Hey! That’s not in the script!

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About a year or so ago, I wrote a post about the difficulty DC has with using the telephone (Don’t forget to call Mom). We haven’t made all that much progress since that post but we continue to work at it. As I said in that post, he does know how to use the telephone, but he only uses it when he is told to. It is never spontaneous. Most of his calls are to me, to tell me he is leaving work and again to tell me that he is home.

Much of the conversation with me when he calls is a script. There were a few times that he was late calling me to tell me that his transportation arrived. Wondering if he had just forgotten,  I called him and he told me he was “going home nowwwwwww”, which is what he tells me every day. As it turned out, he was not in the car – he was not going home. The car was running late. He has his script and he rarely deviates from that script.

It was a very long process – a very long process to teach him how to get into the house by himself. Because I work and because his dismissal time from school seemed to get earlier and earlier with each step up (from elementary to middle school to high school), I was always worried that, due to traffic or some other unforeseen circumstance, he might arrive home before I did. I wanted him to be able to get himself in, lock the door and call me – just in case. That whole process is a blog for another day.

He does now have someone after work that comes to the house and is with him for life skills and community activities for 2 hours a day. Still, there might be times when his car is early and he arrives before his aide does. It does not happen often but do I always want him to be prepared.

Having said that it does not happen often, coincidently it this happened twice just recently….

The Phone Rings:

DC: Hi Mom, I am home.

Me: Hi, DC. Is Mrs. H there yet? (I knew she wasn’t, but would be there in seconds – but still I like to try to get the correct replies)

DC: No.

Me: Did you lock the door?

DC: Yes

Me: Did you lock the door?

DC: No.

Me: Please go and lock the door. You are supposed to lock the door as soon as you come home.

DC: Okay

Me: Don’t hang up! (He does not understand that he can just put the phone down, lock the door and come back)

He hangs up…

and second later the phone rings

DC: Hi Mom, I am home again!

I mentioned his “Going home nowwww” script above. He uses the same script every day. Once in a great while he will change it up a bit, but it does not last. He reverts to his regular script the next day. As I also said above, I can’t take his scripting to be what is actually happening. Fortunately he always talks to me on speaker, so if what he is telling me, is not what is really going on someone – his boss or the driver will chime in to give me the real story.

The other morning DC, as he does every day, announced that he only had “Two Dollars Left” . This is always his way of telling me he wants money for hot lunch at work. He doesn’t understand money and I think he believes I have a never-ending supply of it in my wallet. I discovered that I didn’t have any cash so I told him he would have to make his lunch that day. He was not happy about this at all and began to get very demanding about money for hot lunch. I explained to him again that I didn’t have any money to give him for lunch and if he did not stop behaving this way, I would not give him lunch money any more and he would have to make his own lunch every day.

He stopped.

When he called me from the car on his way home that afternoon – he went right into his normal conversation:

“Hello Mom”

“Hi, DC. What are you doing?”

“I am going home Nowwww”

“Did you have a good day?”

“Great”

“Okay, call me when you get home”

“Okay”

That morning’s conversation must have been on his mind all day because before he hung up he yelled

“I want Mom’s money!!!!!!!!”

I could hear the driver laughing and I really couldn’t help laughing myself. I guess when there is something that is really important to him, especially when there is food involved, he can and will go “off-script” to make that perfectly clear to me.

….and they cancelled Halloween – Part Two

~As you may have read in Part One – during the “Halloween Nor’easter of 2011, we lost power on Saturday night, October 29th~ Now it was Monday.

Monday, morning came. It was Halloween and still no power. I regularly take Halloween off from work, so luckily we did not have anywhere to be. DC had his ‘un-toasted’ toast for breakfast. I realized in my fervor to find coffee the day before, I never had anything to eat (“The Storm Diet” was a ‘terrific’ diet while it lasted) – so I joined DC for some ‘untoasted toast’, went to work again on the ‘*RS Room’ and began mapping out a new coffee hunt.

Before we left on our coffee hunt, DC’s Dad showed up. He delivered a contraption that he made from a car battery. This was, in my opinion THE best thing ever! A place to charge phones, plugs for lights or whatever else I needed to plug in, although the coffee pot did not occur to me at the time, lights for DC, did.

