Disney, Disney and more Disney………………..

Posted by TakingItAStepAtATime

Many of you know that DC has a complete, over the top, obsession with all things Disney. This obsession began when he was probably 6 months old. He loved to watch those Disney Sing-A-Long videos, over and over again.

DC did not take naps as a baby. He did not like the playpen. He liked the bouncing chair but was over it after a few days. The swing, lasted a little bit more than a few days, but he was quite over that after a week or two. He did not like to play with toys. He was not happy unless he was being carried around. These sing-a-long tapes were the only thing that captured his attention. So yes, I used them because for 30 minutes, I was free to do something else.

He graduated quickly to full length movies. The “Jungle Book” was the first full length movie he owned. I was a bit surprised that he was able to pay complete attention for the entire length of a 90 minute movie at 9 months old.

His obsession with Disney grew from there, especially for Cinderella. The boy loved his princesses! It got to the point that this “one movie” or “one Sing-a-long” a day was interfering with everything else we needed to go. He was so preoccupied with watching a movie that he did not want to do anything else. I didn’t want to take his movies away from him – he loved them, but I had to try to limit his movie watching to weekends only. This did not go over well at all.

I remember one night, he was probably 4 years old, DC wanted to watch a Disney movie, I told him he could not. Now, at the time he was non-verbal, afraid of the dark and would never think to go anywhere without me. Communication was rough, he was still having meltdowns and really had a hard time understanding many things – but on this night, when I told him he could not watch a movie, he took his video put it under his arm, marched to the front door and signed “Dad”. He was determined to go to Dad’s house because apparently he would allow him to watch his movie.

DC had officially learned how to play the “Guilt Card”. Obviously he was not going to go outside in the dark, but he did make me feel awful and as always, like the bad guy. No, he did not get to watch his movie, but I realized then that he understood much more than I had been giving him credit for.

Cinderella led to his fixation with flowing dresses and shiny shoes. Out in public, he would grab at strangers wearing ‘flowy’ dresses or skirts. He would also get on all fours to stare at their shiny shoes. This was not always welcomed by the people wearing the “Cinderella-like” garb. I had to always be aware of everyone around us at all times and what they may be wearing to avoid an uncomfortable situation.

Around this time, I had a long ‘flowy’ gauze type skirt. It was hand washable of course. I always had to be careful about drying it. We lived on the second floor and I was afraid that if I were to hang it to dry on the clothes line, DC would try to go out there to play with it – yes, among the other worries and issues these were the other things I had to think about. So I used to hang it on a hanger from the shower head and close the shower curtain, so he would not see it. One night, in the middle of the night, I woke to giggles, and some thrashing about. I went into the bathroom to find DC in the bathtub playing with the hanging shirt. I got rid of the skirt not long after.

There was ONE Disney book in his classroom when he was in his “in-between birth to 3 and Kindergarten” SPED classroom. It was the Little Mermaid. His teacher hid this book on a daily basis, because he could not concentrate on anything else knowing the book was in the classroom. Everyday he found it. She went to great lengths in hiding it – finally hiding it in a storage closet where DC had never once stepped inside – but as always he found it. It was almost as if he could sense it.

It took awhile but we finally had the movies in check and he did get past searching for that book. I didn’t want to take Disney away from him altogether, I wanted him to learn to live with Disney but not be overtaken by it. When he seemed to be in that place, it was decided it would be safe to take him to Disney World without him regressing back into his Disney-Obsessed behavior.

I know, I know, you are thinking “Why would you do that”? and again I will say that I didn’t want to take away something he loved so much, I just wanted him to be able to function around it.

His first trip to Disney World was when he was 7 years old and it was there that his first words (other than “Momma) were spoken:

Bus (because he knew the bus would be taking us to one of the parks each day)

Room (because we all know how much DC loves a hotel room, even back then)

‘Citronelle’ (DC-Speak for Cinderella)

‘Too-pay’ (DC-Speak for Peter Pan)

‘Dal-may-zaas’ (DC-Speak for Dalmatians)

For a boy who’s only word up until this point was “Momma” – I thought ‘Dal-may-zaas’ was quite amazing.

