Baltimore, Over the Rainbow and Back – Part 2

Posted by TakingItAStepAtATime

After the fun-filled experience boarding the ship (Baltimore, Over the Rainbow and Back – Pt 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.

Saturday was our first scheduled stop in Cape Canaveral; the stop where we scheduled the surprise bus trip to Disney World. DC knew there was a surprise trip coming. He knew the ship was going to Florida, so I was sure he’d figure it out. I asked him where he thought we were going to go when we got off of the ship. He answered “Bookstore”. I told him that I was sure there would be somewhere to buy books on the surprise trip. I asked him again as we were waiting to get off of the ship “What else are you hoping to do on your surprise trip?” – He thought about it and said “Toys R Us!”. I realized that even though he knew the ship was going to Florida, that really didn’t mean anything to him, he didn’t make the connection. He thought he was going to New York City, his other favorite place! Seriously, if you gave him the choice between Disney and New York City, he just might have to think about it!
I was a little worried for a minute that he had his heart set on New York, so I decided I would tell him that no, we were not going to New York City, but I was sure he would love this trip just as much. We were hoping that we would be able to keep it a secret until we were on the bus, or better yet, until the bus drove up to Disney World, but the “Follow your Lollypop” (sign) announcements started and we were sure he would pick up on the “Follow the Disney World Lollypop” announcement eventually; we decided that we would not be able to keep it a secret any longer. Doug gave him a card. He opened it and inside were a couple of Disney World gift cards. It took a minute, but he put it all together in his head and yelled “Disney World!!”
We only had 7 hours including the bus ride, which sounds like a good long time, but at Disney World, it is not a long time at all. We had to plan every move to be sure we made it to all of his favorite places and we weren’t going to worry about the rest.

The first stop as always was the Castle Show. The last 3 or 4 times we were there, the show had been “Like A Dream” – DC knows it by heart; he’d seen it every time we were there (and a few times, more than once in a single visit) and he has also found many clips on YouTube so he has it memorized. Today the show was……… drum roll please; you guessed it…… “Like a Dream” (I don’t really know if this is the actual name of the show, but it is one of the songs that I have embedded in my brain), but…… it is still 100 times more tolerable than having to watch “Story Time with Belle” once, twice or three times per visit. Story Time is gone now, and I for one am very happy.

We headed next, to Ariel’s Under Sea Adventure and on to Ariel’s Grotto to meet Ariel. I am again, thankful that the Grotto is now located in another area of the park. It is a whole new Grotto, redone, so now much of the time spent in line is in the shade (and I suspect that there may be more than one Ariel in there; which makes the line go much quicker than it used to, but I can’t be sure)

Next stop, the Princess room…….

I reminded DC of the rule; “Do not pick up the Princesses” before we got in line. I asked him again while waiting in line about the rule, and he remembered, and one more time just before we went inside….. “Do not pick up the Princesses” he answered, so into the Princess Room we went….. THE MOST exciting part of his day! He was a charmer, as usual.

: Cinderella meets Prince Charming

: Cinderella and The Prince Dancing

: Sleeping Beauty

: Sleeping Beauty (Aurora)

And then, of course……..

I did wonder…. if he had been told ahead of time that he was going to Disney World and the Princess Room……would he have remembered to pack his comb?

We had lunch, rode the Winnie the Pooh ride, It’s a Small World, the train and on the way out, visited the gift store for books. That was really all we had time for. He saw his Princesses and bought some books so the day was a complete success.

Back on the ship, DC single-handedly won Disney Trivia. The most difficult part of the game was getting DC to actually whisper the answers in my ear so I could write them down. DC’s whisper, is not a whisper at all. What he thinks is a whisper is talking in a louder than normal volume in a whisper-like voice. He does not really understand that whispering is supposed to be quiet. After the first few answers, he did finally get it and our team won the game. He knew every single song and the movie it came from, in only a few notes! If they were to ask him the name of “the voice of” (the voice actor), he could definitely supply that answer as well.

After his big win, he went through his entire script:

“I did it!”

“I am so Proud of You” (DC reverses his I’s, me’s, you’s, ect. – he is telling me how proud I am of him)

“I am so impressed” (again, he is telling me how impressed I am with him)

“Gasp! Put hand to chest” (at which point I have to act surprised, gasp and put my hands on my chest)

Afterwards in our travels around the ship, a few passengers recognized him as the Trivia winner. being the ham that he is, DC was in his glory with all of the recognition.

Next Stop…… ~~Bahamas~~ (oops, shhhh).