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The downside…… he wanted to take DC with him to his house. Now of course I want DC to be somewhere warm, with power, water and without a RS Room, but on the other hand, I don’t ever want DC and I to be separated during any sort of emergency type of situation; I just want him with me, plain and simple.

Now feeling very cut off from the world, I began my ‘coffee quest’ alone. The Dunkin Donuts I found the day before was no longer open. I stopped at a nearby hotel – knowing full well that there were no hotel rooms available in the state, but I was there, so I may as well check it out. I felt silly even asking and of course there was nothing available.

Tonya, Coach and I tried to keep tabs on each other during this whole fiasco, but with my phone not really working, it was difficult. Fortunately, Tonya called while I was still out driving. She called to say that another friend, Pat, had just had her power restored. She had invited us all to come for dinner and trick-or-treating in her neighborhood. Our kids trick-or-treating together has become somewhat of a tradition. No matter how many Halloween parties DC attends and no matter how many different costumes he gets to wear before Halloween, he still wants to wear a costume ON Halloween. I, for one was tired of the stares and comments when out trick-or-treating with an 18, 19, 20-year-old alone. Going out in a group just seems to work out better.  I immediately called DC’s Dad and told him he could keep him there for the day, but he needed to be home at 5. He was not going to miss Halloween if I could help it and if Pat had her power back, it wouldn’t be long for us to have our power restored.

I kept myself occupied the rest of the afternoon alternating between working on the RS Room and searching for coffee. Finally DC came home. I got him into his costume while it was still light out. I have to say, we planned this costume well…… “Elf” complete with a snowy background.

DC was happy to see his friends, happy to be celebrating Halloween and happy to be somewhere with power. Pat and her neighbors were happy not to be stuck with all of the Halloween candy they had purchased ahead of time.

 

 

bam bam

 

Elf, “Gabriella Montez” (from High School Musical), Sly Stallone and Pebbles were ready to hit the road for trick-or-treat. Surprisingly, almost every house was ready for this last-minute Halloween. Trick- or- Treating with snow on the ground was an  experience they will not soon forget, I am sure. I will never forget it, for sure.

After covering the neighborhood, carrying full bags of candy, it was time to head home. I was still living under the delusion that this would be over by the time we arrived home that night – it was not. We piled on our “storm wardrobe”,  comforters, blankets, etc. and went to sleep. I had to be back at work on Tuesday and when Tuesday morning arrived I still wasn’t sure that there was power at the office, but off we went. Driving to work, I realized that I was preoccupied with hanging branches. This preoccupation lasted for many months after this storm. Even now, when it is windy or stormy, I find myself watching the trees as I am driving.

There was power at the office and DC was able to sit and watch some movies on his laptop. I was just considering bringing him back there that night to sleep in my office, when my mother called. Her power was back so we made plans to go there.

The next two days went pretty much the same as Tuesday. Work, home, check for power, work on RS Room, pack some things and go to Grandma’s before it got dark.

In the morning –  stop home, check for power, work on RS Room, go to work with DC. I really have to say that for a child so very afraid of storms, lightning, clouds, thunder and the power going out – he was a real trooper. I was proud of him. It was almost as if he was able to put his fears and the behavior that goes along with those fears on hold for the duration of this storm and aftermath.

On Thursday night at about 8pm, I called my landline – another thing I did regularly when we were out of the house, and the machine picked up! We had power!

My mother wanted us to wait until morning to leave but I could not think of anything else but getting the RS Room working and clean. DC was beside himself yelling, “My powers is back!” (DC-speak; his powers)

Home – RS Room fixed and clean – everything went quickly back to normal.

All but one party was rescheduled – our “cancelled Halloween” had become a weeklong event running into the second week of November.

Best Buddies held their party on the following weekend – Pebbles and Bam Bam attended – with “Gabriella Montez”, and Best Buddy, Steve of course.

