Quarantine Diaries – Part 11: Sabrina the Teenage Witch

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

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!

****

Click for More Quarantine Diaries

#TravelingWithDC – Star Trek Cruise

Mint in Box

Taking a break from the virus, lock-down, Quarantine Diaries and everything involving it to write about our last vacation.

At this point, our trip seems as if  it happened centuries ago, but it has really only been a couple of months. Please forgive any typos, run-on sentences or just utter incoherence as I seem to have lost all ability to concentrate on any one thing for any length of time during this quarantine.

Those of you that have been here a while, already know that this post is partially a ploy to make you look at my vacation photos. 😉

For those of you new here; this is partially a ploy to have you look at our vacation photos but also it is written with a dash of autism and DC’s perspective (or my perspective of DC’s perspective) of the trip. Do not panic, it looks like a very long post, due to all of the photos – it really is not that long at all.

 

Onward…..

DC was very excited all month to be going on the Star Trek cruise, but in true DC fashion he was already starting to get anxious about when we were coming home before we had even left home.
He remembered the schedule I put on his phone during one trip a few years ago (which helped during that trip but not so much during the next) and asked for a “phone list”-
So that is what I did on he way to the airport.

DC’s Phone List

This time, the list worked perfectly. I did not have to repeat the schedule over and over again (we did have to listen to him recite it to us a few times). He took it out and read it whenever he felt the need to.  What a difference this list made!

In the airport.
DC (yells): I’m getting very nervous about this plane!
This plane does not look very safe to me!
(Line from: Honey, We Shrunk Ourselves)

Because he randomly blurts out movie lines, I always have ask him (when it could be a problematic line for the circumstances) – rather loudly so everyone in earshot can hear…..

“What movie is that from?”, so he can answer just as loudly, “Honey We Shrunk Ourselves” (or whatever movie the line happens to come from).

Bag Tag

 

 

 

We arrived in Miami the day before the cruise. We always try to arrive a day early, just in case. I remember a cruise about 15 years ago that was leaving from San Juan . We arrived a day early because I love Puerto Rico and we wanted to spend some time there. There just happened to be a storm after we left home all up and down the east coast (it was January). Flights were delayed and many passengers did not make the boat. Many had to fly into some of the ports where were were scheduled to stop to get on the ship – missing days of their cruise. Since then, we always arrive a day early, no matter what.

Boarding was quick and easy.

We looked around the ship a bit waiting for the drill and the opening ceremonies.

We were able to get into our room beforehand and DC set up “His Spot”. The spot where we had to climb over him all week, but he did not care.

 

After the safety drill we went to the pool for the opening ceremonies. DC was pretty excited. I don’t know if it was because everyone else was excited or because he spotted Nana Visitor and Brent Spiner, but he was cheering right along with everyone else.

 

 

I had just read the headline that morning in the airport about Kenneth Mitchell’s ALS diagnosis. I did not have the chance to read the article because we were boarding the plane. I assumed he was newly diagnosed. I was shocked and saddened to see that he was already in a wheel chair.  I have been a fan of his since Jericho and was happy to see him cast in Discovery in the first season and as I predicted in our Discovery podcast, there was no way they would hire Kenneth Mitchell for one season and just a few episodes. I was correct and they had him back playing a different character in season two.

As I said, DC was really looking forward to seeing Nana Visitor again. You might remember his reaction to her from Star Trek Missions NY (and a Little Bit of Reading Rainbow), but our first photo op was Jeffrey Combs (a favorite of mine). We happened to be in that area of the ship at our scheduled time, so we were there early enough so the line was not bad at all.

We had not gotten our bags yet, so DC was still sporting his “Eureka” shirt (shameless plug: Yeah, That Can’t Be Good: A Eureka Rewatch Podcast)

DC and Jeffrey Combs

 

Nana Visitor was the first of the many long lines he had to wait in that week. He got used to the waiting eventually, but because it was the first line, by the time he made it to her, he was over it and not his excitable self. He was excited, but not AS excited as he would have been. He would get a second chance when it was autograph time later in the week.

 

DC and Nana Visitor

My surprises of the week were how much DC enjoyed meeting Ethan Peck and Wilson Cruz. He started his week excited about Nana Visitor and Brent Spiner but ended it by adding two new favorites to his “list”.

There were signs all around the ship, especially in the photo/autograph lines that read – “No handshaking, Vulcan Salutes and elbow bumps only” – DC took that to mean, at the beginning anyway that he needed to do a salute for each photo. That came in handy when Ethan Peck noticed him trying to do one and asked the photographer to take a second picture.

DC and Ethan Peck (Photo edited to disguise DC’s name)

DC was able to talk with him a few more times during the week; once outside of one of the shows (I let him say hello. I did not want him to bother people when they were out and about, or eating, but I did let him say hello.) He did not seem to mind and did try to get some conversation out of DC, even though it was apparent that DC has a difficult time with conversation (he is on my nice guy list now as well). The next – at his autograph table, where he again went out of his way and took the time to try to get some conversation out of DC.

DC and Wilson Cruz

Wilson Cruz was very personable and high energy, which DC loved both times he met him (once for the photo and again for his autograph). DC was wearing a multi-colored, very bright, paint-splash kind of shirt for the autograph session. Mr. Cruz told him how much he liked his shirt and if you know how much DC loves compliments about his clothing, then you know that “The Doctor” now has a fan for life.