DC is not a fan of the Bahamas. We didn’t mention this stop to him. We did tell him that we were going to visit Atlantis and just for that added boost that he always needs when he isn’t really interested in the activity, I added that we are going to search for Atlantis, the Lost Empire . No, Michael J. Fox would not be there, we are just going to look around at the old city (We were actually taking a trip to the aquarium, but the tour was touted as “Search for the Lost Continent”). Making a Disney or favorite movie connection always helps to peak his interest. I always make sure that he does not expect too much, though. I wouldn’t want him to be disappointed.

Two years earlier on a Royal Caribbean cruise, we opted not to take a tour in the Bahamas and decided instead to just go into town and walk and look around. It was hot and it was crowded. To say DC hated it, is an understatement! Anytime the Bahamas was mentioned after that particular trip he would sign “all done” and emphatically shout “No I didn’t! No I didn’t!”

‘No I didn’t’ in DC-speak means “No I don’t want to (go there, do something, etc.)”

He really enjoyed the aquarium. He loved looking at all of the “artifacts” from the “Lost Empire” and he was much more interested in looking at the fish than he usually is. He generally does like to see the fish no matter where we go but, like me, after a few tanks, he’s done. I think the artifacts kept him interested a little bit longer.

Aquarium…..success!

On the way back to the ship, we stopped off at the drum “stage” that I was sure he would remember. At this point he realized he was in the Bahamas.

As you can see, he was not happy “No I didn’t! No Ba-ha-ma-mas!”
As soon as he understood that we were going back to the ship; not going walking or shopping, the Bahamas were just fine with him. He even took a minute to play the drums.

It is now permissible to speak of what was formerly known as the “Island that must not be named”.

To be continued…………..

Dc’s Letter to His Best Buddy, Steve

Posted by TakingItAStepAtATime

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 lose 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 – please excuse the quality – my way of blurring the background people that may not want to be pictured in a blog)

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 .

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

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!

**”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”

Knock, Knock, Knock on Wood

Posted by TakingItAStepAtATime

Knock On Wood

Just recently I was reading a blog that I follow – Raising 5 Kids with Disabilities and Remaining Sane Blog. The title; What’s in my Purse. The post was about the many trips the family has made to the emergency room over the years and what the author learned to carry with her at all times. If you have a minute, check it out.

It made me realize how lucky I am to have made only ONE trip to the ER with DC – that is correct, ONLY ONE! (Knocking wood, Knocking Wood, Knocking Wood). The one trip came at age 21 and for the most ridiculous reason. As you may or may not know, DC is 23 with Autism. Safety is not something he has any awareness of. He IS a little better now that he is older, but he is better because he has been taught not to do this or not to do that, not because he really understands what can happen to him. He doesn’t really understand many things unless/until they actually happen. So not wanting him to get hit by a car in order for him to understand what could happen if he were to be hit by a car….. I have to hope that making rules, and pointing out everything around him, will have some impact on him.

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.

No Injury – Just wanted to wear a Band-Aid

Donald Duck – part of the “Character Collection” (no injury, just a fashion statement)

Rounding out the Collection, we have Mickey Mouse (again, no injury)

A few years ago, we took a weekend trip to Hyannis, MA in Cape Cod. He arrived Friday evening. The plan; have dinner and hang out at the hotel on Friday night. Saturday we would take the ferry, and spend the day in Nantucket. Sunday, we planned to stop in and visit one of my oldest friends (from grammar school, believe it or not) before we headed home.

We arrived on Friday evening. DC was happy to be in the hotel. As far as he was concerned, we could just stay there. He loves hotels. Saturday, as planned, we took the ferry to Nantucket. He loved the ferry. We searched out a few book stores as we must (see “Off to the Book Store We Go”), looked around, had lunch and took the last ferry back to the hotel. It was a nice day. We had a good time.

Sunday morning was going to be spent just hanging out in the hotel room until it was time to check out. DC was watching a movie on his kindle, Doug was on the deck and I was packing up the bathroom items. I was only in the bathroom for a few minutes. When I came out, DC was sitting at the desk; right where I left him. He yelled “Mom! Tears.” DC, as a rule almost never has tears, his eyes never water -even when he cries, he rarely has tears. When he is really upset and really crying and wants to make certain I know how upset he is, he will use water or spit to create tears, just for effect. Even as a baby, he did not have tears when he cried. But here I could see he had tears running down his face…… real tears.

“Tears!”

I thought possibly his allergies were hitting him harder than usual – Doug had the deck door open and the deck was right on the golf course. “DC, what’s wrong, do you have something in your eye?”

“Mom! Tears! Ear!” On one hand he was excited about the real tears on his face but his excitement was mixed with a bit of panic.

I had no idea what he was trying to tell me. Then he showed me the ear bud from his Kindle. There were rubber covers on the ear buds and one was missing. Panicking, I yelled out to Doug something that probably made no sense, and ran DC into the bathroom. I couldn’t see anything in his ear. DC started to panic now that he realized that I couldn’t get it out right away.

