Monday, November 30, 2015

Please Press One

Will it go round in circles – Paperwork and “Please Press One”

or: “For No Help What-So-Ever; Please Press #1”
and Contact Numbers that rarely bring one to an actual person…. “Please press One”
or “Please complete this form. A form that you or no one you know will ever be able to understand – we do not even understand the form and can not help you in any way,  but we do expect you to be able to complete it by…..”
Not a fan of the paperwork. (click here for a fun romp through our state’s system)
Not a fan of the mountains of unnecessary mail that comes my way.
This (4 page) letter is to inform you that you have been assigned a new contact – Effective immediately, your new contact is: Customer Service at 555-5555.
Is it really necessary to send a 4 page notice at a cost of close to $2.00 in postage to both DC and myself to inform us that our new contact is “Customer Service”? Especially since the last 4 times we were notified of a new case manager their name just happened to be “Customer Service” as well.
I have developed a real aversion to opening my mail – ask anyone that has ever seen my kitchen table. Fortunately it is only DC and I that have to use the kitchen table , so there is still room enough for us, for now.
I have been a single mother for about 22 years so all of this paperwork has always fallen to me. In my opinion, the paperwork got worse and more confusing after DC turned 18. At this point, I am used to it and it is more annoying than anything else. Why do we have to do the whole probate thing every three years? Is it to make certain that DC still has autism? Two redeterminations every year, a social security report once a year and an audit anytime they feel like it. Reporting his wages every month – which really is not a big deal in the grand scheme of things – but sitting though that automated system can drive one to want to ‘slam head on table’. There is an app for this now and when it is working, is much easier. When it is not working we have to resort to the ‘slam head on table’ automated system. After using the app or the ‘SHOT’ system, I receive 2 letters, one for me and another for DC, thanking me for reporting his wages and an estimate of his upcoming benefits. Later in the month I receive two more with the actual amount of his benefits. Four letters every month at more than 1.00 in postage each. It seems like such a waste of money and resources to me, but what do I know?
DC’s father’s only contribution since DC turned 18 is health insurance. He retired from the police force before the pending contract took effect when they would have had to begin to contribute for dependent coverage,  so as it stands DC is covered at no charge.
A few weeks ago, I received a letter from the insurance company. It was a good sized envelope – more than one page, I was sure – so I let it sit for about a week or so. I finally decided that I really should open it since I don’t normally get mail from the insurance company. The insurance is not in my name so the mail usually goes directly to his Dad. His insurance is one of the few things that we really have not had any issues with over the years.
What would normally happen here is:
  • I would read the whole thing –
  • Give it to his father the next time he came to pick up DC –
  • Explain what is was all about –
  • Explain in detail what he had to do to take care of it.
But….. I had just finished DC’s redetermination (a good 10 pages) and completed another redetermination over the phone at 7:00 am on a Saturday morning (yes, they called at 7am on a Saturday because they were “working overtime” which, I assume must mean that if they are up and working everyone else should be), so after reading one paragraph, I decided I was just not going to read it at all. I would just give it to his Dad.
From the paragraph I did read I gathered that this was about DC’s ER visit after his first seizure in June. I also surmised that they were not willing to pay the amount that the ER doctor had charged for the visit.
I gave him the letter the next time he arrived to pick up DC. He looked confused – just staring at the pages. I did tell him that I was boycotting paperwork that was not mine but did explain to him what I thought it was all about…. reasonable and customary etc.
So off he went straight on into his first foray through the world of paperwork, forms and 1-800 numbers.
The following week he came back so beside himself at the amount of time he had spent calling numbers that provided no information at all. He was convinced that they were just sending him ’round in circles.
I had to laugh – not at him,
…maybe just a little…
but at how perplexed he was over all of this. Until then he did not realize just how much nonsense I and others have to go through just to have a question answered – just to talk to a person. And this was just the insurance, not any of the agencies that we all have to deal with.
He said that he did actually get to speak to one person who gave him yet another number to call that turned out to be some sort of factory in Minnesota.
He was done at this point (and yes, I was still laughing, not at him – well maybe a little – but at his reaction to the whole thing – it was all new to him).
He left me with a stamped self addressed envelope (because he was leaving for Florida for the winter the following day) to send him any bill that I might receive so he can just pay it. He was so beside himself that he was willing to just give up and pay whatever they wanted in order to never have to call them again.
That may have been their plan all along…
and welcome to my world…..

