Everything is Related – Dr. Who

Posted by TakingItAStepAtATime

Relating the things that DC loves to anything else just helps to make it more enjoyable for him. DC loves to travel, but if we are not traveling to Disney World I usually rack my brain to come up with something to make the trip more interesting and exciting for him. Recently we took a trip to London and Paris.

One of the items on our agenda would be a trip to Cardiff and the Dr. Who Experience – have I mentioned that before? 🙂 . DC loves Dr. Who, but he gravitates more to the David Tennant Doctor and Rose combo. He eventually warmed up to Matt Smith, but he is having trouble relating to the Peter Capaldi Doctor.

On the recommendation of Autism-Mom we watched the Paddington Bear movie before we left. The movie is centered in London and I was hoping that he would warm up a bit to Peter Capaldi as he is a very funny character in the movie (two birds – one stone kind of relating for DC). He liked the movie and above all, it gave him a few more relatable items to bring to London and to Cardiff.

Paddington Store – Paddington Station

Paddington Station

So here we have the fourth installment in the “Everything is related” series.

Dr. Who is one of the very few “relatable(s)” that did not come directly or even indirectly from Disney. I happened upon the series quite by accident. I happened to be flipping channels one morning at 5am and there it was, on the Syfy Channel. I had missed the beginning and had no idea what this was or what was going on. (I had to do a little bit of research today to try to determine how long ago this was; I am guessing somewhere around 2008 as they were already into the David Tennant seasons. I assumed that the SyFy channel was showing the season that had just ended and not brand new episodes.). I discovered later that the episode I saw that first morning was “Gridlock” – it is still one of my favorite episodes.

I sleep with the TV on. Listening to whatever is on distracts me from the “mind race” I seem to have every night when I try to get to sleep. I know that I have mentioned that TNT (‘Two-Five’ in DC-speak) is the default channel in our house. I got into the habit of watching (half asleep/half awake) the 4am episode of “NUMB3RS” and then the 5am episode, fully awake with coffee before DC woke up. For some reason the 5am episode was not on the schedule on Friday mornings. Not wanting to give up my “sitting in bed with coffee ‘me-time'”, I started flipping channels searching for anything that was not an infomercial.

I was totally hooked on NUMB3ERS and when TNT removed it from their lineup entirely, I had to just purchase the entire series. But on the upside, due to TNT’s very odd Friday scheduling, I had become an official “Whovian”. I went out and purchased all of the newer revamped seasons that were available at the time.

Quite by accident again while I was watching my newly purchased Dr. Who DVD’s, DC walked into the living room just in time to see a burping trash can. Over and above anything else, DC is a male, therefore anything having to do with bodily functions is just hilarious to him. He was hooked.

We purchased our Dr. Who Experience and train tickets months before we left on our trip. It was a two hour train ride from London to Cardiff and then a short cab ride to Cardiff Bay. I have to say that I was just as, if not more excited as DC was.

Inside was a snack area and quite a few very lifelike figures. DC did his best not to “Blink”.

Don’t Blink

I did not know what to expect inside the “Experience”- I imagined something like the old Star Trek Experience in Las Vegas – a virtual ride. It wasn’t like that at all but still a lot of fun. Of course, photos are not allowed inside the “Experience”.

Star Trek Experience Quark’s Bar

The exit from “Experience” brought us into an area of props – TWO Floors (exciting!!!). Photos are allowed in this area so I am going to post a few… Please understand that I am using a great deal of restraint in not posting every single one!

Cardiff Bay, the area around the Dr. Who Experience was very pretty, filled with shops and restaurants. There was a walking tour that was part of the ticket price to the Experience. We chose not to wait and since we had a map, we took the tour on our own. To be honest all I wanted to find was the entrance to Torchwood. As it turned out it was right in that same area and impossible to miss. While DC and Doug rode the carousel, I walked over and took a few photos of the Torchwood fountain (the secret entrance to the Torchwood Institute).

We had a nice lunch at Bill’s and opted to walk back to the train station. I would definitely recommend Bill’s for lunch, maybe not the walk back to the station.

We had little time before our train was scheduled to leave so we took a quick walk up to Cardiff Castle where a few Dr. Who scenes were filmed and where the Tardis landed in celebration of 50th Anniversary of the Dr. Who Series. It was only a five-minute walk from the station, but we really did not have the time to go through the whole castle. I wish we had scheduled it into our day ahead of time. Normally DC loves a castle, any castle but he was exhausted at this point so viewing it from the outside was just fine with him.

