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.

Traditions New

 

Three years ago we left for vacation early on Christmas morning.

Two years ago was the very first time in my life I believe, that I did not have to go anywhere on Christmas Day.

Back, many years ago when I was single and working in a convalescent home, I would always volunteer to work on Christmas Day firstly because I absolutely LOVED the clients which turned out to be a big reason why I decided going to school for nursing would not be for me – I just got FAR too attached to the patients/clients.  Secondly because I could avoid the whole Christmas dinner with relatives and just show up later, after work.

Then I became a mother and still, staying home never seemed to be an option. DC had little time to “play” (I use the word, play loosely) or use his gifts before we had to leave and go somewhere for dinner.

We go to my mother’s on Christmas Eve, a tradition she started many years ago for the same reasons – too much to do on Christmas Day. He gets his Grandma fix. We have dinner. We open presents. He gets to see his “Fam-ill-lee”, which he loves. So he is not missing out on any of the regular Christmas festivities.

I believe it may have been the vacation three years ago that finally allowed us to break the Christmas Day tradition for the following year and, this year became the second Christmas that we just stayed home. DC was happy. I was happy. Doug who is not really a “holiday guy” and is really only in it for the food, was also happy.

DC had time to look at and play with all of his loot. He had time to just “chill out” (his latest phrase) and like the year before, we went out for Chinese food at night for dinner. We are lucky that there happens to be a pretty good sit-down Chinese restaurant about 5 minutes away, in the next town.

Chinese Food Is a Newer Development in DC-land: We all know that DC is a picky eater. There are only a handful of items he will eat in a restaurant. You see, eating out is supposed to be fun, so yes, he will eat a salad at home, but don’t ask him to eat one in a restaurant. He will eat vegetables at home, but vegetables are not restaurant foods, so just forget it. He will eat pasta at home (another newer development) but he is not happy about it and will NEVER eat it anywhere else – correction: he did twice but both times he was at a party and there were no other options.

Restaurant food is:

Cheeseburger and french fries

Wings

Pizza

Garlic Bread

Chicken Tenders

BREAD

His limited menu, limits our dining out choices, especially on Christmas night when almost all one can find open are Chinese restaurants.

About a year ago, we ordered takeout and the only thing that DC would eat on a Chinese food menu was the wings, so that is what he ordered. I ordered the sweet and sour shrimp. DC saw it. It was battered and fried, so he wanted to try it. I warned him that there was shrimp inside, but it was battered and fried so he was not going to pass it up.

He liked it.

He came back for more.

We determined that this was not just a fluke when the next time we ordered takeout he ordered the wings and again took half of my ‘Sweet Sire Shimp‘.

So now our new Christmas tradition of Chinese food is something he looks forward to and not something we have to research and figure out what we can talk him into.

We went…..

There was no heat….

It was okay though….

We, along with the 3 other tables of people, ate with our coats on…

DC, in his short sleeve shirt (we just recently transitioned from his fall coat to his heavy winter coat, so the transition from short to long sleeves will have to wait a bit) did not want to wear his coat. One does not wear a coat while eating in a restaurant.

Normally I would try to avoid this argument, but IT WAS TOO COLD not to make him wear it.

He got over it when I told him he could wear it over his shoulders like a cape.

 

We ordered a Pu-Pu Platter, which he thought hilarious.

He ate the wings.

We had the rest.

He ordered his “Sweet Sire Shimp

 

Let’s just say, normally when DC is done eating – and he eats very fast – he is done. Keeping him occupied while Doug and I finish is not always easy. He has his book, but that only lasts so long.

Believe it or not, we stayed, I am guessing close to an hour after he was finished talking to the people in the booth behind us – which is what one does in an almost completely empty restaurant. He was totally included in the conversation and seemed to be enjoying it. He never once asked to leave.

They were visiting from the warmth of Arizona and staying in a hotel so unlike us who planned to be there,  I imagine that this restaurant was one of the very few options open for them.