 

Many of the surrounding towns officially cancelled Halloween and rescheduled it for the following week – our town did not. We did receive a flyer in our mailbox from a neighbor with young children asking that the neighborhood join in for an hour-long  trick-or-treat on Saturday night. DC and I participated and then headed out to the next town over – where Halloween was officially rescheduled – to visit a friend and celebrate “Fake Halloween”.

We just happened to have one more unused costume set on-hand that we could not let go to waste.

“Yes, Captain Hammer’s here, hair blowing in the breeze. The day needs my saving expertise”*

Because “A man’s gotta do what a man’s gotta do” * (and a Mom too)

 

I do understand that others had it much worse. My friend Steve had no power for 11 days. 11 Days!!!!! I would have had to just move away at that point. I hoped that because DC had gotten to the point during this whole ordeal where he seemed to be able to put his fears aside, that this new attitude would carry on through to the next storm – it did not.

School had been cancelled throughout this whole power outage. Between hurricane Irene in August and the Halloween nor’easter, all snow days had been used up for the school year and it was only early November.

On the UP side……….. I did loose 5 pounds on the Halloween nor’easter diet and I did get one of those store-bought contraptions from DC’s dad for Christmas that year.

It does have to be charged every few months and each time it comes out, DC gets nervous.

 *RS Room – Raw Sewage Room

(*Joss Whedon’s “Dr. Horrible’s Sing-A-Long Blog – 2008)

….and they cancelled Halloween (Part One)

(In a recent post, Second Star to the right……. and hang a left, written about our ‘escape’ from hurricane Irene, I mentioned that we were not as lucky a few months later)

It was Friday, October 28, 2011 we were gearing up for a marathon Halloween weekend. Now,  I can be a lot of pressure on Halloween, I know this, but my friends seem to put up with it and fortunately DC loves Halloween as much as I do, so the “pressure” is not too much for him; he enjoys it.

On Friday night we met my friend Coach and her daughter, Candy at the haunted mansion. The ‘kids’ looked quite terrified, but they made it through. DC, although he looked like he was about to fall apart, wanted to go again, while Candy decided to sit out the second go-round.

Mansion

Coach, Candy, DC and I met Doug at a local diner for dinner afterwards. Doug was leaving that night for another leg of his quest to golf in all 50 states. He would be away for more than a week.

After dinner we all went home to get prepared for the 3 party marathon we had scheduled for the following day, one more on Sunday and then of course, Monday was Halloween. Usually the parties are spaced out a little more, but this year they were all crammed into the same weekend. It took a lot of planning costume-wise. The parties were back to back, and DC has grown accustomed to having a different costume for each party and another for Halloween itself (I love this child!!!) so I had to plan the best way for him to make quick changes between each party.

Saturday was a beautiful sunny day. I took this photo at noon outside the house right before we left to meet Tonya and DC’s friend, Salli at their house to begin our marathon.

Puck before the storm

As soon as we arrived, Tonya told me that her husband, Rick mentioned that the weather people  were predicting snow; heavy snow. He warned that it could get really bad out on the roads and there still being  leaves on the trees, may make matters worse.

What????

It’s October!

How much snow could we possibly get in October?

(We totally missed the “leaves are still on the trees”, point – What could that possibly have to do with anything?)

We decided that he didn’t know what he was talking about and even if he did – the sun was still partially shining – this probably would not even begin until much later in the day. We were used to the weather people making a mountain out of a mole hill, so we decided to go full speed ahead with our party plans.

It took only 30 minutes to arrive at Camp for the party. The change in the weather in those 30 minutes was drastic!

The snow was really coming down!

Puck in the SnowSalli in the snow

Still in denial about all of this….How long could this possibly last – It is October! We went inside and joined the rest of the party-goers that were probably in much denial as we were. It seemed as though everyone that RSVP’d  attended and no one left early. It IS October, after all.

We met up with Coach, Candy, Katie and her daughter, Kate (who was dressed as Ariel; this made DC’s day). No one seemed overly concerned about the snow, the party went on as if nothing was going on and we really intended on moving on to the next two parties…..
until we had to get back on the road, that is….

roads

Okay, so maybe we should skip the other parties – they had already been cancelled at this point, we just did not know that.