After a very long hunt, he was able to find and meet ‘Citronelle’ for the very first time. He would go on to meet ‘Citronelle’, many other times over the years and it is still very exciting for him, but nothing will ever compare to their first meeting – ever.

Moving on to grammar school, we thought the Disney book distraction was behind him. Just to play it safe, his new teachers removed Disney of any kind from the classroom before the school year began. We thought we had this covered, but little did I know, there was an entire Library in this school, just full of Disney books. Realizing very quickly that this was becoming a problem, they were removed as well (for the first few months he was there, anyway, then they slowly came back so he was not overwhelmed with a large number of books all at once).

Now that he was becoming more and more verbal, he began reciting random movie lines. The lines he recited did not always have anything to do with what was going on at the time (they still don’t), they were just what might have been spinning around in his head at the time. Some were recognizable right away, others were obscure lines that really many people would not know.

While dropping him off at Daycare one morning before school, he bowed to me and said “Thank you Lucifer”. Now I know that Lucifer is Cinderella’s cat, but really, how many other people could make that connection? Fortunately the Daycare staff, got it but I still felt it necessary to e-mail his teacher just in case, to let him know that, no, we were not worshiping Satan at home.

(and yes, that e-mail made his day)

While walking through the grocery store “Please don’t send me away, I like it here!” (Disney’s “Summer Magic” – there are very few people who even know of that movie, never mind that particular line).

Now that he is older, he has more of a handle on his obsession. He is not so distracted by Disney that he can’t or won’t do anything else. Still, he is limited to movies only on weekends. He will spout the random movie line. He still loves his princesses. He will almost always assign anyone he meets a princess or Disney character name.

And if you are wearing a ‘flowy’ dress, he will to ask you to spin………. (most people oblige)

But does he know……

Posted by TakingItAStepAtATime

I’ve been asked quite a few times – twice just this past week, if I have ever told DC that he has autism and if so how did I approach the subject. Most of the questions came from mothers with children that are just beginning to or do already realize that they are different from their classmates and friends.

To be perfectly honest, I really do not think that DC is aware that he is different – I do not know if this is a good thing – at the moment I am going with – yes, but I really do not think he sees any differences between himself and other ‘men’ his age, or anyone for that matter. I really do not believe age is a factor in anything he thinks about or notices. I don’t think age means anything to him at all.

That being said, it is never perfectly clear just what he might understand and what he does not. I really do not know what goes on in his head at times. I Know that just because he doesn’t seem to notice or understand, does not always mean that he doesn’t. Going on the small chance that he may actually know that he is different… yes, I have told him. I have told him many times, since he was very young.

We don’t have “sit down and talk about it” sessions because he becomes overwhelmed with too much information. He needs examples, he needs to see something. We also can not talk about it too often – when we talk about anything too often, it makes him anxious – he thinks something is wrong. I never want to give him the impression that anything is ‘wrong’ with him. He doesn’t need that.

I have to take the opportunities when they come. Because he is very visual, I try to approach the subject when we are watching TV or reading something that happens to have a character with Autism. The first time I brought it up to him, we were watching TV.

I remember starting out by pointing out the character.

“DC, do you see that boy?”

“yes”

“He has autism. Do you know that you have autism too”

“yes” (he answers “yes” to just about everything)

“Do you see the way he flaps his arms? Who else does that?”

“You” (pronoun confusion – ‘you’ instead of ‘me’)

“Autism means you and the boy may think about things a little bit differently than Mom and some of your friends. Can you say ‘Autism’?”

“Autism” (usually I can type his pronunciations, but I can not type his pronunciation of the word Autism)

We’ve gone through this scenario many times – arms flapping – loud noises – whatever happens to be going on with a character or story.