We had a good time and there were hugs all around when it was time to leave.

It just goes to show that you do not always have to do what you have always done, just because you have always done it or are expected to. You can make your own holiday traditions and have a good time doing it.

 

Merry Christmas and Happy New Year from DC, Me and Doug too!

 

 

 

 

 

 

 

 

 

Holiday Reruns – Lessons from Santa

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December, is the time for reruns. I love reruns, especially holiday reruns. The following is a post from December 2014 about the important lesson DC and BB learned while riding the Santa Train.

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Lessons learned on the “Santa Train” – 2014

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(Code word of the day: “Supplement”)

As parents, we all come to the ‘Questioning the Existence of Santa’ crossroad sooner or later. It is a sad milestone. It begins to be difficult for them to understand and believe in something that they can not see. Sure we see Santa and his helpers quite often during the months before Christmas, but never during his Christmas Eve deliveries. This causes our children to question his existence. Why can’t they see him? Why must they be asleep? As I explained to DC, Santa has a job to do. If he took the time to stop and visit with the children in every house he delivered gifts to, even with his magic, he would never be able to finish in time to get back to the North Pole to celebrate Christmas with Mrs. Claus and the elves.

It took DC many years to understand Santa. He knew he would receive gifts, but the whole idea of Santa was not something that could be understood easily. His not understanding, did not stop Santa from leaving him gifts.

When it finally clicked and he did finally get it, he was all in! Now that he does understand, he would never and will never question his existence.

The one problem was, DC ‘s Christmas requests have always been small (in size) gifts. Santa could very well bring him 20 DVD’s, but the pile of gifts (visually) would be very small. DC doesn’t understand cost/size vs. number of gifts. He expects a very big pile of gifts. So, over the years I would always “supplement” the Santa pile with gifts of my own.

Being a single mother for more than 20 years now, I am the sole “supplement-or” (yes, I know that is not a word) of DC’s gifts. Which means I not only “add” to what Santa brings just to make the pile look more exciting for DC, but I also, of course, have to buy additional gifts from ‘Mom’. This gets to be a little bit overwhelming for me, not only in cost, but in trying to come up with other gifts ideas to make that “pile” he needs to see.

Now that DC is an adult, and the items he asks for are smaller still, it is becoming harder and harder to “supplement” Santa’s  gifts, to make that Christmas gift pile”,  I did finally have to confess to him that some parents, with adult children, have to help Santa out a little bit. Santa has so many little children to deliver packages to on Christmas Eve, that it is hard for him to get to everyone. So now that the is an adult, Santa only delivers his stocking and the rest of the gifts in his pile are from Mom. Santa always did a pretty good job with his stocking, by the way. He was fine with this. As long as Santa is coming, even just to bring a stocking, all is well.

Coincidentally, the morning I read the post from Autism-Mom, was the day that DC, his best friend, BB, BB’s Dad, Doug and I were going to take a ride on the Santa train.

Earlier this week, BB had just been told by one of his other friends that he was too old and should not still believe in Santa. He was upset by this, but BB knew better. He knew he was correct in believing.

Both DC and BB were very excited about riding the train. They always have the best time when they are together anyway.

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Santa boarded the train a few minutes into our trip. He received more hugs that he expected, I imagine.

BB mentioned to Santa, what his friend had said to him that week. Santa took a little bit of time to talk about it with BB and DC.

(This video below is very poor quality – it was dark on the Santa train, but you can hear some the conversation and Santa’s advice to BB)

“Those who don’t believe, well they are the one’s that are missing out” ~ Santa Claus

So there you have it, straight from Santa’s mouth. BB felt much better. He knew it before but now he really knows that he was right all along…

 

 

 

 

 

 

 

 

Holiday Reruns – In Search of… the Christmas Spirit

 

From December 2016 – In an attempt to muster up some Christmas Spirit, we decided to try to find and visit a few “Christmassy” towns and/or events. What I was really looking for was one of those little towns that one sees over and over again while watching far too many Hallmark Christmas movies (they start running in October, you know).

