“For Sami, Love Daddy” – Down Syndrome Awareness Month

Still, one of my favorites…..

“For Sami, Love Daddy”

Chloe and Sami

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.

In 2013,  Sami, then 22 years old, returned 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…….

For Sami

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

Sami and Chloe on the JumboTron

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

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

 

(originally posted in September 2013)

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Flights, Ships, Fears…

As I make preparations for our upcoming vacation I notice that I am more apprehensive than I usually am. I am worried about DC’s seizures. I am worried about being on a ship if he should have a seizure. His doctor informed me that DC should not go swimming or even take baths any more. He seems to be fine with this now, but who knows how he will react once we are there. On the plus side,  DC does not have as much interest in swimming as he used to, so I am hoping it will still be “fine” with him once we are in the warmer weather.

I am also reminded of an airport incident back October 2014. I was angry that the TSA Agents frightened and upset DC. I was more angry that they did not treat him as a human being. After writing the post below and thinking about the situation some more, my anger turned to fear about what COULD have happened.

DC is not aggressive, he never has been… but we never know what someone will do when frightened. DC is terrified of dogs. When a dog he does not know (even a dog he does know) comes at him as dogs often do – his first instinct is to run or hide behind me. His next instinct is to kick. He is not being aggressive or trying to hurt the dog, he is just frightened and wants the dog to go away. It is instinct. It is a reaction, plain and simple.

Having this agent grab him and search him as he did frightened him into the closest thing we’ve had to an actual meltdown in years. I really thought he was heading for one. It took awhile but he was able to get himself together. What if DC, in his frightened state, kicked him or hit him? What if he tried to run away?  What would have happened?

If these people saw fit to treat him this way, KNOWING he is autistic, I am terrified to think of what they would have done if he lashed out at them. I would like to say that I don’t want to think about it, and I really don’t want to think about it, but I have to – of course I have to……..

The more stories and news reports I hear and read, the more fearful I become.

From October 2014 is an excerpt of that post:

Off we go….. (almost)

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

“Hello Sweetie”

Part 2 of our recent trip to the Rhode Island Comic-Con….

IMG_2792

 

(from Part 1 – “Don’t You Cry No More” #Supernatural)

(I have a lot to say about our visit to the Rhode Island Comic-Con. Some good; some not so much. Everyone we met was very nice. Now I understand that they are supposed to be, but we all know that it isn’t always the case. There were a few people who were just extraordinarily wonderful to DC, so I want to be sure I mention all of them. Because I have so much to say about the entire event; Autism-related and not,  I have decided to split the story up into a few parts, by category rather than in order by the day) 

I will say again that I am so glad we went on Friday night just to get the lay of the land for Saturday. It was not crowded at all. We saw and did more that I ever imagined we would get to do – of course this also means that I spent so much more money than I had intended. But how could one pass up all of these people just standing around waiting for the crowds that didn’t come until Saturday?

After leaving the “Supernatural (or the “Don’t You Cry No More”) room, thinking we would not be so lucky as to happen upon another room with people just standing around waiting – we happened upon Scott Wilson.

We had a photo op scheduled with him on Saturday, but I wasn’t going to pass up this opportunity. Now, DC has no idea who he is but he was going to be my stand-in for the scheduled photo op as I am just too fat to have my picture taken, so he was delegated as my stand-in here as well.

DC really took a shine to him even though he didn’t know who he was. He was a nice man with grey hair and a beard and that was good enough for him. I took his picture with DC and then he insisted that I get in a shot (a photo that will never see the light of day).  Also in the Walking Dead room was Seth Gilliam – DC does not know him either, but he was happy to have his picture taken (still standing in for Mom) – he is always happy to have his picture taken.

IMG_2784IMG_2785

 

Technically we were there to figure out where everything was in anticipation of the crowds on Saturday and we could already see that there was no information readily available. It was very important to DC that we find one particular person before the weekend was done.  We asked THE only Volunteer that would prove to be helpful during this entire weekend.  He gave us directions to another area that we never would have found on our own (more about his favorite person in another installment). While walking around this area we came upon Alex Kingston’s table. This was the one and only table where we found a line that entire night. We did have a photo op scheduled for the following day, but we got in line anyway. This was one of the very few times that our VIP tickets came in handy and they whisked us to the front. At this point DC was so excited he began squealing and stimming. She and most of the people in line seemed to be getting a kick out of just how excited he was. Fortunately there was a table between her and him because if there hadn’t been, he would have headed straight for all of that hair. She signed his photo with “Hello, Sweetie”, which just sent him further over-the-top with his squealing. We left the table with DC yelling and waving “Good-bye” to her and then of course a big “Good-bye everybody” complete with a bow, to the rest of the people in line.