I am not going to give away what goes on inside “The Experience” itself because, you know, “Spoilers Sweetie” but I will say that DC found the final “piece of the puzzle” and inserted it into the proper place and helped to save the universe……

It was a great day all around for us, but more importantly – for the universe.

I see London, I see France…… (Part 2 – London)

Posted by TakingItAStepAtATime

I should first explain that I have an aversion to subways. This began back in the 80’s when a group of 8 or 9 of us went to NYC to see Phantom of The Opera. It was Good Friday and we all had the day off from the bank. We went into the city early to spend the day there before the show. At some point during the day, we had to take the subway. We started through the doors and because there were so many of us there was not enough time for all of us to get in before the doors closed – my friend Linda was left on the platform as the doors were closing. Two other friends, Lee and Michael pried the door open so she would not be left behind. That was it for me! I am still to this day terrified that the doors will close leaving someone behind…. So my complaints about the Underground may be just my problem…..

My intention was to write another installment in the “Everything is Related” Series from our most recent vacation, and I will do that next, but there were so many other things I wanted to say about our trip that I decided to put those off for now. There were tips I found and received before we left that came in handy and I wanted to pass them on along with some of my own observations for anyone else that may be heading out to Paris, Disney and/or London.

Really, the only thing that I did not like about London were the trains. Trains, Trains, Trains. They really were the hardest part of our trip for DC as well. The trains and stations were just so very crowded. He did not like having to stand, he did not like having to go from train to train. He did get a bit anxious about it after a day or so. To lighten the mood, I started repeating his “Done” video to him inserting the word “Trains” each time he started looking like he’d had it. “Done” is a video I took of him in Las Vegas when he was “Done of Walking! Done!” – he still remembers it because he was so mad at the time. Making a joke of something he is upset about can help at times.. I can guarantee that if you asked him right now, he would tell you he was “Done of Trains”. He really did not like it at all.

I, of course was anxious from the beginning. I do have rules in place for trains and elevators anyway (did you really think I wouldn’t?) – Due to my train terror explained above – DC has to get on and off arm in arm with me. If the door shuts at least we will be on the same side of it – together. I have elevator rules as well. DC never gets on an elevator first or last, always in the middle. If there are only two of us, then again – it is arm in arm with me. If the door should close, he will be with me on whatever side we end up on and not by himself. Also there’s the Rosalind Shays elevator scene that still haunts me to this day (20 points to anyone that gets that without having to google). So yes, I have always had rules about elevators and trains.

The stations were all very crowded as well. Paddington Station actually holds people at the top of the stairs behind a rope when the Underground gets too crowded. DC really does not like it when I hold his arm, but it was just so crowded everywhere that I had to. It wasn’t up for discussion.

“Mom! My arm is bothering you!”

We did get Oyster Cards for the trains – I believe they can be used for buses as well. They can be pre-loaded for as many days as you wish. The cards need to be swiped to get in and to get out of each station. They are available at the stations, but you can also purchase them on-line ahead of time.

Below are three posts from Autism-Mom with some good information about traveling to London with a child on the spectrum – including a link for the Tower of London “Visiting with children on the Autistic Spectrum”, believe it or not!

THE AUTISM CONNECTION – #1000SPEAK

Tripping Across the Pond. What I Learned from Autism Mums in Other Countries

Getting Ready To Travel

Autism-Mom also tipped me off to Fast Passes or “Fast Track” tickets. I would not have thought to even check for something like that. As the name suggests, the passes will get you into the attractions or sights faster – no lines. They can be purchased for one site or in packages of many different combinations. We purchased ours ahead of time on-line and they really worked out wonderfully. I’ve heard that the line for the London Eye could at times be a good 45 minute, if not longer, wait so I was especially thankful for the Fast Track. We used the Fast Track for the London Eye and the Tower of London, it was very simple.

I was really concerned (as I was in Paris) about finding food DC would eat. This really did not prove to be a problem at all. He did, every once in a while, have a difficult time understanding that chips (“NO Chips! French Fries, PLEEEESE!”) were French Fries. I explained this to him many times before we left on our trip and he seemed to understand it for the first few days. As it turned out many restaurants called them fries or potato wedges. After a few days of reading many different descriptions, I think he just became confused and would no longer understand that chips were French fries.