I wanted to find one of those places where the hotel room is decorated for Christmas. Where you can walk out onto the overly decorated street to find carolers singing, a hot chocolate/cookie stand, Christmas parades and Santa out on the town green. I don’t really care all that much for hot chocolate, but that is what I want. Where can I find a place like that?

Although we did not find the “Hallmark Village”, we did visit a few interesting and yes, “Chrissmassy” places.

Our search will be continued this season… so look out Hallmark, here we come.

In the meantime, let’s revisit last year’s search.

 

#TravelingWithDC – Christmas Quick Trips

DC loves Christmas as much as he loves Halloween.

He loves getting to see Santa, but even more than Santa, he LOVES the rare occasions when he gets to see Mrs. Claus.

His Mrs. Claus cup runneth over this year…..

Me, not having the happiest year this year, needed a boost and set out looking for some Christmas Spirit. Although, I did not really find it – DC sure did.
It was enough for me just seeing him enjoying himself so much and all of the Mrs. Claus sightings certainly added to his excitement about Christmas coming.

Below are a few Facebook posts along with some photos of our journeys this Christmas season (and maybe a little bit before the season)

Our first Christmas-themed trip was accidental. We decided to visit the Yankee Candle Village in South Deerfield, MA. We did not know that we would find Christmas, but find it we did.

Trees, lights and snow.

There was singing in the snow……

And…. the first Mrs. Claus sighting of the year!
Thinking he was going to be disappointed that Santa was not there – she apologized and told him that Santa was busy at the factory. Little did she know that Mrs. Claus beats Santa anytime in DC’s book.

There was lots to see and still enough time to take in a show – a quick one.

Thanksgiving was spent in the Essex, CT area but Christmas was already all around..

No trip is ever complete without a book store visit.

December hit and even after a full month of sappy Hallmark Christmas movies under my belt, the spirit was eluding me. So we took a trip to Mystic, CT for the Christmas Fair.

DC’s first meeting with Santa of the season. Santa was unprepared for the big hug he received!

Then he spotted Mrs. Claus! She got an even bigger hug! The icing on the cake!

There were elves, carolers and llamas wandering about. There was music, magic

and an Alice In Wonderland Tea Shop and Store.

There was of course a visit to a book store but I forgot to take a photo.

Treats; we can not forget the treats with hot chocolate.

DC, of course was full of Christmas Spirit by now. I, on the other hand was not…. but it was still enjoyable watching him get so excited.

We planned a weekend in Sturbridge Village the weekend before Christmas, but there was a big storm. Luckily we were able to cancel and re-book for the following weekend. This would mean we would be away on Christmas Eve, Eve and Christmas Eve Day. We would have to rush home for Christmas Eve night at my mother’s house. It would be a little bit rushed, but we decided to book it.

I am glad we did. DC had the best time!

It was just beginning to get crowded when we arrived so one of the workers told us that we would have better luck if we followed the map backwards and went to see Santa first. Later the wait would be hours long. We took that advice and headed straight for Santa.

Santa spent quite a long time with DC -, so much time that I was beginning to get nervous that we were holding up the line. DC was thrilled.

Next, we visited the Talking Tree – he got a big kick out of that.

But he was a little preoccupied by a sign he noticed on the way up to see Santa so that HAD to be our next stop. He was not going to wait any longer.

His THIRD visit with Mrs. Claus this year!

One Happy Guy, right there.

The rest of the Village was “A Christmas Carole” inspired. We watched the lighting of the tree, Carolers were singing. DC met the Ghost of Christmas Present and actually asked him a question instead of his usual reciting of movie lines.

He was not willing to try a sampling of the Cratchit Family Christmas Dinner, though.

“No, No. No! I didn’t! No, I don’t like it!”






At the Bonfire – “Mom, I am getting very nervous about this!”

Yes, of course. Didn’t you know? Couldn’t you guess? There were …….

BOOKS!

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He was right next to me

It happened a few weeks ago…..