This entire exchange above…. Tears, Ear and showing me the ear bud would normally be cause for celebration – DC being able to tell me that something is wrong and what is wrong is a very BIG deal, but all celebrating had to wait because he was getting more panicky by the second.

I still could not see anything in his ear. I dumped everything that I had just packed out and could not find the tweezers. I sent Doug down to the front desk to ask for a flashlight and tweezers, while I tried to keep DC’s fingers out of his ears and tried keep him from flipping out any more than he already was. Doug came back; the desk had no tweezers (?) and no flashlight (?).

We took DC down to the desk, he would be okay for a minute or two and then he would freak out. The man behind the counter did not seem to understand what we were talking about. I am sure he thought we were all crazy. I was somewhere between panic and laughing hysterically at the ridiculousness of the whole situation while DC was making very loud noises, yelling out random words, flapping, stimming and doing everything else that comes with his anxiety. I’m not sure what the man at the desk thought was going on and why we needed a flashlight and tweezers, but seeing DC in the middle of the lobby absolutely loosing it; he looked frightened and asked his assistant to go check again. She came back with no flashlight and no tweezers. Seriously, what hotel doesn’t have a flashlight?

I was so trying to avoid the Emergency Room. It hadn’t been all that long since DC finally became comfortable with doctors. I didn’t want a long and scary emergency room visit to erase the years of progress he had made. The other issue was it was his EAR! For years, when we went to the doctor, he would get unbelievably upset and totally meltdown if anyone went near his ears. I remember one of the doctor’s assistants, who was either new to the office or had not had to deal with DC getting his ears checked saying, “Oh! I was wondering why we had to bring extra trash cans into the examining room! I get it now!” – Yes, every single time, he would get so worked up, screaming and fighting that he would vomit. This went on for years. The very last thing I wanted to do was to bring him to an emergency room to have someone poke around in his ear.

The desk clerk gave us directions to the nearest pharmacy and we took directions to the ER too, just in case.

I rode in the back seat with DC to keep him from pushing the ear bud in farther. Doug ran in to the pharmacy to buy the tweezers and flashlight. Now we are all in the backseat of the car, armed with a flashlight and tweezers, trying to see inside his ear. I can’t imagine what the other people in the parking lot must have been thinking. DC had enough at this point and was not cooperating at all anymore…and….. I still could not see anything.

I knew we had to suck it up and head for the Emergency Room. I still wasn’t positive that there was anything in his ear at all. Did he just think that it went into his ear and it was really just on the floor somewhere at the hotel? I didn’t know, but he was so out of control, I had to assume it was in there somewhere.

We arrived at the emergency room. It was a weekend in a tourist area; I was expecting hundreds of people waiting. I didn’t know how I was going to keep him calm and keep his hands away from his ear while we waited. We walked through the door and there was only ONE person in the entire waiting room! I wasn’t sure if that was a good or bad sign but I was going with good. I took him to the desk and explained the situation to the clerk. One look at him flailing around and she asked if he needed to be sedated. I told her (with fingers crossed) that he would not.

They took us right in! (I love this place). They put DC in a bed, the doctor came and checked his ear. DC LET him check his ear! He really must have wanted this thing OUT! He told me he could see it but it was in there deep and he would need to use another tool to get at it. All I could think was “No way he is going to let you do that!” but I SAID “Okay, he’ll be fine with it”.

I explained the situation to DC and told him what was going to happen, not really knowing if he would understand what I was telling him, but he said “Yes! Ear!”, so I think he did understand.

The doctor went in with some sort of funnel-looking thing. I was truly amazed that DC was cooperating and keeping still. He was finally able to get the thing out. Of course DC had to examine it completely before they got rid of it, just to be sure, I suppose, that it was out.

DC calmed down immediately and we made a big deal about how brave he’d been! All of my worrying about the doctor, his ears, traumatizing him with an ER visit was for nothing. He was totally unscathed by the whole thing and was very proud to tell people that he had been in the ‘hos – i – bull”.

We were done and over it in time to get back to the room, finish packing – where he wanted to put those things right back into his ears!

“NO, NO, NO!” a thousand times, no.

We were also able to visit my friend as planned.

Visiting Friends

I went on a hunt for new ear buds without any rubber or removable parts as soon as we got home.

Coincidentally, as I was writing this story, DC received a belated birthday gift from one of my friends. This gift included two boxes of character Band-Aids that DC is already wearing proudly.

(and yes…….. I am still knocking wood……………)

Pants on Fire

Posted by TakingItAStepAtATime

Pants on Fire

We have heard a lot about RESPECT, AWARENESS and UNDERSTANDING over the past few weeks (End the r-word) and we will hear quite a bit more next month during Autism Awareness Month.

