Don’t Forget to Call Mom

Don't forget to call Mom

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………………….

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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 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)

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DC and BB

DC and BB

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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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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!

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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!!”
We only had 7 hours including the bus ride, which sounds like a good long time, but at Disney World, it is not a long time at all. We had to plan every move to be sure we made it to all of his favorite places and we weren’t going to worry about the rest.

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

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

Next stop, the Princess room…….

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

 

And then, of course……..

 

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

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

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

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

“I did it!”

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

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

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

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

Next Stop…… Bahamas (oops, shhhh).

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

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

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

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

Aquarium…..success!

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

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 lose him. DC will be assigned a new Buddy next year and that buddy has very big shoes to fill! I am hoping that Steve and DC will keep in touch after he leaves even though he won’t be his “official” Best Buddy anymore. DC hopes so too.

(Steve and DC – Photos in no particular order – please excuse the quality – my way of blurring the background people that may not want to be pictured in a blog)

 

 

 

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

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

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

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

dear steve

I am happy your are best buddie.

we had lots of fun together .

I liked going to parties and eating food.

I am a good dancer

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

I hope we will talk on the telephone .

and on the FACEBOOK .

I WILL RELLY AGAIN MISS YOU**.

I LOVE BOSTON

YOUR FRIEND .

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 (2)

At Work:

John: 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.

John: 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)

John: Okay, where is the link?

Me: The payment link is at the bottom left of every invoice.

John: And they can only use a credit card?

Me: No, they can use a credit card or their bank account. (#2)

John: 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.

John: 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……………….

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 than 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?”

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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?

DW: I don’t know!

Me: (??????!!!!!?????)

DW: 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.

DW: 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:

Kim: 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.

Kim: 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? You wouldn’t  have had to check the calendar every 5 minutes – only once, since it’s been there for months.

Kim: (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. 

Kim: (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!

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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