We talk about it when we participate in an Autism Walk or fundraiser. We talk about which of his friends have autism. I can not get into too much into detail with him, I just point things out as they come up – a character, a fundraiser, his friends….

I point it out to him when he is watching his sign language sing-a-long DVD’s. I explain to him that his autism made it harder for him to speak at first (he was non-verbal until he was 7), this is why he went to speech therapy with Liza for so many years.

He was always very happy to see Liza every week. He worked hard.

(He LOVES Liza)

Before he learned to speak, he used sign-language.

He was always happy to see Sandi for sign. He worked hard with her as well.

(He LOVES Sandi)

Speech therapy and sign language were “good” things in his mind – fun time. This can be directly attributed to the insight and resourcefulness of both Liza and Sandi and the way they choose to make the process fun by working from his interests and incorporating them into his sessions. I am 100% sure that Liza can recite the “Wizard of Oz”, in every variation to this day. They made him happy.

We’ve discussed* it many, many times over the years and in many different ways, but for a boy who remembers everything, he can not give me the word “Autism” at any other time. Unless I ask him to repeat it for me, he does not seem to even remember ever hearing the word. This just strengthens my belief that he really does not understand any of it. He does not know that he’s different and for now, that is fine with me. My goal here is not to make him feel that he is different.

So why do I continue to talk about it?

On the chance that he does recognize this now or later on, I don’t want him to wonder and not be able to communicate the question to me. This isn’t the sort of question he would ever be able to communicate.

And though I am relatively sure he does not understand, it is possible one day he may understand, or partially understand, but over and above all of that, if he were to hear “Autism” or “Autistic” elsewhere I want to be sure he doesn’t think it something that is “bad” or “wrong with him”.

I don’t and will not harp on it – I don’t feel the need to have those long heart – to – heart flowery discussions about it. He is happy, he knows he is loved. I will continue to mention it from time to time when the occasion arises, just so the word is recognizable to him and just in case he should ever wonder. If there comes a time when it seems that he might need to know more then I will try to explain it a little more in-depth or try to come up with a different way to explain it to him. For now, he seems to be just fine knowing what he knows and that is really all I want.

I wish I had a better answer for the people who asked…

Have I told him? – Yes.

But does he ‘know’?

I may never know for sure….

“To Boldly Go……”

Posted by TakingItAStepAtATime

To Bodly Go….

I confess…

I admit it…

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

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

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

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

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

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

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

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

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

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

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

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

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

: Rock, Paper, Scissors, Lizard, Spock

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

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

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

: K9

: Do Not BLINK

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

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

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

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

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

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

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

– just following directions, Doc…….

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

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

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

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

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

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

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

He didn’t want to sit down.

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

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

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

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

We decided to just wait at the table.

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

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

but he was also “done”.

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

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

except for this guy…………..

this guy….

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

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

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

#LLAP

Baltimore, Over the Rainbow and Back – Part 3

Posted by TakingItAStepAtATime

: Part 3

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

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

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

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

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

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

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

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

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

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

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

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

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

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

: Fish

: Fish and

: more fish

: Searching the bottom

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Home – just a “little bit” of snow!

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

We had to shovel our way in………

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

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

“Hi, Mom! Did you have a nice day?”

Posted by TakingItAStepAtATime

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

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

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

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

We run through this same routine very often…..

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

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

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

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

Then when he ran out of random greetings……

“Mom, only two dollars”

The GREAT BOOK PURGE of 2014!

Posted by TakingItAStepAtATime

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

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

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

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

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

Book Editing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DC’s room

Living Room

And…… we did find 40 or 50 books that were not
edited and we were able to donate.

Seafood anyone?

Posted by TakingItAStepAtATime

Just a quick post just because I am so proud of my boy. I have told him so many times since yesterday that DC finally said, “Mom, write story”.
I don’t know if he asked me to ‘write story’ because he is proud of himself too or that he just wants me to stop telling him every 5 minutes, but either way, his wish is my command.