We walked around a little bit more. DC stopped quite a few random people in costume and insisted on having his picture taken with them. Most of the people he stopped were dressed as princesses and they all obliged.

I decided that we should try to find the photo op area so we would not spend Saturday searching. We did eventually find it. They were holding the photo ops in the arena – it was large enough but it was also full of vendors. We looked around at some of the vendor tables and noticed that the schedule on the wall (the only information available about anything was the current photo op schedule and the panel schedules) was showing that Alex Kingston was in one of the photo op rooms right then. We had a ticket for the following day, but due to the many conflicts on Saturday, I thought it would make my life so much easier to be able to get at least one out of the way on Friday. It never hurts to ask, right? There was NO ONE in line, no one – really – that was just how dead it was there on Friday night. While DC was checking out an Anna (Frozen) doll at one of the vendor booths, Doug went over to ask. He came back with a “yes”.

As we walked over to the “booth”, I reminded DC not to touch her hair.

DC: “No touch the hair”

Me: What is the other rule?

DC: “Don’t pick up the people”

They took the paper ticket with no problem.

When he got inside the curtained area, he immediately began squealing.

Alex: Well, Hello Again!” (who would not remember this boy squealing at your table earlier that evening?)

DC: “Hello There!” (another bow)

Since there was no one else in line, there was time for a little bit of small talk between them. She also commented on his shirt, which made him extremely happy!

He was able to control himself enough to give her a hug without breaking her back, grabbing her hair or (Phew) picking her up!

IMG_2786

Needless to say, he was quite the happy guy when we left the venue on Friday night! He had such a great night all around there on Friday. It could not have been more perfect for him.

No crowds, no lines and River Song twice in one night. What could be better?

*****

There was one person that could and did make his night even more awesome….. More about that in another installment….

 

 

 

 

 

 

“Don’t you cry no more” #Supernatural

Autograph

Earlier this month we attended Rhode Island Comic-Con in Providence. It was an experience to say the least.

(I have a lot to say about our visit to the Rhode Island Comic-Con. Some good; some not so much. Everyone we met was very nice. Now I understand that they are supposed to be, but we all know that it isn’t always the case. There were a few people who were just extraordinarily wonderful to DC, so I want to be sure I mention all of them. Because I have so much to say about the entire event; Autism-related and not,  I have decided to split the story up into a few parts, by category rather than in order by the day) 

Let me first say that I am a huge fan of  Jim Beaver. I have been since his time on Deadwood.  Jim Beaver was one of the reasons I became a fan of Supernatural – yes, Sam was Dean on The Gilmore Girls so I may have been leaning in that direction anyway, but Jim Beaver gave me the push I needed.  DC is also very aware of the show, but other than Sam and Dean (who were not there), Jim Beaver (aka Bobby) is really the only other cast member that I knew for sure he would recognize. Why is DC familiar with Supernatural (or the “Don’t you cry no more” show) you ask?

Well DC loves music, but his musical choices do not usually come from what he hears on the radio unless it is a Disney song or a song from a movie he has seen. There are only a handful of songs that I can think of that he knows specifically from the radio – Carry On Wayward Son, just happens to be one of them. He zoned right in on the “Don’t you cry no more” line and it has been a favorite of his since.

For those of you who may not be fans of the show, Carry On Wayward Son opens the last episode of almost every season. DC picked up on that right away and as everything is related, he began watching the show.

We didn’t have a lot pre-scheduled for Friday night at Comic-Con. One op I had scheduled was Brent Spiner who had cancelled his appearance a few weeks earlier (“From this moment on, you are my mortal enemy!”) so I thought we would use Friday night to just go and get the lay of the land before Saturday when I was sure it would just be mobbed. We really did not expect to see many people or do very much that night, I just really wanted to figure out where everything and everybody was going to be. As it turned out, Friday was the best day of the event for us. It was not crowded at all and we got to do and see an awful lot.

As we were walking and looking around I noticed that there were no lines at many of the autograph tables. Then we came upon the “Don’t you cry no more” room. The first table belonged to none other than Jim Beaver (be still my heart) – he was not there but the tablecloth was not turned up covering the photos for sale as others were so I assumed that he would be right back. We did have a photo op scheduled with him on Saturday, but photo ops are usually very hurried, so I thought this would be a good opportunity for DC to see him and not feel so overwhelmed and rushed. When we went over to stand at his table and wait, a boy who looked to be about 12 came over to us and asked us if we were in line. DC, who seldom initiates a conversation or a greeting, took one look at this boy, who looked just like a younger version of his friend *Ron from Camp and excitedly in his high-pitched squeaky DC voice squealed  “Hello there! My name is DC Last Name. How are you? It is nice to meet you!”. He grabbed his hand and shook it so hard the boy’s entire body was shaking.  The boy was so very nice.  He was not taken aback by DC’s squealing  and excitement. The smile never left his face. He answered him, let him shake his hand again and told him his name (which unfortunately I do not remember). He then went back to stand with his mother just outside the room.

While we were standing there, I noticed Samantha Ferris at the next table. I asked DC if he wanted to go over there while we were waiting. He said No – he didn’t want to get out of line – even though we were the only ones in said line;  we were in line and in DC’s mind, that was all there was to it. I told him that we would not miss Jim if we went to the next table for a minute. Samantha is a pretty woman with long hair so I knew he wanted to go over there if not for anything else but the long hair  but…. he was in line. I finally convinced him that we could go and come back to Jim’s line afterward. He finally agreed.

Once there, he did get very excited. He told her his name and told her where he lived. Again, he was more conversational than usual. She was wonderful with him. She asked me questions but she also directed some questions to DC (which we know does not always happen). She asked how he became a fan and I explained the song connection. She sang a few bars of ‘Carry On’ for him – which just thrilled him to death. She asked him if the show ever frightened him. He said “No”. I began to explain to her how we talk about the fact that the show is only…. – DC piped in with – “Make-believe”. We talked about one of the loves of his life, Felicia Day (a recurring character) who he had the opportunity to meet a few years ago at NY Comic-Con. Samantha certainly added a new fan to her list that night!

 

DC and Samantha Ferris

DC and Samantha Ferris

 

As soon as we were finished there, DC immediately wanted to go “back to the line” (there was still no line) and Jim had not returned. Samantha told us he would be right back, so back to the “line” we went. DC started getting a little bit anxious while waiting but fortunately not too over the top. Someone ran by us and said “We’ll let him know someone is waiting” and before I had the chance to finish telling them that it was not necessary to rush him, they were gone.

Eventually when he did come out, he looked a bit out of sorts; not the “I don’t want to be here”  out of sorts – he looked as if something was wrong or something had happened. I felt bad and hoped that the powers that be did not make him come out just for us. He apologized and said there had been a slight emergency, which I absolutely believe due to the almost shaken look on his face. Now I felt even worse. Of course the first thing out of DC’s mouth was “I have been looking all everywhere for you”.  Then for some reason, probably because he was zoning out a bit at this point , he called him “Jake” instead of Jim or Bobby. He got his “DC picture” as he called it, so he was happy.

We turned to leave and there was the boy from earlier. DC again very excitedly , shook his hand, gave him a hug and told him he loved him (the asking permission before hugging anyone rule went completely out the window that weekend) – the boy, as before, went along with all of it thankfully.  What an extraordinary child! I wish I could send him many gifts!

During the course of the weekend we ventured back in to the Supernatural room many times.

On Saturday he met Curtis Armstrong (Metatron – aka “The worst angel ever”), Mitch Pileggi (Samuel)

DC and Curtis Armstrong

DC and Curtis Armstrong

 

Mitch Pileggi and DC

DC and Mitch Pileggi

and Alona Tal (Jo).  There was no explanation of character necessary for DC here – she is a pretty blonde and that was all he needed to know!

Dc and Alona Tal

Dc and Alona Tal

 

Supernatural room = Success!

Saturday was even more crowded than I expected.

We had three photo ops scheduled on Saturday. I purchased Jim Beaver way back in July and the others at later dates. The only information listed when purchasing a photo op on-line was the day; Friday, Saturday or Sunday.  When they did finally post the scheduled times I discovered that Jim Beaver and another were listed at the same time. I have to imagine that this happened to many other people as well.

