“To Boldly Go……”

To Bodly Go….

I confess…

I admit it…

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

The first “sign” that DC learned when he was very young (for those of you that may not know, DC was non-verbal until he was 7 years old) was the “Live Long and Prosper” sign. If and when he saw a picture of Mr. Spock or heard him mentioned, he used that sign.

Today, he is verbal but will still, at times use his signs in conjunction with his speech – that “Mr. Spock” sign has come to represent Star Trek in general for him and he still uses it.

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

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

Last October, we finally made it to New York Comic-Con. I was nervous – it was so crowded, but the hope of meeting Felicia Day, kept DC pretty much on track. He also got to meet William Shatner and the Real Mike Tee Vee. All were very nice to him and he was very, very happy.

A few years back a friend of mine told me about “Shore Leave“,an event held in Baltimore every August. It is smaller than ComicCon and the original plan was to try this first, see how DC managed it and then move on to the bigger ‘Con’ in NY at a later date. Somehow we ended up doing it in reverse. But, since DC did so well at ComicCon we decided Shore Leave would be a breeze.

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

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

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

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

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

Reading the Shore Leave schedule, I noticed that there was a “Rock, Paper, Scissors, Lizard, Spock” tournament at 6pm. DC loves the Big Bang Theory and thinks “Rock, Paper, Scissors, Lizard, Spock” is the most hysterical thing he’s ever heard. He does not really know what it means, the words are just so funny to him. I thought if we attended the tournament, he would see exactly what it is…. a game. I didn’t think he would actually understand the game, but at the very least he might understand what they are talking about in the show.

: Rock, Paper, Scissors, Lizard, Spock

When we first walked in, the moderator was explaining the rules, reading from a very confusing T-shirt, complete with diagrams and pictures of the signs. One of the participants piped up “That boy has the directions right on his shirt” – I don’t think the moderator appreciated this, he looked up, sighed and went right back to explaining with HIS T-shirt. DC got a kick out of the tournament and asked me more than once “to play“. I knew he really didn’t understand it and thought about asking the moderator if someone could play a quick game with him when they were finished, but during the practice rounds I did with him, I could see he really didn’t get it. He just threw whatever I threw. I told him he could play against me. We played at the table while the tournament was in progress. This seemed to make him happy enough.

After the tournament we were walking down one of the hallways and I noticed the TARDIS in the corner and pointed it out to DC. He recognized it immediately yelling, “Dr Who” We went to check it out. It was a photo booth. I don’t know what sort of directions the man gave DC when he was in the booth, but I could see from the computer screen outside that every time “Look at the Camera” came up on the screen, DC did something with his hands and his face, when the prompt was not there he sat looking at the screen normally. I’m sure he was following his understanding of the directions the man gave him.

He also happened to find a pair of TARDIS slippers. There were only two pair on the table, but thankfully one pair was his size. He was pretty darn happy to get them. He has a “thing” about slippers lately, I don’t know why. He has a few pair of slippers at home but never wanted to wear them, all of a sudden he loves slippers and wears them all of the time. The Tardis slippers were a nice find for him.

: K9

: Do Not BLINK

Pictures taken, slippers purchased, now DC was beginning to get antsy. He had enough for one night and as you may or may not know, DC’s favorite thing when on vacation – besides bookstores and restaurants, that is – is the hotel room. He really just LOVES hotel rooms, so he was anxious to get back. We arrived back at the hotel at a little after 9. Jokingly, I said to Doug, “I hope they didn’t give our room to someone else”

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

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

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

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

On Saturday morning, we decided to take in the “Fairy Tale Panel” back at Shore Leave. DC must have been much more exhausted from Friday than I realized as he fell asleep and slept (in the front row, mind you) throughout the entire hour. 200lbs of dead weight hanging on me the entire time – just what you want when you are running a panel, someone fast asleep in the front row! He did also sleep through the Once Upon a Time panel at ComicCon, but at least it was a dark room and we were nowhere close to the front. I suppose it could have been worse, he could have been snoring.
Saturday was much more crowded than Friday night had been. We tried to stay away from the most crowded areas, but refreshed from his “nap”, DC made a bee-line to the Buffy doll that I knew he wanted but refused to buy the day before – I think he was just too overwhelmed on Friday night to know what he wanted until he found the Tardis slippers, that is..
We had purchased tickets for 3 photo ops the night before, but we still had a little time to kill, so we went to the autograph tables, which surprisingly, were not very crowded.

