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.

 

 

 

 

Supernatural – I wish I was able to hear that Conversation #SPNNJ

 

This week the Finish The Sentence Friday prompt is a Listicle – “Share 10 photos from your phone”. There could not have been more perfect timing.

As you may or may not remember, I lost all of the photos that were stored on my computer a few weeks ago. The computer went to the “computer guy” just before we went away for the weekend. It took much longer to get it back (with some of the photos recovered) than I expected, so all of my photos from that weekend are still on my phone waiting for a computer to download them on to, so I could write about the weekend as I do with every Convention, ComicCon or the like that we attend. They were already cropped and cartoonized (not a word, I know) and ready to go.

So here goes.

As you also may or may not know; DC loves New York City. He also loves Kim Rhodes. He met her last year at the some convention in NJ that we would be attending this weekend and I believe it was the highlight of his year (Let’s Talk About Kim Rhodes #SPNNJ)

As we did last year, we decided to take the weekend to go to New York City on Friday to do “DC-Stuff”, as he puts it, go to the convention on Saturday and back to New York for more “DC-Stuff” on Sunday.

Photo #1 (since this IS Supposed to be a “list)

“DC-stuff” means Times Square, The Disney Store, The M&M or Hershey Store (he chose Hershey this time), The Book Store and Lunch at Hard Rock. We accomplished that on Friday.

The hotel where we were staying was in NJ, within walking distance of the convention center.

Photo # 2

 

He started getting a little bit anxious at the hotel. He was done “of” walking (DC-Speak) but also excited about the next day. But this is normal for him. He “Flapped Furiously” for a while and got it out of his system.

Photo #3

Because I have learned much over the years, we had to go over the rules. Briana Buckmaster has beautiful long flowing blonde hair so he had to promise not to touch it (he would be reminded again the next day, but it never hurts to begin the reminding early) and of course, he is not allowed to “pick up the people” (a lesson I learned the hard way)

Saturday came and DC did a <insert sarcasm font> “little bit” of stimming outside the hotel (I’m sure it is on you-tube somewhere) and once he got himself together we walked over to the convention center.

He had his picture taken with Ruth Connell who had her hair up, luckily – but before he got anywhere near her, he was made to listen to the rules again – just to be on the safe side.

Photo #4

We sat in on the panel with all of the women characters where he got his first glimpse of Kim Rhodes. I had purchased autograph tickets for Kim Rhodes and I thought Briana Buckmaster because DC really wanted to say or hear her say “Okey Dokey” or in DC-speak “Ok-kiddy-Do-key” but #MomFail, I did not buy both. I don’t know what I was thinking. But he got to see Kim Rhodes, so he was sort-of okay with my error.

In line, waiting for the autographs, DC was, for some reason rehearsing “This is my mother, Vickie *LastName”, but when we reached the table and Kim asked him who I was he just said “Vickie” – not his mother – just Vickie.

Onward to the photo ops.

Photo #5

First ….. Kim Rhodes. The ‘Boy” is very happy, in case that isn’t 100% obvious.

Photo #6

Even though I failed with the autograph tickets, I did get a photo-op ticket for Kim and Briana Buckmaster together. Briana had her hair up too, so she was safe from DC the Hairdresser. He was thrilled, as you can see. I did not hear if he was able to give her an “Ok-kiddy-Do-key” and if she would even understand what he was saying if he did, but he was one happy guy. He wore his “Jody (Kim Rhodes) and Donna (Briana Buckmaster) shirt very proudly that day.

Once photos are taken, it is a good amount of time before they are printed and put out on a table in the vendor room. We only had one more photo-op to go before we were going to leave, have dinner and go back to the room for a break before we came back for the concert at 930. I try not to schedule anything after 3 or 4 so we have that time to take a break before the concert. It’s a long day for DC. Doug checked the photo table while we were in line for Misha Collins.

The last photo-op of the day and I have to say, my favorite photo of all time.

