Book Store Blues

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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 was 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)

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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.

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(Drawing)

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(Original)

On our way to Salem today, I said to Doug, 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 out side with some books on it, the door blocked by the tables, a few people looking at the books outside and a sign that said “Closed! Reopening in June”.

OH NO!

DC wouldn’t 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!

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(This post was written quickly and on my phone – I DID wear my glasses, but even so, please forgive any typos, run on sentences …. Etc. )

Baltimore, Over the Rainbow and Back – Part 2

Baltimore Over the Rainbow 2

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!!”
(I tried to get his initial reaction, which was much better – it didn’t work out, so this video will have to do)

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)

DC and Ariel

DC and Ariel

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.

 

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.

The proud winner of 3 plastic prizes in Disney Trivia

The proud winner of 3 plastic prizes in Disney Trivia

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.

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

miss you

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

(Steve and DC – Photos in no particular order)

 

 

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

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

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

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

dear steve

I am happy your are best buddie.

we had lots of fun together .

I liked going to parties and eating food.

I am a good dancer

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

I hope we will talk on the telephone .

and on the FACEBOOK .

I WILL RELLY AGAIN MISS YOU**.

I LOVE BOSTON

YOUR FRIEND .

DC

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

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

 

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

 

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**”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”

Conversations

Conversations…………….

Conversations

Conversations

At Work:
Jamie: Vick, I just wanted you to explain the payment system we use; is it like PayPal?
                  *This is a system that has been in place for the past 3 years and has been explained many times*
Me: I guess you can describe it that way.
Jamie: I just want to be clear about how it works. They can use their credit card, correct?
Me: They can use their credit card or their bank account. (#1)
Jamie: Okay, where is the link?
Me: The payment link is at the bottom left of every invoice.
Jamie: And they can only use a credit card?
Me: No, they can use a credit card or their bank account. (#2)
Jamie: Okay, so if they use the link for, say a deposit, can they use the same link to pay the balance?
Me: Yes, they can.
Jamie: I just wanted to be clear about it before I talk to my client. The link is at the bottom of the invoice and they can only use their credit card……………….

Heavy Sigh

Heavy Sigh

At Work:
I received an e-mail with a secure attachment. I receive this same e-mail every other week with a secure attachment that I open, enter my password and access the information that I need. I have received these specific e-mails with the secure attachment for more that five years.
The e-mail I received on this day did not have the attachment.
I forwarded (not replied, but forwarded) the e-mail back to the sender and explained that the secure attachment was not attached.
The reply:
“But were you able to open the secure document and view it?”
questionmark

After Work:
DW: I was driving to work and I saw a lot of blue signs – I don’t know what it was all about.
Me: It is Autism Awareness Month (#1). It is probably for “Light it Up Blue”
DW: No, it said something about blue lights all month so it must be for something different, because Autism Awareness is just one day, right?
Me: World Autism Day is one day, but April is Autism Awareness Month (#2).
DW: Well it must be for something else, because the ribbons on the signs were different and it said something about lights all month.
Me: April – which is this month, is Autism Awareness Month! (#3). Where did you see this?
Doug: I don’t know!
Me: (??????!!!!!?????)
Doug: What?! Why are you looking at me like that? It must be for something else!
Me: I asked you where you saw this and you answered “I don’t know”
*I have to wait for him to stop laughing because as usual he didn’t hear the question but pretended to and gave me a random answer that didn’t make any sense.
Doug: It was here on the green, but it must be for something different because it says it runs all month.

Bang Head Here

 

At work:

Ren: I didn’t know you were taking the day off. I would not have scheduled this client to come in. (*I have nothing to do with the person coming in, except to supply standard paperwork)

Me: It has been listed on the calendar for months and it was noted at the last meeting.

Ren: Well I don’t check the calendar every five minutes, so you need to tell me when you are going to be out. I wouldn’t have scheduled this client to come in.

Me: Everything you needed for the client was completed before I left. I thought the procedure was to check the calendar before we schedule anything?

Ren: (yelling now) Yes! I’m wrong, but you just left (*at my regularly scheduled time) and sent an e-mail with all of the information I needed - after you left.

Me: I don’t have access to my work e-mail at home, so I didn’t send it after I left, I sent the e-mail reminding you that I would not be here and listing the paperwork that I left for your appointment,  while I was still here.

