“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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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 – Mary Poppins to New York City

I threatened in an earlier post – a few of them as a matter of fact – I would someday write about how, in DC’s world, everything is somehow related to Disney or some of the other movies he enjoyed as a child and still enjoys now as an adult. Originally I thought this would just be a fun post to write, but the more I thought about it, the more I realized:

Everything being related,  has, many times been used as a learning tool.

– Everything being related, has helped him to move on to a more diverse realm of TV shows and movies (while still loving all of the originals he has loved since he was a baby). When attending an ARC movie activity or even just a movie night with friends, for instance, a Disney or animated movie may not be the choice of the others attending. Relating one movie or actor to another has helped him to be more open to watching something that may not be Disney-based. This was not always the case, but now he can go and enjoy a movie with his friends or at an ARC activity without issue. I can almost always find a “sixth degree of separation” from something he loves to something new ; at times it can be a stretch, but I can usually find it if he doesn’t find it for himself. These days, because he now knows that there is always the chance that something or someone just might be related to his favorites, and now that he realizes that his favorites are in many other movies than the ones he watches over and over again, he is much more willing to watch any movie with his friends, without the preparation beforehand. He has also discovered new favorite actors and movies that had not previously been in his circle of favorites.

Everything being related, oftentimes just explains his love for a particular city, game, song or some of the many other things that he does or says. – This post is about just that……

So here is the first in a series of “Everything is Related” posts:

It all started with Disney…. Those little half hour Disney Sing-A-Long VHS tapes. You know the ones…
“Come right in, sing a long, with your favorite Disney song……”
They contained many songs from many Disney movies – old and new.

At about a year old he moved on to the full length movies.

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Mary Poppins and Bert 2003

Mary Poppins –

Mary Poppins songs and clips were  included in many of his sing-a-longs videos.

Mary Poppins= Julie Andrews

His love for Julie Andrews led him, through the years  to “The Sound of Music”, “Eloise at the Plaza”, “Eloise at Christmastime”, “Shrek 2 and 3” (although he did develop a love for Shrek all on his own – Julie Andrews just added to it), “The Princess Dairies” (all)  and “Tooth Fairy”.

We were at a friend’s house for movie night one evening. The movie they chose to watch was  “Tooth Fairy”. His friends were excited to see this movie because of “The Rock”. DC on the other hand, was excited because it also stars  Julie Andrews . He did not know of or care about “The Rock”.

This soon changed when he discovered that “The Rock” was in “Race to Witch Mountain” – he has seen and owns all of the old original versions of the “Witch Mountain” movies and now “The Rock” and “Race to Witch Mountain” has been added to his collection.

– Still on the subject of Mary Poppins, we have – Dick Van Dyke

Dick Van Dyke led him to “Chitty Chitty, Bang, Bang” , Night at the Museum (s) , “Bye, Bye, Birdie” and most recently, “Alexander and the Terrible, Horrible, No Good, Very Bad Day“.

– “Full House”

Just how is this related. you ask? DC loves Full House. He has every single season on DVD. He first came across the show on TV one morning – the episode airing just happened to have Annette ‘Fun-chew-lo’ (Dc-speak – ‘Funicello’) guest starring. Annette ‘Fun-chew-lo’ just happens to star in another one of DC’s favorite Disney movies  – “Babes in Toyland”, (can we say “worst movie ever”?)  also starring Ray Bolger from the Wizard of OZ (we will get to OZ another time).

He was a Full House fan from that point on. – But how is this related to Mary Poppins?

A few years ago we were watching the Macy’s Thanksgiving Day parade. We turned it on just in time to see  a performance from the cast of the new “Bye, Bye, Birdie” revival – and who was playing Dick Van Dyke’s, ‘Albert’ in that revival? None other than John Stamos (Uncle Jessie)! Well….. of course we HAD to go – we were due for a day trip to New York anyway.

I will never forget DC sitting in the audience pounding his leg with his fist mimicking the “Jes-sie, Jes-sie, Jes-sie!” chant.  I did everything I could to get him to stop but he was “in the zone” and determined to continue. I could see,  he was finding it very hard to control himself.  I really thought I would have to take him out of the theater. He did finally get himself together and enjoyed the show quietly (as quietly as he could manage). – So “Full House” is related by both Disney as a whole and Mary Poppins.