Our first stop was Robert Picardo. I explained to DC that he was once on a Star Trek (Voyager). His sign read “I’m the Doctor”. This confused DC, he knew it wasn’t David Tennant, the only Dr. he is aware of, but the sign did say “I am the Dr.” so he called him Dr. Who.

– just following directions, Doc…….

We moved on to Michael Welch. He was exceptionally nice to DC – really, they all were.

We then headed to THE most confusing Photo Op line ever. We had tickets for 3 Photo Ops which meant we had to get in line 3 times. The lines did move quickly, but it was all very confusing trying to figure out where we were supposed to be.

The woman at the entrance to the photo room just Ooo’d and Ahh’d over DC every time we arrived for a photo. “Oh! Look at him, he is so excited!” – he was, plus there is no one that loves to have their picture taken more than DC does.

His first photo was with Robert Picardo, “Dr. Who” from a half hour earlier. He didn’t call him Dr. Who this time even though he was wearing a Dr. Who shirt (he didn’t have his “I’m the Doctor” sign with him and it wasn’t David Tennant on his shirt).

Next up was Eve Myles. She was a few minutes late getting to the photo room and when I saw her coming down the hallway, I got a little bit anxious. Her hair was much longer than it is on TV and in photos. DC LOVES long hair, LOVES it! Before we were faced with another ‘Snow White Incident’ I launched into “the rules”.
“DC, you can not touch her hair”
“Okay Mom”
“DC what is the rule? – Tell me”
“Don’t touch your hair” (the usual pronoun confusion,but I knew he understood)
and then….. just for good measure…
“DC, what is the other rule?”
“Don’t pick up the people”
and he didn’t……….

Next and thankfully, last as DC was tired of getting in and out of lines…. Silas Weir Mitchell. I love Grimm. DC has seen it a few times, but I don’t think he really knew who he was. It didn’t faze him because, someone was taking HIS picture and isn’t that really all that matters?

At this point, DC was starting to get edgy. Our last stop was the Eve Myles autograph table. We had a good 1/2 hour wait until she was finished with the Q&A she was leading. We slipped inside to listen and more importantly to move DC out of the hallway.

He didn’t want to sit down.

He didn’t want to stand where we were standing.

He didn’t want to stand in the next place we moved to.

We moved close to the door and he seemed okay with that.

But then a staff person came over and told us we couldn’t stand there so we moved back to the hallway.

We decided to just wait at the table.

There was a wonderful lady sitting at the table who just happened to be a Special Ed teacher (we seem to run into Special Ed teachers everywhere we go, she was the second on this trip), she let DC pick out the photo he wanted autographed early. He picked a photo of Ms. Myles from a Merlin episode. We chatted a bit, she chatted with DC a bit as well. She told him he was doing a good job waiting – he loves compliments, who doesn’t.

The Dalek from the Tardis photo booth was now roaming the hallway “EXTERMINATE!”, so that helped to keep him occupied until Ms. Myles was finished with her Q&A. When she arrived at the table, the woman whispered something to her and then introduced her to DC. She told her that he was waiting a long time for her. He was first in line for her autograph, she was lovely to him. He was thrilled…..

but he was also “done”.

I didn’t try to push him to do any more. We arrived that morning at 9 and it was now after 3. That was a long stretch for him, even with the nap. He had a few sketchy moments throughout the day, but I really I think, overall he did a fantastic job!

In the words of DC, “We all had a wonderful time”

except for this guy…………..

this guy….

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

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

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

#LLAP

Baltimore, Over the Rainbow and Back – Part 3

Posted by TakingItAStepAtATime

: Part 3

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

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

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

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

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

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

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

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

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

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

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

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

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

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

: Fish

: Fish and

: more fish

: Searching the bottom

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Home – just a “little bit” of snow!

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

We had to shovel our way in………

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

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

The CALL TO ACTION – A Memorial for Avonte

Posted by TakingItAStepAtATime

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.

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…………

The Bookstore Revisited…….