DC and his dad gave me a gift certificate for Mother’s Day for a seafood restaurant. The restaurant is very popular I am told. I had never been there, but DC has been there with his Dad and a couple of other times on field trips with an organization where he participates in many of their activities.

The restaurant is about an hour away, so we decided to make a day if it.
For a kid that loves to go ‘out to eat’ almost as much as he loves going to the bookstore, he didn’t seem all that excited when we finally arrived. Also, for a kid who remembers EVERYTHING, he didn’t seem to recognize it and told me more than once in the parking lot that he did not want to go there (I think he was a little bit out of sorts to begin with yesterday).

Once inside, he saw that they had cheeseburgers on the menu and he also seemed to now recognize the place so he stopped telling me he didn’t want to stay there. DC’s standard order anywhere we go is: wings, cheeseburger, french fries and coke. I could see they did not have wings on the menu so I was surprised when he ordered “fried chicken” with his cheeseburger. I did not see that on the menu either and tried to explain this to DC. He was getting upset and luckily the girl at the counter stepped in and corrected me and said that, yes they do have fried chicken and we CAN order one piece as a side dish/ appetizer. I should have known that he of course, would remember what he had when he was there before.

– SAVED by the counter girl –

I told DC that he was correct and that Mom was wrong, which just put him in a better mood, because he LOVES when I tell him I am wrong. 🙂

We took a seat and not too long after, our food was ready. In the booth behind DC was a family; parents and three young children. In the seat directly behind DC’s head was the mother and two of the children, they looked to be about 3 years old. The two children were on the inside of the booth climbing all over the place and screaming, two inches from DC’s head. At first I didn’t pay much attention because there are times that noise really bothers him and other times he seems oblivious to it. This seemed to be one of the oblivious times, until all of a sudden, he looked at me, lifted his fists straight up next to his head, clenched his teeth and just shook! There are many times when I don’t immediately know what is wrong, but this time it was apparent.

I told him that I understood what was bothering him and told him that it might be better for him if we just moved his food to my side of the table and sit with me. First he refused, because he was all situated where he was, but after thinking about it for only another second, he agreed. He moved over to my side of the table, he looked at me, put his hand to his forehead, pretended to wipe it and said “Phew!”

It was a simple fix, but I was so proud of him for keeping himself under control. Yes, he shook his fists and clenched his teeth, but he did not make a sound, he did not yell, he did not lose control. He found his own way to let me know he was having a problem and he let me help him to correct it. I’m sure the people in the booth didn’t even know anything was happening. I praised him over and over again for keeping himself in control and letting Mom know there was something wrong and letting me help him.

I also took it as an opportunity to explain to him that when he sometimes gets loud in a restaurant that this might be how the other people feel; this is why I always ask him to try to keep his voice down. I’m really not sure if he understood the connection, but I have to try to make it, when the opportunity presents itself.

He went on to enjoy his fried chicken, cheeseburger, fries and coke in the seafood restaurant without incident and in a much better mood for shopping and bookstore visits to come later.

(this post was written entirely on my phone, please excuse any typos and run on sentences)

“Please allow me to introduce…..”

Posted by TakingItAStepAtATime

(This post probably qualifies as more of a facebook status, but it made me laugh, so a blog it is!)

Pleased to meet you

DC loves to make introductions. I don’t believe he really understands the point of introducing people. He notices people making introductions in the movies he watches and in the books that he reads. It doesn’t matter if the people he is introducing already know each other. It doesn’t matter if he knows they already know each other, when he gets to urge to make introductions, he does. He is usually very formal about it as well –

“I would like to introduce my mother, Vickie Lastname”

“It is my pleasure to introduce to you, my mother, Vickie Lastname“

or (my favorite)

“Please allow me to introduce my ‘lov-er-ly’ mother, Vickie Lastname“

Recently we attended a pasta dinner fundraiser to benefit the summer camp DC has attended since he was 5 years old. We purchased enough tickets for DC, Doug, my mother and myself and we sold a few more to friends and family members.