There are times when, we, as parents of children or adults with special needs, do have to go to extremes or try many different tactics to get information from our children. Communication is not easy with my son. He can/will tell me what he wants but anything else is difficult. An answer to a simple question, if I can get an answer at all, can take a good long time and a lot of work.

But….We do not “trick” and we do not lie.

Having said that, when I drop DC off at an activity or event, I do have to tell him verbally and in sign that I am going for ‘coffee’. For some reason, and I really have not been able to figure out why, he knows this means and I am coming back to pick him up. I consider this a “little white lie” , not a big deal. 90% of the time, coffee will be involved in whatever I am doing or wherever I am going.
If I tell him I am going home, or to the store, my departure is prolonged by :
“Mom is coming back?”
Yes, DC.
“Mom is never coming back”
Of course I am coming back, DC.
As I start to walk out of the door, he moves on to – “Mom, come here please”
…………………….and the whole process begins again.
For some reason he accepts ‘going to get coffee’ and it is all good.
For the record, in case anyone thinks he’s been traumatized at some point by being left somewhere……. I have never forgotten to pick him up, I have never even been late to pick him up from anything at anytime, so I really don’t know where this comes from, but ‘coffee’ seems to be okay with him. Why I have to use the ‘coffee’ sign is just another mystery.
This sort of thing, which actually makes him feel better, and is not hurting him or anyone else, is fine with me. I don’t really consider it a lie and it is certainly not a trick.

A few weeks ago, a friend and I were having lunch in a restaurant that is staffed by special needs adults. They do, of course have supervisors, but the wait staff and kitchen staff are all adults with various special needs.
This particular day, my friend and I were sitting at the farthest corner of the restaurant.
I am a “people watcher” by nature, but if the following exchange could be heard in detail by us, sitting so far away, it was without a doubt, heard by the customers sitting closer to the front.

I noticed a staff member approach the restaurant supervisor, who had been eating at her desk since we arrived, with some sort of candy/food wrapper. I really didn’t hear what the first staff member said to the supervisor, but the supervisor replied, “I don’t know who was just in the bathroom”. So again, being a parent of a special needs child and having quite a few friends with special needs children, I surmised from this (loud) statement that someone was sneaking food in the bathroom.
I get this, I get how this could be a concern. Did it have to be announced? No, but I do get it.
I continued to watch because, still eating with one hand, she picked up the wrapper in a scissor hold (between her index and middle finger), lifted it up into the air over her head and turned it side to side as if she was looking for finger prints or something. The production she was making was kind of funny and way over the top. It was without a doubt entertaining, anyway. I assumed that was the end of it, but what followed was not funny or entertaining at all.

She put her food down, got up from her desk and went over to the counter that looks into the kitchen area. She raised this wrapper over her head (still in the scissor hold) and asked, “Who left this wrapper out here” (Not “Who left this wrapper in the bathroom”).
I could hear a few employees answer, “Not Me”, “It wasn’t me”.
She then said, “I just wanted to know where I can get these”. Her assistant joined in by saying “They look so good, they have raisins and ___, (I couldn’t hear the other ingredient she mentioned) we just want to know where we can get them”.

At this point I could hear someone reply. I could not hear what they said, but someone did reply.
The supervisor then asked “Did you buy them yourself or did your mother buy them for you?”
I heard the employee reply that her mother bought them.

As they walked away from the counter, proud of themselves for tricking the employee into confessing by taking full advantage of her disability, the Assistant said, “I knew it was her” – the Supervisor replied, “Of course it was, she didn’t say a word when I asked who left it”.

Again – far side of the restaurant – we heard all of it.

RESPECT, UNDERSTANDING, AWARENESS, TRUST and let us add CONFIDENTIALITY???? What do we do when the people entrusted to care for and work with our children do not seem to know the meaning of any of those words?

Apparently, we still have so much more work to do.

(Just as an FYI, Normally I would have said something to her, her supervisor or both right away, but I was 95% sure that the person they were tricking into confessing was the son of a friend of mine. I wanted to tell my friend the story before giving the manager a heads-up and a chance to come up with a different version.)

****

Tales from the Day Program – ALL

Baltimore, Over the Rainbow and Back – Part 1

Posted by TakingItAStepAtATime

I really couldn’t write about this trip without including this part of it. This part, Part 1 is a little bit “cranky” – my apologies, in advance.