Posted by TakingItAStepAtATime

We love Salem, MA. It is one of the places, along with New York City, NY and Mystic CT, that we visit any time we have the chance. Salem has been our Halloween/October destination for many, many years. We also try to visit during the year when it is not as crowded. So we are in Salem a couple- three times a year, at the least.

DC has a “favorite book store” everywhere we visit, but the Derby Square Book Store is his all time favorite anywhere. We last visited Salem in April on Easter weekend. We were spending the weekend in Boston and decided to take a quick trip to Salem on Saturday. When we arrived at DC’s beloved bookstore, we were horrified to find that it was closed! (see: Book Store Blues)

Fortunately we found that it would not be closed forever. The new owner was outside with a table of books to sell, but no one was allowed inside because they were packing up all of the old stock. She let DC inside, thankfully and saved the day!

Earlier this month, I had the week off, DC also had the week off from his job/program so that he could attend camp. I wanted to take a trip to Salem but we didn’t have a lot of options even though we were both off because I didn’t want him to miss a day of camp. We opted to go on Sunday.

Before I told DC that we would be visiting Salem, I had to be sure that this store had re-opened. I started searching twitter, instagram and the web for information of the re-opening. I was able to out that the store had re-opened, under the name of “Wicked Good Books” , but did not know if it was open on Sundays. I didn’t know if we should take the chance. I didn’t know what he would do if we went there a second time to find it closed. But I also did not know when we would have the next opportunity to visit.

I talked to DC and explained we may be going to Salem on Sunday. The first thing he said was “Bookstore”. I told him that yes, his book store was open again, but I wasn’t sure if it was open on Sunday.

Me: “Do you understand, DC? It might not be open on Sunday. But don’t worry, if it is not open we will go back another time.”

DC: “Yes, I understand”

30 seconds go by……..

DC: “Bookstore?”

Me: “Yes, Bud, if the bookstore is open, we will go to the bookstore, but Mom wasn’t able to find out if it is open on Sundays. If it is not open, we will find another bookstore on Sunday and we will go back to Salem another time when your store is open.”

DC: “Okay, Mom”

and another 30 seconds pass……

DC: “Bookstore?”

This went on for a while. until I thought that maybe he finally understood, but I wouldn’t really be sure until we arrived there……..

My next concern was that he was going to be upset when he saw the store was “different” (thankfully for me – now I didn’t have to worry that books were going to come toppling down on him). I began explaining this to him back in April, when we knew it was changing owners, and more-so as soon as we decided to go to Salem in July. I got the standard “Okay, Mom. I understand” reply from DC, and again, I couldn’t really know if he really did understand, but I was really hoping that he did.

We arrived in Salem and after the initial panicked run for the restroom, which only brought him closer to the bookstore (that may have been his plan all along), we headed down the street to the store and thankfully, it was open!

The funny thing was, after all of the explaining and worries, it did not seem to faze him in the least that everything was so different and that books or entire shelves were not going to fall if he took something off of the shelf the wrong way. He headed directly to the back corner where all of the children’s books were located in the old store, which turned out to be just where they were set up now and his “hunt” began.

He found 3 or 4 books that he wanted and we went to the register to pay. The owner recognized him immediately from our April visit and she commented that she was also worried that it would upset him to find so many changes. I told her that I had been explaining this to him since we left in April but I still wasn’t sure how he would react when he actually got here.

She asked him if he liked the store and he answered with an emphatic “Yes!”

I asked him if this was still his favorite book store and again he answered, loudly “Yes!”

The other girl running the register told him she liked his “Rock, Paper, Scissors, Lizard, Spock” shirt so he was in his glory all around (my boy is a big ham).

*Bookstore revisited – Check
*Found Books he wanted – Check
*Still his favorite store – Check
*We could relax & enjoy the rest of our visit – Check

If you are ever in Salem, be sure to visit “Wicked Good Books” – It is “DC-Recommended and Approved” ….

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A year later……..I know we can’t have it both ways, but….

Posted by TakingItAStepAtATime

While driving DC and his friend to their first day of camp this summer; hearing her giggle in the back seat and watching DC “happy stim” in the front seat – both so excited to get to camp to see their “Camp Friends” again, I thought about the post I wrote last summer on their first day.