Sunday, November 22, 2015

RI Comic-Con Part 1

“Don’t you cry no more” #Supernatural

Earlier this month we attended Rhode Island Comic-Con in Providence. It was an experience to say the least.
(I have a lot to say about our visit to the Rhode Island Comic-Con. Some good; some not so much. Everyone we met was very nice. Now I understand that they are supposed to be, but we all know that it isn’t always the case. There were a few people who were just extraordinarily wonderful to DC, so I want to be sure I mention all of them. Because I have so much to say about the entire event; Autism-related and not,  I have decided to split the story up into a few parts, by category rather than in order by the day) 
Let me first say that I am a huge fan of  Jim Beaver. I have been since his time on Deadwood.  Jim Beaver was one of the reasons I became a fan of Supernatural – yes, Sam was Dean on The Gilmore Girls so I may have been leaning in that direction anyway, but Jim Beaver gave me the push I needed.  DC is also very aware of the show, but other than Sam and Dean (who were not there), Jim Beaver (aka Bobby) is really the only other cast member that I knew for sure he would recognize. Why is DC familiar with Supernatural (or the “Don’t you cry no more” show) you ask?
Well DC loves music, but his musical choices do not usually come from what he hears on the radio unless it is a Disney song or a song from a movie he has seen. There are only a handful of songs that I can think of that he knows specifically from the radio – Carry On Wayward Son, just happens to be one of them. He zoned right in on the “Don’t you cry no more” line and it has been a favorite of his since.
For those of you who may not be fans of the show, Carry On Wayward Son opens the last episode of almost every season. DC picked up on that right away and as everything is related, he began watching the show.
We didn’t have a lot pre-scheduled for Friday night at Comic-Con. One op I had scheduled was Brent Spiner who had cancelled his appearance a few weeks earlier (“From this moment on, you are my mortal enemy!”) so I thought we would use Friday night to just go and get the lay of the land before Saturday when I was sure it would just be mobbed. We really did not expect to see many people or do very much that night, I just really wanted to figure out where everything and everybody was going to be. As it turned out, Friday was the best day of the event for us. It was not crowded at all and we got to do and see an awful lot.
As we were walking and looking around I noticed that there were no lines at many of the autograph tables. Then we came upon the “Don’t you cry no more” room. The first table belonged to none other than Jim Beaver (be still my heart) – he was not there but the tablecloth was not turned up covering the photos for sale as others were so I assumed that he would be right back. We did have a photo op scheduled with him on Saturday, but photo ops are usually very hurried, so I thought this would be a good opportunity for DC to see him and not feel so overwhelmed and rushed. When we went over to stand at his table and wait, a boy who looked to be about 12 came over to us and asked us if we were in line. DC, who seldom initiates a conversation or a greeting, took one look at this boy, who looked just like a younger version of his friend *Ron from Camp and excitedly in his high-pitched squeaky DC voice squealed  “Hello there! My name is DC Last Name. How are you? It is nice to meet you!”. He grabbed his hand and shook it so hard the boy’s entire body was shaking.  The boy was so very nice.  He was not taken aback by DC’s squealing  and excitement. The smile never left his face. He answered him, let him shake his hand again and told him his name (which unfortunately I do not remember). He then went back to stand with his mother just outside the room.
While we were standing there, I noticed Samantha Ferris at the next table. I asked DC if he wanted to go over there while we were waiting. He said No – he didn’t want to get out of line – even though we were the only ones in said line;  we were in line and in DC’s mind, that was all there was to it. I told him that we would not miss Jim if we went to the next table for a minute. Samantha is a pretty woman with long hair so I knew he wanted to go over there if not for anything else but the long hair  but…. he was in line. I finally convinced him that we could go and come back to Jim’s line afterward. He finally agreed.
Once there, he did get very excited. He told her his name and told her where he lived. Again, he was more conversational than usual. She was wonderful with him. She asked me questions but she also directed some questions to DC (which we know does not always happen). She asked how he became a fan and I explained the song connection. She sang a few bars of ‘Carry On’ for him – which just thrilled him to death. She asked him if the show ever frightened him. He said “No”. I began to explain to her how we talk about the fact that the show is only…. – DC piped in with – “Make-believe”. We talked about one of the loves of his life, Felicia Day (a recurring character) who he had the opportunity to meet a few years ago at NY Comic-Con. Samantha certainly added a new fan to her list that night!
DC and Samantha Ferris
DC and Samantha Ferris