In early February we set off for DC’s third cruise, his second on Royal Caribbean. We didn’t have to fly for a change because the ship was leaving from Baltimore.
We drove down on Thursday night for Fridays boarding.
There are not many things DC loves more than staying in a hotel, so he was very happy that we were staying overnight. He was even more excited to be in Baltimore, because, of course….. “Hairspray”. I am sure he was expecting Tracy Turnblad (Nikki Blonsky) to be dancing in the streets (I prefer the Ricky Lake version, but that’s just me)

Our ship was to make stops in Port Canaveral, Nassau – Bahamas, Coco Kay – (private island) also in the Bahamas and Key West, in that order. We booked our tours ahead of time and we made a conscious effort not to mention “Bahamas” because DC just hates it there. The tour we choose in Port Canaveral, was a bus trip to Disney World. We kept this a secret as well, otherwise we would not hear about anything else for weeks before the trip.

Friday morning arrived and we took the shuttle from the hotel to the ship. We made our way through security, filled out our forms and went to check in.

DC is 22, but obviously does not drive. He has a State ID. He does not yet have a passport, but a passport is not necessary to go to the Bahamas. All that is required is a state ID/drivers license and birth certificate. When DC was born, I did not opt for the full size certificate. I was told at the time, that the wallet size was just as official and was much more convenient. I have never had a problem with it.

Just to back up a moment…… I am someone who will “put something in a safe place” and never find it again, so I have always carried DC’s birth certificate, along with my own, in my wallet. It has been in my wallet for 22 years, obviously not the same wallet, but in A wallet for 22 years. The top of the certificate is a little bit frayed, but all of the information and the seal is visible.

After giving the woman at the check-in counter (let’s call her “woman #1) all of our paperwork and identifications (the very same identification used the year before and the year before that) she informed me that she did not know if Key West would accept DC birth certificate! She would have to go and have it checked out.

What??? I explained that this is the same birth certificate we used the previous year.

W#1: “Yes, but Key West is really cracking down and it’s a little tattered on the top”

Me: “Well it’s 22 years old! What will we have to do if Key West decides not to accept it?” – (The last few times it has been out of my wallet, was when we checked in last year and at check in the year before that, so the condition has not changed since they approved it on the last trip)

(At this point Doug is muttering under his breath in kind of that sing-song way “Don’t argue with them!”)

Number 1, that is what I do…

and

Number 2, I was not arguing, I was asking what I thought were valid questions.

W#1: “You will probably have to have someone fax the long copy over”

Me: “There is no one at home that has any copies of his information”

W#1 “Oh no, well I don’t know”

– so, in my mind, what she is telling me is:

If I had a family member back home who had access to a long version of his birth certificate or another copy of the wallet size they could fax it over and they WOULD accept a fax copy with out the raised seal (???) – I’m sorry, I was now very confused by all this.

We were asked to sit down and wait in a roped off area. The few people who were waiting there, were waiting to be seen by a doctor before boarding the ship – (we’ll call this the “problem section”).
DC remembering everything, knew that after the check in desk, we should be boarding the ship.

DC: “Time to go to the ship”

Me: “Yes, we just have to wait a few minutes”

DC: “Going to the ship”

Me: “Yes, we just have to wait a few minutes, Bud”

– Now I’m having flashbacks of San Francisco ….

Eventually another woman who seemed to be in charge of the “problem section” came over to tell us that they were still waiting to hear from Key West (we shall call her “Woman in Charge” or WIC for short). She told us that there was an additional problem with DC’s birth certificate; there was no file number on top, just x’s. I had never noticed that and apparently no one else in 22 years – Royal Caribbean, included, noticed either. I took out my own birth certificate, issued in the same city and state and sure enough, mine had a number, his did not.
Now I was really beginning to panic – because this is also what I do. We had been sitting in this area for almost an hour. We were the only people left in the “problem section”. My only thoughts now were:

What if they decide not to accept his birth certificate?

and:

How would I ever tell him we could not get on this ship?

We had been sitting there for more than an hour, now. Suddenly realizing that it was Friday and city and state offices are open, I found the number to the department/office where our birth certificates were issued. Of course, this is a government office so I could not get passed the main menu and any option I choose, led me back to the original menu (there was no “dial zero for an operator” option). I started dialing random 3 and 4 digit extensions and finally a woman answered. I explained our situation. She explained that not everyone is issued a file number. This woman was nice enough to hold while I went to the desk and explained to the “WIC” that I had a city employee on the phone and she told me that not everyone is issued a file number.

The response: “Well YOU have one!”

(“not everyone” to most people, means that some are and some are not)

Me: “Yes I do, but mine was issued 31 years earlier than his!”

I asked if she would talk to the woman from the city, she wouldn’t. I asked if there was something that this woman could fax over to help the process (I didn’t want to lose the person on the phone before finding out what I needed in the event Key West decided not to accept his certificate).

WIC: “It’s in the hands of Key West now, I can not do anything about it”

– so W#1 told us that we would have to have something faxed over if they did not accept the certificate we had with us, but WIC wouldn’t tell me what to have faxed or the fax number to send it to now that I had someone on the line –

While I was standing there with the city employee still on the line, the WIC looked at her screen and announced that Key West has approved his certificate.
~PHEW ~ (as DC would say)

I thanked the woman holding on the phone and told her that they finally approved it and we were all set.