On our way to the most unorganized photo op room I have ever seen, DC announced that he needed to “Flap his Wings”. It was just too crowded for him to flap where we were at the time but we did manage to find a corner almost under the bleachers for him to flap. I had him jump up and down a bit too while we had the space,  just to try to get it all out. Then we headed to the area where the photos were to be taken. Jim Beaver was scheduled for 12:45 – 1:15 and the other was scheduled for 12:45 – 1:30. We we decided to get Jim Beaver done first. Explaining the conflict to a volunteer in order to find out how early we could get in line for Jim Beaver, I took out my printed ticket with bar code that clearly stated: You must present this ticket with the Bar Code and your e-mail address to double check the time I had written on the ticket. She looked at it and told us we could probably get in line at about 12:30. We walked around a bit and revisited the “jump and flap” area for one final go. Then we went back to get in line at the time she had given us. I gave the same volunteer my ticket and she said “Oh no, we can’t take those paper tickets. You have to get in that line over there and trade them in for cards.”

What?!?

I followed the direction of her pointing finger to the mob scene, she referred to as a line, and questioned the ticketing process. This was supposed to be our ticket. “I don’t know, I’m just a volunteer, but don’t worry; he’s not here yet”. Firstly, I can not tell you how many times I heard “I don’t know, I am just a volunteer” that day and secondly, the issue was not whether he was there or not, it was about trying to get closer to the front due to our time conflict. We went over and got at the end of  the “card” line. While waiting and out of the blue, DC decided to hug the man dressed as Mr. Spock who was in front of us in the card line. Fortunately again, Spock had no problem with this random hug from a stranger. He explained that he has three children on the spectrum, so he was not fazed by it at all. We talked special needs programs for a bit until it was our turn to trade in our tickets. We finally made it out of that line with our “cards” but by the time we got back to the photo line the entire fenced in area was full and our place in line was outside of the roped in area. The volunteer saw us and yelled. “Don’t worry, he’s not in there yet” – again, not the point!

(I will revisit these paper tickets and photo op lines again in another post)

Doug, who unlike me can usually put up with just about anything, went ahead and spoke to a volunteer at the head of the line. Shortly thereafter a different volunteer came and moved us to the front of the line. I have written before that I do not generally look for accommodations for DC and I did not here. I always want him to try. I did purchase VIP tickets because of DC but this is not Comic-Con or the convention center making accommodations for my son, that is me paying more money to accommodate my child on my own. We did what we were supposed to do. We discovered the scheduling conflict. We planned ahead to get in line early, not earlier than anyone else would be allowed to, but as early as was allowed. We had the proper tickets, only to be told that we didn’t.  So for anyone that might be wondering or is waiting to pounce; we were not moved to the front due to DC’s autism – we were moved to the front due to the total unorganized way that this event was run (there is more, trust me).

After all of this, it was finally our turn to see Jim Beaver. DC did attend one photo op on Friday night (paper tickets were accepted then and there was no mention of a card ticket). Because of the Friday op, DC was expecting Jim Beaver to be standing on the same side of the room as the person was the night before. He wasn’t – he was on the side of the room closest to the curtain where we entered. DC walked into the room, and headed straight to the other side never noticing Jim Beaver standing right there. DC was looking around very confused so  I turned him around and brought him back to Jim, who was looking rather confused himself and probably wondering what was going on.

The photographer took one picture and asked if he would take off his glasses for another. DC, who does not like to part with his glasses immediately said “No”, but he did give in and give them to me. Now he was wearing his crabby face. As soon as they pointed that camera at him, DC being DC,  immediately put on his big photo smile. One of the assistants commented about just how quickly he was able to turn on that smile. Yes, sir. That’s my boy – always the ham. One can not point a camera at or around him and not get that smile.  As soon as the picture was taken DC’s only concern was getting his glasses back. He started walking out without even saying good-bye or thank you, he just wanted the glasses. He did remember his manners after being reminded. I do not usually have to remind him but I know that all that he was thinking at this point was getting out of there before anyone tried to take his glasses again.

DC and Jim Beaver

 

DC (always the actor – wiping his forehead) “Phew, I did it!” 

He had his picture, he had his autograph, both of which will be added to his wall of fame at home and he got his glasses back. Even with the all of the confusion and chaos (there was more), my boy really did a great job of it. We will put the Supernatural portion of our weekend in the win column!

****

Coming soon: The Walking Dead, Dr. Who and his most favorite experience of the Con…

(Our internet has been sporadic this entire week. This post was written partially on my phone and partially on my tablet – typing is difficult enough for me on either of these devices but editing is next to impossible  – my apologies for any and everything I may have missed or made worse by trying to edit on my phone)

 

 

 

 

 

October reruns – “Scary Stuff”

scary stuff

This week’s installment of my October/Halloween/Spooky/#TBT (or #FBF) theme – Not to worry, October will be over soon – is a story from 2 years ago about a vacation we took to Lake George quite a few years ago when DC was little. There was a debacle every step of the way but it all worked out well in the end…..

