Quarantine Diaries - Part 13: The Couch, YouTube and Deep Space 9

As you may or may not know; we watch a lot of Star Trek around here but lately in-between the Star Trek re-watches, I have been watching a lot of those reunion panels, like Stars in the House, Reunited Apart and The 7th Rule's Virtual Trek Con (links at the end of this post) on You Tube.

All are not Star Trek Related (The 7th Rule is of course), but I have seen reunions of some of my favorite shows, such as the China Beach reunion.

They are fun and I am sort of in awe of the people on these panels who come and do these things daily for free to raise money for virus-related charities and just to give us all something new to watch during this pandemic.

DC is normally on his Ipad in his "spot" in the kitchen while I am watching these.

Last night, he decided to pack it in early and went to get his pillows, blankets and books to bring to the couch (yes, we are still sleeping on the couch. This may be the longest stretch to date. See: The Couch: Another Round from 2019)

I was watching Reunited Apart - The Lord of the Rings Reunion. I could see that DC was getting anxious. I asked him more than once what was bothering him.

"Nothing wrong!"

But he made a big production of announcing when it was over.

I moved on to Stars in the House - RENT with Adam Pascal and Anthony Rapp and he became more anxious.

Me: Please tell me what is bothering you.

DC: Nothing bothering you.

Me: (re-wording my question) Please tell Mom what is bothering DC.

DC: Watch "Space Nine"

Me: You want to watch Deep Space Nine?

DC: Yes!

So I put on Deep Space 9 and DC happily took his glasses off, rolled over and went to sleep!?!?

After thinking about it for a little while (because you know that's what I do); I could see that there were one of two possibilities for his anxiety here.

1. You Tube is his domain. He may not have ever realized that I was watching HIS You Tube on the TV and you know how protective he is about what's his.

or

2. Deep Space 9 comforts him when he is going to sleep.

I hadn't thought about that.

I may just be watching Deep Space 9 often when he is ready for bed. Because it is my favorite of the franchise, I watch it and pay attention. 

I use TOS and TNG  as a distraction from my "mind race" so I can fall asleep. I need something to distract me, but not distract me enough to keep me awake and since these are far from my favorites, it doesn't matter if I fall asleep and miss the four episodes that play until Nextfix shuts down. He is not awake for that. He falls asleep to the one I am awake and paying attention to.

I don't know which possibility was the cause of his anxiety, but I am thinking it was a little of both.

Links:

Josh Gad - Reunited Apart

Stars in the House 

The 7th Rule - Virtual Con

*******************

In case you are 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."

This blog is used for shorter posts, off topic posts and also for longer Face book statuses. Please visit my official blog site at: Taking it a Step at a Time 

 

A year later……..I know we can’t have it both ways, but….

While driving DC and his friend to their first day of camp this summer; hearing her giggle in the back seat and watching DC “happy stim” in the front seat – both so excited to get to camp to see their “Camp Friends” again, I thought about the post I wrote last summer on their first day.

A year later, I feel exactly the same way. They were so excited to go and I felt sad that they can no longer spend their summer at camp as they used to because they are adults, out of the school system and in a work program. They have to use their vacation time to be able to attend camp for a couple of weeks every summer.

DC has attended this camp since he was 5. At first only a couple of days a week, with support because he was non-verbal at the time, and then when I noticed that he was much more responsive and receptive on the days he attended this camp than the days he attended the “main-stream”  camp, I decided to let him attend 5 days a week. Because DC would rather just sit and read a book than get involved, and this, of course is easier for the main- stream staff,  that was what they let him do. My reason for sending him to camp in the first place was to keep him occupied and involved, so he did not regress during the summer months. The main-stream camps were not providing enough support to keep him from regressing.  They weren’t making an attempt to get him involved with any of the activities, whereas this camp did.

My intention today was to write a new post about the first day of camp, but after re-reading last years post I discovered that there was nothing different about the feelings I had last year and the feelings I have right now. I thought I would be used to  “adulthood” at this point.

It turns out that I am not……

We can’t have it both ways…. but it’s still a little bit sad. – July 2013

Today was my son’s first day going to day camp this summer. He has attended this camp since he was 5 – he’s 22 now.
Every summer he would go to camp all summer long, even staying after until 8pm for a special after camp program they hold twice a week. He loves it there.
Now that he’s 22 and aged out of the school system, he is in a work program, year round. I was shocked when I started looking at programs for him that they don’t have the summers off!
Of course they don’t, they are adults and have to do their job every day, just like we do. But it was a rude awakening for me at the time.
Everything changes after “school-age”. He’s aged out of Challengers baseball. Seventeen years of baseball….over. No more February vacations, Spring Vacations or Summer vacations. He’s “working” now, with 2 weeks’ vacation, holidays and some sick time, just like everyone else. This was probably the hardest transition for me so far. I have to think to call “work”, “work” and not “school”. It takes a minute, when I panic that I haven’t set up anything for February vacation to realize that there is no February vacation any more. Becoming an Adult may actually be harder on me that it is on him. It’s just such a huge change.
Yes, I know we are moving into adulthood and working toward independence; as much independence as his capabilities will allow. Yes, I know this was the goal all along, but on the other hand, he’s still so much a child. He’s still watching “Barney” (22 years of Barney! That’s a Support Group I need to form, anybody?), he’s still reading and watching Disney and is not embarrassed to hug and kiss his Mom. On some level, for me, as much as I always work and hope for more progress, I love it, it’s nice.
This should be a happy time, and of course it is. He is an adult. He is in a program that he loves, but when summer comes around and it’s time for Camp to start, it’s a little bit sad that he doesn’t get to spend a fun-filled, happy-go-lucky summer at camp as he used to. He only gets his two weeks.