Still sitting in the “problem section”, she directed another woman (we’ll call her woman #3) to begin checking us in. She took our names and paperwork all over again and told us to have a seat because she needed information form the original check in person (woman #1). We sat down again, woman #3 left. She came back to her seat as another passenger walked into this “problem section”, walked up to woman #3, waved to all of the other people working the regular check in line and got herself checked in.

My assumption at the time was that woman #3 was still waiting for woman #1 to supply her with whatever information she had already entered into the system, so she decided to check in this other passenger (who obviously either works for Royal Caribbean or has some sort of connection to the line). When she finished checking in this passenger, she just sat at the counter. The “problem section” was still empty with the exception of us, so she literally sat there, hands folded with a smile staring off into distance as if she was waiting for her next passenger.
Now we’ve been sitting in the “problem section” for another half hour (One hour and 45 minutes listening to “Going on the ship” – “Time to get on the ship”). I turned to Doug and said “Do you think we are still supposed to be sitting here? I’m going to go ask”

– “Just wait, they will call us when they are ready. Don’t keep bothering them.”

After another 15 minutes, Woman #3 was still just sitting there, hands folded, grinning at no one. I went up to the desk and asked the WIC who was at the computer behind “Grinning W#3” – “Should we still be sitting here or should we get back in line?”

Apparently, woman #3 should have been checking us in, but decided to wait on her friend in the middle of our check in and then just forgot about us! She wasn’t waiting for information as I assumed, she just thought we were already checked in! After WIC yelled “Why didn’t you check them in? I told you to check them in!” – she finally checked us in.

– More than two hours of – “Going on the ship” – “Time to get on the ship” later, we were finally checked in and ready to board.

On the ship, thankfully lunch was still being served (what a catastrophe THAT would have been, if DC missed lunch too!)

A cheeseburger and fries took his mind off of the whole boarding debacle. Everything was right with the world in his eyes.

Cheeseburger, fries AND “Chicken with Bones”

I opted for something a little bit stronger…..

Less Calories 🙂

DC WILL be getting a passport very soon….

And who knew it is more difficult to get into Key West than the Bahamas? Who knew?

(to be continued in Part 2- where our trip does get better..)

The things we know…. and the things we don’t

Posted by TakingItAStepAtATime

Just 5 minutes inside his head.

My friend Peg and I have often discussed just how fantastic it would be if we could just get inside our kids’ head for five minutes! That is all we wanted, 5 minutes…. 5 minutes just to see what is really going on in there.

We never really know, we may think we do, but we really, really don’t.

As much as I think I know my son like the back of my hand, there are still times when I realize I do not know anything at all.

For example, during his 3rd year of swimming with Special Olympics, his coach yelled over to me one day at practice “He just figured out he can open his eyes with the goggles on!” – At that point in time, he’d been wearing the goggles for practice twice a week and during competitions for as I said, 3 years. It never occurred to me or anyone else for that matter that he didn’t know he could open his eyes while wearing them. I suppose, that knowing him as I think I do, it should have, but – no, it did not.

I am relatively sure he does not understand “death”. Other than Bambi’s mother and Old Yeller (who was quickly replaced at the end), none of his favorite Disney characters ever die, really. If they do – it doesn’t last. Someone kisses them, or a spell is cast and there they are, good as new. I try to talk to him about death, due to my “dropping dead” obsession and because everyone dies eventually. I never want him to think I just left him, but I really can not say that he understands it at all.

DC seems to live in the present. Things change and he just changes with them. I had a conversation with my friend, Toni a while back. Her daughter can watch something like Full House and relate it to her own life – high school, college, get a job, buy a car, get married, and have children. DC watches but does not relate any of this to his own life. He went to high school because I sent him. He moved on to “college” because I sent him and so on. I tell him what to do and he does it. I have tried to have conversations with him about what he thinks should come next in his life, but these conversations just tend to go to “dinner” or whatever meal or activity may be coming up. His future is not a concept he can grasp. He lives in the present and doesn’t seem to think about anything changing in his life, things just change and he just goes with it.

So the other night DC was on a ‘picture drawing’ roll – Flowers for Mom, Hearts for Mom, Birthday Cake for Mom and then this…..

Wedding Cake ? For Mom?