The train ride from Paris to London was about two hours long. The ride from London to Cardiff was a good two hours as well.

I won’t say much here about the Dr. Who Experience because, you know…… “Spoilers, Sweetie” but I will say that DC had no problem with it. I did, after we came home, for informational purposes, check to see what if any accommodations they might have in place. I was able to find some accessibility information – most of it was for wheelchair access and mobility.

There were a few loud noises and flashes and some yelling of directions and a few scary areas but he did well. The explosions at Charlie and The Chocolate Factory – The Musical, a play we saw later in the week in London upset him more than the explosions in the Dr. Who Experience. Below is a list from the website of what one may have to deal with inside:

Low light levels throughout
Light effects with variable light levels (no strobes or lasers used but occasional flashes)
Special effects (moving floors, smoke and haze)
Involves walking and standing for up to 30 minutes
Various floor surfaces including optional steps
Interactive and static exhibits
Loud audio soundtrack with speech, music and effects

Afterwards there is a walking tour which was maybe a mile, if that. The route was all flat paved surfaces, no hills and really no traffic to contend with.

Back in London…..Camden Market, Piccadilly Circus and Portobello Road are all very crowded areas, Camden Market being the most crowded. I would have liked to have spent more time there, but DC was really having a hard time and then it started to POUR, so back to the train we went. DC is used to walking in NYC but this was much more congested and hard to maneuver because of all of the vendors out on the sidewalks. He did well and made it longer than I expected he would.

Restrooms: Unlike Paris, there were public restrooms to be found, most of which are “pay” Water Closets. They seemed to run anywhere between 20 and 50 pence – so always carry change with you.

The flight home: Vowing that I would never do this again after our flight in to Paris on Open Skies in my crabby post from France, the flight home on American was like night and day. The seats were normal size and there was no juggling involved.

But really, other than the crowds on the trains, DC did well in London. He found food he liked. He saw places he recognized (We will talk about that more in “Everything is Related” The UK (and Paris) Edition. People were friendly and…… they did not put foam in my coffee.

Clarification, The Mighty and Airport Security

Posted by TakingItAStepAtATime

A little over a week ago as I was preparing for a trip to Paris and London, I wrote a post about the preparations and the issue we had with my son during a security check on one of our recent trips. The original post, “Off we go….. almost” can be read here.

At the same time, the Mighty was asking for travel, airline and airport stories. I submitted a portion of the story I had just written about DC and the TSA Agent at the Charlotte Airport back in October. I did not submit a photo because really, what kind of photo would I have to go with that story? The Mighty replied and said that the photo would not be a problem – they would just use clip art.

The Mighty article posted the following day, with the title My Son Did a Great Job at Airport Security. But This Guard Did Not. The clip art they used was one of a little boy holding his passport looking up at a TSA Agent. At the time I thought nothing of it. I know they use clip art. I assumed most people knew that the Mighty often uses clip art.

But then…… I started reading some of the comments! People were outraged that the TSA would send a child through the body scan. It was only then that I realized that the photo used was misleading people into thinking that a small child was forced to go through the body scan AND then grabbed and patted down.

This was partially my fault as well. I am used to writing for MY readers, all of whom know that DC is an adult. The stories I submit to the Mighty are usually excerpts or edited down versions of an original story I have already posted. It does not occur to me to add additional detail. (It will certainly occur to me going forward).

I did feel the need to reply to the comments that were there and explain that my son is an adult. The Mighty, in turn saw my comments and immediately updated the photo and wrote a clarification

“The Mighty Hi, Mighty community. We used a stock image for Vickie C.’s photo; her son is an adult with autism. We sincerely apologize for the confusion. As Vickie C. explained in her own comment, “They did not search a child or make a child go through the body scan. They also did not treat my adult son with respect.”

and an apology to me. I know this was not intentional on their part as I said earlier, I really didn’t think anything of it until I read the comments. The facebook post photo would not update but the clarification was there.

Having said all of that, even after the clarification, my point that my child (Adult son) was treated like a non-person seemed to be lost in the body scan outrage. My point: I first was confused by their treatment of him knowing he has Autism, actually confused by their treatment of him under any circumstances. After thinking about it and realizing that the fact that he has autism probably was the reason they did not even bother to speak to him or tell him what was going to happen is just plain wrong. This is a problem.

Since the article was posted I have received a few tips regarding airport security and accommodations. I will share them at the end of this post in the event they might come in handy to anyone that may be reading.