A year later, I feel exactly the same way. They were so excited to go and I felt sad that they can no longer spend their summer at camp as they used to because they are adults, out of the school system and in a work program. They have to use their vacation time to be able to attend camp for a couple of weeks every summer.

DC has attended this camp since he was 5. At first only a couple of days a week, with support because he was non-verbal at the time, and then when I noticed that he was much more responsive and receptive on the days he attended this camp than the days he attended the “main-stream” camp, I decided to let him attend 5 days a week. Because DC would rather just sit and read a book than get involved, and this, of course is easier for the main- stream staff, that was what they let him do. My reason for sending him to camp in the first place was to keep him occupied and involved, so he did not regress during the summer months. The main-stream camps were not providing enough support to keep him from regressing. They weren’t making an attempt to get him involved with any of the activities, whereas this camp did.

My intention today was to write a new post about the first day of camp, but after re-reading last years post I discovered that there was nothing different about the feelings I had last year and the feelings I have right now. I thought I would be used to “adulthood” at this point.

It turns out that I am not……

From July 2013 – We can’t have it both ways…. but it’s still a little bit sad.

Today was my son’s first day attending day camp this summer. He has attended this camp since he was 5 – he’s 22 now.

Every summer he was able to attended camp all summer long, even staying after until 8pm for a special after camp program they hold twice a week. He loves it there.

Now that he’s 22 and aged out of the school system, he is in a work program, year round. When I started looking at programs for him I was shocked that they didn’t get the summers off!

Of course they don’t, they are adults and have to do their job every day, just like we do. But it was a rude awakening for me at the time.

Everything changes after “school-age”. He’s aged out of Challengers baseball. Seventeen years of baseball….over. No more February vacations, Spring Vacations or Summer vacations. He’s “working” now, with 3 weeks’ vacation, holidays and some sick days, just like everyone else. This was probably the hardest transition for me so far. I have to think to call “work”, “work” and not “school”. It takes a minute, when I panic that I haven’t set up anything for February vacation – to realize that there is no February vacation any more. Becoming an Adult may actually be harder on me that it is on him. It’s just such a huge change.

Yes, I know we are moving into adulthood and working toward independence; as much independence as his capabilities will allow. Yes, I know this was the goal all along, but on the other hand, he’s still so much a child. He’s still watching “Barney” (22 years of Barney! That’s a Support Group I need to form, anybody?), he’s still reading and watching Disney and is not embarrassed to hug and kiss his Mom. On some level, for me, as much as I always work and hope for more progress, I love it, it’s nice.

This should be a happy time, and of course it is. He is an adult. He is in a program that he loves, but when summer comes around and it’s time for Camp to start, it’s a little bit sad that he doesn’t get to spend a fun filled, happy-go-lucky summer at camp as he used to. He only gets his two weeks.

Because…..he’s an adult now………

“The Alarm went off and Mom has lost her mind”

Posted by TakingItAStepAtATime

Have you ever come across a meme online that has you convinced that the creator must be following you, or spying on you – because obviously this meme was created just for you?

Today my friend, Audrey shared this meme on Facebook, I don’t know where it originated but I laughed out loud because this just happened to me.

Wait….Wait…. What Day is it?

First, a few back story notes that I have to make before telling the story:

As a rule, I don’t get very much sleep on Sunday nights. No matter what I do, the utter excitement of having to go to work the next day keeps me awake… This also happens to a few co-workers – so it’s become somewhat of a “thing” on Monday morning to discuss who had the least amount of sleep the night before. Usually *Cracker wins the contest, but I believe this week, I was the winner. Unfortunately, there is no prize for winning.

By the time I got home from work Monday evening, I felt like I could fall asleep standing up. I do have to add that historically I am not a “good sleeper”, but once I am out, I AM OUT!

Another thing I have to mention is that DC has refused to sleep in his room at night since Christmas Eve. Once he gets nervous about a storm or a cloud because that could mean a storm or if the power should go out for a minute, or a truck going by because it sounds like thunder….. (you get the picture)….that’s it. He’s on the couch! I just can’t wait for the 4th of July fireworks that usually start going off about now. This also means I must sleep on the couch. We have a sectional so he sleeps on the chaise lounge end and I sleep on the other side.