Needless to say I was a little bit thrown. DC’s Dad and I divorced when DC was 3. At the time, I didn’t try to explain it to him, I was too busy trying to get him diagnosed. It didn’t seem to faze him, he still saw his Dad every week and I was sure he would not understand any attempt I could make at explaining it to him. He never seemed to think anything of it. As marriage is something I never had or have any desire to do again, it is not something we ever talked about. Other than adding “Baby for Mom” to his Christmas list a few years ago, I never really had any indication that he might realize that things may be different here than at his friends’ homes. I am still not sure that he does. It has always been this way – it is what he is used to.
Most of his friends do have parents that are together and they also have brothers and sisters. But I still do not think he relates that to his own life. But again, every time I think I have him figured out he does something like presenting me with a drawing of a three layer wedding cake specifically for “Mom” and he has me guessing all over again.

That five minutes in his head, would come in very handy right now, but since I can’t have that, I am going to assume that he just really loves Wedding Cake and he just wants to share with his Mom………….

File under: “Rules I thought I would never have to make”

Posted by TakingItAStepAtATime

As promised in “Looking Handsome in the Princess Room”, here is the story about the next time DC met Snow White.

Right around this time last year we decided to go on a Disney Cruise. DC as you can imagine, was very excited. He loved the cruise, the shows, the mountain of bacon he tried to sneak every morning and of course, the characters on board, specifically the Princesses.

This particular evening we had just met one princess and were about to get in line for “Alice” when the boy that was managing the line told us that Alice was almost finished and ready to leave (we seem to have that same problem with “Alice” every time we see her, but it always works out – another story for another time). We went and stood where DC could at least see her and explained that she was leaving soon so he would not be able to meet her. The “Line Manager” who must have been watching DC when he met the previous princess and also saw how excited he was just looking at Alice, came over to us and told us that Snow White was due out soon and he had arranged it so we would be second in line to see her. First in line would be the family of the woman who was playing Snow White (shhhh! I didn’t say that!).

After everyone cleared away, he put us and “the family” in line. DC was over the moon and she hadn’t even come out yet!

I think we have been to Disney every year – or close to every year since DC was 7 but he is always just as excited to see the princesses as he was the very first time. The “Line Manager”, between dancing up and down the line, stopped to talk to DC a few times. He was getting a kick about how excited DC was.

Finally she came out. We waited through the family visit and pictures and then it was DC’s turn. I took my regular position with the camera and Doug stood off to the side a little bit.

DC was having some sort of conversation with Snow White while I was taking pictures.

Meeting Snow White

Next he gave her a huge hug, she seemed okay with that.

The Hug

Then……

He got so excited, he picked her up and swung her around in a circle like a rag doll!

Did I get a photo? no… a video? no. We (the “Line Manager” included) were all too busy charging the little stage area because he was not letting her go!

I have to hand it to Snow White; she stayed in character the entire time!

“Oh MY! How strong you are!”

Obviously, he was not trying to hurt her, it was just a very exaggerated hug!

Snow White was fine – everyone was fine. We got our picture and left the area, but I felt it was necessary to make a new rule;

“YOU CAN NOT PICK UP THE PRINCESSES!”

I didn’t realize that the same people play the same princess parts for the duration of the cruise until a few nights later when we went to the Princess Room to see 4 princesses. I realized that it was the same Snow White. Oh boy, I was sure she was going to call security for DC’s visit.

When we got to the front of the line, the “Line Manager” from the other day was also there.

“Hey, I remember you!”

I said that I was sure that he did.

He turned to Snow White and said “Snow, do you remember DC?”

Snow White said “Oh My yes! You are very strong!”

I told both of them not to worry, we have a new rule and DC will not pick her up and spin her around.

DC walked up to Snow White and said,

“I have to “Apolo – gize” .

That was a complete surprise to me and Snow White seemed to think it was cute. She told him everything was fine.

He proceeded to “Apolo – gize” to every other princess in the line. They all accepted his apology even though the rest of them had no idea what he was “Apolo – gizing” for.

I’m sure they were all informed later……..

The rule has been altered a bit since then. Now, anytime I know that we are going to meet anyone that he will be excited about, I ask:

“What’s the rule?”

DC answers “Don’t pick up the people”

I think that should cover it.

There is another great story about this vacation and I will get to it one of these days.

Seriously?

Posted by TakingItAStepAtATime

I have read so many articles and lists recently regarding “What not to say to an Autism Parent” and “The 10 dumbest things people have said”, etc…….

And yes, yes, I’ve heard almost all of them before – more than once.

I’ve been told “He doesn’t look Autistic”

He doesn’t look Autistic

At a birthday party a parent asked “Does he eat?”

Another: “Can he talk?”

Yes

“Well he’s okay then, right?”

I’ve always said that I’d rather people ask questions than stare or assume. Some people do, and I always welcome the fact that they want to learn. I have had many wonderful conversations with strangers that were genuinely interested in learning about autism – his autism, as the saying goes…. “If you meet one Autistic person, you’ve met ONE Autistic person.” ~ Unknown

Recently I was visiting DC’s work program. There was a woman standing there that looked a bit familiar to me, but I could not place her. She looked at me and said “I know you, Vickie”

I was the team manager for our local Special Olympics golf team for a few years (insert laughter, as I know NOTHING about golf) and her nephew who has autism, was one of my players.