I don’t generally look for accommodations for DC. I do always want him to try before looking for an accommodation. If it is something that I know he cannot or will not be able to do, then yes, of course I will check out alternatives. If he is capable to doing it, I want him to do it. Accommodations are not available everywhere, they should be but they are not, so if he can, he will. The only accommodation he needed in this case was enough time for the process to be explained to him without getting too much direction from anyone other than myself – too much direction would only confuse the issue. We had that time, he did well, he listened and went through with no problem.

The treatment on the other side of the scan was totally uncalled for. Putting aside the wrongness of it for a moment, this kind of treatment can actually cause a problem where none would have existed. What if DC lashed out in fear? When he is confronted by a dog (he is afraid of dogs) his first instinct is to kick. What would have happened if, in fear he decided to kick or push or run? DC has never been violent, he has never hurt anyone but one does not know how he will react if frightened. He is a big strong boy. What would have happened then? I don’t want to think about it.

So I’d like to apologize for any miscommunication, but my point was not that DC had to go through the body scan at all. My point was that there was no reason for the treatment he received. The treatment he received could have escalated the situation into something far worse. NO ONE should be grabbed and patted down without a word or an explanation, no matter what age.

Below are some of the tips I received that you might find useful:

Check out The Arc of the US Wings for Autism program that gives families the opportunity to practice at the airport and trains TSA staff about people with disabilities. http://www.thearc.org/wingsforautism

The Arc | Wings for Autism

Is Wings for Autism coming to your city? Keep checking the schedule as more dates are announced…

thearc.org

and TSA Cares:

Vickie, just read this post and while we haven’t had this exact scenario, separation for us (during the checks) are traumatic. We have had great success using TSA Cares and making prearrangements. We are met by a supervisor, who has a description of our situation and needs / concerns ahead of time. The supervisor escorts us through and stays with us until released after check point. We’ve even had some take us to our gate and ask what else they can do. (Can you say personal escorts with clout.)

I’ve even had a friend use TSA Cares to have his special needs child travel by himself. That boy is not much different than my son and parents were able to go to the gate with this child, and the meeting parent at other end met him at the receiving gate. They were completely satisfied and happy as well and love TSA Cares. It may be a well kept secret but we’ll worth our efforts and money well spent by our government.
We use it every time we fly.

(Please excuse the more-than-average amount of typos – I wasn’t intending to write anything today and this was written very quickly while talking on the phone and looking at proofs – multi-taking is also not one of my strengths)

Off we go….. (almost)

Posted by TakingItAStepAtATime

I just finished reading a post from Autism-Mom, PREPARATION AND PANIC about the preparations for their big trip coming up – or should I say the “mind-race while one is trying to sleep” -preparations she is making for her family trip.

I had to laugh out loud as I have been doing the same thing. Our trip is just a couple of days away and along with the “mind-race” and the anxiety about being the absolute worst packer in the world, there is work to contend with.

“We are leaving on Friday, so my last day in the office will be Thursday”

“So you need everything on Thursday?”

“Nooooooo, I need everything before Thursday so I have time to actually finish everything before I leave on Thursday”

We’ll see how that goes…..

We will be traveling to the same place as Autism-Mom and we did compare calendars to see if we could have coffee in London, we discovered we were close but no cigar – we would not be there at the same time.

Packing issues:

As many lists that I make and as many times as I go over everything in my mind, I always forget something. Once, being so proud of myself for not forgetting the one thing I was sure I’d forget, I discovered when we arrived that I did not pack a single shirt for DC – not one!

Then there is me:

I do not have many clothes that fit me because I have gained some weight – shhh. I will not go out and buy new clothes because that would be admitting defeat…. So I have to wait until the very last minute to pack all of my clothes because, you know, I have to wear some of them until we leave.

Flying:

The flight is also making me anxious. I am not one who can ever sleep on a plane, ever. I can’t sit still in those seats. DC, on the other hand is very good on airplanes – now, not so much when he was young – but he is really good now.

DC has flown quite a bit, but this will be his longest flight so far. Security is always a bit overwhelming for him, but he gets through it. As many times as he has flown before, he never had to go through the body scan until our trip in October to North Carolina’s Mountain of OZ.