Ren: (still yelling) Well, I didn’t have time to check my e-mail while you were still here so I didn’t see it until after you left !

woah

 

 

At Home:
Me: DC how was work today?
DC: (my 23 year old son with Autism) Great!
Me: What did you do at work today?
DC: “Scoop the Dirt”
Water the plants”
“Clean the cart”
Me: What are we doing tonight?
DC: “We going to Best Buddies dance with my friends – lots of food”
Me: Are you going to wear your new suit?
DC: “Yes, look handsome”

and finally…..

a conversation that makes perfect sense…………………………….

Guest Blog: From Awareness Grows Hope – Kicking Off Asbestos Awareness Week 2014

By: Heather Von St. James

Every year, 3000 people are diagnosed with mesothelioma.

In 2005, I was one of them.

I had never worked with asbestos, but my father did, and secondhand exposure as a child was enough to make me sick decades later. I was lucky, able to make a miraculous recovery through surgery. But I experienced for myself the fear, pain and suffering this disease can cause, and I believe I’ve found my calling fighting for victims of mesothelioma and other asbestos diseases.

Because of that, Asbestos Awareness Week (April 1 – 7) is very close to my heart. Join me and organizations like the Asbestos Disease Awareness Organization as a voice for the victims, and together we can work toward an end to mesothelioma and asbestos disease.

Remember: From awareness grows hope. Each voice could save a life.

Read more: http://www.mesothelioma.com/blog/authors/heather/from-awareness-grows-hope-kicking-off-asbestos-awareness-week-2014.htm

Knock, Knock, Knock on Wood

Knock On Wood

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

No Injury – Just wanted to wear a Band-Aid

Donald Duck - part of the "Character Collection" (no injury, just a fashion statement)

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

 

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

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

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.

 

Birthday Band-Aids

Birthday Band-Aids

 

and extra for sleeping

and extra for sleeping

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

 

 

Knock, Knock on Wood

Knock, Knock on Wood

 

For Sami, Love Daddy

Vickie:

Re-Blogged for World Down Syndrome Week (3/17-3/22) and World Down Syndrome Day – March 21, 2014

Originally posted on Taking it a Step at a Time - Autism:

Chloe and Sami In 1992, when Sami, who has Down syndrome, was 18 months old, her father, Rich, was the Senior Producer for the Sony JumboTron in Times Square.  He began producing a series of spots to raise awareness and acceptance of people with Down syndrome to run on the JumboTron during Down syndrome awareness month.    He continued to produce these PSA’s on his own until 1994, when he contacted Emily Perl Kingsley.

Emily is an Emmy award winning writer for Sesame Street, the author of a wonderful essay entitled “Welcome to Holland” and a personal friend of Big Bird.  She also has a son with Down syndrome.

Emily Kingsley immediately saw the value in what Rich was producing and through her contacts involved NDSS.  Together they produced spots which included children with Down syndrome from all around the country.

The response was overwhelming!  All of the featured children and their…

View original 172 more words

Pants on Fire

Pants on Fire

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 not 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 employing 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.

Baltimore, Over the Rainbow and Back – Part 1

Good Morning Baltimore

 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)

Good Morning Baltimore

Good Morning Baltimore

Our ship was to stop 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 past 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 on the line 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"

Cheeseburger, fries AND “Chicken with Bones”

I opted for something a little bit stronger…..

Fewer Calories :)

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..)

“We Go Together……..

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

GreaseSR

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and just how much DC and his friends just rise to the occasion and always have a great time together,  I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***I am fortunate to have friends that are willing to go all out for something that DC loves so much; we all took a line from that song and dressed appropriately for the Sing-A-Long. He and his friends had a ball and I think after the initial embarrassment, my friends did as well.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Toni’s house one Sunday afternoon. Toni being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true :) ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Bag-On-Head Prop for "Beauty School Drop-out" was just too much

Bag-On-Head Prop for “Beauty School Drop-out” was just too much

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

Beauty School Drop-outs Newspaper picture (names removed)

Beauty School Drop-outs Newspaper picture (names removed)

The other people in our row, making the best row ever (names removed)

The other people in our row, making the best row ever (names removed)

BB and I being interviewed (edited to remove names and location)

BB and I being interviewed (edited to remove names and location)

Trending Lightly - Web Daily

Trending Lightly – Web Daily

The Autism Daily Web News

The Autism Daily Web News

The Theater's Facebook Page

The Theater’s Facebook Page

The Theater's Facebook Page

The Theater’s Facebook Page

 

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings