Baltimore, Over the Rainbow and Back – Part 3

Part 3
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!

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.

Hardrock 'Caf' - DC -speak

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.

Wishes at Sea

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.

cruise 487

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!

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</

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The CALL TO ACTION – A Memorial for Avonte

Call To Action

Call To Action

– Co-written with Gizelle Tolbert

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

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

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

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

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

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

– written by Gizelle Tolbert

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


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

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

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

I would like to thank everyone in advance!

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

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

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

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


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

 

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

 

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

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 and Approved” ….

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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……

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………