There were a few times over the years when the security lines were not very busy and I wanted him to go through so I could explain it to him without holding up the line, but as soon as I mentioned “Autism”, they whisked him though the old walk-through before I had the chance to finish my sentence. That was fine, but I really wanted him to do it once in case there was ever a time that we weren’t given the choice. Of course I do explain it all to him while we’re in line and make him watch what everyone else is doing, just in case but as you know, no amount of explaining can take the place of doing.

Heading home from the Charlotte airport – it happened. He had to go through the body scan. As always I explained and showed him what he had to do while waiting in the line. Doug went through first as always and waited on the other side. I was behind DC. The security people saw us giving him instructions and the woman let me get up close so I can show him exactly what to do. He put his feet on the foot prints and raised his arms and waited for them to tell him he was finished. He did a great job.

He turned to walk out of the body scan when the guard on the other side near where Doug was waiting, grabbed DC with absolutely no notice and without saying a word and searched him! It happened too fast for either of us to react! DC was now screaming “Not all right! Not alright!” while I was trying to get through the scan to get to him. Both security guards saw us giving him directions. I told the woman he has Autism. I thought that they ‘got it’. There was no way they could not have seen that maybe they should approach with care or at least say something to him before he was grabbed and patted down.

I finally made it to the other side and DC was still yelling and really could not function – he couldn’t get his shoes and other items off of the conveyor belt – he just continued to yell, fists in the air “Not all right!”. Now all of the other security people in the area were watching as I tried to calm him down. I was praying that none of them would say anything or try to approach him and make matters worse. He was really causing a “disturbance” in the airport. This went on for a good long while. I had him sit down and tried to explain to him that he did everything correctly. The man should not have grabbed him without letting him know first. This was not his fault and he had every right to be upset. Eventually he did calm down and there were no aftershocks on the flight home.

People do at times overlook him completely and direct their questions to me instead of talking to him. I do always ask him the question myself and make sure he gives the person the answer himself. I mentioned earlier in the post that I thought that there was no way on earth that the security guards did not understand even before I explained that DC has Autism. Now as I think about it, I wonder if they actually did understand and decided that due to his Autism, they did not really need to talk to DC directly at all…… and THAT is a problem.

***

Versions of this post were also published:

On the Mighty: “My Son Did a Great Job at Airport Security. But This Guard Did Not.”

and at The Behavior Station

Still knocking

Posted by TakingItAStepAtATime

It has been a busy week and by the time this post publishes, we will be spending a long weekend at the Cape. Normally at this time of year we can expect semi-warm weather, but judging by the week we just had, it is not looking good. Fingers crossed for no rain at least.

This trip was scheduled so that I could attend the birthday party of the mother of one of my oldest friends (grammar school, believe it or not). Another old friend will be coming up from Georgia to attend as well. I am looking forward to seeing them.

Since we were going to be traveling to Cape Cod for the party, we decided to make a long weekend of it. We are hoping to get to Martha’s Vineyard or Nantucket on one of the days we’re there.

Three years ago we traveled to the Cape for the same reason, but we did not stay long enough to do anything else, so we decided to go back a few months later to visit Nantucket and to pay a quick visit with my friend and her family.

Below is a re-post from that adventure. I am keeping my fingers crossed for some decent weather this weekend and I am still knocking on wood…

From May 2014 …

Knock, Knock, Knock on Wood

Just recently I was reading a blog that I follow – Raising 5 Kids with Disabilities and Remaining Sane Blog. The title; What’s in my Purse. The post was about the many trips the family has made to the emergency room over the years and what the author learned to carry with her at all times. If you have a minute, check it out.

It made me realize how lucky I am to have made only ONE trip to the ER with DC – that is correct, ONLY ONE! (Knocking wood, Knocking Wood, Knocking Wood). The one trip came at age 21 and for the most ridiculous reason. As you may or may not know, DC is 23 with Autism. Safety is not something he has any awareness of. He IS a little better now that he is older, but he is better because he has been taught not to do this or not to do that, not because he really understands what can happen to him. He doesn’t really understand many things unless/until they actually happen. So not wanting him to get hit by a car in order for him to understand what could happen if he were to be hit by a car….. I have to hope that making rules, and pointing out everything around him, will have some impact on him.

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.

A few years ago, we took a weekend trip to Hyannis, MA in Cape Cod. He arrived Friday evening. The plan; have dinner and hang out at the hotel on Friday night. Saturday we would take the ferry, and spend the day in Nantucket. Sunday, we planned to stop in and visit one of my oldest friends before we headed home.

