Knock Three Times

knock three times

DC and I attend many events, activities and parties. Many related to his autism or specifically geared to special needs children and adults, many are not. Although I do write about some of these events or trips, I certainly do not write about all of them as, in most cases, there is nothing significantly related to DC and his autism to write about. This event was not going to become the subject of one of my posts; it had nothing to do with Autism, there would be no princesses, no wizard, no costumes, no bookstore – just DC, my mother and I attending a fundraising event hosted by an old friend of mine.

After attending, I do feel the need to write about it, and write about it from the perspective of DC and his autism and how, at times people really do go out of their way to make DC comfortable.

An old friend of mine invited us to his annual fundraising event.  We could not make it last year, I can not remember why, but we were available to attend this year. We invited my mother to go along with us. Knowing full well that a sit-down-dinner at a table with probably 6 to 8 other people would be tough for him (and me), I tried, as I always do, to relate* the event to something of interest to him.

Tony Orlando, The Honorary Chairperson, would in attendance. Now, I am old enough to know who Tony Orlando is, but I didn’t know how to relate him to something in DC’s world. There have been many times where I am surprised by who DC does know. Usually I find out that they are “the voice” of a character  in one of his movies. I checked on-line to see if Tony Orlando might have been the “voice of” anyone DC might relate to. He was not. But then I realized that whenever we hear “Knock three times” on the radio, I make DC sing along with me. We’ve done it enough times that he does now recognize the song. It is also one of the few songs that DC does not say, “Mom, please STOP singing!”

First hurdle, relating this event to something in his world – check!

The event was being held in the midst of our Halloween party season. We had already attended one party and we had a few more on the schedule in the next few days. The event’s description indicated that it would be a 40’s style gala. I did not know what that really meant but I went out and purchased a 40’s style men’s hat to go with DC’s suit.

Second hurdle, turning the event into a “costume party” – check!

My greatest concern was the seating arrangements. As I talked about in an earlier post, there are not many things that we avoid because of DC’s autism, but we do try to avoid situations where we will be seated at a crowded table with strangers.  There are times when it can not be avoided, and we get through it, but if I can avoid it, I will.

I am usually not a big fan of eating in the dining room with DC. The tables are crowded with strangers. I get anxious because DC, although pretty well-behaved in restaurants, can get a little bit loud and chewing with his mouth closed does not come naturally to him, he has to be reminded continuously. When he does remember on his own, he feels the need to point it out to me throughout the entire dinner. He likes to bring a book with him whenever we go out to eat, but at these crowded tables, it is not always possible, there just isn’t enough room.

I was never of the mind that other people should be made to just accept DC’s behavior. Yes, if I am trying to manage the situation I can live without the stares and comments – but letting him do whatever he wants in the name of awareness, is not something I ever subscribed to. I do not believe that every behavior can or should be blamed on his autism – it is never used as an excuse.

 

I was told that I had to e-mail someone for reservations before purchasing tickets. I am not one that ever asks for special treatment or accommodations for DC, but since I had to send an e-mail, I decided I would just mention that DC tends to get a little bit anxious in crowds and if they happened to have a table that was not full; would it be possible to be seated there? I didn’t want them to go out of their way or change anything around, I just thought that if there was already such a table available, I would appreciate it if we could be seated there. It wasn’t a deal-breaker, we were going either way, but since I had someone’s ear I thought it could not hurt to ask.

DC has issues with many types of clothing, more-so now than when he was younger, but there is nothing better, in DC’s eyes, than wearing a suit. I suspect the fact that people tell him how handsome he looks is the number one reason – if you neglect to tell him just how handsome he looks, believe me he will bring it to your attention. Add the hat “costume” to his already handsome apparel and he was over the moon.

The very first thing DC noticed upon arrival was the sign for the “Grand Ballroom”. I had not thought of this aspect when looking for things relatable for DC. Not only was he going to see the ‘voice of’ “Knock Three Times”, while looking handsome in costume, but we were going to the “Ball”! How did I miss that one?

We were in the lobby with quite a few others who had arrived a few minutes early. We were told that we had to wait a few minutes as the staff was still in the process of setting up. DC was having the normal anxiety he has upon arriving anywhere. I always know it is coming, he just needs a little time to shake it off. The woman at the door noticed he was having a difficult time, and shuffled us into the ballroom. We were away from the crowd and he didn’t have to ‘wait”. He would have been alright waiting with everyone else, but it would have taken him longer to shake his ‘arrival anxiety’, so I was very appreciative that she let us in.

We found our table. It was the very last table all the way in the corner. It was perfect.  DC, who generally is not aware of anything around him in terms of pushing his chair out, getting up from the table without looking to see if anyone is coming or putting his coat on, arms flying outward to accidentally hit anyone that might be in range, had room behind him so he would not bump  into anyone else’s’ chair or knock anyone over when he got up from the table. There was no one behind us to bother if he felt the need to get up and dance. We were the only people in the ballroom other than the staff and a few people I assume were with the organization, for quite some time. Not long after, Tony Orlando came down the stairs. I do not like to bother people. DC has had his picture taken with many people over the years but it was almost always as a photo op. I just do not feel right asking people that are not there for that reason, to take a picture. My mother, had other ideas. She reached into her box of ammunition and pulled out the ‘Mom Guilt’….. “Oh you have to!” , “He won’t mind, he’s used to it” (that went on for awhile),  she stared at me for awhile and then resorted to the sideways glance, “Now, Vickie” in a tone I hadn’t heard in years, I finally gave in, only under the condition that SHE had to do the asking.

She went over and asked him and of course he said yes. I don’t know what else she said to him, but he was happy to do it.

First, he told DC that he looked like a movie star. You know that won DC over completely. I told him that his friend BB and Mrs. H will be so jealous. (That is usually DC’s line when we go somewhere that he is excited to be, but I decided to use it just as an added incentive to help move him out of his anxiety).  Mr. Orlando was very good to DC. They had a little chat and he told DC that they would be “friends forever”, and DC certainly believes they will.

I am officially adding Tony Orlando to the list of people I will always hold in high regard  for not only taking the photo with him, but taking the time to actually try to have a conversation with him and making him feel special.

 

When they began letting all of the other attendees into the ballroom we realized that we were the only people that would be sitting at our table. One of the women that I had e-mailed before we purchased the tickets stopped by to be sure we didn’t feel as if we were being isolated. It was a perfect table and we did not feel isolated at all. We didn’t expect them to go that much out of their way to give us our own table, but I was so glad they did. DC had room for his ever-present book, he was able to get up and dance behind the table when he wanted to. There was a window right there that helped to keep him occupied; he loves to stand and just look out the window. When it got dark outside, the window then served as his own personal mirror.  There is no one that loves looking at himself in a mirror or any reflective surface more than DC does, especially that night , while wearing his new hat.

Third hurdle – Not siting at a crowded table – check!

He enjoyed watching the ballroom dancers they had performing. At one point I did take him out closer to the dance floor where he could watch them (and follow along, pretty well, I might add) from the sidelines. He sang along with “Knock Three Times” and they even had pizza bites as one of the appetizers! What could be better!

Forth hurdle – DC’s very limited food list- check!

He had a wonderful (oops) ‘terrific’** time. Fortunately the ‘drop the chocolate, frosted, cupcake strategically down the opening of his jacket’ incident occurred toward the end of the evening; the smeared chocolate all over his shirt, tie and the inside of his jacket did not ruin the entire evening.

I did contact my friend, Joe the following day to thank him and to let him know how much his people went out of their way to make DC comfortable. I appreciated everything they had done.

They have also been added to my list.

 

*(That “Everything is Related” post I keep threatening to write IS now in progress and will be posted at a later date)

** “terrific” DC’s latest word, replacing “wonderful”.

“PLEEEEEEEEESE”

Please

(code word of the day – ‘Paper Towels’ = Toilet paper)

A few weeks ago, DC and I were on our way to a dance. I was planning on grocery shopping the following day but decided to stop at a convenience store to pick up a roll of paper towels – just as a little bit of back-up until I went shopping the next day.