DC wanted to make pizza. “Making” pizza means opening a ready-made crust, adding sauce, ‘sparkling’ cheese (Veggie grated cheese), garlic powder (because he is obsessed with garlic) and pepperoni.

We do this often and DC helps with quite a lot of it.

I had opened the crust and the sauce. DC spread the sauce around the top of the crust and sprinkled his garlic and cheese all over it. I got the pepperoni out of the refrigerator. It was already opened from the last time we made pizza. I buy the pepperoni already sliced in a bag, because I buy turkey pepperoni and I really haven’t seen it in any other form, and it is just easier.

We have about 4 feet of counter space to work on with almost 2 feet taken up by the microwave, so when I say that “I was right next to him”, I mean right next to him. Our arms were probably touching.

He was putting his pepperoni on his pizza and I was putting something in the microwave. I looked over and saw him with the scissors holding one of those anti-moisture packs (silica gel) over his pizza, ready to cut it open and sprinkle it over his pizza. It must have been in the pepperoni pack.

You know, those packs that say “Do Not Eat” and “Throw Away”? Yes, those.

I have read up on them more since this incident and have found out that they are not poisonous and probably will not hurt you unless eaten in large quantities, but the fact remains that the “Do Not Eat” and “This is not food – Throw Away”, would lead one to believe that they are poisonous and harmful. I have always believed that to be the case, so much so that I have talked to DC about them before. They are always in his juice mix. I usually get to them before he finds them but I have talked to him about them many times. Finding one in his pepperoni did make a connection in his mind to the discussions about the packs in his juice mix. It is two different things. We talked about juice, not pepperoni. **

That day (still believing that they were dangerous) I was beside myself. I went over it and over it with him. He laughed at first but when I burst into tears I think he understood that this was serious (but not understanding why) and am pretty confident that he will not touch one of those again.

It haunted me for weeks… finding out that they were not dangerous as I had always believed did not make me feel any better. He was ready to eat some strange thing. He did not know what it was but he was ready to eat it anyway (How does that even happen when there is such a limited number of foods that he WILL eat?).

DC does not just “pick up” on information (see: A Chair is Still a Chair) he has to be taught – he has to be shown. After the teaching and the showing; if he still does not understand, I have to resort to making a rule.

I resort to “rules” when I know something is beyond his grasp.  (Oh! The rules I have had to make!). Please don’t tell me that I am not giving him enough credit. I try and try to explain in many, many different ways and I do not give up even after the rule is made, but his safety has to come first.

He knows what rules are.

He follows rules.

He does not have to understand the rule – it’s a rule so he follows it.

Many times, rules are the only way I can keep him safe.

He follows rules; that is a good thing.

The downside of this is that – he follows….

If someone with not the best intentions were to tell him to do something – he would. He is following directions and aren’t we supposed to follow directions? Isn’t that what he was taught to do? If someone tells you to do something, you do it – right?

There are no gray areas.

I remember being at a relative’s house when DC was little. He was sitting on the floor and had gotten hold of a plastic bag. When I took the bag away from him a family member said “He’s not going to put it on his head and suffocate right in front of us, you know.” Yes, I did know that but if he was going to learn not to play with plastic bags then I couldn’t let him play with plastic bags. Period. There is not a “sometimes you can” category  It is either you can or you can’t, with DC and the rule was “he couldn’t”.

I cannot teach him to follow my rules but not to follow other’s rules.

I cannot give him a list of whose rules he should follow – teachers, his boss, his staff, police, etc. because there will always be something that comes up that strays from that list.

DC knew I was very upset about the pizza incident but again… he did not understand why.  Very often, he does not understand things unless they happen. When I told him that he could have gotten very sick, it did not mean a lot to him. Sick means a cold, sick means the flu, sick means a ‘heady-ache’ and nothing more serious than that.