DC and Anson Mount

He wore his Captain’s shirt for his photo with Captain Pike (Anson Mount) and I actually got to attend, on my own (which never happens), a recording of Anson Mount’s podcast, The Well. I have been listening since the beginning and it was nice to be able to watch it live. I missed the first scheduled date due to DC’s photo op schedule so I do not know who the guest was, but I was able to make this one with his guest Kenneth Mitchell.

Anson Mount – The Well

 

The Well with Kenneth Mitchell

The Well with Kenneth Mitchell

 

DC announced to all in the elevator “I cut my toenails all by myself!”
Failing to acknowledge the torture that his cheering section had to endure while he was doing this earlier in the room.

 

There were plenty of other things to do besides standing in line for photos or autographs.

There was music and dancing. We all know how much DC loves to dance!

 

Panels:

Voyager Panel – DC was pretty good at sitting though the panels. Historically he falls asleep on my arm but he stayed awake for all of the panels we attended.

Voyager Panel

 

Discovery Panel

Discovery Panel

A pajama party with Chase Masterson.

As you might imagine, going out in one’s pajamas confused DC a bit but I was really surprised at how quickly he adapted..

He got a kick out of the “Rat Pack” show.


He did some swimming: DC has not been swimming since he had his first seizure back in 2015. Me, being me and a stickler for “the rules”, after his second seizure, when he had to be put on medication, was told by the ER doctor that I should not let him swim or even take a bath. I kind of “get” this. He is a big guy (he was much heavier/bigger then) and if he were to go under, we not only had to worry about the seizure going on at the moment but “dry drowning” later. DC who always loved swimming seemed to be moving away from it and refusing to go in the water at camp or anywhere else over the previous couple of years anyway, did not seem to mind this at all…

he did not mid at all until he knew we were going on a cruise, that is. He wanted to go swimming. I sucked it up and made Doug promise that he would go into the water with him and stay with him (I haven’t owned a bathing suit since 2005, so I was OUT for the pool). He did and DC was thrilled to go swimming just about every day. I was worried about how I was going to handle camp this year with his renewed love of swimming but as it stands with the virus, there will probably not be camp this year, so I am safe for now.

If you happened to be passing by the
Windjammer buffet at lunch-time yesterday, I was the one screaming “no, no, no!” as DC jumped up out of his seat to take off his shirt and switch it right there when he realized his shirt was inside out.

We watched Star Trek Squares:

I know that DC doesn’t get all of the jokes (and at times that was a good thing) but he seemed to enjoy watching all of these shows and games.

Max Tonight:

Watching the Make-Up artists (they were pretty impressive!)

Oz, Star Trek Style: You all know how DC feels about the Wizard of OZ!

Garrett Wang Stand Up Show.

I think DC’s favorite show of the entire trip was the script reading of “The Devil in the Dark”. He laughed and laughed. Ethan Philips played the “rock monster” and DC got such a kick out of some of the sounds he was making. Of course the cast included his beloved Nana and his new favorite, Ethan Peck so we really couldn’t go wrong, there.

 

 

Me: DC, what was your favorite part of the show?

DC: The Fart! hahahahahahaha

(The noises The Rock Monster made)

We made a nightly visit to Qapla”where DC had his fill of Shirley Temples (they gave him extra cherries there) and I could have a Kahless’s Martini. We went there after the show and DC saw Nana Visitor come in and sit down at a table. No, he wasn’t allowed to bother her and I didn’t want him to yell across the place, but he was happy just to see her there (I mention this for a reason).

 

The following day was his scheduled autograph session with her. He was more excited than the day of the photo op because he was now used to waiting in these lines. Doug prompted him to tell her that he liked her in the show the night before. She thanked him and told him that she had seen him (I imagine in Qapla”) right after the show. He was a thrilled about that.

Brent Spiner:

Unlike some of the others who were too busy to even say hello (we’ll get to that later), I was impressed with Brent Spiner.

First, some backstory from the “Everything is Related Series”Everything is Related: Star Trek and Geppetto – October 2019

Last night we happened to be watching an episode of TNG.

The beginning credits were running. I was not really paying attention when DC said:

“Brent Spiner. Not Stromboli in “The Wonderful World of Disney’s Geppetto” (we must always recite the entire title of any movie, book or television series)

When DC tells me that someone is NOT a character, what he is actually telling me is that the actor IS the character; in this case “Stromboli” in the movie he just mentioned but he is not playing that character in this movie or television series we are watching at the time.

DC has been watching his Geppetto DVD … um, excuse me: “The Wonderful World of Disney’s Geppetto” for many years. I had never seen it, but I looked it up and he was correct!

Apparently, DC had not ever recognized him as Data, but he did recognize his name in the credits, because he does know the name of every person who has ever played or lent their voice to any Disney character.

Of course I was going to get a ticket for a photo op and autograph for Brent Spiner! How could I not?

As you might imagine, Brent Spiner had one of the longer lines of the cruise. But still, he took the time to talk to DC a bit during the photo op and when DC called him Stromboli, he looked confused for a moment and then broke out into a Stromboli song! I have no idea if it was an actual song from the movie or if he made it up right there, but needless to say, DC was thrilled!

A few days later we when we went for his scheduled autograph session with Mr. Spiner, the line was just as long as it was for the photo op, so I did not expect much.

But once again, I was impressed.

We had an old Disney promo photo/description for – say it with me – “The Wonderful World of Disney’s Geppetto” for him to sign. He read it, we talked about it, he wondered why Disney Plus does not carry these older musicals, he showed it to Gates McFadden who was at the table with him and pointed out (something that I hadn’t noticed before because now that DC watches his DVD’s on his laptop, I no longer have to watch these things over and over and over again), that Rene Auberjonois was also a cast member.