I intended to pick up only one roll as I did not see any need to pay convenience store prices when I would be going to a grocery store the following day. It was no emergency, but I do know how quickly they seem to disappear in our house.

DC came into the store with me, hoping to pick out a treat. He went to the ‘treat’ aisle and grabbed his bag of  Combos – no surprise there. I went to the next aisle. We met in line at the register.

There was one person in front of us and another behind us. DC looked at the single roll of paper towels and said,

“No! Two! Please!”

He was very loud and adamant about it. Alright,  so he was nervous about running out of paper towels.  I did think that it was a  bit odd that he was so worried about paper towels, but not a big deal. We still had the one customer in front of us so I said “Okay, if you want two, go over and get ONE more, but you have to hurry”

DC went running over to the other side of the store.

This child, has THE best sense of direction of anyone I have ever met. He remembers how to get anywhere we’ve ever been. He always seems to know right where he is. He does NOT get this from me. I still get lost in the mall. For someone who has this type of directional sense, he just could not take direction to the paper towel aisle, even though there were only 3 aisles in the store and he had seen me go to the aisle only a few seconds before.

He was walking around, looking up in the air, trying to follow the instructions I was giving him from the line. At this point, the woman ahead of me had finished her transaction and not wanting to hold up the woman behind me, I called to DC and said “Never mind, we will get more tomorrow”.

The man behind the counter said, “It’s okay, I will just ring up an extra one if he really wants two” . He was ringing and helping to give directions to DC –  it was beginning to get ridiculous –  there were only 3 aisles, but I knew if he did not find the aisle soon he would become very upset and frustrated (he was already beginning to)  and this agitated  mood would carry itself over to the dance we were headed to. Just as I was going to leave the line to help him, the clerk said “I think he’s found them”.

Around the corner comes DC with not one, but an armload of at least 7 rolls of paper towels! I tried not to laugh and told him that we did not need that many, and to please put them back.

DC stood in the middle of the store, with his arms full of paper towels and yelled “PLEEEEEASE” “PLEEEEEASE” as if his life depended on it. He does not beg this much or this loudly when he wants me to buy him a book or movie. I told him to put them back but he just stood there, arms full yelling “PLEEEEEEASE!”

The clerk was now laughing, not at DC, but at the sight of him standing there with so many paper towel rolls.  The poor woman waiting patiently behind me said “He sure loves his paper towels, doesn’t he?”

“Yes, apparently, he does today.”

I had no idea what was in his head or why he HAD to have them right then, but for some reason they were very important to him in that moment. I promised him that we would get more the following day at the grocery store (and we did), so he finally put them all back except for the additional roll I had agreed to earlier.

He was still out of sorts when we arrived at his friend’s house, but fortunately, over it by the time we got to the dance.

I suppose, still, after all this time,  I do not always know just what is important to him or why it is important at any given time.  Just when I thought I’d be adding paper towels to his “Odd Gift List” ; the following day, in the grocery store,  he didn’t seem concerned whether we bought more or not, but for some reason, the day before, it was very important.

 (After thinking about it – a lot – because that is what I do;  and writing about it, because at times it helps me to figure things out* and after just writing that very last paragraph, the light went off in my head – I am wondering if it wasn’t the paper towels at all, just the fact that I was only buying one at the time and at the grocery store, we always buy a package? “Buying more tomorrow”, doesn’t make a lot of  sense in his world – at that moment in time, we were just buying one and this had never happened before)

**I was told long ago by one of DC’s first teachers, Mrs. T, that, with Autism, not all things can be explained and I might just drive myself crazy trying to figure everything out. This is true, very true, but it does not stop me from trying…..

 

Because, Because, Because, Because….BEEEE CAUSE

Autumn In OZ

Autumn In OZ

 

Right up there on DC’s ‘fandom’ meter with all things Disney is the Wizard of Oz. I can not really put my finger on how, when or where this fixation developed as it is not a Disney production, but it certainly did. DC owns every version of every book, movie and soundtrack of The Wizard of Oz.

There is nothing that would make him happier than a visit to OZ.

As I mentioned in Part One of this post (Hello Dolly)

I discovered a festival in Kansas called, you guessed it – The OZ Fest. The OZ fest is held in late September, not October, but still close enough to count as our Halloween trip. The OZ fest was the plan for this year’s Halloween get-away. That WAS the plan….. until we calculated the cost of the flights, rental car and hotel for the weekend and realized that it was almost equivalent to booking a cruise for a week.

Plan discarded…………… (for now)

But now I had OZ on the brain and I was not going to give up the notion of getting DC to OZ. I remembered seeing photos that my sister-in-law posted from an OZ event that they had attended a few years back. It was at  Beech Mountain, North Carolina. I facebooked her to get more details. She told me that this event was very popular, but only open for ONE  weekend each year; this year on October 3, 4 and 5. Tickets had to be purchased in advance. and I was told that it sold out very quickly.

 

Dollywood the day before worked out so, so much better than expected (with the exception of the ‘Mommy-Meltdown’) – so we were excited to get to “the Mountain of Oz’ – as DC calls it. I was still a bit apprehensive about the bus ride to the top, but I realized quickly that most of the mountain drive was by car.

I didn’t realize that DC had packed his watch and was wearing it in the car. I only did realize when we started getting minute by minute updates from the back seat:

“Mom, it is Eight-‘Firty’- Seven, we have to find Uncle ‘Liar’ –

“Mom, it is Eight-‘Firty’ – eight, we have to find Uncle ‘Liar’ –

and so on……….

DC has a difficult time pronouncing most of my brothers’ names. Uncle Larry, is ‘Uncle Lally’ (he can pronounce “Harry” and “Mary” but for some reason “Larry” is impossible for him). Uncle Lyle is ‘Uncle Liar’.  He always could pronounce Ted and Skip – or so I thought. He does pronounce “Ted” correctly, but at one point  I realized that all this time, he was really calling Skip,  Uncle ‘Scamp’ – it sounded so much like ‘Skip’ all of the times that he’s said it that I didn’t realize he was actually calling him ‘Scamp’ until he wrote it down one day.

We arrived at the sky-resort where we were to catch the bus. We met “Uncle ‘Liar’, my sister-in-law and my niece in the parking lot. IT WAS COLD!!!!! My brother was disappointed that we were not in costume (they were not, but he knows me well). My title of “Queen of the Costume” was now tarnished, forever!

(Did I mention that it was COLD!!!???)

– I have to give props to the “Autumn at Oz” people for sending out more than one e-mail to let ticket holders know just how cold it was excepted to be. This would not have occurred to me and thanks to them, we were prepared – But still….. IT WAS COLD!!!

We had a little time after we checking in to have some hot chocolate and coffee. There was a couple of  buildings open for us to go and get warm while we waited.

Needless to say the Italian Ice vendor outside did not do very well on this day. Hopefully he did better on Sunday.

After our hot chocolate/coffee/heat break, we went out to board the bus. We were first in line for our bus, which means we would be seated all the way in the back. My sister in law gets a bit of motion sickness, made worse by riding in the back. She and my brother were allowed to take the front seat, while DC and I took one seat in the back and my niece and Doug took the other, a decision my niece would soon regret.

The Wizard of Oz soundtrack was playing on the bus on our way up the mountain; Doug, being Doug, decided, out of nowhere,  to just belt out “If I were the king of the Foreeeeest”

I will never be able to describe the look on my niece’s face, ever. I told Doug that he was embarrassing her, but that is what he lives for. The look on her face was priceless and although I felt sorry for her, I just could not stop laughing. She was just mortified. Not being able to stop laughing actually distracted me from the ride that I had been so apprehensive about. I will never forget that face and even now as I’m writing, I am laughing.