Katie and Kate witnessed a terrible accident on their way home, but made it home safely. Coach and Candy got home safely as well. We arrived at Tonya’s house to find her son in the driveway, looking at the very large tree branch that had fallen on his car.  Okay – got it –  “leaves still on the trees” – it finally clicked. Their power was out. Tonya went into panic mode (panic mode is usually my role – Tonya is normally relatively calm about everything) – yelling at everyone to get out of the driveway and out from under the other low-hanging branches. Her son, on the other hand, looked relatively calm about the branch laying on his car. DC and I got into my car which was parked under another very large, now very low-hanging branch and started home.

Okay, allright, I’ll say it…….. Rick was right.

We live only one mile from Tonya’s house but it took us 45 minutes to get home. DC was stimming wildly and scripting loudly about the power – his worst fear – all the way.

We made it home and YES we had power, a little unbelievable as our neighborhood seems to lose power quite often, but we did have power and we were thrilled.

Home safely, WITH power, DC and I went about our normal routine assuming that all of this would be over by morning. Within 45 minutes of our arrival home, the power went out. DC was screaming from the bathroom, I told him to stay there, got a flashlight and went up to get him. I hunted about for more flashlights, got DC’s pillow and blankets and brought them down to the living room. THIS IS THE MOMENT, right here that the “sleeping on the couch” situation began. 3 years later, we are still sleeping on the couch most nights.

It was early but I tried to convince DC to try to go to sleep and the power would surely be back by time we woke up – I really believed that, I really did. Of course I had to stay right there on the other side of the couch, so I tried to get some sleep as well.

We woke up on Sunday morning and still no power. Still convinced it would be back soon, DC had breakfast, under protest. Even though losing power is one of the things he obsesses about, he just can not understand that I can not make toast. He can have bread with Peanut Butter (something he ate everyday for lunch), but it was morning and mornings are for toast, not bread. There was plenty of other non-refrigerated items that he could have, but no, he HAD to have toast. He finally gave in and had some “un-toasted” toast and we set out to find coffee.

My landline was down, my cell was only working sporadically. Most of the time, I had to drive to the center of town to get any reception at all. We kept taking short trips throughout the day in search of coffee. I didn’t want to drive too far as with no information to be had, I never knew what we’d be driving into, but on the other hand I needed coffee and DC needed something to do. He loves to and will read his books for hours, normally, but not during a power outage – he is just much too distracted and upset to do any of the things he normally would do.  I have driven him around for hours in the past when we had an outage, but this was different, there was really nowhere to go, trees and branches were still falling and I didn’t want to waste gas. I didn’t know where we would find an open gas station.

It was a very odd and unsettling feeling not really knowing what was going on out there. I felt cut off from the world. Between feeling cut off  and my “dropping dead and how long will DC be alone before anyone knows?” obsession – I was not having a good time.

The day was spent, dealing with what I affectionately named the “raw sewage room” -RS Room for short –  (Did I forget to mention that DC clogged the toilet the very second that the power went out? Did I forget that?) – and taking quick, not too long trips to find coffee. I did finally find a Dunkin Donuts (because apparently I always do) open at about 4pm. They did not have power and were just about out of everything but coffee was still available.  I’m not quite sure why or how they still had relatively hot coffee available with no power and I did not ask; I ordered the bucket size.

At this point, DC was no longer fixated on the power coming back, he was just defeated, very quiet, no emotion, just going through the motions. We got ready for the night to come, I made another attempt at fixing the “RS room’, we read for a while and went to bed. Worried about the cold, I had DC wearing thermal underwear, thermal socks, slippers and his very heavy robe. I began piling blankets and comforters on us and at the point when he had just about enough, he yelled, “Mom! I don’t want to be warm!” – of course he wanted to be warm, but it was his way of telling me that I was putting way too much stuff on him.

Monday, morning came. It was Halloween –  and still no power. Halloween was looking grim!

To be continued in “and they cancelled Halloween- Part 2”

(Happy Halloween to you all! Keeping our fingers crossed for No Storm today!)

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………………….