Let’s not forget, Ann Margaret also from “Bye, Bye, Birdie” – who also plays ‘Cinderella’ in the 10th Kingdom. The 10th Kingdom starts out and ends in New York City, with the City being the 10th Kingdom.

10th kingdom

Ed Wynn (Uncle Albert in Mary Poppins) is also the Toy Maker in “Babes in Toyland” (again, I say…… worst movie EVER – who’s with me?) and the voice of the Mad Hatter in Alice in Wonderland. Not only does DC know all of these actors and their names, he can also tell you who was “the voice of” almost any Disney character.

His love of New York City stems directly from Eloise at the Plaza, therefore we must visit the Plaza just about every time we go.

 

 

Our trips to the Plaza now include a visit to the “Eloise Store” where items are ‘Rah-ther’ expensive. Of course now NY means so much more to him. It means Broadway and many shows, including “Mary Poppins”. It means ‘Set-tral Park’, Toys R’Us, Times Square and we can’t forget “West Side Story”.

He is without a doubt, my Broadway Baby, and it is all due to his love of Disney and more specifically,  “Mary Poppins”

 

 

“For Sami, Love Daddy” – Repost from September 2013

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.

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…….

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

Re-Blog from Wendy Jane’s Soul Shake – Never Will Forget You….

Wendy is a friend and fellow blogger from my hometown. Although neither of us lives there anymore, it is our roots, it is still “home”.

Wendy was kind enough to re-post a piece I wrote a few weeks back “Never Will Forget You – A Tribute to Avonte Oquendo”.

Wendy does not write about autism, her followers are very likely not all Autism Moms, Dads or families as are many of mine are.  To share her tagline:

One white woman’s curious obsession with race.

Follow my quest to connect across color lines.

The piece she has posted today does include an additional paragraph for those that may not be aware of the story.

(Wendy also does not have a re-blog button on her blog, so I have to re-blog it this way 🙂

After you read Wendy’s re-post, please take some time to read some of her other posts. As I said, she does not write about autism, but we really are allowed to read non-Autism related stories and blogs once in a while, aren’t we? I really think you will enjoy her blogs. I always do!

So thank you very much Wendy and now I am under immense pressure to live up to the introduction you wrote for me………..

Re-Posting Tribute to Avonte Oquendo, by Vickie – Via Wendy Jane’s Soul Shake

A friend, Vickie, is a stupendous supporter of WJSS, and by that I mean she retweets every single one of my blog posts, and actually reads them, and comments, and I truly appreciate her for doing so.  Vickie, from my hometown, has a fantastic blog of her own, Taking It A Step At A Time, where she writes about her adventures, and challenges of being a mom to her 23 year-old son, D.C. who has autism.

On her blog, Vickie shares personal stories of what it’s like living day-to-day with a child with autism, and while there are many challenges that parents with children without autism never have to think about, what shines through Vickie’s stories, are the sheer joy D.C. experiences each day, much of which is driven by Vickie’s love and devotion to him.

Please Continue Reading

Never Will Forget You – Tribute to Avonte Oquendo

Avonte Never Forget

Recently I had the immense privilege and honor to listen to the beautiful and heartbreaking song written in memory of Avonte Oquendo, by his uncle, Rocopera.  Even over the telephone, it was apparent that the love he has for this child is immeasurable. The pain of this loss will never be healed.

“This song comes from a broken heart”

His heart IS broken – all of our hearts are broken. What happened to this beautiful child should never have happened. What happened is every parents’ nightmare. Those of us that have children with special needs know this fear all too well. We know that simple things like just putting your child on a school bus and sending him off to school can be terrifying. They are not with us, we are not in control, we are not there to protect and take care of them. As the mother of an adult child with autism, I know this fear. I live this fear. – We all live this fear.

Avonte’s disappearance drove that fear home for all of us. Avonte’s story is not something that happened to one boy or one family in New York – it happened to all of us in the Autism Community. A  tragedy like this can happen anywhere – and it does happen everywhere.