(Photo edited to disguise DC’s real name)

The cruise was fun and I really had no complaints about the way it was run. There were a few issues, though.

The way that the tickets were sold really needs to be modified for the next time around.

We purchased our photo-op and autograph tickets months before the cruise date. We bought our tickets for specific people.

When we received our tickets on board, they were not for specific people, but for specific “levels”.

We bought a ticket for a photo-op with Kate Mulgrew only because it was a Voyager anniversary cruse, so how could I not?

Kate Mulgrew was a “Gold Level Ticket”.

If memory serves, the celebrities who fell under the Gold level were:

  1. Kate Mulgrew
  2.  Jeri Ryan
  3.  Rom and Leeta in full costume.
  4.  The Captain who shall not be named***

I ran though the crowd to get this pic!

 

The problem with this Gold, Silver and Bronze system is that the tickets are interchangeable. I fully understand the intent; there is a lot going on and one may find themselves with a conflict of some sort at the time of your scheduled op.  BUT… it also creates a false expectation of the line size for the organizers.

This is in no way a complaint about the length of the line, it is a complaint about how the celebrity was treated by the venue and the interchangeable tickets and in turn the way DC was treated by the celebrity.

While we were in line but still out in the lobby I heard a group of disabled individuals complaining to their support person/group leader about their experience with Kate Mulgrew (I am a people watcher so I pay attention to everything especially if I think there is a problem that will effect DC). I could not hear their complaints but I did hear the group leader talking to one of the event organizer crew.  The event organizer apologized for whatever happened  and went on to explain that “Ms. Mulgrew is a very smart and savvy woman who knows exactly what her contract states and exactly the hours she is required to take photos and sign autographs”. I don’t know what she did. Maybe she left and took a break, maybe she was not very pleasant. I don’t know, but I knew there was a problem.

That made me nervous. I started having anxiety that we would be standing in this line forever only to have her leave. That would not have gone over well with DC. We hadn’t had all that many melt-downs during the trip and the ones we had were minor, I did not want him to be disappointed or have a meltdown if something like that happened.

Most of the photo-ops were scheduled around dinner hours meaning that the people with the later dinner time could go to the 6:30 op and those with early dinner times could attend the 8:30. I believe there probably should have been a break for the celebrity in-between ops, but there were so many people in line that I am sure that one op lead right into the other. There were so many people in line, that I am sure her photo op went far beyond the time allotted as well. I understand. That is a long time to expect someone to sit there and take photo after photo.

We have been to many events like this in the past and we know that a photo-op was not the place for conversation and as I said earlier, I was impressed at the number of celebs that did take a little bit of time to converse.

When it was DC’s turn for a photo, she did not even look at him. DC, being DC knows he should be polite and say hello. He tried and tried, but she would not even look at him. He tapped her on the shoulder, just to say hello and still she would not even look at him.

Yes, he smiled for the photo, because any time there is a camera in sight, he will stop whatever he is doing and smile (which is why I cannot ever get a candid shot of him)

He tried to say good bye after the photo but she still would not even turn her head. After we left,  DC would not stop insisting that he had to go back and ‘a-polo-gize’ to her because he was convinced that he had done something wrong. It took us a while to make him understand that he had not. DC is not always one to notice when someone is ignoring him (usually because I try to cover it up for him), but he noticed and it made him feel bad.

I never ask for or expect special treatment for him due to his autism, but I do expect him to be treated with common courtesy and he was not.

The next “issue” had nothing to do with the interchangeable tickets, it was just rudeness.

We were in “line” for Jeffrey Combs (there were two people in front of us and NO ONE behind us). We watched him sign and converse with both people in front of us. When DC got to the table and he started signing his photo, his assistant/wife or whoever she was, come up to the table and said “Excuse me one moment”. He turned around and they had a conversation as he pushed the signed photo towards us with out ever turning around again.

Again, THERE WAS NO ONE BEHIND US! This could have waited. Understanding that we were being dismissed and he was not going to turn around again even to say good-bye or thank you, I, rather loudly said good-bye, in a not so friendly fashion. He turned around quickly and said “Oh! Goodbye”.

Casey Biggs, who was at the table with him, noticed this and was nice enough to jump in to thank us for him (even though we were not at his station).

When we left the table – There was still NO ONE behind us.

Doug, who never notices anything (he will tell you that himself), asked me if Jeffrey Combs has been added to my “turn your head and spit” list.

The jury is still out on that one.

Moving On:

I was kicking myself for not bringing DC’s “Lizard Spock” costume with us, when we saw “Gorn’s Galactic Gala”. Me, thinking myself very clever found a Lizard costume years back and because DC absolutely knows Mr. Spock AND loves the Big Bang Theory; especially Rock, Paper Scissors, Lizard, Spock, I thought it would be hilarious for him to dress as “Lizard Spock” for Halloween. Unfortunately, I only succeeded in cracking myself up because no one got it. People who knew Star Trek thought he was Gorn and everyone else just didn’t know at all. DC and I knew, so that was all that mattered.

 

 

He would have fit right in…..

 

 

 

 

As you would find on every cruise – there was the standard towel animal on the bed every day when we came back to the room. DC cannot leave these alone. He just can’t stand that the towels are not in the right place and has to take it apart THE MOMENT he walks into the room.

It was entertaining to see how long it would take for him to notice it and take it apart. It was usually immediate.

More Dancing:

I believe this was the last night on the ship. I don’t recall the name or the theme.