As soon as we were finished there, DC immediately wanted to go “back to the line” (there was still no line) and Jim had not returned. Samantha told us he would be right back, so back to the “line” we went. DC started getting a little bit anxious while waiting but fortunately not too over the top. Someone ran by us and said “We’ll let him know someone is waiting” and before I had the chance to finish telling them that it was not necessary to rush him, they were gone.
Eventually when he did come out, he looked a bit out of sorts; not the “I don’t want to be here”  out of sorts – he looked as if something was wrong or something had happened. I felt bad and hoped that the powers that be did not make him come out just for us. He apologized and said there had been a slight emergency, which I absolutely believe due to the almost shaken look on his face. Now I felt even worse. Of course the first thing out of DC’s mouth was “I have been looking all everywhere for you”.  Then for some reason, probably because he was zoning out a bit at this point , he called him “Jake” instead of Jim or Bobby. He got his “DC picture” as he called it, so he was happy.
We turned to leave and there was the boy from earlier. DC again very excitedly , shook his hand, gave him a hug and told him he loved him (the asking permission before hugging anyone rule went completely out the window that weekend) – the boy, as before, went along with all of it thankfully.  What an extraordinary child! I wish I could send him many gifts!
During the course of the weekend we ventured back in to the Supernatural room many times.
On Saturday he met Curtis Armstrong (Metatron – aka “The worst angel ever”), Mitch Pileggi (Samuel)
DC and Curtis Armstrong
DC and Curtis Armstrong

Mitch Pileggi and DC
DC and Mitch Pileggi
and Alona Tal (Jo).  There was no explanation of character necessary for DC here – she is a pretty blonde and that was all he needed to know!
Dc and Alona Tal
Dc and Alona Tal

Supernatural room = Success!
Saturday was even more crowded than I expected.
We had three photo ops scheduled on Saturday. I purchased Jim Beaver way back in July and the others at later dates. The only information listed when purchasing a photo op on-line was the day; Friday, Saturday or Sunday.  When they did finally post the scheduled times I discovered that Jim Beaver and another were listed at the same time. I have to imagine that this happened to many other people as well.
On our way to the most unorganized photo op room I have ever seen, DC announced that he needed to “Flap his Wings”. It was just too crowded for him to flap where we were at the time but we did manage to find a corner almost under the bleachers for him to flap. I had him jump up and down a bit too while we had the space,  just to try to get it all out. Then we headed to the area where the photos were to be taken. Jim Beaver was scheduled for 12:45 – 1:15 and the other was scheduled for 12:45 – 1:30. We we decided to get Jim Beaver done first. Explaining the conflict to a volunteer in order to find out how early we could get in line for Jim Beaver, I took out my printed ticket with bar code that clearly stated: You must present this ticket with the Bar Code and your e-mail address to double check the time I had written on the ticket. She looked at it and told us we could probably get in line at about 12:30. We walked around a bit and revisited the “jump and flap” area for one final go. Then we went back to get in line at the time she had given us. I gave the same volunteer my ticket and she said “Oh no, we can’t take those paper tickets. You have to get in that line over there and trade them in for cards.”
I followed the direction of her pointing finger to the mob scene, she referred to as a line, and questioned the ticketing process. This was supposed to be our ticket. “I don’t know, I’m just a volunteer, but don’t worry; he’s not here yet”. Firstly, I can not tell you how many times I heard “I don’t know, I am just a volunteer” that day and secondly, the issue was not whether he was there or not, it was about trying to get closer to the front due to our time conflict. We went over and got at the end of  the “card” line. While waiting and out of the blue, DC decided to hug the man dressed as Mr. Spock who was in front of us in the card line. Fortunately again, Spock had no problem with this random hug from a stranger. He explained that he has three children on the spectrum, so he was not fazed by it at all. We talked special needs programs for a bit until it was our turn to trade in our tickets. We finally made it out of that line with our “cards” but by the time we got back to the photo line the entire fenced in area was full and our place in line was outside of the roped in area. The volunteer saw us and yelled. “Don’t worry, he’s not in there yet” – again, not the point!
(I will revisit these paper tickets and photo op lines again in another post)
Doug, who unlike me can usually put up with just about anything, went ahead and spoke to a volunteer at the head of the line. Shortly thereafter a different volunteer came and moved us to the front of the line. I have written before that I do not generally look for accommodations for DC and I did not here. I always want him to try. I did purchase VIP tickets because of DC but this is not Comic-Con or the convention center making accommodations for my son, that is me paying more money to accommodate my child on my own. We did what we were supposed to do. We discovered the scheduling conflict. We planned ahead to get in line early, not earlier than anyone else would be allowed to, but as early as was allowed. We had the proper tickets, only to be told that we didn’t.  So for anyone that might be wondering or is waiting to pounce; we were not moved to the front due to DC’s autism – we were moved to the front due to the total unorganized way that this event was run (there is more, trust me).
After all of this, it was finally our turn to see Jim Beaver. DC did attend one photo op on Friday night (paper tickets were accepted then and there was no mention of a card ticket). Because of the Friday op, DC was expecting Jim Beaver to be standing on the same side of the room as the person was the night before. He wasn’t – he was on the side of the room closest to the curtain where we entered. DC walked into the room, and headed straight to the other side never noticing Jim Beaver standing right there. DC was looking around very confused so  I turned him around and brought him back to Jim, who was looking rather confused himself and probably wondering what was going on.
The photographer took one picture and asked if he would take off his glasses for another. DC, who does not like to part with his glasses immediately said “No”, but he did give in and give them to me. Now he was wearing his crabby face. As soon as they pointed that camera at him, DC being DC,  immediately put on his big photo smile. One of the assistants commented about just how quickly he was able to turn on that smile. Yes, sir. That’s my boy – always the ham. One can not point a camera at or around him and not get that smile.  As soon as the picture was taken DC’s only concern was getting his glasses back. He started walking out without even saying good-bye or thank you, he just wanted the glasses. He did remember his manners after being reminded. I do not usually have to remind him but I know that all that he was thinking at this point was getting out of there before anyone tried to take his glasses again.
DC and Jim Beaver