We arrived on Friday evening. DC was happy to be in the hotel. As far as he was concerned, we could just stay there. He loves hotels. Saturday, as planned, we took the ferry to Nantucket. He loved the ferry. We searched out a few book stores as we must (see “Off to the Book Store We Go”), looked around, had lunch and took the last ferry back to the hotel. It was a nice day. We had a good time.

Sunday morning was going to be spent just hanging out in the hotel room until it was time to check out. DC was watching a movie on his kindle, Doug was on the deck and I was packing up the bathroom items. I was only in the bathroom for a few minutes. When I came out, DC was sitting at the desk; right where I left him. He yelled “Mom! Tears.” DC, as a rule almost never has tears, his eyes never water – even when he cries, he rarely has tears. When he is really upset and really crying and wants to make certain I know how upset he is, he will use water or spit to create tears, just for effect. Even as a baby, he did not have tears when he cried. But here I could see he had tears running down his face…… real tears.

“Tears!”

I thought possibly his allergies were hitting him harder than usual – Doug had the deck door open and the deck was right on the golf course. “DC, what’s wrong, do you have something in your eye?”

“Mom! Tears! Ear!” On one hand he was excited about the real tears on his face but his excitement was mixed with a bit of panic.

I had no idea what he was trying to tell me. Then he showed me the ear bud from his Kindle. There were rubber covers on the ear buds and one was missing. Panicking, I yelled out to Doug something that probably made no sense, and ran DC into the bathroom. I couldn’t see anything in his ear. DC started to panic now that he realized that I couldn’t get it out right away.

This entire exchange above…. Tears, Ear and showing me the ear bud would normally be cause for celebration – DC being able to tell me that something is wrong and what is wrong is a very BIG deal, but all celebrating had to wait because he was getting more panicky by the second.

I still could not see anything in his ear. I dumped everything that I had just packed out and could not find the tweezers. I sent Doug down to the front desk to ask for a flashlight and tweezers, while I tried to keep DC’s fingers out of his ears and tried to keep him from flipping out any more than he already was. Doug came back; the desk had no tweezers (?) and no flashlight (?).

We took DC down to the desk. He would be okay for a minute or two and then he would freak out. The man behind the counter did not seem to understand what we were talking about. I am sure he thought we were all crazy. I was somewhere between panic and laughing hysterically at the ridiculousness of the whole situation while DC was making very loud noises, yelling out random words, flapping, stimming and doing everything else that comes with his anxiety. I’m not sure what the man at the desk thought was going on and why we needed a flashlight and tweezers, but watching DC in the middle of the lobby absolutely loosing it frightened him a bit, I think and asked his assistant to go check again. She came back with no flashlight and no tweezers. Seriously, what hotel doesn’t have a flashlight?

I was so trying to avoid the Emergency Room. It hadn’t been all that long since DC finally became comfortable with doctors. I didn’t want a long and scary emergency room visit to erase the years of progress he had made. The other issue was it was his EAR! For years, when we went to the doctor, he would get unbelievably upset and totally meltdown if anyone went near his ears. I remember one of the doctor’s assistants, who was either new to the office or had not had to deal with DC getting his ears checked saying, “Oh! I was wondering why we had to bring extra trash cans into the examining room! I get it now!” – Yes, every single time, he would get so worked up, screaming and fighting that he would vomit. This went on for years. The very last thing I wanted to do was to bring him to an emergency room to have someone poke around in his ear.

The desk clerk gave us directions to the nearest pharmacy and we took directions to the ER too, just in case.

I rode in the back seat with DC to keep him from pushing the ear bud in farther. Doug ran in to the pharmacy to buy the tweezers and flashlight. Now we are all in the backseat of the car, armed with a flashlight and tweezers, trying to see inside his ear. I can’t imagine what the other people in the parking lot must have been thinking. DC had enough at this point and was not cooperating at all anymore…and….. I still could not see anything.

I knew we had to suck it up and head for the Emergency Room. I still wasn’t positive that there was anything in his ear at all. Did he just think that it went into his ear and it was really just on the floor somewhere at the hotel? I didn’t know, but he was so upset that I had to assume it was in there somewhere.

We arrived at the emergency room. It was a weekend in a tourist area; I was expecting hundreds of people waiting. I didn’t know how I was going to keep him calm and keep his hands away from his ear while we waited. We walked through the door and there was only ONE person in the entire waiting room! I wasn’t sure if that was a good or bad sign but I was going with good. I took him to the desk and explained the situation to the clerk. One look at him flailing around and she asked if he needed to be sedated. I told her (with fingers crossed) that he would not.