Seated with DC and I were,

– My mother (DC’s grandmother)

– Doug (who was also pulling DJ duty)

– DC’s grandparents on his Dad’s side

– DC’s Dad – Tracy

– DC’s stepmother (I generally do not use the stepmother title to describe her because DC is so very much into Disney that there is no explaining to him that all stepmothers are not evil) Karr-ee-anna – in DC-speak

-DC’s Aunt K

-Her husband R

– My friend Tonya

– and DC’s friend, Salli

Due to the crowd, Doug’s father and sister had moved over to the next table.

DC was very excited that everyone was there at the same time. He sat at the table as if he were “holding court”. He then decided that introductions were in order.

Turning his attention to his father, Tracy:

“Tracy, this is my mother Vickie Lastname”

and

“Vickie, I would like to introduce you to my father, Tracy (same) Lastname”

~ Insert Dramatic Pause ~

“Um…….”

“we’ve met”……………………..

Dc and Friends Dancing the night away! Photo Credit: “Tonya”

Don’t Forget to Call Mom

Posted by TakingItAStepAtATime

Don’t forget to call Mom

There are many times, even at this point that I really do not know if DC really understands certain things or if he is just going through the motions; the motions that were taught to him. There are other times that I am surprised to find that he really does understand, even if he is using one of his scripts to communicate it. It is not always easy to tell the difference. I don’t think it will ever be easy, but I do not think that using the telephone will ever be one of those things he completely understands.

I have worked long and hard over the years but DC still has a hard time using the telephone. To begin with, he just doesn’t like it, he doesn’t. When he was younger, he couldn’t even bear to have the receiver on or near his ear. He has always had a very low tolerance for anything having to do with his ears, so using the telephone or just listening to someone that wanted to say hello to him was just unbearable for him.

Secondly, as I stated above, I really do not think he understands it completely. If he dials incorrectly, he doesn’t understand that he should hang up and dial again, he just keeps dialing. I finally got him to the point where he could tolerate the phone on his ear. He has memorized our phone number, but as he doesn’t always understand the question “What is your phone number”, I don’t know if he would be able to give it to anyone if he needed to. He does know how to call me.

He is still not all that thrilled about using the telephone, though. If he does get a call, it has to be brief. When he’s had enough, he will say nothing and just hand me the phone. I have to tell the party on the other end (who is usually still talking to him, not knowing he’s passed off the call to me) that DC is done talking. Not very long ago when he was talking to his father, he handed me the phone when he decided he was finished, as usual. I handed it back to him and said “DC, you have to say good-bye to people on the phone when you are finished.”

He took the receiver back and said “Goodbye to the people”

He does have an iPhone now. He knows how to use it. He is very good at using iTunes and YouTube, but still the phone part of it is difficult. He is supposed to call me on my cell phone when his transportation arrives to pick him up from work; he does, but it is a script.

“Hello Mom”

“Hi, DC. What are you doing?”

“I am going home Nowwww”

He says this the same way in the same tone, with the same emphasis on the “Ow” in “now” – every day.

“Did you have a good day?”

“Great”

“Okay, call me when you get home”

“Okay”

When he gets home he is supposed to call me from the house phone because I want him to know how to DIAL my phone and memorize my cell number as well.

He does call just about everyday. There were and still are a few days that he forgets and I have to call him. Hearing the phone ring, must remind him he has forgotten to call me so instead of just answering the phone, he picks it up and dials my number while I am on the phone, and then goes though his “at home” script. If for some reason it is not me calling him, the person on the other end gets the script and then he hangs up.

“Hi, Mom I am home”
“Hi DC, is Mrs. H there?” (she has already texted me to let me know she is there)
“Yes”
“What are you going to do today?”
“Go to ____” (enter, Library, Track or whatever activity depending on what day of the week it is)
“That sounds like fun. Okay, I will see you in a little while”
“Okay, Goodbye Mom.”

