Sunday, April 27, 2014

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 text-ed 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 voice-mail 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 voice-mail).
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 

Saturday, April 19, 2014

Book Store Blues


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. 
(Photos from a few years back) 


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.

(Drawing)

(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! 
(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. ) 

Friday, April 18, 2014

Baltimore, Over the Rainbow and Back – Part 2

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

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

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

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Sunday, April 13, 2014

Dc’s Letter to His Best Buddy, Steve

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

(Steve and DC – Photos in no particular order)

 

 

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

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

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

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

dear steve

I am happy your are best buddie.

we had lots of fun together .

I liked going to parties and eating food.

I am a good dancer

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

I hope we will talk on the telephone .

and on the FACEBOOK .

I WILL RELLY AGAIN MISS YOU**.

I LOVE BOSTON

YOUR FRIEND .

DC

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

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

 

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

 

20140414-115104.jpg

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

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

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

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