Exiting the bus;  we soon ran into Dorothy and Toto sitting near a fountain. I have to hand it to these characters, it was so cold but they never let on, one would never know by looking at them that they were freezing.

 (It was never my intention to turn this post into a visual tour, but I can not help myself. It was impressive.)

We followed the path and came upon Professor Marvel. He warned us all about the storm that was predicted to come through at any time!

We continued on the path to Kansas and where we would hopefully find shelter from the oncoming twister.

We found the Gale farm. While waiting to get into the house, Dorothy saw DC waving to her through the crowd. She walked into the crowd to greet DC and launched into the whole spiel – She was very nervous. Miss Gulch tried to take Toto for chasing her cat. She needed to find Auntie Em to protect her and Toto from Miss Gulch.

“If you see Auntie Em, please tell her I need help”

DC ate it up. He felt as if he was a part of the story.

Heading into Dorothy’s house, the Ruby Slippers were on display and a band played on the front porch.

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Once inside we found Auntie Em and DC relayed the message from Dorothy. Auntie Em was thankful and told DC that if he saw her again,  please tell Dorothy to come home.

But we had to hurry to the cellar……. the storm was fast approaching!

Oh NO! It's a Twister!

Oh NO! It’s a Twister!

 “The house began to pitch. The kitchen took a slitch*. … “

Half way down the stairs on the way to the storm cellar and partially through the ‘twister’ DC said, “I am getting very nervous about this” but he continued through the dark through the storm. When the storm was over, we found the house a mess and the floors topsy turvy – it was hard to stand up straight.

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We walked outside to hear the Mayor declaring the Wicked Old Witch, dead!

The Witch Is DEAD!

The Witch Is DEAD!

 “It landed on the Wicked Witch in the middle of a ditch, Which was not a healthy situation for the Wicked Witch”*

Ding Dong!

Ding Dong!

DC was happy to be out of the house and excited as he was now realizing that the journey we were on  was moving in order, right along with the story. The Yellow Brick road would be coming into view shortly.
We rounded the corner and there we met Glinda. Glinda, in DC’s eyes is equivalent to a Princess. She has “princess status” in his world. He is always happy when Glinda appears, and now he would be meeting her in person!

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Onward through Munchkin Land .

Leaving Munchkin Land, the munchkins told us that we had to “Follow The Yellow Brick Road*” – and so we did.


– Along the way we came across every character that resides in the Land of Oz – good and evil.
I can’t say enough about the actors that played these characters. I am told that they are all volunteers. These people were impressive. They were definitely “Disney-Caliber”. Not only were they out there all day, in costume, in the cold, but they never broke character. A few even burst into song.

Let me tell you, if DC decides to throw a line at you, you better be able to respond, in character and correctly. Believe me, his interaction with the Oz characters was no different that his conversations with ‘his’ Disney Princesses. They all had the proper response or song to whatever DC decided to discuss with them and we all know that DC can come up with the rather obscure reference. One HAS to know the movie inside and out to pass the DC realism test. Each and every one of them passed with flying colors.

Once we walked a little bit of the way down the Yellow Brick Road, the wind seemed to die down and we were in direct sunlight; the hats and gloves came off – jackets were still needed but it was really, really nice there.

The Scarecrow sang when DC asked him about his brain and then he pointed us in the direction of the Emerald City – although he could not seem to make up his mind.

DC could not resist knocking on the Tin Man’s chest
just checking for a heart

                                                                                             “Lions and Tigers and Bears! Oh my!”*
The Cowardly Lion……
– and yes, Doug showed great restraint in not belting out the ‘King of the Forest’ tune again.

We were now getting closer and closer to the Wicked Witch!

“I’d turn back if I were you!”*

But we didn’t turn back……. Who’s afraid of a Wicked Old Witch anyway? But, curses, we neglected to bring our buckets of water! We’d have to take our chances.

After DC and my niece both declined the Witch’s offer to join her flying monkey army, we were on our way, fully intact. PHEW!

 

We approached the poppy field and said one last goodbye to everyone we had met along the way.

DC, of course had to call an impromptu powwow to make sure that each of the characters were absolutely aware of who they were supposed to be….
– Just in case they didn’t know.

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“We’re off to see the Wizard”*

But first……. we had to ask for admittance into the Emerald City.

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I so wish I had thought to take a video of this exchange. DC went through the entire scene – he rang the bell, the door guard yelled at him and slammed the door for ringing said bell. He then followed the new directions, now that the sign was turned to the proper side, and knocked… because of course we know that the bell is “out of order” – he laughed and laughed. I think this may just have been his favorite part of the entire day in Oz.
His cousin really got a kick out of how much he was getting a kick out of all of this.

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Directions followed properly – we were granted permission to enter the Emerald City and given an audience with…..
The Man behind the curtain……. The Wizard.

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Finally DC had the opportunity to recite “There’s no place like home”*.
Wish granted, and we made our way back to the bus, but first we came upon the characters once again, this time from the original book.

I read somewhere that the Emerald City was lost to a fire. It is a shame; based on the quality of the Yellow Brick Road – I have to imagine that the Emerald City must have been magnificent. Even with the loss of the Emerald City, the story was told from beginning to end.

 

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We were right in time for the bus. I had photos to post so this kept me occupied on the bus ride back down the mountain.

My niece opted not to sit with Doug on the way back down.

I really do not know just what I was expecting at “Autumn at OZ” but I have to say, it was above and beyond anything I could have imagined. It was beautiful, very well maintained and VERY well staffed. It was such a fun day. Yes, it was cold, but we were warned and we were prepared. The trip was well worth it. We had a wonderful time (“terrific time” – ‘terrific’ being DC’s new word).
The whole adventure from the bus stop to the end was very well organized. There was not a long wait for anything.

I would recommend this event to anyone. It is a shame it is only open once a year, but if you are an OZ fan (even if you are not), it is well worth it. DC will never forget his trip to OZ.

I have to talk a little bit about my niece as well. My brother and his family have lived in Tennessee since DC was born. My niece and DC have only actually met each other maybe three times since she was born. So she has not spent much time with DC at all over the years. I have to say I was so impressed with her. She was not afraid of him – you might think that is an odd thing to say as he is her cousin, but believe me – it’s happened, more than I care to think about. She put up with him hugging the stuffing out of her all day. She made attempts at conversation with him, even if the response she got didn’t have anything to do with what she originally said to him. The day went wonderfully and HE is completely enamored with her.

I am so glad we had the opportunity to visit OZ with them – I think we all had a fabulous time.

Even this guy…………

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“This Guy”

In the event that anyone may be concerned ……..

after dinner with my brother and his family, we were able to find a bookstore…

Hello Dolly!

Every October, we try to take a weekend trip – our Halloween trip – somewhere Halloween themed of course. Usually we go to Salem, MA. Two years ago, just to take a break from Salem (there is never really a break from Salem as we tend to end up there quite often during the year), we decided to try Sleepy Hollow, NY. It was fun. It was no Salem, but DC had his best friend BB, along so he had an exceptional time. Last year, we opted for NY ComicCon and a weekend in NY – DC’s favorite place. ComicCon – Costumes, Characters – close enough to qualify as our Halloween weekend away. Last year, I also discovered a festival in Kansas called, you guessed it – The OZ Fest. The OZ fest is held in late September, not October, but still close enough to count. The OZ fest was the plan for this year’s Halloween get-away. That WAS the plan….. until we calculated the cost of the flights, rental car and hotel for the weekend and realized that it was almost equivalent to booking a cruise for a week.

Plan discarded…………… (for now)

But now I had OZ on the brain and I was not going to give up the notion of getting DC to OZ. I remembered seeing photos that my sister-in-law posted from an OZ event that they had attended a few years back. It was at  Beech Mountain, North Carolina. I facebooked her to get more details. She told me that this event was very popular, but only open for ONE  weekend each year; this year on October  4 and 5. Tickets had to be purchased in advance, and I was told that it sold out very quickly.