He does not understand voicemail or answering machines, even though I let him listen to mine and try to explain what it is, I just can’t seem to come up with an explanation that he can understand. If he does leave a message on my phone, I don’t think he realizes he is leaving a message, he just goes through his script and hangs up, thinking I must not have a lot to say that day???

He will not use the phone spontaneously. This is something I really want him to understand. I want him to think to call me if something is wrong or if he happens to get lost or for any reason at all. I want it to occur to him if something goes wrong, that he should use his phone. I really am not sure that it would occur to him. I’ve gone over this many times, but as many times as he says he understands, I don’t think he does. He has never called anybody spontaneously, he has just about never asked to call anyone. After all this time, he still only uses the telephone when he is told to, to call me from his transportation and to call me when he gets home.

We’ll keep working on it….

A few days ago, I had to leave work early for a dental appointment and then a doctor appointment. The appointments went quickly, so I was home before his aide arrived to meet him after work. He called me from the car as usual. When he arrived home both his aide and I were there. I was talking to Mrs. H in the kitchen. DC came in, he said hello to me and Mrs. H and gave me a hug.

Mrs. H and I were still talking in the kitchen, while DC went into the living room, I thought to have his snack “alone” (he likes to be alone when he has his snack). My cell phone, which was charging right in front of the phone in the living room, started to ring and I said “I’ll bet he’s calling me”.

From the kitchen, I asked:

“DC, what are you doing?”

“Hi, Mom. I’m home” (from the living room talking into the phone, probably to my voicemail).

When he is doing what he was told to do, I try not to do anything to throw him off or make him forget to call me the next time, so I went with it.

“Is Mrs. H. there?”

“Yes”

“What are you going to do today?”

“Go to the Li-ber-ary”

“Okay, I’ll see you in a minute”

“Okay, Mom, see you later!” and he came back into the kitchen.

Yes, Rule – followed……

but there is still some work to do………………….

Book Store Blues

Posted by TakingItAStepAtATime

DC has a favorite bookstore. I mean a very favorite bookstore! It is located in Salem, MA and everytime we visit there – which is quite often, that store must always be one of our first stops. We are spending this weekend in Boston and decided to take a side trip into Salem. DC was excited to go to his favorite book store.
Let me tell you, this place, The Derby Square BookStore has books piled up everywhere. It was always frightening for me. I am always afraid that if he moved just one book the wrong way, everything would come tumbling down on us.

(A few photos from a few years back)

DC and BB

But he just loved it!

He loved it so much that his cousin drew a picture of him in the store for Christmas one year.

On our way to Salem today, I said to Doug, and I don’t know why, “Someday we are going to show up at this store and find it gone”.

Jinx…….

We arrived at the store and found a table outside with some books on it, the door blocked by the table, a few people looking at the books outside and a sign that said “Closed! Reopening in June”.

OH NO! (screaming in my head)

DC would not understand this. He couldn’t understand why he couldn’t go in. I tried to have him look at all of the books on the table hoping he would find just ONE that he was interested in – but he did not. The new owner saw how upset he was getting. We didn’t have to say anything to her or ask; she shuffled DC and I inside and let him look around. We had to be careful as everything was being boxed up, but honestly we really didn’t have to be any more careful than we always had to be in there.

There wasn’t much that was not already in boxes but he managed to find 3 books.

“Phew, put hand to face” as DC would say.

As I was paying her for his books and thanking her profusely, she told me that she had just purchased the store and that it was going to take a while for her to go through everything, get it all in some sort of reasonable order, and renovate the inside so it didn’t give the impression of the walls caving in on you.

I can’t picture this, but I can’t wait to see it.

I thanked her again. DC thanked her as well. It was such a nice thing for her to do! She has no idea how she single-handedly saved the rest of the day for us! I didn’t get to go into that kind of detail with her because she was busy with other customers. I wish I could have.

Crisis Averted!

Now all I have to do is be sure we do not make any trips to Salem until after June!