 

 

 

DC wanted to see Brent Spiner again, so we went to his show… Inside the Actor’s Studio. We did not know who the guest would be and unfortunately as it turned out, it was The Captain who shall not be named***. Brent Spiner talked for a good long while before announcing who his guest would be and before bringing him out, so DC got his last “Spiner Fix” and we left when the guest came out.

We had a really nice time and I would LOVE to do this again! I don’t know if I will ever be able to talk Doug into it again – he’s not a Star Trek fan, although he did have a good time too. Don’t let the face fool you.

 

Oh! We did stop in Puerto Rico, St. Thomas and St. John too!

It seems so long ago now. Two weeks after we returned home the whole country shut down. It gives me pause to look at these photos and the crowds.

Do you find yourself having anxiety when watching characters on television shows opening mail, willy nilly (where did THAT word come from?) hugging or shaking hands or is it just me?

I fear nothing will ever be he same again. I hope I am wrong.

****

*** The Captain who shall not be named

I did not write this but I have shared it many times over the last few years as the best explanation I can find…

How William Shatner Betrayed Autistic People’s Trust

 

 

 

 

 

 

 

 

 

 

 

 

Flowers for “Vicki”(e)

DC woke up this morning with a “Happy Mother’s Day” for me. He then moved right in to asking what we are going to eat later.

I made the mistake of telling him that we would try to get Chili’s takeout (HIS favorite place) for dinner so that is all he is interested in.

He gave asking about dinner a break when we went for a porch visit with Grandma. He was excited to bring “Grandmother” a card and a gift for Mother’s Day and we spent a little time there.

All week he had been promising me a card for Mother’s Day. I was sure that since Doug always takes care of that for him while DC takes full credit, he was expecting a card to miraculously appear for him to present to me.

He has and still does draw flowers for me at random, but never for a holiday – on the holiday (well, there was that ONE time) unless someone tells him to do it. He does make things for me during some of his activities even though they are not supposed to be for me (see: Even when he gets the assignment wrong; he gets it right) , so I am not complaining at all.

When we arrived home, he started talking about “Chills” (DC-speak). Again, I told him that we would try. I didn’t know if it was even open for take out.

I mentioned the card he promised me.

DC: Grandmother

Me: Yes, you brought a card to Grandma, but where is the card you promised me?

DC: (pointing all over the house) Card.

Me: You said you would make me a card. Where is it?

DC: (gives me the blank stare; the only thing he inherited from his father) 

Me: Mom would like a card for Mother’s Day.

DC: (Still staring, but I could see it begin to click in his head finally) Paper! 

He moved his laptop back to make room for the paper.

I went in the other room, so it would be a surprise when he presented his card to me.

I could hear him talking to himself and reciting:

Violets are blue

Violets are blue

Roses are red

Flowers are yellow

He came in and presented me with the card above.

Flowers for Vickie (I added the “e” because no one, no one – ever spells my name correctly)

Apparently all the the reciting he was doing was just him prompting himself to get all of the colors right.

Yes of course I made a big deal of it all and yes, he was very proud of the card. We promptly hung it on the cabinet so we can see it all day.

I got my card.

I had to ask for it, but he understood without me directly saying “Please make a card”. He figured it out.

Now it is entirely possible when Doug comes to drop off the take-out later that he will have gotten a card for me from DC.

DC will take full credit for that one too.

He’s the best!!!!

Happy Mother’s Day!!!!

*****

Quarantine Diaries – all

 

 

 

 

 

Quarantine Diaries: Part 6 – “Yay, Yay, It’s Mother’s Day!”

In my Easter post (Quarantine Diaries: Part 3 – Easter in Lock Down) I noticed that DC, who is usually very calendar orientated, had not moved on to “What’s Next”.

Shhh! We’ve officially passed the time of night on any given holiday when DC decides this one is over and begins to “remind” me of whatever is coming up next (in this case, Mother’s Day, I would imagine). He hadn’t said a word. Weird.

Just weird.

I chalked it up to the lock-down and everything being crossed off the calendar.

He did finally begin mentioning it towards the end of April. Once again, I had to explain that we would not be going out to eat. He took that a lot better than he did at Easter. He seems to be getting used to all of this, or going more with the flow than I ever imagined he would.

He did begin announcing when he went to get his DVD’s for the day, that he was going to watch “Mother’s Day movies”. When asked which movies were Mother’s Day movies, he gave me a list:

  • Shrek 2
  • Shrek the Third
  • Shrek Forever and After
  • Aladdin 2 – The Return of Jafar
  • Aladdin 2019 (Yes, you must say ‘Two Thousand Nineteen’)

Having not seen any of these movies myself other than Shrek 2 (since he watches on his laptop, I no longer have to watch his movies over and over again), I wasn’t sure what any of them had to do with Mother’s Day. I mean, I know Shrek and Fiona had babies at some point, but when… I do not know.

I began thinking that this was his way of bringing up Mother’s Day without asking or reminding over and over again. He does sometimes come of with alternate ways of reminding me of something when he knows I am tired of listening to the same question over and over again.

When he went to put these movies away and bring down another batch, he announced that he was getting his “Father’s Day Movies”.

“Which movies are Father’s Day movies?”

DC: “All Animals”

  • Lion King
  • Pocahontas
  • Tarzan
  • Finding Dory
  • Monsters University
  • Brave
  • Toy Story 3
  • Toy Story 4

?????

Some of these I “get”. Some I don’t (or haven’t seen), but I am not sure why Toy Story 3 and 4 fits into the “Animals” or “Father’s Day” categories.