We went about booking flights, but then the tickets did not go on sale on the day they were scheduled to, and not on the following date that was posted. We had flights but had no idea if we would be able to get tickets. Finally we just happened to go to the site to check for a new sale date, and there they were, on sale, unannounced. Tickets – purchased; we were good to go.

Doug, who loves to research everything to death, came to me after all of the plans were made……

“Um…. is there some sort of pill you could get for this trip?”

– That is never a good sign

“Why, what happened?”

“Well, you realize that this place is on top of a mountain, and we have to take a bus to the top.”

-Now Doug has had to deal with me in a car driving up to Mt. Haleakala –

  • I was convinced I could not breathe (I could)
  • Potato chip bags exploded in the back seat from the pressure, scaring the life out of me
  • The gas alarm began to chime because we were headed straight up and I was convinced we would run out of gas, further scaring the life out of me (we didn’t)
  •  I yelled at him all the way to the top (and all the way down)

……and many other winding, hilly, mountainous drives that went just about the same way. Then there is the whole “car tipping over on the curves” fear.

Let’s just say, I am not the best when I can see the edge of the road and a very long drop. Let’s just say that.

“I really didn’t need to know that right now. Thank you”

At this point I was thinking that this just may have been a big mistake on my part but I wanted to get DC to OZ so we went ahead with the plans. We were also planning to meet up with my brother and his family from Tennessee,  while there, so that would be fun too. They were to join us in OZ and DC was very excited about that.

The plan…. to fly down on Friday morning, head straight to Dollywood, back to the hotel and Saturday morning head straight for the mountain. The entire week before, the forecast was calling for rain, lots of rain, on Friday – Saturday was still looking good, with the exception of  the “dress for winter” e-mail from the “mountain”, but sunny and no rain. We kept hoping that Friday’s forecast would change, but it never did.

We arrived in Charlotte at 8:00 am Friday morning to sunshine, but it was short-lived. It would be a 4 hour drive straight to Dollywood or a 2 hour drive to our hotel. The original plan was to head straight to Dollywood, but now it was pouring so we really did not know what we were going to do. We stopped for ‘second breakfast’ because DC had his breakfast at 3:00am at home. He was actually looking for lunch at 8am. I tried to explain to him that we woke up much earlier than usual and it was not lunchtime, he would just be getting to work if we were at home. I knew he really did not understand this. He had breakfast at home so surely it must be lunchtime, because that is what comes next… period.

We checked on-line for other things to do in the area, but most were outdoor activities, so we decided we would just head in the direction of our hotel and Dollywood. If it was still pouring when we reached the hotel – maybe they would let us check in early. If the weather changed, we could just continue on to Dollywood. Checking the forecast, the weather was actually looking worse; now predicting thunderstorms.

The hotel did let us check in early and I was really looking forward to a quick nap (more about that later), but we decided to call just to see if Dollywood was open.  They were, so we decided to risk it and drive 2 more hours to get there. If the weather didn’t change we could always just try to find a bookstore and DC would be happy to just go back to the room with more books – and I would be able to take a nap.

storm dollywood

We drove the 2 hours to Dollywood –  pouring almost all of the way. The forecast still reading heavy rain and thunderstorms, but…. the closer we got the lighter the rain, until it had completely stopped. When we pulled into Dollywood,  the clouds parted and the sun came out – full force – seriously, it was hot! We were not dressed for HOT, but whatever – it was amazing. While the forecast was still reading heavy rain and thunderstorms, we were in the blazing hot sun!

After only a few minutes, the clouds rolled in, but not like earlier, just enough to cool it down. It was perfect. I think the weather actually worked in our favor.

The park was not crowded at all. There were no lines for any of the rides. DC was able to ride on most of the roller coasters, before Doug began looking a little green. There were only 3 hours left of park time by the time we arrived, but it was plenty of time – everything moved very quickly.

oz 087

The Front Row

The Front Row

oz 085

We even had time for the carousel, train and the world famous’cinnamon bread’.

oz 092

Meltdowns?

Just one…..

…….and it was me.

I do not like 6:00 am flights.

A 6:00 am flight means we have to leave our house at 4:00 am – which means we have to wake up at 2:30 am.

Having to wake up at 2:30 means I really will not be able to sleep at all because I am worried that I won’t hear the alarm or just won’t wake up in time.

I was lucky if I got 45 minutes of sleep.

I can not sleep on a plane – ever. I try, but I just can’t, never could.

This means that when we arrived in North Carolina at 8:00 am Friday,  I had already been awake since 5:30 am Thursday morning – about 27 hours for those of you that don’t want to do the math. By the time we left Dollywood and started back to have dinner and find a bookstore, it was somewhere around 37/38 hours without sleep. I just could not take it any more. It was a meltdown of epic proportions.

So………….

We had dinner, skipped the bookstore and got back to the hotel all before 9pm. I got some very much needed sleep. I think I was “out” in all of 5 minutes – that never happens, no matter how tired I am – and I slept straight through the night, which also never happens.

The next morning was sunny, but cold and I felt much better after getting some sleep….

(No worries, DC made it to a bookstore on Saturday)

Next we were heading off to see the Wizard…………

(to be continued in next weeks post;  “Because, Because, Because, Because….BEEEE CAUSE” )

Disney, Disney and more Disney………………..

Many of you know that DC has a complete, over the top, obsession with all things Disney. This obsession began when he was probably 6 months old. He loved to watch those Disney Sing-A-Long videos, over and over again.

DC did not take naps as a baby. He did not like the playpen. He liked the bouncing chair but was over it after a few days. The swing, lasted a little bit more than a few days, but he was quite over that after a week or two. He did not like to play with toys. He was not happy unless he was being carried around. These sing-a-long tapes were the only thing that captured his attention. So yes, I used them because for 30 minutes, I was free to do something else.

He graduated quickly to full length movies. The “Jungle Book” was the first full length movie he owned. I was a bit surprised that he was able to pay complete attention for the entire length of a 90 minute movie at 9 months old.

His obsession with Disney grew from there, especially for Cinderella. The boy loved his princesses! It got to the point that this “one movie” or “one Sing-a-long” a day was interfering with everything else we needed to go. He was so preoccupied with watching a movie that he did not want to do anything else. I didn’t want to take his movies away from him – he loved them, but I had to try to limit his movie watching to weekends only. This did not go over well at all.

I remember one night, he was probably  4 years old,  DC wanted to watch a Disney movie, I told him he could not. Now, at the time he was non-verbal, afraid of the dark and would never think to go anywhere without me. Communication was rough, he was still having meltdowns and really had a hard time understanding many things – but on this night, when I told him he could not watch a movie, he took his video put it under his arm, marched to the front door and signed “Dad”. He was determined to go to Dad’s house because apparently he would allow him to watch his movie.

DC had officially learned how to play the “Guilt Card”. Obviously he was not going to go outside in the dark, but he did make me feel awful and as always, like the bad guy. No, he did not get to watch his movie, but I realized then that he understood much more than I had been giving him credit for.

Cinderella led to his fixation with flowing dresses and shiny shoes. Out in public, he would grab at strangers  wearing  ‘flowy’ dresses or skirts. He would also get on all fours to stare at their shiny shoes. This was not always welcomed by the people wearing the “Cinderella-like” garb. I had to always be aware of everyone around us at all times and what they may be wearing to avoid an uncomfortable situation.

Around this time, I had a long ‘flowy’ gauze type skirt. It was hand washable of course. I always had to be careful about drying it. We lived on the second floor and I was  afraid that if I were to hang it to dry on the clothes line,  DC would try to go out there to play with it – yes, among the other worries and issues these were the other things I had to think about. So I used to hang it on a hanger from the shower head and close the shower curtain, so he would not see it. One night,  in the middle of the night, I woke to giggles, and some thrashing about. I went into the bathroom to find DC in the bathtub playing with the hanging shirt. I got rid of the skirt not long after.

