Showing posts with label autism #royalcaribbean. Show all posts
Showing posts with label autism #royalcaribbean. Show all posts

Monday, July 28, 2014

Baltimore, Over the Rainbow and Back - 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 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!

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

Tuesday, May 6, 2014

Just Who Is This DC That You Speak Of ?


It has now been full year since I began writing this blog. Over the course of this year, a few friends have asked, among other things, why I call my son “DC”.
DC is not my son’s name. This is confusing to my friends because I do post this blog on my personal face book page. Obviously my friends on my personal page know my son’s name, they know our last name, they even know where we live. BUT because this blog is public, and is shared on a number of accounts and networks via WordPress (not via my personal page), I do not use his real name, our last name or our location. 

My personal face book page is set for “friends only”. Nothing I write about is anything that my friends don’t know or haven’t heard about DC. I am very proud of my child, as I am sure my friends are very aware of. 😃

As for my other accounts; they are set all up using my first name only, no location. I am sure if one tried hard enough, they may possibly be able to figure out what state we live in, but really not much else.

My Instagram account is not only first name and no location, but it is also private. 95% of my followers and the people I follow there are other autism parents and CharityMiles friends. Quite honestly, they are all wonderful people and I really would not have much of a problem divulging our location or last name to most of them. A few do know Dc’s name and that is fine with me. There I see compassion, camaraderie and the support of each other, that I really don’t see anywhere else. We all seem to have different opinions, but we all seem to embrace our differences instead of attacking each other.

Another question that I am asked every so often is why I write a blog.

I never really intended to write a blog. My blogging began one day when I was writing an extremely long response to a blog post that I had just finished reading. After I hit “post” I decided that writing a response to this post on someone else’s blog was not going to make me feel better about the topic being discussed. I opened an account with a local on-line news publication and pasted the response I had just written onto a blog page and published. After a month or so and only a couple of posts; finding the local publication blog not-so-very user-friendly, and because it was local, I felt I could not share it anywhere else and still remain somewhat anonymous,  I moved to Word Press. I was so worried that I would never have enough to say to sustain a blog, but I went for it anyway. It turns out that I do have a lot to say. I don’t know how many people care to hear what I have to say, but I say it anyway.

Originally, I did not even post the blog on my personal Face Book page, only on my “community page”. Before posting it there, I went through 3 years of posts on the community page and it’s accompanying website , deleting anything that could be considered too “local” of a story.  I wanted to be sure that our location was not too apparent AND that the names and locations of the people featured in these now deleted local stories were also not on display.

(I have just discovered that there is a way to post local news and events on that community page to a specific audience, so I can begin posting local events and news again.)

I did begin posting the blog to my own page at the urging of a friend. No, I am not naïve enough to think that private postings or ‘friend only’ postings are really 100% private, but I have taken all of the precautions I feel that I can and I am always looking for others.  I will continue to call my son, DC and write about “a local theater”, a “local college”, a “local baseball league” or a “local ice cream shop”.

I read many blogs as well. Many of the blogs that I do come across are written by parents of younger children. Most are wonderful and very informative. There are many that I absolutely love,  but I always feel that the parents of adult children do not get to have an equal voice in this community. We are cast aside, or worse, berated. I am not in any way saying my blog is the voice of parents with adult children, I don’t think there are enough people that actually read it, in the first place, to even consider that, but I amONE voice and ONE opinion in a sea of blogs and opinions that do not seem to make room for the parents that have been at it  for many years now.

I was very tired of being preached at by those who have not reached this point in their child’s life and constantly being told how to feel. I understand where they are coming from and in turn I believe they can or should try to understand where I am coming from. Whatever else you might have to say about me, I  have done a good job of raising DC.  Of course there was help along the way but as a single mother going on 21 years now, most of it fell to me alone.  I truly resent the fact that we, as parents are being made to feel as if after all these years,  we’ve got it all wrong.

I’m hoping a little insight into what comes after “school age” may go a long way in getting people to stop and think before making blanket decisions, accusations and statements that may not affect their child the same way it will affect mine (more about this at another time). There has got to be some give and take. Everything is not good for everybody.

Having said that, I have learned quite a bit from other parents by virtue of this blog. I don’t always agree with every opinion and my readers, I’m sure, do not always agree with me, but I truly believe writing this blog and getting some of the feedback has helped me see some issues a bit differently or at least why some parents see things the way they do. I can only hope I can and will be afforded the same courtesy; and so far I have.