I may be confused about the name of a park and the train may have been at an entirely different park – my memory is not all that it used to be, but it all happened…..

Cinderella, Santa, Haunted Houses and other “Scary Stuff” (or: Vacation debacles that worked out somehow)

A few years back…. well, probably more than just a few, we took a trip to Lake George. I remember going there as a kid. I remember Story Town, which we discovered when we arrived was now just a small part of The Great Escape Amusement Park. I remembered the North Pole that was quite a drive from Lake George, but worth the trip. Specifically I remembered that in Story Town there was a Cinderella’s Pumpkin Carriage ride. My son was a Cinderella fanatic. He was obsessed, still is at 22. “Citronelle” was one of his very first words.

We arrived at the Great Escape and at the entrance was a sign listing all of the rides that were not operating that day. You guessed it…. Cinderella’s Carriage was on the list! Well, he got to SEE the carriage anyway and since there was also a castle (sort of, it was just a Prop) he got over the carriage ride a little more easily that I thought he would.

carriage

We had a good time at the park anyway.  I think I was more disappointed than DC was. I was just so looking forward to him being able to ride in the carriage. He would have been thrilled.

The next day we were heading to the North Pole. This would definitely make up for the missed carriage ride! I checked the local paper the day before and found an ad that stated it was open daily and listed the hours of operation.  It took quite a long time to get there – about an hour and a half, if I remember correctly. When we arrived at the park we found it “Closed for Construction” for the next few MONTHS!  Now I had to explain to him that the park was closed and we would not be seeing Santa today. That went well…………..(not!)

On the way back to Lake George, we happened upon another very small park called “The Magic Forest”. The park was small, cute but very run down and old. DC didn’t care.  He made me walk through a dusty, beat up “Princess House (cave)” 20 times or more. The Princess house cave was filled with dirty mannequins with peeling paint with cobwebs everywhere, but he LOVED it!

20 trips through the Princess House

We took a ride on the train that got stuck on the way up a hill and the employees had to get out and push, but he still loved it.

There was also a SANTA!  So the second day of our trip was saved!

Santa Saves the Day!

The next day we decided to walk though the town. I remembered a pretty cool wax museum which, surprisingly was still there. We also came upon a Haunted House. DC loves all things Halloween and loves Haunted Houses; always did, even when he was very young.

He wanted to go in. After only two minutes inside, I began to realize that this was a mistake. He was terrified. He put both arms around my waist and I had to keep both of my arms around his neck/head; and this was the way we walked through the rest of the house, with DC walking sideways facing my side, with both arms around me and both my arms around his neck. All the way thorough, all I could think was “What have I done? This child is terrified! I’ve scarred him for life”. I felt so bad that he was so frightened. I kept telling him that he was okay and it was all make-believe. We finally made it out and he seemed all right, but I still felt awful. It WAS really, really scary.

We continued down the street. I continued to ask him if he was okay and told him to remember that it was all just make believe. He seemed fine.

As we were walking DC stopped, pointed and said “Go In”. I looked over and he was pointing at another haunted house. I tried to explain to him that this was a “Scary House” just like the last one and I really didn’t think he wanted to go in. DC kept pointing and saying “Go in” and was now dragging me toward the line. All the while I was trying to explain that this is scary just like the last one. He got me to the line that I had no intention of getting in, and he proceeded to wrap both arms around my waist and had me put my arms around his neck/head and got “into position” to “Go in”.

Apparently, he did understand that this was another haunted house and as much as I thought he was terrified, he wasn’t – he loved it and he was “Going in!”

So, no…… Not scarred for life at all.

DC did get to ride in Cinderella’s Carriage a few years later at another park in New Hampshire.

He still loves Haunted Houses, but you would never know this as he’s going though them.

Everything is related – The Paris Edition

Back in May we went on a trip to Paris and London. There are so many things that DC can relate to in London without me having to come up with them for him, that I wasn’t worried. Before London though, there would be a 4 day stop in Paris.

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 will always try to come up with something to make the trip more interesting and exciting for him.

We were going to be staying in Disneyland Paris for the four days, one of those days would be spent in the city. I knew the day in the city would be very boring for him and I really could not come up with very much that he could relate to in Paris other than Madeline, so I went with that. I was later very surprised at the ‘relations’ he was able to come up with on his own.

So here we have the 5th installment in the “Everything is related” series – The Paris Edition:

Yes, this could possibly all be a ploy to make you look at my vacation pictures (be thankful, not all :), but every picture you see here is relatable to something for DC.