There was ONE Disney book in his classroom when he was in his “in-between birth to 3 and Kindergarten” SPED classroom. It was the Little Mermaid. His teacher hid this book on a daily basis, because he could not concentrate on anything else knowing the book was in the classroom. Everyday he found it. She went to great lengths in hiding it – finally hiding it in a storage closet where DC had never once stepped inside – but as always he found it. It was almost as if he could sense it.

It took awhile but we finally had the movies in check and he did get past searching for that book. I didn’t want to take Disney away from him altogether, I wanted him to learn to live with Disney but not be overtaken by it. When he seemed to be in that place, it was decided it would be safe to take him to Disney World without him regressing back into his Disney-Obsessed behavior.

I know, I know, you are thinking “Why would you do that”? and again I will say that I didn’t want to take away something he loved so much, I just wanted him to be able to function around it.

His first trip to Disney World was when he was 7 years old and it was there that his first words (other than “Momma) were spoken:

Bus (because he knew the bus would be taking us to one of the parks each day)

Room (because we all know how much DC loves a hotel room, even back then)

‘Citronelle’ (DC-Speak for Cinderella)

‘Too-pay’ (DC-Speak for Peter Pan)

‘Dal-may-zaas’ (DC-Speak for Dalmatians)

For a boy who’s only word up until this point was “Momma” – I thought ‘Dal-may-zaas’ was quite amazing.

After a very long hunt, he was able to find and meet ‘Citronelle’ for the very first time. He would go on to meet ‘Citronelle’, many other times over the years and it is still very exciting for him, but nothing will ever compare to their first meeting – ever.

citronelle

Moving on to grammar school, we thought the Disney book distraction was behind him. Just to play it safe, his new teachers removed Disney of any kind from the classroom before the school year began. We thought we had this covered, but little did I know, there was an entire Library in this school, just full of Disney books. Realizing very quickly that this was becoming a problem, they were removed as well (for the first few months he was there, anyway, then they slowly came back so he was not overwhelmed with a large number of books all at once).

Now that he was becoming more and more verbal, he began reciting random movie lines. The lines he recited did not always have anything to do with what was going on at the time (they still don’t), they were just what might have been spinning around in his head at the time. Some were recognizable right away, others were obscure lines that really many people would not know.

While dropping him off at Daycare one morning before school, he bowed to me and said “Thank you Lucifer”. Now I know that Lucifer is Cinderella’s cat, but really, how many other people could make that connection? Fortunately the Daycare staff, got it but I still felt it necessary to e-mail his teacher just in case, to let him know that, no, we were not worshiping Satan at home.

(and yes, that e-mail made his day)

While walking through the grocery store “Please don’t send me away, I like it here!” (Disney’s “Summer Magic” – there are very few people who even know of that movie, never mind that particular line).

Now that he is older, he has more of a handle on his obsession. He is not so distracted by Disney that he can’t or won’t do anything else. Still, he is limited to movies only on weekends. He  will spout the random movie line. He still loves his princesses. He will almost always assign anyone he meets a princess or Disney character name.

And if you are wearing a ‘flowy’ dress, he will to ask you to spin………. (most people oblige)

But does he know……

Lost in thought NY

I’ve been asked quite a few times –  twice just this past week, if I have ever told DC that he has autism and if so how did I approach the subject. Most of the questions came from mothers with children that are just beginning to or do already realize that they are different from their classmates and friends.

To be perfectly honest, I really do not think that DC is aware that he is different – I do not know if this is a good thing – at the moment I am going with – yes, but I really do not think he sees any differences between himself and other ‘men’ his age, or anyone for that matter. I really do not believe age is a factor in anything he thinks about or notices. I don’t think age means anything to him at all.

That being said, it is never perfectly clear just what he might understand and what he does not. I really do not know what goes on in his head at times. I Know that just because he doesn’t seem to notice or understand, does not always mean that he doesn’t. Going on the small chance that he may actually know that he is different… yes, I have told him. I have told him many times, since he was very young.

We don’t have “sit down and talk about it” sessions because he becomes overwhelmed with too much information. He needs examples, he needs to see something. We also can not  talk about it too often – when we talk about anything too often, it makes him anxious – he thinks something is wrong.  I never want to give him the impression that anything is ‘wrong’ with him. He doesn’t need that.

I have to take the opportunities when they come. Because he is very visual, I try to approach the subject when we are watching TV or reading something that happens to have a character with Autism. The first time I brought it up to him, we were watching TV.

I remember starting out by pointing out the character.

“DC, do you see that boy?”

“yes”

“He has autism. Do you know that you have autism too”

“yes” (he answers “yes” to just about everything)

“Do you see the way he flaps his arms? Who else does that?”

“You” (pronoun confusion – ‘you’ instead of ‘me’)

“Autism means you and the boy may think about things a little bit differently than Mom and some of your friends. Can you say ‘Autism’?”

“Autism” (usually I can type his pronunciations, but I can not type his pronunciation of the word Autism)

We’ve gone through this scenario many times – arms flapping – loud noises – whatever happens to be going on with a character or story.

We talk about it when we participate in an Autism Walk or fundraiser. We talk about which of his friends have autism. I can not get into too much into detail with him, I just point things out as they come up – a character, a fundraiser, his friends….

I point it out to him when he is watching his sign language sing-a-long DVD’s. I explain to him that his autism made it harder for him to speak at first (he was non-verbal until he was 7), this is why he went to speech therapy with Liza for so many years.

He was always very happy to see Liza every week. He worked hard.

(He LOVES Liza)

Before he learned to speak, he used sign-language.

He was always happy to see Sandi for sign. He worked hard with her as well.

(He LOVES Sandi)

Speech therapy and sign language were “good” things in his mind – fun time. This can be directly attributed to the insight and resourcefulness of both Liza and Sandi and the way they choose to make the process fun by working from his interests and incorporating them into his sessions. I am 100% sure that Liza can recite the “Wizard of Oz”, in every variation to this day. They made him happy.

We’ve discussed* it many, many times over the years and in many different ways, but for a boy who remembers everything, he can not give me the word “Autism” at any other time.  Unless I ask him to repeat it for me, he does not seem to even remember ever hearing the word. This just strengthens my belief that he really does not understand any of it. He does not know that he’s different and for now, that is fine with me. My goal here is not to make him feel that he is different.

So why do I continue to talk about it?

On the chance that he does recognize this now or later on, I don’t want him to wonder and not be able to communicate the question to me. This isn’t the sort of question he would ever be able to communicate.

And though I am relatively sure he does not understand, it is possible one day he may understand, or partially understand, but over and above all of that, if he were to hear “Autism” or “Autistic” elsewhere I want to be sure he doesn’t think it something that is “bad” or “wrong with him”.

I don’t and will not harp on it – I don’t feel the need to have those long heart – to – heart flowery discussions about it. He is happy, he knows he is loved. I will continue to mention it from time to time when the occasion arises, just so the word is recognizable to him and just in case he should ever wonder. If there comes a time when it seems that he might need to know more then I will try to explain it a little more in-depth or try to come up with a different way to explain it to him. For now, he seems to be just fine knowing what he knows and that is really all I want.

I wish I had a better answer for the people who asked…

Have I told him?  – Yes.

But does he ‘know’?

I may never know for sure….

Second Star to the Right……… and hang a left.

Too Pay

DC and I were driving to the store this past weekend. He was listening to the Peter Pan CD that he had checked out of the library a few days earlier. Like many of the books he borrows each week, he already owns this CD, but still he must check it out from the library. The “library” CD’s are to be listened to in the car only – this is one of those “official DC rules” that he makes up in his head. I’m sure there are very good reasons for the rules he comes up with, but I really don’t know what these reasons are or where these rules come from, but he follows them to the letter – always.