Because…..

he’s an adult now………

originally post at Wordpress

Don't forget to call Mom

There are many times, even at this point that I really do not know if DC really understands certain things or if he is just going through the motions; the motions that were taught to him. There are other times that I am surprised to find that he really does understand, even if he is using one of his scripts to communicate it. It is not always easy to tell the difference. I don’t think it will ever be easy, but I do not think that using the telephone will ever be one of those things he completely understands.

I have worked long and hard over the years but DC still has a hard time using the telephone. To begin with, he just doesn’t like it, he doesn’t. When he was younger, he couldn’t even bear to have the receiver on or near his ear. He has always had a very low tolerance for anything having to do with his ears, so using the telephone or just listening to someone that wanted to say hello to him was just unbearable for him.

Secondly, as I stated above,  I really do not think he understands it completely. If he dials incorrectly, he doesn’t understand that he should hang up and dial again, he just keeps dialing. I finally got him to the point where he could tolerate the phone on his ear. He has memorized our phone number, but as he doesn’t always understand the question “What is your phone number”, I don’t know if he would be able to give it to anyone if he needed to. He does know how to call me.

He is still not all that thrilled about using the telephone, though. If he does get a call, it has to be brief. When he’s had enough, he will say nothing and just hand me the phone. I have to tell the party on the other end (who is usually still talking to him, not knowing he’s passed off the call to me) that DC is done talking. Not very long ago when he was talking to his father, he handed me the phone when he decided he was finished, as usual. I handed it back to him and said “DC, you have to say good-bye to people on the phone when you are finished.”

He took the receiver back and said "Goodbye to the people"

He does have an iPhone now. He knows how to use it. He is very good at using iTunes and YouTube, but still the phone part of it is difficult. He is supposed to call me on my cell phone when his transportation arrives to pick him up from work; he does, but it is a script.

“Hello Mom”
“Hi, DC. What are you doing?”
“I am going home Nowwww”
He says this the same way in the same tone, with the same emphasis on the “Ow” in “now” – every day.
“Did you have a good day?”
“Great”
“Okay, call me when you get home”
“Okay”

When he gets home he is supposed to call me from the house phone because I want him to know how to DIAL my phone and memorize my cell number as well.

He does call just about everyday. There were and still are a few days that he forgets and I have to call him. Hearing the phone ring, must remind him he has forgotten to call me so instead of just answering the phone, he picks it up and dials my number while I am on the phone, and then goes though his “at home” script. If for some reason it is not me calling him, the person on the other end gets the script and then he hangs up.

“Hi, Mom I am home”
“Hi DC, is Mrs. H there?” (she has already text-ed me to let me know she is there)
“Yes”
“What are you going to do today?”
“Go to ____” (enter, Library, Track or whatever  activity depending on what day of the week it is)
“That sounds like fun. Okay, I will see you in a little while”
“Okay, Goodbye Mom.”

He does not understand voice-mail or answering machines, even though I let him listen to mine and try to explain what it is, I just can’t seem to come up with an explanation that he can understand. If he does leave a message on my phone, I don’t think he realizes he is leaving a message, he just goes through his script and hangs up, thinking I must not have a lot to say that day???
He will not use the phone spontaneously. This is something I really want him to understand. I want him to think to call me if something is wrong or if he happens to get lost or for any reason at all. I want it to occur to him if something goes wrong, that he should use his phone. I really am not sure that it would occur to him. I’ve gone over this many times, but as many times as he says he understands, I don’t think he does. He has never called anybody spontaneously, he has just about never asked to call anyone. After all this time, he still only uses the telephone when he is told to, to call me from his transportation and to call me when he gets home.

We’ll keep working on it….

A few days ago, I had to leave work early for a dental appointment and then a doctor appointment. The appointments went quickly, so I was home before his aide arrived to meet him after work. He called me from the car as usual. When he arrived home both his aide and I were there. I was talking to Mrs. H in the kitchen. DC came in, he said hello to me and Mrs. H and gave me a hug.

Mrs. H and I were still talking in the kitchen, while DC went into the living room, I thought to have his snack “alone” (he likes to be alone when he has his snack).  My cell phone, which was charging right in front of the phone in the living room, started to ring and I said “I’ll bet he’s calling me”.
From the kitchen, I asked:

“DC, what are you doing?”
“Hi, Mom. I’m home” (from the living room talking into the phone, probably to my voice-mail).
When he is doing what he was told to do, I try not to do anything to throw him off or make him forget to call me the next time, so I went with it.
“Is Mrs. H. there?”
“Yes”
“What are you going to do today?”
“Go to the Li-ber-ary”
“Okay, I’ll see you in a minute”
“Okay, Mom, see you later!” and he came back into the kitchen.