“Never Will Forget You – A Tribute to Avonte Oquendo” was written not only as a memorial to the nephew he loved so deeply, but as a vehicle to raise awareness about Autism in general. Rocopera has spent the better part of his adult life advocating for/with the Autism community. His own son is on the Autism Spectrum.

In an effort to work through his pain, Rocopera has been spending much of his time writing and producing “Never Forget You”. He is also tirelessly working on and producing a documentary chronicling the events of that horrific 3 1/2 months. A memorial at the site is in the planning stages, pending the approval of Mayor De Blasio.  Rockopera needs to raise awareness, he needs to know that Avonte will never be forgotten.

In an earlier post, I wrote:

As it has been said, Avonte, brought an entire city together. His disappearance brought an often, very separated Autism community together. It cast a spotlight on the problem of wandering/elopement of Autistic children and adults.  He has raised awareness to the issues that many families face in trying to keep their children safe. Our children should be safe, at all costs…………. Avonte should have been safe in school.

– Avonte Oquendo should be memorialized, in any and every way possible.

“Never Will Forget You – A Tribute to Avonte Oquendo” will be released on iTunes 5 days before the October 4th anniversary of  his disappearance, with all of the proceeds to be donated to credible Autism charities.

We will be posting more information about all of these projects in the weeks to come, but in the meantime, please help us spread the word about the release of this beautifully written and performed, tribute to Avonte.

I promise you that once you hear “Never Will Forget You”, you will never forget this haunting and so very moving song……………

……………………..as we will never forget Avonte.

9/12/14 –

Many Thanks to:

One Loco Mommy

Wendy Jane’s Soul Shake

Autism and Christianity

Soaring with Autism

For re-blogging and re-posting –

Related Posts:

Guest Post: Raising Awareness in the Face of Tragedy – #NeverWillForgetYou – By Gizelle Tolbert

Guest Post: Spreading Awareness; Spreading the Word; #NeverWillForgetYou – by Gizelle Tolbert

Re-Posting Tribute to Avonte Oquendo, by Vickie

The CALL TO ACTION – A Memorial for Avonte

ATTENTION NYC PARENTS : Avonte’s Law – Rally JUNE 12, 2014!

The CALL TO ACTION – A Memorial for Avonte

Call To Action

Call To Action

– Co-written with Gizelle Tolbert

It has been close to 10 months since Avonte Oquendo left his school, unsupervised, past security guards, through an unlocked door. It has been almost 7 months since the devastating conclusion to the search for Avonte.

I do not live in New York, I did not know this beautiful child. I do not know his family, but this story hit he straight in the heart and I did anything I could do from where I live to help in the search. I remember the fear, and the worry, wishing I could do more than just donating flyers, postage or posting and reposting his information –  and finally, I remember the heartbreaking, overwhelming and shocking feeling when he was found. All of it……… too close to home.

When Gizelle contacted me a few days ago asking if I would help in the effort to build a memorial for Avonte, all of those feelings came right back up to the surface.

As it has been said, Avonte, brought an entire city together. His disappearance brought an often, very separated Autism community together. It cast a spotlight on the problem of wandering/elopement of Autistic children and adults.  He has raised awareness to the issues that many families face in trying to keep their children safe. Our children should be safe, at all costs…………. Avonte should have been safe in school.

– Avonte Oquendo should be memorialized, in any and every way possible.

A Call to Action
Please read below and lend your support to Avonte’s Memorial

– written by Gizelle Tolbert

– “The one year anniversary of Avonte’s disappearance, October 4, 2014,  is less than three months away. #AvontesLaw may finally pass this week, but Avonte’s Memorial at Gantry Park  has stalled.  We need to come together to be sure that both of these items are approved.


That being said, we ask that you to share, post, call and write (have your friends and family do the same) the necessary people who can help make this happen.

Please e-mail, mail, tweet or phone your thoughts to every major network, radio station, newspaper and magazine.

Ultimately, Mayor Bill de Blasio will be the person to approve or not approve, therefore, let us post to the other media entities but more-so to the mayor’s office. I have provided the contact information for his office, Twitter and FB Account.

I would like to thank everyone in advance!