DC has every version of Peter Pan imaginable. He has the old black and white Mary Martin version, the Cathy Rigby version, the Disney version, the non-animated version, Peter Pan that came out a few years ago (maybe more – I have no sense of time), Finding Neverland, the sequels to the Disney version and Hook. He has copies of the soundtracks to all of them as well. The only Peter Pan themed movie he would never watch was Hook. I do not know why but he refused to watch it. It happens to be my favorite version of Peter Pan so I really tried for years to get him to watch it.  I’ve had watch Peter Pan for more than 20 years,  and at times it would have been nice to watch the version I enjoy.

Obviously this was not one of “DC’s rules”.

Somewhere along the line DC discovered that Robin Williams – the voice of the Genie, was in Hook – that was all he needed to figure out and now it is also one of his favorites. Everything is related, and once he is able to relate a character to another he likes, he’s “hooked”.

(One day I will write a post about how everything is related. It probably won’t make a lot of sense to you, but it will sure be fun for me to write)

After listening to “Tender Shepard” six times, I told DC he had to move on to a different song. He did, but we soon moved back to “Tender Shepard”. This song is from the Mary Martin/Cathy Rigby version of Peter Pan. This version seems to be his all-time favorite. Zoning out while listening to this song….AGAIN, I started to think about Hurricane Irene back in 2011, because

……. it is all related.

It was Friday, August 26, 2011. I was on my way to my first appointment of the day to look at a few MORE day programs. This is the way every Friday that summer had been spent. I generally have Fridays off during the summer so it was a perfect opportunity to go and check out day/work programs for DC, as he would be finished with school and his transition program the following June (2012). On the way there, I received a phone call from Doug.

“Listen, we are supposed to be getting a big storm here over the weekend – do you want to just take off for Vegas for the weekend?”

“WHAT???”

Many of you know that DC is terrified of storms. I don’t think it is the actual storm, it is the fear of losing power, that scares him. This storm was  supposed to be a big one – a hurricane.

  • Okay….. it’s Friday morning.
  • I’m on my way to a meeting.
  • I can’t make this kind of decision that quickly- I just can’t think about this now.
  • But, I can’t wait too long because all of the flights will be booked.(This is me, not thinking about this now)
  • But, if we lose power I’m going to be sorry we didn’t go.
  • I have to concentrate on looking at programs, I can’t think about this now.
  • If we fly there, what if they close the airports later and we can’t get back on time for work and school? (Still not thinking about this now)
  • Maybe we can go somewhere closer?
  • What if we decide on somewhere closer and the storm shifts direction?

I called him back and suggested that he try to find somewhere closer and I would consider it.

After my first meeting, and failing miserably at  “I can’t think about this right now” – I called Doug back. He was checking the weather and the path of the storm and decided on Pennsylvania – it may be rainy there but it should not be as bad as they were reporting it could get here.

After my third meeting, I went home, packed quickly (I must say I did a much better job packing with no notice than when I plan for a scheduled vacation) and when DC came home Doug came over, picked us up and we were off. I didn’t have any great expectations about this weekend. I really thought the weather would be bad and we would be sitting in the hotel room most of the time, and I did explain this to DC. As long as he was going to a hotel (his favorite) and there would be power, television and food, he was all for it!

We did consider, although it was never mentioned to DC -Hershey Park – weather permitting. A scheduled trip to Hershey Park a few months earlier had been a bit of a disaster – something I will not be writing about – and a do-over would be fantastic. But as I said, I didn’t have any expectations at all.

Arriving in PA, DC was happy to be in a hotel room. He took his favorite spot at the desk and happily edited his books on Friday night.

Saturday was a little bit overcast but a very nice day. We decided to take our chances with the Hershey Park do-over.

We could not have planned for a better day or a better time! DC got to go on all of the rides he missed during the “de-aster” (DC-speak) trip.

Hershey Park

There was a total of 5 minutes of rain while we were at the park, even that didn’t really bother him as it normally would.  It cleared up quickly and we continued on exploring the rest of the park.

rain

Onward to the “Chocolate Factory” (Chocolate World). DC would happily skip the park and just go to Chocolate World. “Chocolate Factory” = Willy Wonka. There is not a single “Wonka” anything there, but it’s a Chocolate Factory and all Chocolate Factories belong to Willy Wonka, period…. DC’s rule.

We almost didn’t make it there on our first trip, and when we did, I held my breath the entire time. It was wonderful to be able to take him back there relaxed and breathing normally.

Chocolate Factory

On the way back to the hotel, I spotted a sign outside of the Hershey Theater for Peter Pan staring Cathy Rigby. We had taken DC to see Cathy Rigby in Peter Pan when he was much younger and he just loved it. I noticed that there was a performance scheduled for Sunday afternoon and Sunday evening. The forecast was calling for rain on Sunday so we thought we’d check to see if there were tickets still available for Sunday afternoon. We decided to check on line when we got back to the hotel. I didn’t want to mention it to DC until we knew, so walking into the box office was not an option.

It turns out that there were tickets available!

On Sunday morning on the way to breakfast, making his trip the “best trip ever” – he found a bookstore.

B&N PA

The play was early enough so that we could still leave at a reasonable time to get home and sleep before work for me and the first day of school for DC on Monday.

Peter Pan

DC loved the show, loved it! They announced during the curtain call that Cathy Rigby would be available for photos and autographs in the lobby immediately after the show was over! Could this get any better for him?!

If I had planned this trip for months, it could not have worked out better than this last minute, impromptu, Hurricane trip worked out!

DC met Cathy Rigby, had his picture taken with her, got her autograph and sat on her lap – I did try to stop him from sitting on her lap because DC is a BIG boy, but I was too late and she didn’t seem to mind. Her signed poster still hangs in his room.

How much better could all of this have worked out? I am still amazed about how smoothly this weekend went.

After the play we headed home, from our “Escape from Irene” weekend.

We arrived to find that the first day of school had already been canceled due to the power outages. It turned out that our side of town never lost power at all.

Two months later, we wouldn’t be so lucky, but for now we had just returned  home from – in DC’s words – “The Best Trip Ever”.

The Great Band-Aid Obsession

Bandages

“All children with Autism love stickers”

—- DC hates stickers! Hates them, but still people insist on giving him stickers, mailing him stickers and putting stickers on him! In the past, anytime we were at an event where a sticker was required, I always had to place it on the back of his shirt – he just could not stand it on the front (he wasn’t thrilled about having it on his back either, but he could tolerate it a little bit more there). Even now that he can tolerate a sticker on his shirt, I will hear about it the entire time it is there and he removes it the second we leave the event.

“All children with Autism love Legos”

—- DC hates Legos! Hates them, but still people insist on giving him Legos (not as much lately, but definitely when he was younger)

“All children with Autism love Minecraft”

—-DC hates Minecraft.

“All children with Autism love things that spin”

Okay, I’ll give you that one…………..

Other than his books and movies, the one thing DC really loves are Band-Aids. I am not completely sure that Band-Aids are on the list of what “Every child with Autism loves” – it is possible, I do not know, but I know that DC just loves them.

I believe the main reason for this obsession, as I mentioned in an earlier post, is that he’s never actually had the need for a Band-Aid – that I can recall.

 

 

I mean, I have really been lucky (still knocking wood), so much so that we’ve never had to use a Band-Aid. He loves Band-Aids and wants to wear them so much that he just wears them for no reason, or invents a reason the wear them. The one and only time he cut himself when he fell off his bike – yes, he somehow managed to tip over an adult three-wheeled bike – he was so excited to have a big raspberry on his chest, he wasn’t concerned about the fall, he just wanted a Band-Aid. He was so crushed that the raspberry was much too big for a Band-Aid, that I had to make up a reason to apply one to his leg, just to make him happy.

Band-Aids, especially “character-themed Band-Aids” are on his “odd gifts list” along with the rolls of scotch tape, mentioned in an earlier blog.”

This has been an off and on obsession with him since he was very young. Then, he seemed to forget about it for a few years,  not that he would ever pass up an opportunity to wear a Band-Aid if he happened upon some, but it wasn’t a daily thing.