Since these two movie categories were first announced, the movies have not changed. The Mother’s Day movies are the same movies he listed that first time and the same with Father’s Day movies.

Maybe it was partially a ploy to mention Mother’s Day, but he does seem to have a filing system in his head and these movies fit into this system somehow.

His movie filing system has baffled me for years.

He has an entire cabinet filled with movies. I don’t touch them because he seems to know where every . single . movie . is in the disaster cabinet (there are many more in the bottom part behind the cabinet doors).

If I move one, me knows. They are filed using a system that is known only to him. So even if I do not understand his Mother’s and Father’s Day selections, I do not question them. There is a reason in his head.

The constant reminding and cheering “Yay, Yay! It’s Mother’s Day” did finally kick in on May 1st. He reminds me daily, either by screeching, “Yay! Yay!”, “Mother’s Day is coming soon!” or by announcing that he is watching his Mother’s Day movies. But… I can also hear him talking to himself and reciting the days of the week until Mother’s Day as if he were reading one of the daily schedule lists that I have made for him a few times when we went on vacation.

He is calming himself without prompting. He is calming himself with out a written out list.

I am placing that in the “growth” column for sure.

I do have to say that I have seen a lot of growth from him during this lock-down, some of which I have written about in part 4. Some I will write about another time, but and I am pretty darn proud of him.

It is a Happy Mother’s Day!

***

Quarantine Diaries – all

 

 

 

 

 

 

Week One of The World Shutting Down

Please understand that I am in no way complaining about or making light of the situation, but his blog is about autism; my son’s autism and the way his mind works and deals with things and that is just what I am going to write about.

The first hurdle was my birthday (Friday the 13th). Restaurants, stores and just about everything else were still open but I did not feel comfortable taking him “out to eat”.

As you know, my birthday is only important as a stepping stone to his birthday and as an opportunity to go out to a restaurant. He was very upset by this so we got his favorite foods and cake and celebrated at home. He was eventually all right with this – there was cake…

Overall, DC had a happy “Mom’s Birthday”. My day, on the other hand…

Friday the 13th sure lived up to it’s end of the deal …..
(sucky day… that is all)

The two boxes of Girl Scout cookies that came home with me after work yesterday…. gone.
#WhatCanIEatNext

Not going anywhere on my birthday lead to “a bit of” anxiety over his upcoming birthday. His birthday this year, was supposed to be spent in Pennsylvania for one of his Winter Guard shows. We were going to spend the weekend and do “DC stuff” (he always loves a hotel).

 

2019

DC was really looking forward to this show this year. We were going to stay over (nothing is better than a hotel and his “spot” at the desk for his computer and everything else) and make it his Birthday Weekend (the show was scheduled right on his birthday). Of all the things I had to tell him were cancelled, I think this was the toughest for him.

The small bright spot (for me, anyway) was that other people were cancelling all of these events and it wasn’t me keeping him from attending.

It is not my fault…..

DC is good about washing his hands before he eats and after using the restroom but he does not really understand why. It’s a rule. He does not understand germs (because he can’t see them) and keeping his hands away from his face.

He has gotten pretty good with all of the additional hand washing and fortunately I am here to remind him to keep his hands away from his face.

Because I don’t know what to call this so DC understands, I find myself calling what’s going on “The Sickness” so he understands that it’s more serious than a cold or the flu (and so he doesn’t blame me that everything is closed or cancelled). But every time I say it I feel as if I’m in some apocalyptic TV show…
The Phage?
The Pulse?

We have been going out for walks quite a bit.

Boredom Buster: This is how we walk with friends. Meet there. No handshaking, fist bumping or hugging and keeping a few feet of personal space between. We walked 3.1 CharityMiles for Special Olympics.

 

It was not until Tuesday when I had to go into the office, that he fell apart. He is having a hard time keeping track of things and the schedule keeps changing.

You know he was having a hard time when he completely missed St. Patrick’s Day!

He hasn’t mentioned St. Patrick’s Day at all this year; possibly due to our calendar having so many things crossed out that he didn’t notice? #HappyStPatricksDay

I began writing his schedule for the next day down for him the night before so he could relax and stop obsessing about it, but of course, things change and to him it was like I lied.

I was supposed to go into work again on Friday, but it was changed to Thursday – that threw him into another tailspin. (Also, I was supposed to have a Dr’s appointment and get my taxes done, both of which had to be cancelled due to the schedule change). The “writing things down” stopped working at this point.

His program finally closed officially yesterday – he hadn’t been going, but now I could tell him that THEY closed.

Not my fault.

The highlights of his week have been walking and grocery shopping. Explaining the shortage situation to him has not been easy but seeing the shelves empty did help him to understand it a little bit more – some of the time….

 

Some substitutions had to be made when grocery shopping…. Doug insisted that fake Cheerios are just as good as real Cheerios (we ALL know that is not true)
DC, this morning after trying them (he did try them, so I’ll give him that)
“Different Cheerios” and went to the kitchen to dump the bowl.
“Gross-nest” (DC-Speak – grossness?)
#StopHoardingCheerios

While we are on the subject, if any of you ever happen to meet or run into Doug, please let him know that Tootsie Rolls are not anyone’s idea as a substitute for chocolate. NOT EVER!

We were able to find the real Cheerios the following day. Phew!

We had to buy “rainbow carrots”. Let’s see how this goes..

Surprisingly, “Rainbow Carrots” went over just fine.  It was one of those “trying new foods” situations when you put whatever it is in front of him and don’t make eye contact – You all know what I mean. NO EYE CONTACT!