Again, we begin with Disney. There would be no problem here. We arrived at our hotel – New York, what could be better! DC’s very favorite city! This was a “two birds-one stone” kind of relation – Disney and New York City – together!

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There were of course; Princesses!

“Oh my God, it’s Cinderella!” – during this trip he came out with a few lines I had never heard him say before – “Oh my God”, being one of them.

What could be better than a princess? Four princesses, of course…..

….especially when they are willing to spin for you!

The Princess Room in Disneyland Paris is a little bit different from Disney World. In Disney World, you get in line to get into the room where you can meet 3 or 4 princesses one by one. In DLP, we had to make a reservation to see the princess. The reservation gets you in to see one princess (there are two inside, to keep the line moving). You are not told what princesses are in there and you do not know who you will see until it is your turn and you round the corner. The people managing the line are not allowed to tell you which princesses are inside and they change them every half hour. The line manager saw how excited DC was to see a princess and pulled me aside to ask me which one he wanted to see. I told her he would be happy with any princess, but she insisted. We had the choice of “Brave” and “Ariel”. Of course, I chose Ariel. I have spent too many hours standing in line at “Ariel’s Grotto” over the years to let an opportunity to see Ariel pass us by. I wish I got a picture of his face when he turned the corner and saw her!

After he had her dance with him and of course spin, he said: “Please say hello to Prince Eric for me” – another new line; correct grammar, correct pronoun.

Needless to say, Disneyland Paris was a big hit.

Now onto Paris.

DC really loves all of the Madeline books. I am sure he has them all. He especially loves the Madeline movie that encompasses many of the stories from the books into the one movie.  This was really all I had to go on. Knowing full well that sightseeing in Paris was not going to be very exciting for him, I really tried to push the Madeline angle before we arrived. We talked about the Eiffel Tower and the time that Madeline and Pepito became trapped at the top all by themselves.

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We went to the top. It took a while. It was so crowded. It was cold. There was a nice view. He was impressed, but only slightly.

Moving on……

Before we visited the tower, our first stop which happened to be right where the train in let us off was the Arc de Triomphe. Thinking that he would not be at all impressed with this because to him it was an arch, nothing more, I was surprised when he  recognized this arch – from Anastasia. I had forgotten all about that movie. I was kicking myself for not remembering it and looking into more Anastasia references before we left on our trip.

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Thinking I had reached the end of Paris ‘relatables’ for DC, we opted for a Seine River Cruise just to get in a few sights quickly without sending him completely over the edge of boredom. On our way down the river I realized that this was the same river that Madeline fell into and was rescued by a dog they later named “Genevieve” (yes, I have seen this movie more times than I’d care to admit).

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He was impressed for a minute or so.

Continuing down the river, the tour guide announced that we were coming up on Notre-Dame Cathedral. DC chimed in with:

“Chris-mar-a-dull”

What???

“Chris-mar-a-dull”

“Es-mer-eye-da”

“DC, I don’t know what you mean. Can you spell it for me?”

“Mom! Chris-mar-a-dull! Es-mer-eye-da!”

He was getting exasperated with me.

“HUNCHBACK!!”

Another reference that I completely missed – Quasimodo and Esmeralda – The Hunchback of Notre-Dame! (I did have to write those pronunciations down right then and there so I didn’t forget).

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Our decision to take this tour instead of sightseeing on foot turned out to be a good one. It started to pour! This did not upset DC as much as one would think for some reason, but it would have been the END of the day in Paris had we been out walking around.

Boat = Saving the remainder of the day.
Paris London 053 It was still raining when we got off of the boat at the Louvre. I did remember that one part of the Madeline movie took place inside the Louvre. I mentioned it to DC as we headed in that direction. We had no plans to go inside but it was close to a few restaurants and the metro.

While running through in the rain, DC pointed out the Louvre Pyramid.

“From Madeline!” – I have seen that movie many times but I do not recall ever seeing the Louvre Pyramid at any time during the scenes at the Louvre. He recognized it – so I’ll take it!

 

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It was a long day and with the rain, the Pyramid was our last sight for the day. We stopped for dinner and headed back to Disneyland.

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I definitely dropped the ball relating Paris to DC’s world. I am happy and a little bit impressed that he was able to pick it up and run with it, this time around.

 

Everything is Related – Dr. Who

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.

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Paddington Store – Paddington Station

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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.

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

Don't Blink

Don’t Blink

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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

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).

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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)

TASwatermark

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

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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)

plane 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