Coincidently I made this meme just a few days ago due to a very quick power outage.

So back to Monday.

By 6:00 pm I knew if I didn’t take a quick nap I would never make it until DC went to bed. I told DC I was, to use his words, “going to get some rest”. He was sitting on the couch watching YouTube videos on his phone. I laid down in my spot. I even set the alarm because I didn’t want to sleep too long. In the meantime, DC went upstairs to put his pajamas on and gather his pillow, sheet and blankets. When he puts his pajamas on that early it is his way of telling me that he doesn’t want to go anywhere else that day. He’s done. I was done too, so he did not have to worry about that. I must have been really over the top tired and really ‘out like a light’, as they say, because I really don’t even remember if it was the alarm that woke me up or not….

but…..

I woke up, looked at the clock – it was 8:00! Panicked, I jumped up, and yelled “Oh my God!”. Of course DC has no idea why I’m yelling “Oh My God!”, so he’s just looking at me, confused.

Now this was not your typical “wake up on a Saturday thinking you are late for work and you figure it out within a few seconds” kind of panic. This was a full on “I can’t figure out what is going on” kind of panic.

I ran to the door thinking that DC’s transportation to work would for some reason still be sitting in the driveway a half hour after they usually arrive. The car wasn’t there. I still couldn’t figure out what was going on. If they arrived to pick him up and no one came out, they would first beep the horn and then have dispatch call on the phone. How did I not hear the phone? How did I not hear the horn beep? Why didn’t DC wake me up? He hates the sound of my alarm, he hates the sound of the phone. Why wasn’t there a message or a missed call showing on the house phone or my cell?
I turned from the door and yelled to DC – who was right where he would have been in the morning, “What day is it?” – DC answered “Monday”. I yelled back “No! It’s Tuesday!” (good going, let’s just totally confuse him).

If there was ever a look that said “This woman has lost her mind”, DC had it! He would never have the words to say that or really understand what loosing one’s mind means, but he had that look.
I went back to the door to stare at the empty driveway. I looked at the clock again, thinking I had just misread it being half asleep and panicked, but no, it still said 8:00. DC is still looking at me as if to say “What is wrong with this woman?”

At this point I am even starting to second guess what time his transportation comes in the morning, as if I would forget that or get it wrong, but I was half asleep, so who knows. I mean at the time I didn’t think I’d taken a nap and slept through the night, I may have been able to figure it all out sooner if I thought that but I didn’t even remember taking a nap! I just thought it was a regular morning and I had over slept!

Now I am trying to figure out what to do. Should I drive DC to work? If I did that I would be hours late for work myself. Should I just call him in sick and take him to work with me? Fortunately before I made the call and left a message at his job, I happened to look over at the TV….

Channel “Two-Five” – in DC-speak, TNT to the rest of us, was on. I’ve probably mentioned more than once that TNT is our default channel. DC always likes it on, even if he’s not watching. He likes to watch Smallville also known in our house as “Somebody Save Me” in the morning (not his first choice of shows, but they took Angel out of their line-up – Boo!). I noticed that a show was on that usually only plays at night – I think it was Major Crimes. It took a second but I finally remembered that I had taken a nap and it was 8:00 at night and it was still Monday, just as DC told me while I insisted it was Tuesday.

Now I had to make a joke out of the whole thing because he was still looking at me like I had really lost my mind. “Ha Ha, DC! Mom was confused! You were right, it is Monday! Mom made a mistake, I must have been very tired!”

He laughed. I don’t know if he really understood how funny it was, all that he knew was that Mom made a mistake, and he always thinks that is funny!

Looking back though –
Did I notice that I still had my work clothes on? – No
Did I notice it was 8:00 pm when I checked my phone for missed calls? – No
Did it occur to me that DC would never be sitting quietly at 8:00 in the morning? – No

So the conclusion I have come to is –

NAPS……

BAD, Very BAD!

The Honorary Swamp Guard

Posted by TakingItAStepAtATime

Some time ago, I wrote about our Disney Cruise, in January, 2013 – where the rule, “Don’t pick up the Princesses” was born. At the end of that post I mentioned that there was another great story to be told from the end of that trip….. so finally, here it is.

