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

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

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

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

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

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

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

……. it is all related.

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

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

“WHAT???”

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

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

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

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

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

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

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

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

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

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

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

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

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

It turns out that there were tickets available!

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


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


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

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

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



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

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

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

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

The Great Band-Aid Obsession

“All children with Autism love stickers”

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

“All children with Autism love Legos”

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

“All children with Autism love Minecraft”

—-DC hates Minecraft.

“All children with Autism love things that spin”

Okay, I’ll give you that one…………..

Other than his books and movies, the one thing DC really loves are Band-Aids. I am not completely sure that Band-Aids are on the list of what “Every child with Autism loves” – it is possible, I do not know, but I know that DC just loves them.
I believe the main reason for this obsession, as I mentioned in an earlier post, is that he’s never actually had the need for a Band-Aid – that I can recall.

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

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

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

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

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

“Mom! Band-Aids! P-LLLLL-EEEEE-ASE!”

- Yes, we bought them………

The ‘I want a Band-Aid’ hints begin almost every night with…
“Mom. my leg is itchy”
“Oh, really? I don’t see anything”
“Mom, my arm is itchy and my leg is itchy”
He doesn’t always come right out and ask for a Band-Aid, at times he will, but usually he will just continue to tell me his arm, leg or foot is itchy, until I finally give in and say…
“Okay, go ahead”
Then off he goes to apply his 3, 4 or more Band-Aids.

A few people have wondered and even asked why I “let” him do this.
Why? Seriously, these are the kind of issues that some people think I should be worried about?
I choose my battles and to me, this is not a battle. This is so far removed from a battle, that it is not even worth talking about – with him, that is. Apparently it needs to be explained to others.

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

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

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

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

So, back to the Band-Aid situation….

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

please read my Facebook Status 8/6/14:

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

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

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

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

"To Boldly Go......"

 

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)

 

Last October, we finally made it to New York ComicCon. 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 has 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 had 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.

Barnes and Noble Baltimore 2014

Hard Rock

Dragon Paddle Boats

Ripley’s

Candy! (Jelly Beans, to be exact)

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.

Spock, complete with instructions

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.

TARDIS and a Dalek

Photo Booth Shot

It’s Bigger on the Inside

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…………..

 

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

 

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 go “hog-wild” – 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!

Searching the bottom

Petting the fish

more fish

and more fish

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

- 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 me 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…….

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” ….

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

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……

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

Today was my son’s first day going to day camp this summer. He has attended this camp since he was 5 – he’s 22 now.
Every summer he would go to 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. I was shocked when I started looking at programs for him that they don’t have 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 2 weeks’ vacation, holidays and some sick time, 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………

originally post at Wordpress