But now for some reason, the obsession has returned!

It started slowly…….

Rounding out the Collection, we have Mickey Mouse (again, no injury)

Rounding out the Collection, we have Mickey Mouse (again, no injury)

…..just a Band-Aid here and there once in a while, but it has slowly escalated into this:

We were in a department store not too long ago and DC came across a table filled with cases, yes cases, filled with 12 boxes of multiple sizes of Band-Aids.

One would have thought he’d found the Holy Grail!

“Mom! Band-Aids! P-LLLLL-EEEEE-ASE!”

– Yes, we bought them………

The ‘I want a Band-Aid’ hints begin almost every night with…

“Mom. my leg is itchy”

“Oh, really? I don’t see anything”

“Mom, my arm is itchy and my leg is itchy”

He doesn’t always come right out and ask for a Band-Aid, at times he will, but usually he will just continue to tell me his arm, leg or foot is itchy, until I finally give in and say…

“Okay, go ahead”

Then off he goes to apply his 3, 4 or more Band-Aids.

The new swag

The new swag

A few people have wondered and even asked why I “let” him do this.

Why? Seriously, these are the kind of issues that some people think I should be worried about?

I choose my battles and to me, this is not a battle. This is so far removed from a battle, that it is not even worth talking about – with him, that is. Apparently it needs to be explained to others.

He is not hurting anyone. Most of them are applied to his arms or legs – with the exception of one that he put across his nose the other day due to a pimple. It doesn’t interfere with his “work”, his activities or his life in general. It makes him happy. There are so many other/bigger issues to worry about. My time was never spent trying to make him conform to what other people may think to be “normal”. Safety issues – yes, his ability to navigate social or public situations – yes, communication – yes, independence – yes, life skills – yes  but these little things that some people seem hell-bent to correct – no!

I could live without the Band-Aid wrappers all over the house…

DC calls me “Vickie” quite often. I think it is because he is always being told that he is an adult now, so therefore he should be allowed to call me by my first name. I doesn’t bother me in the least – I actually think it is kind of funny. This is one of those “connections” that he’s made in his head – he’s an adult, so he can use first names. I don’t like to discourage these connections that he makes. But some people seem to be horrified by it. Why? He knows I’m his mother. I know he loves me (he tells me all day long). He does still call me Mom more than half of the time and even if he did not, how is this interfering with his progress, his life, his job or anything for that matter? It does not.

I always find it a bit funny when other people point out these little “nothing” issues as ‘something I really need to work on’.

So, back to the Band-Aid situation….

Having just said that he only applies them to his arms, legs or hands……(and apparently he also has a stash in the kitchen, I knew nothing about)……….

please read my Facebook Status 8/6/14:

Last night I was on the phone with an automated system. I had to tell DC more than once to stay quiet because this system picks up any noise. After the fourth attempt, it was clear that the system was not going to take my information , so I gave up. I turned around to find DC with a Band-Aid over his mouth. I guess he didn’t trust himself to keep quiet on his own

And no, I did not get a picture, I was too busy laughing.

Even though I would ever advocate putting a Band-Aid over anyone’s mouth, and never would I encourage him to put a Band-Aid over his own mouth, I was still pretty impressed with his ability to make that connection in his head.

Progress and connections at times come out of the strangest of situations…………………

“To Boldly Go……”

To Boldy Go....

To Bodly Go….

I confess…

I admit it…

I am just a big old Sci-fi geek from way back. I watched the first episode of Star Trek back in 1966/1967 (?) and I was hooked – for life.

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.

Coincidently, DC just happened to be born on William Shatner’s birthday (not planned – I swear)

Before the days when Star Trek costumes were available to purchase - DC's second Halloween.

Before the days when Star Trek costumes were available to purchase – DC’s second Halloween.

Last October, we finally 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 ComicCon we decided  Shore Leave would be a breeze.

We left on Thursday afternoon as soon as DC came home from his work program. Our 5 hour drive to Baltimore somehow turned into an 8 hour haul. We opted not to stay at the hotel where the event was being held as we were planning on doing a few other things in Baltimore while we were there and I really thought it would be just too much for DC. We had reservations at the Holiday Inn – Timonium. We finally arrived a little bit after 11pm.

The man at the desk checked us in to room 717. We headed up to the 7th floor in the slowest elevator known to man – reverse warp speed. We opened the door to room 717 and found that the door was bolted from the inside and soon a man’s face was looking at us through the 6 inch space in the door. He wanted to know what we were doing and why we had a key to his room. We explained that we had just checked in and this was the room we were given. He explained that HE had just checked into this room moments before. DC does not understand this, he wants to “go to the room”.

Fortunately a hotel employee was in the hallway and called down to the desk. He got the desk clerk to assign us a different room on the same floor, let us in with his master-key and went down to switch out the keys for us. We were now checked into room 725. At about 11:45, the room phone rang. It was the desk clerk. He has forgotten our name (??!!) – we had reservations so he should have all of that information, but I gave him our name again. At midnight, the phone rang. It was the desk clerk once again, this time calling to tell us he would have someone slip free breakfast coupons under our door for our inconvenience. We thanked him and hoped this would be the end of the phone calls for the evening.

We spent Friday at the Inner Harbor. DC of course spotted the Barnes and Noble and Hard Rock “Caf” (DC-speak) so, you bet we had to  visit both places. It was a nice day and we had a very nice time.

We got back to the room at about 4pm to discover that no one had come to clean. I thought that was odd, but given the debacle of the night before, I really didn’t think too much about it at the time. We would be heading back out in an hour so there wasn’t much point to calling anyone to clean at that time of day.

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 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. We arrived back at the hotel at a little after 9. Jokingly, I said to Doug, “I hope they didn’t give our room to someone else”

 -I really have to stop joking like that, really!

We got to the door and the key would not work, none of our keys worked. There were 2 women just down the hall going into their room and I heard one  say  to the other, “Now look,  their keys won’t work” and they asked us if our keys worked. We told them that they didn’t. They proceeded to inform us that they had just checked in and they were assigned room number 725 (our room). They opened the door, went in and realized that this was clearly someone else’s room (especially as you know,  no one had come to clean it that day). They had just been down at the desk to have it corrected and in the process the people at the desk deactivated our keys.

DC just wanted to “go to the room” and again, we are left standing in the hallway. I was so worried about Shore Leave being too much for him, but as it turns out the hotel caused him (and me) more anxiety that anything else that weekend.

We went back down to the desk and informed them that once again, we were stuck in the hallway. Last night they had us walking into someone else’s room and tonight they sent strangers into our room. The women at the desk said that when the desk clerk switched our room the night before he didn’t mark it down – which explains why no one came to clean – they thought it was empty (but why did he call to ask our name?? – That will remain a mystery). One woman offered us free breakfast coupons for the rest of our stay (they must have to give out an awful lot of those) – I informed her that we had already been given coupons the night before for that error. They didn’t offer anything else. I could be wrong, but it did seem as though the women that walked into our room that night were upgraded to a suite – but, I could be wrong…………….

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….

and a big shout-out to the “trying to be helpful staff member” that asked Doug (aka “This Guy”) if he needed help finding something….

“I’m just looking for some place to hang myself”

(Thanks Guy, I’m sure, Doug was waiting all day for an opportunity to use that line, and there it was)

#LLAP

Baltimore, Over the Rainbow and Back – Part 3

Part 3
Part 3

Now that is was permissible to speak the name of “Island that must not be named”, the Bahamas, I was able to tell DC that Coco Cay, our next stop was also in the Bahamas.

Before I get to that – the evening after we came back from Atlantis, we decided to give the dining room a try for dinner. I am usually not a big fan of eating in the dining room with DC. The tables are crowded with strangers. I get anxious because DC, although pretty well-behaved in restaurants, can get a little bit loud and chewing with his mouth closed does not come naturally to him, he has to be reminded continuously. When he does remember on his own, he feels the need to point it out to me throughout the entire dinner. He likes to bring a book with him whenever we go out to eat, but at these crowded tables, it is not always possible, there just isn’t enough room.