Yes, Rule – followed……
but there is still some work to 

Baltimore, Over the Rainbow and Back – Part 2

After the fun-filled experience boarding the ship (see part 1)  things were looking up. DC had his cheese burger, I had my wine, everything was calm.

The remainder of the day (Friday) was spent exploring the ship. DC as usual, loved the cabin, as small as a ship cabin is, in his mind it is a “hotel room” and a hotel room is way up there on his list of favorite things.
The “Travel Gods” were on my side too; there was NO Disney Channel in the room!!!! (Happy dance!!!) – so DC moved on to his “default channel” (at home he calls it “Two – Five”) TNT, which is perfect with me.

The lifeboat drill, as usual was difficult for him; not because it frightens him, I don’t think he pays enough attention for it to frighten him, it is just the standing in line in a crowd, for that length of time for reasons that he really doesn’t understand and has no interest in. Thankfully wearing a life vest is no longer a requirement, but it is still torture for him and for me as I held my breath and hoped he would make it without incident. He did make it; he got a little loud at times but he made it. He was not happy, no matter how many times I told him how proud I was of him, it took him a good long while afterwards to get himself out of his “anxiety mode”. I’m hoping the lifeboat drill is one of the items taken into consideration (if it hasn’t been considered already) by Royal Caribbean regarding their new“Autism Friendly” cruise status. I understand that attendance is important for safety reasons, but there has to be another solution – even if the solution is as simple as a designated area away from the crowd.

Read More:

http://takestep.wordpress.com/2014/04/16/baltimore-over-the-rainbow-and-back-part-2/

Dc’s Letter to His Best Buddy, Steve

DC has been involved in the Best Buddy program, since he was in middle school. Steve has been DC’s Buddy for the past three years. As I’ve told him many times, he is the best, most involved Buddy DC has ever had. Steve will be graduating from college this May. He will be either heading to Boston or back home. In either case, he will not be living close by any more. We will be sorry to loose him. DC will be assigned a new Buddy next year and that buddy has very big shoes to fill! I am hoping that Steve and DC will keep in touch after he leaves even though he won’t be his official Best Buddy anymore. DC hopes so too.

(Steve and DC – Photos in no particular order)

 

Birthday Bash (DC and 3 friends celebrated their Birthdays together)

Team Trick or Trek 2012

Walking – Camp walk

Halloween 2012

R-Word Rally 2014

2012 Camp Walk

R-word Rally 2013

Camp Walk 2012

R-word 2014

Spring Fling 2014

Starting the walk

21st Birthday Party

Halloween 2012 (?)

Steve and DC – Spring Fling 2014

Halloween 2013 – Best Buddies

Halloween Party 2011

R-word Rally 2013 B

Looking at books at camp walk

DC’s 21st Birthday Bash

21st Birthday – Steve with DC’s support Staff Elizabeth

Halloween Dance 2014

Camp Walk – Team “Trick or Trek”

Spring Fling Dancing

Best Buddies – Spring Fling

r-word 2014 Rally

Steve and DC – BB 2013

Birthday celebration

VisitingDC at work 2013

Camp Walk

Best Buddies 2011 – Party

Halloween 2011

BB Halloween 2013

Halloween 2013 BB

Spring Fling 2013 – DC, Steve and CM

21st Birthday celebration

R-word rally. Steve waiting to give his speech with DC 2013

Birthday Dinner 22nd 2013

Halloween 2012

22nd Birthday Dinner

Spring Fling – Dance 2014

 

The following was written by DC. Of course it took awhile, he didn’t just sit down and type. I asked him questions and he answered them. His answers made up this post.

The content below are DC’s words. It was typed entirely by him (over a few days, as typing more than a sentence or two at a time, is not “fun” for him).

Nothing was corrected or edited. I love it just the way it is.

****************

dear steve

I am happy your are best buddie.

we had lots of fun together .

I liked going to parties and eating food.

I am a good dancer

I will miss you very very much wen you go home .

I hope we will talk on the telephone .

and on the FACEBOOK .

I WILL RELLY AGAIN MISS YOU**.

I LOVE BOSTON

YOUR FRIEND .

DC

***************

and I do believe that he will miss him, very much………………….

 

Thank you also from me. I know it is often difficult to carry on a conversation and/or understand what he is talking about, which is usually why his former Buddies did not show very much interest, but you hung in there. He really enjoyed your company and as much as he does not like to talk on the phone, he DID really enjoy receiving calls from you. We wish you nothing but the best after graduation. You deserve it!

 

**”I WILL RELLY AGAIN MISS YOU” – just another example of Literally Speaking. DC said “I will really, really miss him” and I told him he should write that in his letter.

He then looked to me to repeat what he just said word for word, so he could type it.

I said: “I will really and then write ‘really’ again – miss you” Meaning write really twice.

So it came out as “I will really again miss you....