It has also been rumored that a song will be released on the anniversary day as well”.
Contact:
Mayor Bill de Blasio
City Hall
New York, NY 10007 Phone: (212) 788-3000

On-Line Contact Form: http://www.nyc.gov/html/static/pages/officeofthemayor/contact.shtml

Twitter: @billdeblasio
FB: https://www.facebook.com/mayordeblasio

New York City Media Contact List  http://www.nytix.com/Links/TV/articles/newsmediacontacts.html


Additional Contact and e-mail addresses missing from the above list:
CBS News – Chris Ender – VP –  cender@cbs.com
60 Minutes – Kevin Tedesco – Director kev@cbsnews.com
NBC – http://www.NBC.com (on-line form)

 

If you would like to contact Gizelle, you can contact her on Twitter @candi_kizzez  or e-mail takeanotherstep@yahoo.com

 

Please let us all join together once more in Avonte’s name and memory…………

“Penny” is in the house! NY Comic-Con

 

2013 comiccon

This year we decided to forego our annual October/Halloween weekend in Salem to attend NY Comic-con.

October… Costumes… it qualifies.

This was our very first “Con” and me, in my infinite wisdom, decided not to start small. Nope…. New York City…. Huge…. Mega Crowds…. but I have to say that it really went well.

Even though we would be in the city for the entire weekend (New York City is DC’s favorite place in the world) I opted for just the one-day/Saturday ticket. I knew that being in New York and not walking around the city and the crowds that I was anticipating would not make for a very happy guy. If this was a bust with DC at least there would be the bright spot of spending the rest of the weekend visiting his favorite places – Hard Rock, Central Park, Toys R Us, The Eloise Store in the Plaza and the Hershey Store.

Since most of our day was posted on my Facebook page, I am going to take the easy way out and just re-post those posts – they say it all anyway….

Once we made it through the crowd outside (pictured above) we headed to the vendor floor – the autograph/photo-op room was not open yet. DC wanted to see Felicia Day and only Felicia Day – but first; the vendor room.

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 Just as we were making our way out of the vendor room because of the crowds, we happened upon Mike Tee-Vee. The real Mike Tee-Vee. Talk about a find! DC was so happy! If we had walked down a different aisle we would have missed him. Fortunately it was early and not too many people had happened upon him yet so he was able to take his time with DC.

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*****

Waiting in line for Felicia Day.  He had waited almost an hour and just as I thought he couldn’t take it anymore, she came out. She came out 20 minutes BEFORE her scheduled time. It was still another half hour before we made it to the front of the line but just seeing her up there kept him focused. Can’t love her more for doing that!

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*****

Some illegal photos Doug took while we were waiting.. until he was screamed at by the staff, that is.

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****

DC with Felicia Day… She was wonderful. She held his hands and asked him which Dr. Horrible song was his favorite. (He was going to wear his Dr. Horrible costume, but changed his mind at the last-minute which was probably for the best)

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DC loves “Penny” from Dr. Horrible but he also knows her from “Erica” (Eureka). He was thrilled. She let us take a picture even though we were not supposed to (as much as he loves her, I just could not make him stand in another line for a photo-op with her)

*****

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I picked the only panel I thought he would enjoy – the Once Upon a Time, panel. Even with the appearance of surprise guest “Emma” (Jennifer Morrison), DC fell asleep about 10 minutes into it – I tried….

There is a Walking Dead panel later today that I am dying to go to, but … yeah… that’s not going to happen.

*****

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Lunch: Pretzels on the floor. The pretzel line was the only manageable line for food we could find. If he was not looking forward to dinner in the city later, THIS would not have gone over well at all. – *Note to self

*****

I told myself all day that I would not spend the money they are asking for William Shatner’s autograph. Well, I caved. How could I attend my first Comic-Con with William Shatner in attendance and skip him? DC does know him of course because I am his mother. I was nervous but William Shatner was nice to him. We were not allowed to take photos (and no, I was NOT going to pay for a photo-op), so this was the best we could do. We completely forgot to tell him that DC shares his birthday!

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Ready for dinner in the city…

(update 2/2016: This was a post that I made private some time ago until I had the opportunity to edit a few of the photos of DC – I was reminded of it due to a conversation I had yesterday – My apologies if you have received an e-mail notification for a new post – it’s old)