After spending 5 days on the Disney ship, our plan was to stay in Orlando for an additional 3 days to visit Disney World and Universal Studios, because, you know, we didn’t get enough Disney on the ship……

We arrived at Gaylord Palms in Orlando. It was a beautiful place, and truth be told, I would have been perfectly happy to have skipped the cruise and just stayed there all week, but 3 days would have to do.

We arrived in time for dinner – a late dinner – so we didn’t get to explore all that much on the first evening. The next morning we were planning to go to Disney World. Doug was on the balcony – he called me “outside” and said he had just seen Shrek walk though the restaurant down below. This was the restaurant we were heading to for breakfast as soon as DC was out of the shower, so I figured I’d ask about it when we went down to eat.

When we got down to Villa de Flora, I told one of the waiters (Matt) that we noticed Shrek walking by earlier. I asked if this was some sort of character “meet and greet” that they have for the kids, and if so, would they be coming back anytime soon? DC was sitting at the table away from the conversation. I didn’t tell him we saw Shrek earlier and I didn’t want him to hear me ask about it in case they wouldn’t be making another appearance.

The waiter explained that the characters did not work for the resort. They were hired for an early marketing meeting and we must have seen them on their way out.

Then he said “Let me see if I can catch them” – it had been a good while since we saw them from the balcony, so I really didn’t think he’d be able to catch up to them and I wasn’t asking so he’d have to go out of his way, I just thought they were part of the resort. I told him that it was not necessary, he did not have to do that, I hadn’t mentioned it to my son at all, so he didn’t have to worry about disappointing him.

He went to talk to his manager anyway. I didn’t really think much about it after that. DC went and got his mountain of bacon and his bagels. When I got up to get some more coffee, Matt came over to me and said he had been able to catch up them in the parking lot. Again, I said it really wasn’t necessary for him to do that. He told me his manager insisted. He said that by the time he caught up with them they were all already out of their costumes but agreed to put them back on and come back in to meet DC!!!! I couldn’t believe it! I went back to the table to try to tell Doug what was happening without DC hearing any of it.

DC had his bacon and bagels – I believe this may have been the trip where he discovered bacon – so he really wasn’t paying much attention to anything else that was going on.

I saw them coming in on the other side of the restaurant….. Shrek, Puss n’ Boots and the Swamp Guard. I tried to remain calm as not to give it away, but it was difficult.

I started taking pictures. DC was smiling because he saw me with the camera, and that is what he does….. stops whatever he is doing to smile. He was unaware of anything going on behind him.

He was so surprised and excited when they made their way to him. He didn’t know what to do at first. I was taking pictures with my phone. A waitress grabbed my camera from Doug and began taking pictures as well. The staff and customers seemed to be just as excited for him as we were!

They were wonderful, the staff and the characters! I couldn’t believe that they would do this for him! The characters stayed and talked with him for a good long while. He was in his glory!

They presented him with Shrek ears and made him an “Honorary Swamp Guard”. Teaching him the Swamp Guard Salute was also included. DC was so excited and happy that he even offered to share his precious bacon with Shrek. Of course Shrek had 2 swamp rats earlier so he was quite full already.

He had the best time with them.

He wore his Honorary Swamp Guard, Shrek ears for most of the remainder of the trip.

I still can not believe how these wonderful people went so far out of their way for DC. I mean, I only asked a simple question. I never expected any of this. This made his day – it made his trip!

I thanked everyone I could find to thank and went back the following morning to thank the people I could not find the day before.

I tweeted, Facebooked and wrote an e-mail to Gaylord Palms. I wanted to be sure they were aware of the wonderful staff they had working in their resort.

Then, just to add the cherry to the top of this sundae…… I found these on my camera when we arrived home……

I can’t ever thank these people enough…………….

“Hi, Mom! Did you have a nice day?”

Posted by TakingItAStepAtATime

Many of you may know that DC is obsessed with food. He has breakfast and he is already worried about lunch. After lunch we move on to:

“Dinner is later after that” – he always seems to add “after that” when he talks about “later”.

He must give me his breakfast order before he goes to bed every night. There is never anything different about his order from one night to the next, but he feels compelled to tell me every night before he goes to bed.
There were a few times (very few) when DC forgot for one reason or another, to remind me of his breakfast order before he went to sleep. On those occasions, he came into my bedroom to wake me up in the middle of the night so that he could give me his breakfast request.