Photo-ops move quickly and there is not really any time at all to say more than “hello”. I was standing off to the side and saw that Misha Collins was taking to DC and DC was answering. I do not know if he was getting actual answers to the questions he was asking but I could see that DC seemed to be responding to whatever he was saying. It was more than a quick “Hello, what is you name”.

Whatever they were talking about; the conversation led to this photo.

Photo #7

Absolutely the

Best . Photo . Ever.

Let me also point out that DC TOOK HIS GLASSES OFF for the photo! That does not happen.

I did not see the photo until after we left and had dinner. We were able to get the first two photos before we left he convention center. We stopped at Outback on the way back to the hotel. After dinner Doug volunteered to go back to the convention center to check for the photo while DC and I went back to the hotel.

DC and I were sitting at a table outside the hotel when I saw Doug coming down the road with the photo, laughing. I don’t know if he laughed all the way from the convention center (I would have) but he was sure laughing on the way to the table.

Best picture ever.

It makes me really want to know what they were talking about before it was taken.

After our break, we went back for the Saturday Night Special (the concert) where DC got to hear them all sing.

Photo #8

Photo #9

Photo #10

Photo #11 (Bonus)

The concert ended with Justin Guarini. I am not sure why he was there, but……. cool. It was also a bonus for Doug because if you know Doug at all, you know that he has no idea who anyone on TV or in the movies is, but he did know who Justin Guarini was, not from American Idol but from American Idiot – one of the few Broadway shows that I dragged him to that he actually enjoyed.

A few things I noticed, though. We’ve been to a few conventions over the years and this one is one of the most organized conventions around, without a doubt.

DC had a few minor meltdowns while we were there. No one stared, no one made an issue about it. One lady was concerned and asked me if he was all right. I started to explain that he has autism and he gets a little bit anxious and before I got that all out of my mouth, she said “Oh, I know. Does he need anything?”

During another outburst, the woman behind us in line did not even flinch and offered us some granola bars in case he was hungry.

I guess I am not used to people knowing and understanding without me having to explain. It was nice. Maybe the whole “awareness thing” is doing some good in some places. It certainly was not the case when he was stimming outside the hotel that morning.

Sunday consisted of sleeping late; as late as DC would allow and back to the City for the rest of the “DC-stuff” on his list.

Central Park

and the Eloise Store at the Plaza

 

****

This has been a Finish The Sentence Friday Post. This week is a Listicle and the prompt; Share 10 photos from your phone.
Finish The Sentence Friday is hosted by: Kristi at Finding Ninee and  Kenya at Sporadically Yours

 

 

 

 

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.

To Boldy Go....

The first “sign” that DC learned when he was very young (for those of you that may not know, DC was non-verbal until he was 7 years old) was the “Live Long and Prosper” sign. If and when he saw a picture of Mr. Spock or heard him mentioned, he used that sign.

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

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

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

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

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

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

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

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

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

– just following directions, Doc…….

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

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

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

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

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

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

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

He didn’t want to sit down.

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

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

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

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

We decided to just wait at the table.

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

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

but he was also “done”.

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

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

except for this guy…………..

this guy....

this guy….

 

*****

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

Camp, Old Friends and a Little Bit of Anxiety

Yesterday was the first day of summer camp for DC and Salli. DC has talked about nothing else since I told him he would be going on Thursdays and Fridays for the summer. I did not tell him too early because…….

enough said.

He was excited, to say the least.

Not only would he be going to camp but his his favorite ex-group leader, “Giselle” (everyone is named for a Disney character or Princess) would be taking the head position in the after camp program this year!

What you need to know about DC is that no matter how much he wants to go somewhere or how much he is looking forward to going, there is always an element of anxiety that hits him when he arrives…. I like to call it “Arrival Anxiety”.