Life tends to be very different when your child “ages out”of the school system and at other times, it is exactly the same. When you are waist deep in school, therapies, programs and IEPs, what happens after 21 is not high on your priority list. Of course it is a priority and of course it is in the back of your mind but, the here and now takes precedence. There are so many new and different issues to consider, and it all comes to hit you in the face much faster than you expect. Your views and opinions can change dramatically from what you hoped for when they were young and what you hope for now. Your life changes drastically, while not changing at all.

In an earlier blog I wrote:

“If I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

He will, someday have to live in the real worldwithout me.

So I will keep writing with the hope that a few people might read and think a little bit about the future. I would never say that spreading awareness is not a good idea, it IS definitely necessary, but…..

all of the awareness in the world is not going to keep DC safe and happy when I am no longer here to protect him…..


Friday, April 18, 2014

Baltimore, Over the Rainbow and Back – Part 2

After the fun-filled experience boarding the ship (see part 1)  things were looking up. DC had his cheese burger, I had my wine, everything was calm.

The remainder of the day (Friday) was spent exploring the ship. DC as usual, loved the cabin, as small as a ship cabin is, in his mind it is a “hotel room” and a hotel room is way up there on his list of favorite things.
The “Travel Gods” were on my side too; there was NO Disney Channel in the room!!!! (Happy dance!!!) – so DC moved on to his “default channel” (at home he calls it “Two – Five”) TNT, which is perfect with me.

The lifeboat drill, as usual was difficult for him; not because it frightens him, I don’t think he pays enough attention for it to frighten him, it is just the standing in line in a crowd, for that length of time for reasons that he really doesn’t understand and has no interest in. Thankfully wearing a life vest is no longer a requirement, but it is still torture for him and for me as I held my breath and hoped he would make it without incident. He did make it; he got a little loud at times but he made it. He was not happy, no matter how many times I told him how proud I was of him, it took him a good long while afterwards to get himself out of his “anxiety mode”. I’m hoping the lifeboat drill is one of the items taken into consideration (if it hasn’t been considered already) by Royal Caribbean regarding their new“Autism Friendly” cruise status. I understand that attendance is important for safety reasons, but there has to be another solution – even if the solution is as simple as a designated area away from the crowd.

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Sunday, April 13, 2014

Dc’s Letter to His Best Buddy, Steve

DC has been involved in the Best Buddy program, since he was in middle school. Steve has been DC’s Buddy for the past three years. As I’ve told him many times, he is the best, most involved Buddy DC has ever had. Steve will be graduating from college this May. He will be either heading to Boston or back home. In either case, he will not be living close by any more. We will be sorry to loose him. DC will be assigned a new Buddy next year and that buddy has very big shoes to fill! I am hoping that Steve and DC will keep in touch after he leaves even though he won’t be his official Best Buddy anymore. DC hopes so too.

(Steve and DC – Photos in no particular order)

 

 

The following was written by DC. Of course it took awhile, he didn’t just sit down and type. I asked him questions and he answered them. His answers made up this post.

The content below are DC’s words. It was typed entirely by him (over a few days, as typing more than a sentence or two at a time, is not “fun” for him).

Nothing was corrected or edited. I love it just the way it is.

****************

dear steve

I am happy your are best buddie.

we had lots of fun together .

I liked going to parties and eating food.

I am a good dancer

I will miss you very very much wen you go home .

I hope we will talk on the telephone .

and on the FACEBOOK .

I WILL RELLY AGAIN MISS YOU**.

I LOVE BOSTON

YOUR FRIEND .

DC

***************

and I do believe that he will miss him, very much………………….

 

Thank you also from me. I know it is often difficult to carry on a conversation and/or understand what he is talking about, which is usually why his former Buddies did not show very much interest, but you hung in there. He really enjoyed your company and as much as he does not like to talk on the phone, he DID really enjoy receiving calls from you. We wish you nothing but the best after graduation. You deserve it!

 

20140414-115104.jpg

**”I WILL RELLY AGAIN MISS YOU” – just another example of Literally Speaking. DC said “I will really, really miss him” and I told him he should write that in his letter.

He then looked to me to repeat what he just said word for word, so he could type it.

I said: “I will really and then write ‘really’ again – miss you” Meaning write really twice.

So it came out as “I will really again miss you....