 

 

The “Social Distancing” police was out in full force today. With umbrella in hand to point at offenders, I was drunk with power. We walked 3.0 Charity Miles for Special Olympics.

 

A good indication of just how bored DC is just being home every day is his willingness to walk in the rain. No complaining. No screeching “I’m getting all wet”. He was just happy to be out and also able to see his friend, BB – at a distance, of course.

DC heading out the door for a hike with Mrs. H.
Me: No hugging. Don’t touch benches or anything…
DC: And don’t get lost.
#ThatGoesWithOutSaying

Still, every once in a while the entire situation gets the better of him and it takes him a while to calm down again, but HE is coping much better that expected. I am really proud of him and I tell him so daily.

#ConversationsYouNeverThoughtYouWouldHave
Firstly: I don’t have a lot of room here, so I don’t buy things to have “just in case” – which put us at a disadvantage when the hoarding began. Secondly: I don’t buy alcohol unless I know we are having company or something, but this was a sucky week at home and ever suckier at work so I asked Doug to pick up some wine on his way over….
Doug started to open the wine for me..
Me: Wait! Wash your hands!
Doug: I was going to open the wine and then wash my hands.
Me: But I already sanitized the wine bottle and now I have to do it again!

 

Tomorrow is DC’s 29th Birthday (Twenty-Nineteen in DC speak). He has resigned himself to an at-home celebration and the promise of a birthday dinner out in one of his favorite restaurants after “the sickness” is over. I hope that is good enough for him. It makes me sad that he can’t have the birthday he wants. There is no one who loves their birthday as much as this guy.

Unfortunately this lead to the constant inquiry as to when the “Sickness will be all done.”. He wants a specific date to put on the calendar and I can’t give him that.

I wish I could.

***

 

He came up with a plan and carried it out.

 

Tonight DC put away his computer and began his bedtime rituals…

  • Moving his pile of 3 books  from “their spot” at “his spot” at the kitchen table, to their “bedtime spot”.
  • Moving his stack of papers from his kitchen chair “spot” to their “bedtime spot”.
  • Putting his DVDs away.
  • Taking off his “If I Need Help” dog tags and his medical alert bracelet.
  • Turning off the lights in the kitchen.

I asked him what he was doing as it was only 6:00 PM.

No reply; he just continued on with his night-time rituals.

I told him again that it was only 6 o’clock.

He was in no way tired or sick. He had just been “ice skating” and dancing around the kitchen and living room.

  • He went upstairs to brush his teeth
  • He came over to me and pulled down his bottom lip so I could see his brushed teeth.
  • He went to his room and got his pillows.
  • He went to my room and got mine and brought them downstairs.
  • He got out his blankets and his iPad and got into his “spot” on the couch and was ready for bed.

I was confused by all of this. Not to say that all of this isn’t the norm every night, but not at 6 o’clock unless there is a storm.

And then it hit me….

The last time DC slept in his room and not on the couch was Christmas Eve (because… Santa). The last time before that was Christmas Eve 2018. Earlier in the day we made a deal – or so I thought. He agreed to sleep in his room tonight. We talked about it for a good long time and this time I thought I made it easier for him to accept by compromising and telling him that for now, I will only ask that he sleep in his bed tonight. He could sleep on the couch the following night, an so on. We would take it one day at a time. (My back was/is screaming for mercy, but we’ll take it slow anyway).

He agreed.

Some backstory from 2018 – The Couch; Another Round:

When DC was young, he would come into my room when there was a storm and he was afraid. This did not mean he would calm down but once he tired of repeating the same few phrases over and over again, he would finally fall asleep.

He is  27  now (chronologically) and it is no longer appropriate for him to come and sleep in my room. He does not understand this because in his mind, the storms are just as scary as they were when he was young and quite honestly, developmentally, he is just as young as he was then. There is no good way to explain this to him.

So……  now during storms or when he hears a loud noise that might be a storm or fireworks or a truck driving by or a plane flying over head…… we sleep on the couch.

I have a sectional.

He sleeps on the chaise lounge (the bottom of the L)  and I sleep on the straight part.

He was trying to get out of the agreement he made to sleep in his room.

He assumed that if he just got everything together right after dinner, ignoring my “What are you doing”s, and just got himself set up and on the couch,  I would forget about our conversation and our agreement.

You know what? It worked.

If it had been his regular time to go to sleep I would have reminded him that he agreed to sleep in his bed. Although my aching back should have reminded me; the fact that all of this was going on so early and he seemed to be on such a mission to get all of his rituals done quickly, I was too busy being confused to remember our conversation earlier in the day.

Apparently DC had not forgotten.

Well played, DC. Well played.

Tomorrow, I will be ready.

(I do have to admit that I AM a bit impressed by his well thought out plan)

 

*****

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.”

 

 

 

Hey Santa, Don’t Pass By The Older “Kids”

Thanksgiving weekend is usually DC’s big step into the Christmas Season.

We normally go away for Thanksgiving and the weekend after. Once Thanksgiving Day is officially over, Friday and Saturday are usually all about Christmas.

There are a few standard stops that we make each year, one being the Santa Express or the North Pole express.

We like to arrive at least an hour before our appointed departure time so that DC has enough time to spend in the train station.

He writes and mails his letter to Santa at the special post office.

There is always a Princess or two walking about . This year he met Princess Poinsettia. If you ask DC about her he will tell you that she is the princess of the Christmas Flowers.