This anxiety is not anything new with DC, it just seems to be a little more intense, and dare I say, loud since he has been on his seizure medication. It is as if someone flips a switch and there it is. It can be brought on by anything or nothing at all. It just “is”.  It also takes him a little bit longer to shake it off now-a-days. For camp drop off, this means a big production until the switch gets flipped back and I am able to leave.

My other concern was that DC, as soon as he heard he’d be going back to camp, began asking for his friend Ron (see story below). Ron had moved out of state a few years ago but still came up to visit his aunt (who was the camp director) and volunteer at camp each summer. With his aunt stepping down as director I was not sure that Ron would be volunteering any longer.

I tried to prep DC ahead of time, just in case Ron was not there this year. He seemed to understand, but with DC one never knows if he is “getting it” until he’s faced with whatever I was hoping he was understanding.

I saw that flip switch before we even left the house.

“Please DC, don’t do this today. Try to calm down and breathe before we get there”. Yes, I know that I can’t just talk someone out of anxiety, but still one can hope.

By the time we picked up Salli, he was “roaring and growling”. It wasn’t looking good.

Somewhere between Salli’s house and camp, he turned a corner and he was just the happy, goofy guy he had been before he went ’round the bend earlier at home. It stops and starts just that quickly, with no warning and often no explanation.

I did not know what snapped him out of it in the car but I was relieved for the moment. I knew that this did not necessarily mean it was over as we hadn’t actually “arrived” yet,  but I was hopeful.

Still holding my breath, we pulled into the driveway and got out of the car….. and there was Ron!

ALL HAIL the the Spirit of Chief Gotchabagollie (it’s a camp thing, don’t try to figure it out)!!!!

They hugged each other and DC announced something like “It’s a beautiful day” – that was not exactly what he said, but I knew what he meant and his day was now made.

As DC would say; Phew!

More about Ron and DC (from 2015)

Best Camp Ever!

Yesterday was DC’s last day of camp. The last day is also always “Awards Day”. When DC came home I asked him if he got an award. He said he did. He didn’t have anything with him so I asked him where it was – “At the camp”. (I don’t know if he actually won an award). I asked him what award he won…..
“Best Camp Ever!”

I am sure he did not win an award for “the best camp ever” although he reported it that way to more than one person. I do know that he was really excited about camp that day.

Feeling bad that he had to miss so much of the little bit of time he was scheduled to go to camp this year, I arranged for him to attend on the last two days instead of just his scheduled Friday. It did not make up for the rest of the summer but at least he would be there two days in a row during the last week.

When I called to ask if he could attend the extra day the director let me know that her nephew *Ron would be there volunteering that week. Ron is one of DC’s favorite people at the camp. Ron has been around and volunteering for quite a few years. Like most of the volunteers, he spent a good part of his summers at camp.

DC really, really likes Ron and when DC likes someone – he really LIKES them, to a point that he really needs to be reeled in so as not to frighten the subjects of his admiration. DC really does not understand that not everyone wants to be hugged, not everyone wants him right in their face all of the time. He gets so excited over these chosen few that I really worry that he will end up pushing them away. You have not experienced fear until you see this guy come barreling at you at full speed.  Even though at this point I know he is running to give me a hug and even though I know he will be able to stop before mowing right over me,  as he is coming at me and in the moment, I am still convinced that he is going to knock me into the next town.

The friends that he sees often are used to this and because he sees them often do not always get the in-your-face DC…… not continuously, anyway. There are a chosen few that he does not get to see all that often, that really get the full DC-experience. If I know we may be coming in contact with any of these people ahead of time, I do try to have a conversation with him before we arrive.

He is supposed to ask permission of the person before hugging, unless of course it is someone we have already established does not mind being on the receiving end of that back crushing hug. Normally when I have to make a rule, DC is good about adhering it. This particular rule seems to give him a bit of trouble. He just gets too excited to think about the rules.