We chatted for a bit. As it turned out, she was there because her nephew was transitioning into the same work program as DC.

As we were chatting, she said:

“Your son is SO handsome. You should be thankful he has Autism so you won’t have to worry about all of the girls that would be flocking around him”

Now she is a very nice woman and I know in her own way, she actually thought this was a compliment, but……..

Seriously?????

Progress with a Side of Pasta

Posted by TakingItAStepAtATime

Progress with a side of Pasta

Looking back over the past year, I can honestly say that it has been a very good and productive year.

DC completed his first full year of “work”. He transitioned into it very well. Me? I am the one still having a problem calling it “work” and not “school”, the “car” is here, instead of the “bus”. I panic each time a school vacation comes along because I have to make plans for DC while I’m working, until I realize he doesn’t get those weeks off anymore; he’s working. The transition seems to be much more difficult for me than it was for him.

Volunteer “Dream Job”

My “Broadway Baby” also has a volunteer job as a Greeter at a local theater, with a job coach of course. He loves it and does well. The shifts are long, but he makes it through and he is happy when he gets home. How many of us can say we have our Dream Job? DC has his.

Because of his “theater experience” he was asked to help his camp by passing out programs at the annual “Thank You to Our Civic Groups” picnic. Unfortunately, the promise of cheeseburgers after he was finished totally distracted him while he was supposed to be working, so we will write that one off as a “trial run” and I will know how to better explain the process to him next year.

Communication-wise, I’ve noticed that I am doing much less prompting to get him to respond to a greeting and many times he will initiate a greeting himself; although “Hello Old Lady” isn’t exactly in my top ten, he DID initiate the conversation himself. He was also able to tell me a couple of times, in his own way, but in a way that I was able to figure out, that he wasn’t feeling well.

He has been asking to do more things “All by myself”, like making his lunch for ~~school~~ work, his breakfast, making his bed and shaving. “All by myself” means he doesn’t even want me in the room (a good thing with the shaving……. I make him nervous – me?- “Mom, are you still here?”).

This year we skipped our annual Halloween trip to either Salem or Sleepy Hollow and decided to go to New York ComicCon. To say it was crowded is an understatement. He did well. Yes, he was anxious, but he controlled himself as best he could. Mike TeeVee came at the perfect moment. DC was getting anxious so we were on our way off the show floor because I could see he was getting upset. We happened upon “Mr. TeeVee” on the way. No line, as I don’t think anyone realized he was there yet. He was very nice and was able to spend some extra time with DC. DC calmed down right away.

He waited in line for an HOUR and A HALF to see the love of his life, Felicia Day. Do you remember when your kids were little? When they would finally eat or do something that they never would before and you were afraid to even look at them for fear they would stop? This is exactly how I felt standing in that line with him. I don’t think I was even breathing. Fortunately she came out early and we were relatively close to the front of the line, so I knew we were “home free” at that point. He was excited when she came out but then he turned to me and said “I am very nervous about this”. He has used the word “nervous” up to this point only when there was a storm, never about meeting anyone. I think he realized right then and there that the people he sees on TV or in the movies are real people AND that this person, that he adores, is someone special.

Penny’s Frozen Yogurt

We made it to the front, I could breathe again. She was lovely to him. It made his day.

He was also able to meet William Shatner. He does know who that is due to his mother (me). He was very nice to him as well but “no pictures please”. We did forget to tell him that DC was born on his birthday; maybe that would have rated us a picture –but live and learn.

His Uncle asked him to sing Edelweiss at the table on Christmas Eve. DC is, and always has been, a ham so I was surprised that he sang the song, looking only at me and then buried his head in my arm when he was finished. Bashful! Embarrassed! I don’t know if this is a good thing or not, BUT, it IS a new reaction and a new emotion so I will add this to the Plus Column as well.

There is so much more I can say about this year, but my point is, DC is 22, he continues to make progress. No, not in leaps and bounds as he did when he was younger, but it is there.

No matter what the age, there is always progress to be made. It may not even be noticeable right away, but it is there.

And, Oh……. On New Year’s Eve, Eve, two days before the year ended, he actually ate pasta. PASTA!

Happy New Year!

“I Love you, Mom” (Just a little Thanksgiving Quickie)

Posted by TakingItAStepAtATime

DC flashing the I Love you Sign as he does almost anytime he walks by me.

Who would not be thankful for this wonderful child who will just flash me the “I Love You” sign, just because he happens to be walking by or just randomly peek around the corner to say “I love you, Mom”.

Happy Thanksgiving…….