They took us right in! (I love this place). They put DC in a bed, the doctor came and checked his ear. DC LET him check his ear! He really must have wanted this thing OUT! He told me he could see it but it was in there deep and he would need to use another tool to get at it. All I could think was “No way he is going to let you do that!” but I SAID “Okay, he’ll be fine with it”.

I explained the situation to DC and told him what was going to happen, not really knowing if he would understand what I was telling him, but he said “Yes! Ear!”, so I think he did understand.

The doctor went in with some sort of funnel-looking thing. I was truly amazed that DC was cooperating and keeping still. He was finally able to get the thing out. Of course DC had to examine it completely before they got rid of it, I suppose just to be sure that it was out.

DC calmed down immediately and we made a big deal about how brave he’d been! All of my worrying about the doctor, his ears, traumatizing him with an ER visit was for nothing. He was totally unscathed by the whole thing and was very proud to tell people that he had been in the ‘hos – i – bull”.

We were done and over it in time to get back to the room and finish packing. Now he wanted to put those things right back into his ears!

“NO, NO, NO!” a thousand times, no……. They went directly into the garbage.

We were also able to visit my friend as planned.

I went on a hunt for new ear buds without any rubber or removable parts as soon as we got home.

Coincidentally, as I was writing this story, DC received a belated birthday gift from one of my friends. This gift included two boxes of character Band-Aids that DC is already wearing proudly.
(and yes…….. I am still knocking wood……………)

Snow-cation

Posted by TakingItAStepAtATime

Our preparation for the Blizzard of 2015 consisted of packing our bags and booking a hotel room. I wasn’t taking any chances. I wasn’t really concerned about this storm until I received a robo-call from our utility company warning of power outages. You might remember that back in October 2011 we lost power for 6 days.

The following year we had a few pretty big storms. One in particular dropped a couple of feet of snow on us. We did not lose power but we were trapped for 4 days.

We live on a cul-de-sac. Usually the town comes to plow the road, but only to the edge of the cul-de-sac. Later a smaller pickup truck comes to finish the job but it is usually somewhat of a wait. When day 1 came and went, I didn’t think all that much of it. On day 2 the town announced that all of the roads would be cleared by the following day. Day 3 – nothing – I started calling Public Works to a “full voicemail” message and finally no answer at all. We were left trapped in waist-high snow with no one to contact as the rest of the town offices were closed. Finally on Monday (day 4) I called the police, only to find out that they had our street marked “complete”.

I reasoned that if the power did go out the hotel should have a generator so at the very least we would have heat. If they did not have a generator, at least we would be able to get out of the place and not be trapped in waist-high snow for days on end.

I explained this to DC, leaving out the “power-outage” piece of the story.
As you also may already know DC usually loves nothing better than a hotel room. I thought he’d be excited.
On Monday morning we packed up what we thought we would need for the next few days and headed out to my office. DC loves to come to work with me so he was thrilled.

He was a tiny bit anxious about the snow but nothing really over the top. Doug came to meet us at work so that I could follow him to the hotel which was just over in the next town (someday we will talk about my sense of direction or lack thereof).

We arrived at the hotel and checked in. DC was getting himself set up at the desk as he always does, when he discovered he had forgotten the cord for his laptop at my office. I won’t go into detail about the chaos that followed, just believe me, it was a tragedy. Doug went back to get it before the roads got worse and DC, while continuing to perseverate about his cord, kept himself busy with you-tube on his phone. One would have thought Cinderella entered the room when Doug came back with that cord!

A couple of hours later he really began to get anxious, asking over and over again when he could go home. I realized that although I explained all of this to him and that this was certainly not the first time we left and stayed in a hotel due to an upcoming storm, he was still very confused. I thought about how different this ‘trip’ was from the last storm trip.

Our previous trip to avoid a storm (although I was sure we’d be sitting in a hotel room for 3 days) turned out to be much more of a ‘real’ vacation than just an escape from the storm.
We packed, went to work and left from there – he didn’t get to go home first.
There was a travel ban in effect so there would be no dinner at a restaurant.
He was very concerned about going to his friend BB’s on Friday. It was on the calendar, you know.