He has had a few experiences where someone was absolutely NOT happy with DC’s attention.  In one instance it caused a schoolmate to have meltdown. This upset DC for days. He doesn’t understand. It is not clear to him why he can hug some friends and not others. Some just try to avoid him, a few put up with it because they understand and others do not mind at all and actually are happy to see him. Ron is in the “happy to see him” group.

A few years ago, Ron moved down south with his family. DC continued to look for him at camp and every camp event throughout the year. As soon as he was aware that a winter camp activity was coming the very first question would be about Ron. It took a good long while for him to understand that he had moved far away. I am still not sure that he quite understands ‘moved away’ but he does finally understand that Ron will not be there all the time as he once was.

Ron does come back on vacation to visit his aunt during the summer and comes to volunteer while he is here. In case you missed that…… He spends his vacation volunteering at the camp. Impressed? I certainly am.

DC was so happy to hear that Ron would be there and I am so glad I opted for that extra day. Ron doesn’t seem to mind having DC all over him all day. He is very good with him and I don’t feel as if I have to give DC too many instructions beforehand because I know Ron can handle it.

Halfway through the last day of camp I received a text from the assistant director with this photo.

camp 20151

 

I know that DC did not win “The Best Camp Ever” award. I am sure he was telling me that he had the best day at camp ever  –  and a good part of that due to his friend Ron.

*****

*Name changed

 

 

 

 

The End of The School Year

DCBarney

DC has been out of school since 2012. He walked with his class at the high school in 2010 and then moved on to the school system’s Transition Program for the two years between 18 and 21 (“school age” in this area is age 3 to 21 for SPED students).

The tiny boy with the bigger than him Barney lunch box seems like forever ago and not that long ago at all.

When, as the parent of a SPED student your life is pretty much all encompassed by the school system; IEP’s, therapies, fighting for everything (oh, the fighting), it is very difficult cutting the cord when it is all over.

Yes, there are still meetings – we call them IP’s now (no E for Education) and there is still the paperwork (which has more than doubled) but it was really a rude awakening. It took a few years for me to stop panicking when winter, spring, Christmas school vacations came around thinking I did not have a plan for DC, only to realize I did not need a plan because he was out of school and his program was year-round.  It was very hard to make a break from the school calendar.

I remember going with *Salli’s mom (and our caseworker) to look at the many Group Supported Programs in the area, trying to find a good fit for DC and *Salli for after they aged out of the school system. We saw many programs, good and bad.  I specifically remember coming home each week feeling drained and depressed. I did not say anything at first because I really just thought it was me being overly emotional until *Salli’s mother said the same thing to me one day. There was no more “school”, no more moving into the next phase in the school system – we were looking at the rest of their lives. This was it. This would be their life.

It just hits you in the face.

We have adjusted though, it was a long adjustment period but we have made the adjustment. Now I find myself oblivious to the last day of school and anything related to school.

I remember getting a message from one of DC’s friends and explaining, when I answered him later that day, that I did not want to reply while he was still in class.

DC’s friend: “It’s July. It’s summer vacation”

Yes, I am now officially oblivious to it all….

Except for the bus. I do, at times still call DC’s work transportation  – the bus.

Me: (Answering DC’s daily “I’m going home Nowwwww” phone call to me) “Are you on the bus?”

DC: No!

Me: (panicking a little) Where are you? Aren’t you on the bus?

DC: No!

Me: (panicking more) Where ARE YOU!

DC: In the car.

His adjustment is complete.

*****

Finish the Sentence Friday is a link-up where writers and bloggers come together to share themselves with a particular prompt (different formats each week of the month). Hosted by:  Kristi Campbell of Finding Ninee and Kenya G. Johnson of Sporadically Yours this week we are finishing the sentence, “It’s the end of the school year, and…”

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.

 

 

 

 

Everything is Related – It’s a Celebration

 

As you may or may not know, over and above his regular day job/program, DC also volunteers at a local theater. He has been there for four and a half years now. His best friend, BB just recently started volunteering there as well. 