She came by and spoke with him more than once. They had a good long conversation about his upcoming train ride. She told him all about the Elf training and made sure he knew to ask for a report card when he got on the train (which we did).

She spent a lot of time with him and he was in his glory.

He enjoyed meeting the many characters that were wandering about.

He particularly loves listening to the singers singing Christmas carols.

He was excited to see that the singers were the same singers as last year. They were fabulous with him last year and even asked to have their picture taken with him (and we all know how much DC LOVES to have his picture taken)

Last year, 2018

 

He found them first in the Gingerbread House room and he followed them around, so much that I felt like a stalker. He followed them out to the main room where he requested “Deck the Halls” and sang along to Deck the Halls and every other song that they sang. They were almost apologetic when they had to take a break and put the regular piped in Christmas music back on.

When they came back to play some more, he was right there. They told him that they remembered him from last year (of course they didn’t but he was happy to believe that they did). DC actually asked, on his own (he usually has me do it) for a picture with them. He absolutely loves listening to them and I must say, they both have the perfect personalities to be doing just what they are doing.  He just adores them.

 

It was finally time to board the train. We found our seats. He met some elves. They gave him his elf hat and his elf-in-training report card, just as he and Princess Poinsettia discussed earlier. And we were off.

There was singing, dancing and joke telling along the way and DC passed every Elf Academy test.

It wasn’t long before we spotted Mrs. Claus. Now, DC is a big fan of Mrs. Claus. Sometimes I think he’d rather see her if given the choice between the two.

As Mrs. Claus made her way through the car, stopping at every single seat (as you would and as she always does), Doug moved to an empty seat so as not to block access to DC and so there was space for me to get a photo.

A couple of years ago I was convinced that Mrs. Claus was out to get me because everywhere we went and everywhere DC met her, she gave him a bell. Mrs. Claus did not do that on this day (Thank you, Mrs. Claus), she stopped and chatted with DC and we took a picture. She continued on her way stopping at every seat including the one where Doug was sitting by himself and said hello.

Did I mention that he loves Mrs. Claus? Did I?

He saw that Santa was heading his way and he was getting more excited by the second. He could hardly contain himself when Santa was at the seat right across from us because he knew he would be next.

Santa finished up with the kids in that seat, turned around, looked at DC and walked right past to the seat behind us.

If you could have seen the look on DC’s face…. He was crushed.

As you can imagine, I was not having any of it and YELLED “Excuse Me” to which Santa turned around and looked at me, still oblivious to the fact that DC may have wanted to talk to him so I gave him one of my well cultivated death stares and motioned toward DC.

He said “Certainly” as if he was doing me a favor and took a photo with DC. There was no conversation; he just posed for the picture with DC and went on his way.

If I had not been able to get his attention before he finished the last two seats behind us, he would have been off in another car and DC would not have seen him at all.

DC was happy to get a picture with him at least.

Now listen, I understand that DC is a “bit” older than your average passenger but seriously, we are on THE SANTA TRAIN.

He was sitting there wearing an elf hat and holding his elf-in-training report card.

It is not up to you, Santa to decide who might be too old to want to talk to Santa. Not up to you at all.

You stop at every single seat regardless.

I have to imagine that this was one of Santa’s fill-in helpers and not the real Santa because the real Santa would have known better than to skip over any one.

I think Santa may need to call all of his helpers back to the North Pole for a little Awareness training.

I’m sure DC, since passing his elf training would be happy to help.

But seriously, the rest of the day was fantastic and I can not say enough about all of the other people working both in the station and on the train.  They went over and above any expectations we might have had.

Unfortunately, with Santa being the “main event”, the slight was that much more disappointing. How long does it take to stop and say hello? I was not expecting any special treatment nor do I ever ask for special treatment. I do expect that he be treated in the same manner as every other passenger on the train.

That is not a lot to ask.

As I said earlier, Mrs. Claus was good to me and did not give DC a bell….

The Elves…..

They gave him a bell…

It is a full week later and he is right at this moment ringing it behind my head.

The Elves; they were also very nice to him so I can forgive the whole bell thing 🙂

 

 

Happy Halloween – Sing it with me… “It’s Raining Again”

 

DC does not like the rain.

He just does not.

When he was younger, it was just the rain he did not like but now, in his mind – rain leads to storms so there is no tolerating the rain at all any more.

I remember taking him to a birthday party when he was younger. One of the activities planned was a water balloon fight. Getting wet without a bathing suit on was always an issue, but we were instructed to wear bathing suits.  After a lot of explanation, I thought he’d be okay with it.

Unfortunately it was raining when we arrived.

It was summer. They were already in bathing suits.

So why not have the water balloon fight?

Why not, you ask?

You have to understand that to DC, rain means hurry to the car, or out of the car and into the house so you don’t get wet. Or hurry anywhere you are headed to or from so you don’t get wet. Run into the store, so you don’t get wet. Baseball is cancelled because it is raining. Cross country is cancelled because it’s raining. Outdoor activities are cancelled because it is raining.

So you don’t get wet…

Because it’s raining…

We don’t walk around in it and we certainly don’t go outside to play in it! There are no gray areas.

In case you were wondering….

It didn’t go over well.

This year we were expecting high winds and rain for Halloween (and we got both).

Now, I am not one of those people who think that Halloween should be cancelled and rescheduled when bad weather is predicted. This is strictly a “DC” issue and I was a little bit concerned.

I talked about it all week.

He looked nervous each time we discussed it but he still wanted to go Trick-Or-Treating. I told him not to worry, we will use umbrellas.