He looks both ways when crossing the street but I do not always believe he is really LOOKING at anything. Most times he is just going through the motions, which is why he never crosses the street alone. He does not understand what can really happen if he were to be hit by a car or if he was involved in any other sort of accident. He does not understand unless it happens and as I do not want any of these things to happen, I have to just keep finding different ways to explain safety to him and making rules.

There was this one time that DC (before he had his own laptop) was eating in the kitchen watching something on my computer, which was on the other side of the table. I was 10 feet away in the living room. I heard him get up quickly and I knew something was wrong. He was choking. But he did not jump out of his chair to come to get me. He jumped out of his chair to run to the other side of the kitchen to pause the movie BEFORE he came to get me! (I came running when I heard him jump up, but the fact of the matter was that he was more concerned about his movie than choking. He knew something was wrong and he was panicked but his movie came first.). If he hadn’t been able to get whatever was lodged in his throat up by himself, would he not let me help until his movie was paused? I honestly do not know.

He just cannot understand the “why” of things.

Why should he get help before pausing his movie?

Why can’t he walk into the road?

Why can’t he eat the moisture pack?

Why can’t he talk to strangers? And what IS a stranger?

Someone he doesn’t know?

——-Why can he say hello to all of the people he doesn’t know when we walk on the trail? Aren’t they strangers?

Why can’t he stick the knife or a fork in the toaster?

Why can’t he put his hand on the stove when it’s on?

Why can’t he run with scissors, play with knives, stick things into electrical outlets?

Why?

But there is no way on earth that I can come up with every single thing that might happen or could be dangerous. If he understood the “why” of things it might be easier for him to see the danger in some things without having to have everything explained to him.

So I have to keep him close to me and hope that when he is out of my eye shot, the people who are charged with keeping him safe will keep him just as close.

But then again, in this case…. he was right next to me….

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**Please do not take this post as a be all end all about moisture packs being safe. I looked into it and that is what I found, BUT I am sure there are exceptions. Always call poison control or seek medical advice if they happen to be ingested.**

 

 

 

 

 

 

 

 

 

 

Autism in the Old Days: The Spectrum, Cures and Treatments

 

(This post and it’s counterpart “Autism in the Old Days: Diagnosis via St. Elsewhere” are written strictly as a remembrance and as a comparison about how times have changed and how much in the dark we were as parents back when DC was diagnosed. It is about all of the things we did not know and how differently things are handled today. But over and above all of that it is about the slow process to the realization of not necessarily having to follow every direction laid out in front of us, just because the presenters, be it doctors, teachers or therapists,  are supposed to be the ones that knew better. Having to figure out for ourselves that the way things were presented and taught to our children and us, as parents, was not always the best way to go about things.)

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Back in the “Olden Days” (when we were all walking uphill in the snow to AND from school) when DC was diagnosed (the early 90’s) there was no internet to speak of. There was little information about autism readily available to parents. Yes, there were a few books that I’m sure every parent owned, but really not much else. We had to depend on our doctors and the school system.

One of the first books that I read was a book called “Let me hear your voice”. I remember that even though it was a book about “One family’s ‘triumph’ over autism”, it did not offer a lot of hope. Their child was diagnosed early; at one year of age. They had the resources to provide in home intensive behavior training, something that I would never be able to do.

As I mentioned in my last “Autism in the Old Days” post, DC was not officially diagnosed until he was 5, not for lack of trying, so the other theory that was in wide circulation at the time was that before the age of 3, a child’s brain could be retrained. If you missed that window, it was too late. I missed that window, again not for lack of trying.

I remember when DC was about 6 or 7, I was going on vacation – the first in years. He was going to spend the week with his Dad. I was anxious enough about that – not that I did not trust his Dad, but because I had not been away from him for longer than one of his overnight visits to his Dad’s – ever. But I also remembered that book. I remembered how the author went away on a four-day business trip and her child did not know her when she came home. I had to be talked into going by many, many people and still I really did not want to. I went and of course he knew me when I got home and all of that worry was for nothing. But this is what happens when you have to depend on little bits of information and are pretty much on your own trying to figure things out.