Most days, when I get home from work DC does not even say hello. He gets his wallet, holds it open and says “Only two dollars”. This is his way of telling me that he wants money for lunch at work the following day (and for some reason, there always seems to be two dollars left in his wallet).
His only concern at that moment is his lunch the next day.
My reply is usually “Hi, Mom! How are you? Did you have a nice day?” – at this point he realizes that he did not even say hello before asking for money, he says hello, but then gets right back on the subject at hand – his wallet.

We run through this same routine very often…..

…………………..until the other day, that is.

DC came over to me, with open wallet in hand, as usual.

But instead of telling me that he only had two dollars, he ran through every greeting he could come up with all in one sentence as if he was just trying to get it all over with. It was such a monotone, run-on delivery, that it took me a second to understand what he doing:

“Mom, how are you feeling, hello, nice day, yes, nice to see you, good day, happy, hi there”–

Then when he ran out of random greetings……

“Mom, only two dollars”

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

Posted by TakingItAStepAtATime

Dear Supporters:

After the NY Post exposed the New York City Council for stalling on “Avonte’s Law” this week, they immediately scheduled a hearing date on Avonte’s Law.

The hearing will be at New York City Hall on June 12 at 10:00AM.

We will have a press conference and rally for “Avonte’s Law” at City Hall at 9:30AM. We need you to come to the press conference and hearing on June 12.

If you can’t make it, you can submit testimony via email to Daniel Dromm, Education Committee Chair at ddromm@council.nyc.gov Please CC us so we have a copy of your testimony at admin@nycparentsunion.org

In the meantime, please post and forward the petition to everyone you know on Facebook, Twitter and via email.

If you’re on Twitter, please tweet your support of “Avonte’s Law” and demand Mayor de Blasio and Speaker Viverito pass the law to @BilldeBlasio @MMViverito #AvontesLaw

With your help and support, we will pass this law to protect our children.

Thank you.

New York City Parents Union

(received via e-mail)

The GREAT BOOK PURGE of 2014!

Posted by TakingItAStepAtATime

Finally our Town scheduled a “Big Trash” pickup. These pickups used to be an annual event – when I say “event”, I mean an “event”. It was as if a newsletter went out to all of the surrounding towns and as soon as one piece of “big trash” hit the curb, the caravans of cars and pickup trucks descended. DC and I moved to this town 20 years ago, for the school system. At the time this town had the best special education program in the state. We moved here from a relatively big city, where to be honest, I thought I’d seen everything, until “Big Trash Day” came around, that is…….. I had never seen anything like this… but I digress.

Due to budget cuts, “Big Trash” pickup went from every year to every other, then finally there was no pick up at all. This year, the town decided to schedule a “Big Trash” event in April. It has been about 5 years since the last one.

As many of you know, DC loves books. His favorite activity is going to the bookstore. I’m sure he averages 3 or 4 visits per month. This means we have hundreds of books squashed in our little house. He has so many, that I really can’t keep track of what he has. If he’s picking out a book at the store, I don’t really remember if he already has it at home and he really doesn’t care if he already has it. Obviously if it is a Disney book, I know he has at least 4 or 5 versions of the particular story but I really can’t remember if he has the version he wants to buy…..or……… I know he HAD it at one time, but we may have gotten rid of it during the last “Big Trash” event. Needless to say, we end up with many duplicates.

His books and his DVDs are two things I will never be able to keep track of.

Because DC “edits” all of his books, they really can not be donated. They are just unreadable to anyone else but DC.

Book Editing

I have taken some flack over the years for letting DC write in his books because they can not be donated later. This is true, we can not donate them and I am left with a large amount of books that I have to get rid of without breaking the recycling and/or garbage man’s back.

I don’t know about you, but I don’t always purchase items based on if or where I can donate them later. If an item can be donated later, it will be.

DC is allowed to write in his own books, he does not write in library books, he does not write in books that do not belong to him.

He is allowed to write in his books because it is beneficial to his language/conversation skills, his vocabulary and his comprehension.