If DC could choose his dream job, it would be one (or all) of three things; Working in a Bookstore, Working at Disney (or anything having to do with Disney), Working at a Theater (plays and musicals) – 4 Years ago today, DC and his Job Coach headed off to his first day of volunteer work at the theater. My Broadway Baby got his wish…. ~ From “His Dream Job” March 2017

 As one might guess, DC is more interested in working the Broadway Productions, but the volunteers are required to mix it up and work a few of each type of production held there. 

Some of these are difficult (or boring) for DC so I always try to come up with something to relate whatever show he is working to something he enjoys – which is usually something that begins with Disney, but not always.

A while back he was scheduled to work “The Phantom of the Opera”. Now don’t get me wrong, DC is the ultimate fan of musicals, but this is more opera than musical. To try to pump up the enthusiasm and interest, I told him that I saw the Phantom of the Opera many years ago in New York City (his favorite place) on Broadway (his second favorite place) when it first opened. 

Me: Do you know who played the Phantom when I saw it? It was the same person who played Cornelius in a movie that you really love.

DC: Walter Matthau (not pronounced quite that way but I knew who he meant)

Me: No, Michael Crawford. He played Cornelius and Walter Matthau was his boss in the store (Hello Dolly).

(Seriously, you have to give DC props for knowing Walter Matthau and knowing which musical just from the name Cornelius)

That was the best I could come up with…

When all of the attendees are seated and the show gets going (pending a 10-minute hold on the door, of course) the volunteers are allowed to go in and watch a good portion of the show. For this particular show, DC and Mrs. H stayed out in the lobby due to the production’s use of strobe lights.

There are screens in the lobby though. Mrs. H reported that as soon as the operatic singing began, DC in his not so “indoor voice” announced – This is ‘ted-a-bull’!

I suppose it was a very good thing that they were not inside the theater at the time.

Moving on to the “celebration”…..

Many years ago, when I got married, I gave the DJ a list of three songs that he was not allowed to play, even if a guest requested them. They were banned – BANNED!

The first was Kool and the Gang’s “Celebration”.

There was not any sort of affair that one could attend without ”Celebration” being the first song that was played, as if it was an original idea and no one had ever thought of it before. 

“A Party? A Celebration? Oh, we should play Kool and the Gang! We are so clever!”

Nothing against Kool and the Gang, I do like many of their other songs, but I am not a fan of this particular song.

Then, like clockwork, the very next musical offering 99.99% of the time would be, Sister Sledge, “We are family”.

No, no no no, just no.

The third was the chicken dance, because…….

Chicken Dance.

(Little did I know that one of DC’s early intervention teachers, Mrs. T (you know who you are) would teach him the chicken dance and he’d be doing it ever since)

Flash Forward to 2012 when DC’s Winter Guard Team chose – you guessed it – “Celebration” as their performance song for that season.

I mentioned my banned wedding song list to TonyaSalli’s mother one night at Winter Guard practice after listening to Celebration in parts and in its entirety all practice long. She laughed so loudly that it got the attention of the director who also had a good chuckle over the torture I was experiencing. 🙂

DC loves Winter Guard but he never really gets attached to any of the songs they have used over the years. If they used something like “A Dream is a Wish Your Heart Makes”, “Beauty and the Beast”, “Seventy-Six Trombones”, or “The Trolley Song” – that would be a different story. Being a Disney/Broadway/Musical type of a guy, he is not always interested in the popular/top 40 music they use. He does like the songs and knows them when he hears them later, but that’s about it. I thought this would work in my favor with “Celebration”, but noooooooo….

He will randomly search for it on you-tube and listen to it over and over, still. to. this. day which I begrudgingly admit might actually come in handy as the next show that DC is scheduled to work at the theater is none other than – Kool and the Gang…

No prep necessary. I simply reminded him of his beloved “Celebration” and he is ready and seems to be looking forward to this show.

So, I guess you can say that Kool and the Gang came through for me in the end because, Everything is Related.