During the monsoon part of the afternoon on Halloween Day, I ran around town trying to find some of those clear plastic rain ponchos for him and his friends. (You NEVER wear coats or jackets over a costume! It’s a rule. Look it up.) But because I did not think ahead, there were none to be found any where.

Fortunately the rain calmed down and stopped for a little while when we were ready to go to *Candy’s house for dinner with her and *Sally before we all went out Trick-Or-Treating together.

They had their dinner and a few treats and off we went.

I had been poured on many times already that day when I was out looking for ponchos and earlier when I went out to look for an umbrella to match his costume (yes, I did) so I was over trying to stay dry at this point.

We were pretty lucky for the most part.

We had some rain.

We had some wind.

 

But fortunately not all at the same time.

DC went from “I’m getting very nervous about this” to (insert excited voice) “Happy Halloween! Thank you” and back many times over.

We did not visit as many houses as we usually do but they all came back with a good amount of candy, mostly from people trying to get rid of their overstock due to the smaller than usual weather-related turn out.

I would have been surprised if DC had opted to skip Halloween due to the weather, but one never knows when rain is involved.

It all worked out and the 3 of them had a great night.

(I think the 3 Mom’s had fun too)

In true DC fashion; when it’s over, it’s over.

In the car on the way home, he obsessed about changing the calendar to November and when he did:

“Mom, I’m so excited about Thanksgiving”

over and over.

Hope you all had a Happy Halloween!

***

Our 2019 Costume “Parade/Wrap Up” can be found here.

 

 

2019 Halloween – Merlin from The Sword and the Stone

 

 

 

The Blue Bulb

A year later … it is still there, again for no other reason except that it is still working and it is difficult to change. Left over from years ago when I was ignorant enough to support “The Organization That Will Not Be Named” (AS). In my and other’s of the same era’s defense – we had nothing else. We were at the mercy of teachers, doctors and professionals who were supposed to know better. We had to learn and change on our own…

I have a blue light

I have a blue light. It is one of those energy saving bulbs that lasts what seems like forever. It has been in my outside porch light for a good 4 (maybe more) years now (and yes, I did notice that there are plenty of dead bugs at the bottom in this photo – that’s life.)

One Halloween about 4 years ago (maybe 5) it was my turn to host the annual Halloween/Trick or Treat party for DC and his friends. We would still be giving out candy so I wanted to find a bulb that would not interfere with the lights and decorations I had put up, as the regular porch light bulb would.

I rummaged around and came across an old bulb from back in the day when I used to Light- it-Up Blue.  The porch light is not easy to change and if the bulb works, I am not changing it. There it sits – four (or maybe 5) years later. Obviously, I do not turn my porch light on all that often for it to last that long.

We did not have Autism Awareness when DC was young. We did not have World Autism Day, so when Autism Awareness started to become a thing, I was all for it. I naively believed that the awareness would encompass all of the spectrum.  If your child happens to fall somewhere on the spectrum other than where the characters that we see on TV fall, you are not allowed to speak about it. Don’t get me wrong – awareness and acceptance is a necessity but some of us need more.

As I get older and DC gets older, I worry more and more about his future and his safety (don’t worry, I am not going to rehash all of my fears for the hundredth time). Awareness is/was necessary though. It brought us more programs into school systems and more understanding and hopefully, acceptance of the students. Awareness has done next to nothing for some of our children as they become adults.

With funding for the disabled being one of the first things to be cut in every budget, even some of those school programs are going away now. I have already said that DC, after all of the people I have put in place as guardians after I am gone are gone, will have to live in a group home. What if there is no funding for that sort of thing when I am gone? What if everything I have put in place falls apart due to these cuts or due to one little miss-step? What would have happened if our whole Social Security debacle happened after I was gone? (A debacle that turned out to be Social Security’s  fault, but they were perfectly willing to take his benefits away, knowing full well that it was their fault – this is a 3 part-er so if you are interested, start here). Who will be there to fix it all for him? Will he be out on the streets or institutionalized? He would not survive. He is in a staffed day/work program right now. He loves it. What happens when their funding gets cut (as it does every year)?

April is a very depressing month for me now-a-days. It really is. Please do not tell me that I am undervaluing my son’s life by saying that. I am not in any way.

He is happy.

You should be so happy.

I love our life.

He loves his life.

I would not change a thing about him, except for his future.

I worry for his future and it is not for you or anyone to judge a parent, any parent who is just worried for their child’s future. His future is not your future, it is not your child’s future, you cannot compare.

I do not disparage those that are celebrating. I do not disparage the associations/charities they choose to support or not support. I do not disparage Autism Awareness at all. I am glad there is push for awareness and acceptance, but it needs to encompass everyone and we need more – much more. 

So I will just continue on my way, writing stories – some with humor and some not, some about progress made and some not. But through-out those stories, it should be apparent to you just how much I love this “boy” and how proud I am of him every day. If it is not in your face apparent in one or two; all I can say is that everybody has a bad day once in a while. I will continue to write about DC and our life  just to raise awareness to another side of the spectrum. I will continue to call and email my representatives whenever the threat of more cuts are in the air. I will continue to plan and research other methods of making sure he is safe and taken care of.

So yes, I have a blue light. It is left over from Halloween, 4 years ago (maybe 5). It may be turned on if someone is stopping by  after dark, but it means nothing other than the fact that I am just too lazy to switch out a perfectly good, working light bulb.

I am glad there is an awareness day and an awareness month. I am glad it has also become an acceptance day and acceptance month.

We need more.