Back in the “Olden Days” there was the Lovaas Method. Yes, I had that book as well. Now-a-Days it is known as ABA. Again, this behavior training had not made its way into the school system and, like in “Let me hear your voice”, most folks that used this method had the resources to do this at home, 40 hours per week. I was a little bit leery about the whole thing. I thought a lot of it was harsh and really just cherry-picked a few ideas here and there from the book. (This is in no way an opinion or a judgement about ABA. I know that it has evolved over the years and is probably nothing like the original offering). It was quite a few years after DC left early intervention that the school system trained staff and designated a classroom to ABA.

Back in the “Olden Days” there was no spectrum, that we knew about anyway. Autism was Tommy Westphall, Rain Man and Bernard Rimland and his son (Autism Research Institute)  We knew about no one or nothing else.  These, our only examples of Autism, also did not offer parents much hope.

In my quest for information I remember attending a few seminars early on. One in particular given by a woman who spent many years as a Special Education teacher. A woman who I had met in a sign language class, who worked with autistic children, recommended this particular seminar and attended as well. The seminar was supposed to be about the progress that was made by many of her students over the years.  It certainly was not. I recall one man standing up and saying “You are not offering us very much hope here!” and she was not. It was all just gloom and doom, so much so that the woman who recommended it, apologized profusely to me afterwards.

That was the last seminar that I ever attended.

Now-a-days we are bombarded with “cures” and causes on a daily basis. Back then, if something hit the news, it was a big deal and please remember that we were programmed to believe that there was really no hope and that we were supposed to be looking for a cure.

In 1998 came the “Break through” in the treatment of Autism. One mother brought her son in for gastric/digestive testing. Secretin was administered as part of the test. Internet was now available but still not widely used as it is today. I don’t believe I even had email until 1998, never mind being able to figure out the rest of the internet.

“Media reports of an individual child’s dramatic improvement after a single dose of the hormone secretin administered during a gastrointestinal (GI) procedure (Beck and Beck 1998) appeared on television and the internet.” 

They were touting a cure. I did not even hear about this until I began receiving phone calls from friends, family and almost complete strangers. I have to admit that although we were still being programmed that a cure was the only thing we should be looking for, I was a little bit afraid.

I do not believe I have ever said this to anyone other than Sandy, my boss at the time, who made the mistake of asking about it and then had to listen and watch me bawl my eyes out because I felt guilty that I was afraid of this. What if it was real? How could I not have him treated? What if after he was treated and “cured”, I no longer had the same child? I felt guilty and felt selfish for even thinking those thoughts.

That being said, and I do realize that I have said it to the point where I should just make it my blog header:

My feeling of never wanting to change him has not changed, but he is older now and I worry about the future every single day.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

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Even with all that DC has accomplished over the years, the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings and will long out live all of us. He will at some point have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers.

 

It was a confusing time for many of us. Now-a-Days, when something like that happens and we hardly blink an eye…

DC accomplished far more than I ever anticipated he would, despite the “no hope scenarios” we were offered way back then. Much of his accomplishments came when I got to the point when I stopped reading and listening to the way it is supposed to be done and did what I thought was best. We all hit that point eventually.

I had to learn on my own, to choose my battles and understand that he does not HAVE to learn to do everything that other children his age can do.

If he can not learn to ride a bike (and why the hell was that so important at one time?) then he can not learn to ride a bike. He has an adult trike and he is fine with that.

If he can not learn to tie his shoes, they sell Velcro now.

This is not to say I gave up trying to teach him things. It’s just that I let go of the things that are really not important. I let go of the mindset that he has to be like every one else a long time ago.

Because he doesn’t….

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The therapies and theories written about in this post should in no way be considered as recommendations or as proven theories.  Like today, new theories and treatments come along every day (we had much less of it due to the lack of internet) but this does not mean that any of them are tested of proven. This post is about DC and I and what was going on around us at the time regarding autism.

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Next Installment: Autism in the Old Days: Spinning and Stimming