Yes, some of his editing is obsessive. One of the many versions of the “Wizard of OZ” that he owns was an older version where the “Tin Man” was referred to as “The Tin Woodsman”. He went through every single page of the 200-plus page chapter book and colored out (crossing out is not good enough) the word “Woods” on every page, so that it read “Tin Man”.

He also likes his chapter numbers to be written out. Chapter 1 has to be edited to read “Chapter One” and so on. Every other day he will ask, “Mom, would you spell twelve”. I do not know why after all this time he can spell every other number, but not twelve, but for some reason, he can’t. There are many other words he will me to spell but “twelve” is a constant.

Recently ~and I really think this is great because he figured it out by himself ~he has become interested in Roman Numerals.
He figured out that the V means ‘five’, so along with spelling out the chapter numbers, he is also assigning them his version of a Roman Numeral. I say his version because he knows V is 5, so Chapter 13 is edited to read “VIIIIIIII” or sometimes “IIIIIIIIV”. In any case, he is adding 5 (V) + 8 (I’s) to get to 13. He was never big on numbers, so if his own version of Roman Numerals moves his mind into “math mode”, all the better.

The obsessive editing aside, he changes sentences into new sentences that make sense. He changes words into words that mean the same thing. He will ask me from time to time what a word means and then comes up with an edit for that word that means the same thing. He is learning, he is writing full sentences, he is learning what words mean and there’s a little bit of math happening, so YES, I let him write in his books.

The problem has always been just what to do with these books when they begin to take over the house.

It has been suggested, that I should just do a little bit at a time, this way I can throw them in the recycling bin without being the cause of a Workers Comp injury for the trash hauling company.

I can not do just a little bit at a time because:

– DC gets nervous.
– We would be going through the same shelf every week, because as soon as there is a space a book or books gets shoved in it.
– If I went through all of it at one time and just got rid of them a little bit at a time I would still end up with a huge pile of books somewhere in the house and he would slowly begin to add them back into his collection.

I made the mistake of throwing away 9 or 10 books about 15 years ago. They were books I was sure he hadn’t looked at or touched in years, but he knew! For years, until just recently, whenever he left the house to get on the bus for school and then work, his last words to me were “Books are staying here”, every single day.

When I heard there was a “Big Trash Day” scheduled in April, I began getting DC ready. I talked to him about his books everyday until the week of. I explained that we were going to go through all of his books and he would tell me which ones we were going to “keep” or “throw away”. I explained that we would not throw away anything unless it was all right with him. I also explained that we would go through all of his books together and I would not do any of this without him.

We couldn’t start too early, because having the books he opted to throw away hanging around for any length of time would really bother him and he would slowly move them back to the books shelves. We had to have everything out on the curb by Sunday evening, so DC and I started sorting on Thursday night.

We started with his living room book-case. We went through each and every book. I was surprised at the amount of books he decided to throw away. I’m sure he was already planning to replace them a little bit at a time during his many future trips to the book store.

On Friday, I had a medical appointment and I was not allowed to lift anything heavy for the day, so we lost a “sorting day” right out of the gate. On Saturday we started in his room. We were attending a fundraiser that evening so between the sorting of books I was getting phone calls and texts to look for this and that and people wanting to drop items off for the fundraiser. I started getting anxious about all of these books. This book purge had to be completed today, before 4pm when we left of the fundraiser because DC was spending the night and the next day at his Dad’s – he was going to take DC directly from the fundraiser and I had promised DC that I would not sort or throw away anything with out his approval.

His room took almost all day and in the process, I threw out my back, carrying said books downstairs. Now I thought I would not be going anywhere at all that evening, never mind getting through all of his books, but DC was a great help. Going through his room made me feel like I was in an episode of “Hoarders” – it always does. It is just amazing how many books he can fit in his little room!

You probably can’t see it but there are more stuffed under the coffee table

We did it! I told DC over and over again how proud I was of him, so he wouldn’t start getting anxious about all of the books that were going away and because I WAS very proud of him for agreeing to get rid of so many! The following day, Doug came over and hauled them all outside. When DC came home from his Dad’s on Monday morning in time for his transportation to work, they were all gone, so he never gave it another thought.

No worries, though. He has plenty of books left to edit and I assume he is already plotting the replacement all of the books that went away with nice, new clean versions to edit all over again. These shelves will be over flowing again in a few months time.