I told him that I understood why he was a little bit confused. I explained that we were on a “Snow-cation”. We had come to the hotel so we didn’t get stuck in our house. I also explained that the hotel was very close to our house so he did not have to worry about going to BB’s house. We would be home before Friday (I wasn’t ready to mention a specific day for him to obsess over). I did finally have to mention the threat of losing power as another good reason to be “Snow-cationing”. He liked the word “Snow-cation” and the threat of a power-outage seemed to do it for him. “Confused” became the word of the day. He used it anytime he needed the explanation again. It was comforting for him to have a word to use to explain his feelings and he felt better about expressing his confusion because I had told him that I understood. So, even though I had to explain our “Snow-cation” a few more times, he wasn’t as anxious about it.

He was able to use his computer, he read and edited some books, he went to the gym and went swimming in the pool. It was like a vacation (of sorts) to him. He was much better and a little less confused about everything.

I’m not sure that he really understood how close to home we were. Even though it was only a 20 minute drive from my job. I think that the mere fact that we were in a hotel, meant distance to him.
He was concerned about his work and going to BB’s house. I did point out a few other places in this town that we visit often as a point of reference as to just how close we were to home, but I’m not quite sure he understood.

When I was relatively sure that all was clear, our street was plowed and we had electricity at home, I told him what day we would be heading home.

“My ‘Powers’ is back” – apparently all of the explanation I had given him only led him to believe that the power was out at home –
“Yes, DC, your ‘powers’ is back”

When all was said and done, we did not get as much snow as they predicted, some parts of the state did, but we ended up with a little more than a foot. Still a foot is a foot, and I would opt for the “Snow-cation” again and now that DC worked through his anxiety, I think he would too.

Because, Because, Because, Because….BEEEE CAUSE

Posted by TakingItAStepAtATime

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.

Now we were “Defying Gravity” on our ride up to the top of the mountain –
while desperately trying to “Keep away from the Jitterbug” –
to “Ease on down the Road”, –
on our journey to reach “The Merry Old Land of Oz”.

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.

: Entering Kansas

: Hmmmm, the Wizard in Kansas?

: Miss Gulch!!!! YIKES!

: Cold Dorothy

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.

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!

“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.

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

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!

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.

“We’re off to see the Wizard”*

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

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.

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

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.

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…………

“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…

“For Sami, Love Daddy” #WorldDownSyndromeDay

Posted by TakingItAStepAtATime

I realize that this story was originally written about Down Syndrome Awareness Month. But it was also written about one of DC’s best friends and one of my favorite people. We have watched Sami grow up into an amazing young adult (and quite the fashionista to boot). We are lucky to have Sami and her amazing family in our life.

*****

In 1992, when Sami, who has Down syndrome, was 18 months old, her father, Rich, was the Senior Producer for the Sony JumboTron in Times Square. He began producing a series of spots to raise awareness and acceptance of people with Down syndrome to run on the JumboTron during Down syndrome awareness month. He continued to produce these PSA’s on his own until 1994, when he contacted Emily Perl Kingsley.

Emily is an Emmy award-winning writer for Sesame Street, the author of a wonderful essay entitled “Welcome to Holland” and a personal friend of Big Bird. She also has a son with Down syndrome.

Emily Kingsley immediately saw the value in what Rich was producing and through her contacts involved NDSS. Together they produced spots which included children with Down syndrome from all around the country.

The response was overwhelming! All of the featured children and their families from 25 different states came to New York City to view the spots on the JumboTron in Times Square.

As there was so much interest that year, NDSS held an event in Times Square the following year, where all the families could gather to watch the video. A wonderful reception followed at Sardi’s for all the families that made the trip.

In 1995, as a result of the success of this event, the NDSS Buddy Walk was born. Again families gathered in Times Square to watch the presentation and then headed up to Central Park for the Buddy Walk.

This year Sami, now 22 years old, returns to the Square for the event that was created because of her and the love of a father for his beautiful daughter.

“In my heart the event will always be “For Sami Love Daddy”

– Which is how Rich tagged everything he produced…….

Sami with her “Best Buddy”, Chloe were featured in the Bright Lights of Times Square in New York City on September 21, 2013.

Sami and Chloe on the JumboTron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

Hello Dolly!

Posted by TakingItAStepAtATime

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.

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.

The Front Row

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

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” )

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

Posted by TakingItAStepAtATime

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 to 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.

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.

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.

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.

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.

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”.