I was never of the mind that other people should be made to just accept DC’s behavior. Yes, if I am trying to manage the situation I can live without the stares and comments – but letting him do whatever he wants in the name of awareness, is not something I ever subscribed to. I do not believe that every behavior can or should be blamed on his autism – it is never used as an excuse. Letting him run around to other tables, throwing items or any other behavior that may have crept up when he was younger, just because he has autism, was not going to happen. I don’t expect other people in a restaurant, who are out to have a nice time for themselves, to have to make allowances for his behavior. In the past and for the most part, when he was younger, I’ve had to take him outside to calm down if it didn’t look like the situation could be managed inside or we’ve left places altogether. I agree that we need to raise awareness and acceptance, I do not agree that we have no regard for other people. To me, and this is my opinion only, that is not raising awareness about autism, but causing resentment. He has as much right to go anywhere and participate in anything as everyone else does and as I said, there were and still are times when he does get too loud or gets too anxious and yes, I do believe that some allowances should be made in the name of awareness, just as allowances should be made for young children that don’t necessarily have control of themselves out in public – we know all children will never be 100% well behaved in public, and we know that our children will not either – but letting them do just anything they want and calling it “awareness” – I just don’t get that.

When we were seated, we were glad to see only 3 other chairs and place settings, this meant (hopefully) only one other family. The other family arrived. They were a very nice couple from New Jersey with a 6-year-old named “Jimmy”. They didn’t seem to be uncomfortable with DC and the very best thing was that Jimmy didn’t seem to be afraid of DC as some young children seem to be!

He put up with him hugging the stuffing out of him and tried to communicate with him. Jimmy’s mother and father didn’t seem to mind being called “Jimmy’s Mom” and “Jimmy’s Dad” whenever DC had something to say to them. DC also had plenty of room for his ever-present book.

After dinner we decided to go to Karaoke or “Okey Okey” in DC-speak. We attended the night before  and DC seemed to like it. He even sang “Over the Rainbow”. Again, people recognized him throughout the next day so once again, he was loving his “celebrity status”.

We tried to pick a different song, but there were so many and I couldn’t come up with one off the top of my head that we could find in all of the listings. We also didn’t want to waste too much time getting his name in because although he seemed to like it, I knew he wasn’t going to sit there for hours waiting for his turn to come up, so “Over the Rainbow” it was…. again.

The crew member running the “Okey Okey” was wonderful, she recognized him right away from the night before. Had I known the introduction she had prepared for him I would have started taping sooner.

(Video edited for time – Over the Rainbow is a long song, you don’t realize how long until you are sweating out the performance)

She was wonderful and the audience was wonderful. He was thrilled. Celebrity status in tact, we headed back to the room – DC’s favorite place.

I do have to acknowledge the random maintenance man who let himself into our room at 10:45 to change a light bulb while DC and I were sleeping. Thanks, sir!

Once in CoCo Kay,  we opted for the glass bottom boat tour before hitting the beach. It was only an hour-long so we thought it would not be too much for DC. I am, by nature a “people watcher”. The people sitting across from me may have had the impression it would be much longer trip or that we may be shipwrecked 30 feet from shore,  as they brought most of the breakfast buffet with them. The man next to me was very entertaining as well. He was not having any of this. His wife, on the other hand was very excited about the whole thing. At one point the ship hand began diving under the glass and bringing up live sea creatures to pass around (I suspect they already had these creatures on the boat, but they made a nice production of him driving).

– Passing around sea creatures – I am now holding my breath…….

A BIG THANK YOU to the man seated 4 or 5 seats before DC for dropping a creature,  and taking all of the pressure off – I could breathe again. Even if DC dropped a creature at this point, it was okay because someone had done it before him!

The entertaining man on the other side of me however was not going to be touching any of these creatures…”If I wanted to touch vermin, I would go and pet some rats” – I had to pass every one over him to his wife. He was then required to take a picture of his wife holding each and every one of them (and there were an awful lot of them).

After the boat ride, we spent some time on the beach, had lunch of course and headed back to the ship and at DC’s request, back to the room – “I need to get some rest”.  DC was happy to lay in his bed with his books watching reruns of “Bones” (because, he was “Angel”, of course) and “Castle” (“Captain Hammer”) on “Two – Five” and eventually, fall asleep.

Our final stop, the next  day was going to be  Key West. DC remembered that there was a Hard Rock – or Hard Rock “Caf” – in DC-speak,  in Key West, so that was all he was focused on.

We took the tour that went to the Hemingway House. We’d been past it or in front of it many times, but we had never taken the time to go inside. We met with the tour guide who announced that we would be walking approximately 2 miles in total, but the tour would take at least 3 hours!

I knew at this point that this tour was a mistake! It takes 30 minutes to walk two miles – 3 hours meant a lot of standing around in the heat listening to stories along the way.

By the time we made it to the Hemingway House, DC had had enough. I saw a look on his face I hadn’t seen in years. Now DC does get anxious when he arrives anywhere, even if it is somewhere he really wants to be. I can always see the change, on his face. He stims, he repeats random words – “Tinkerbell, Tinkerbell, Tinkerbell” or “Another Wendy, Another Wendy, Another Wendy” and his eyes get wide. This was different. This looked like it was going to be a full on meltdown.

I took him off the crowded porch and tried to walk around to the back of the house where there were fewer people. We stayed there until he calmed down. Fortunately, he was able to calm himself down. He was calm enough that he said he would go inside. We quickly went through the house and informed the tour guide that DC was having trouble and we left the tour. It took all of 10 minutes to get to Hard Roc “Caf” and all was fine once again.

Hardrock 'Caf' - DC -speak

Thursday was a tough day on board. It was a day at sea, heading back to Baltimore. It was cold, so not only was every passenger on board but most were indoors. There was not a lot for DC to do. He just wanted to stay in the room but I told him we had to leave for a little while at least so the invisible cabin steward could come to clean the room.

He did participate in the “Wishes at Sea” walk for Make a Wish Foundation.

Wishes at Sea

Unfortunately the walk did not take all that long and it was getting colder and colder.

We tried to go shopping, but it was so crowded that no one could move. We managed to make our way into one store where DC found a Disney coloring book and markers (not that he didn’t have both in the room, but these were NEW). After wandering the entire ship, looking for somewhere for him to sit and color, we found a table in one of the bars, filled with others that seemed to have the same idea. I had more coffee and DC colored happily for a good long while.

cruise 487

Coloring done and believe it or not, I was at “coffee capacity”, we took another couple of laps around the ship and FINALLY it was time for lunch.

After lunch, DC REALLY wanted to go back to the room – “I have to get some rest”. He was happy to be back in the room, reading his books and watching “Two – Five” . He fell asleep as he always does, and fortunately that killed a few more hours and it was time for Dinner!

Thursday, was just hard. I was glad when it was time to go to bed……………..

By Friday morning, DC was ready to go home. He had a great time, but he was ready. Our original plan was to stop off in New York City (Dc’s favorite place) on the way home, but all we heard about during the last few days on board was just how much snow had been falling since we left Baltimore a week earlier.  So we decided we’d better just get driving when we got into port.

When we did arrive in Baltimore, there was not one flake of snow on the ground. Our shuttle driver reported that they did have close to a foot but they had some rain in the days that followed so all of the snow was gone.

We decided the stick to our decision to just drive home because we did not know how bad it was going to be closer to home. Fortunately the New York City stop was also going to be a surprise, so DC didn’t know anything about it. The change in plans did not pose a problem.

Home - just a "little bit" of snow!

Home – just a “little bit” of snow!

It was a very good thing we did…………………………..

We had to shovel our way in………

 

See: Baltimore, Over the Rainbow and Back – Pt. 1

and  Baltimore, Over the Rainbow and Back – Pt 2</