DC (always the actor – wiping his forehead) “Phew, I did it!” 
He had his picture, he had his autograph, both of which will be added to his wall of fame at home and he got his glasses back. Even with the all of the confusion and chaos (there was more), my boy really did a great job of it. We will put the Supernatural portion of our weekend in the win column!
Coming soon: The Walking Dead, Dr. Who and his most favorite experience of the Con…
(Our internet has been sporadic this entire week. This post was written partially on my phone and partially on my tablet – typing is difficult enough for me on either of these devices but editing is next to impossible  – my apologies for any and everything I may have missed or made worse by trying to edit on my phone)

Tuesday, November 10, 2015

What's Wrong?

Keep on Tryin’

Semi-typical morning….
DC: “Mom I need help! Something is wrong!”
I run upstairs – due to his recent-ish development of seizures, I run a little bit faster with a bit more panic than I used to.
Me: “What’s wrong?”
DC (angrily) : “Nothing wrong!”
Me: “Bud, you called me and said something was wrong and you needed help. You have to try to tell me what is wrong.”
DC: “Nothing wrong!”
Me: “If you try to tell me I can help you”
DC: “Nothing wrong!”
At this point he is beginning to clench his jaw and arms to the point where his whole body is shaking. I go through the list of everything that would normally set him off in the morning:
  • Did he find a pin hole in his sock?
  • Did he get a drop of water on his shirt?
  • Does he not like the shirt?
  • Is there a tag I didn’t remove?
  • Did I move something in his room?
Me: “Okay do you want me to leave?”
DC (getting more angry): “YES!”
I take all of two steps towards my room to get ready for work when I hear “Mom, come here. I need your help!” I turn around and am right in front of the door when he decides to slam it in my face.
Me: “DC, that was very rude. You called me to help you and you slammed the door.”
DC: “I’m sorry, Mom ‘for rude’. I will never be rude again!” and he opens the door.
Me: “Okay, Please try to tell me what is bothering you and I can try to help you.”
DC (still clenching) “NOTHING BOTHERING YOU!”
I went though the list of every aliment I could think of; headache, stomach ache, etc…..
DC: “NO! Nothing wrong!”
This whole back and forth continued for another 15 minutes (one might wonder why I either just make it or am late for work every day). He wanted me there but then he didn’t, so I decided to just sit there with him without asking him any questions at all. After a while he calmed down and was back to his happy, smiling self. Whatever was bothering him was not bothering him anymore. After 24 years of trying to figure out every little thing, I had to chalk this one up to not ever knowing what the problem was. Morning issues seem to end up in the unsolved column more often than ‘other time of the day’ issues.
Ready and waiting for his transportation to arrive he said,  “You are the best Mom I ever was” – something I never tire of hearing; exactly the way he says it.
But then….
“Mom, I try so hard”
Whether this was:
  • one of those random phrases that he tends to throw out that does not mean what he thinks it means but often is shockingly  appropriate to the matter at hand
  • or mixing up his pronouns meaning I was trying hard to figure out what was bothering him
  • or he knew exactly what he was saying and was saying exactly what he meant…..
I opted for number 3. The fact of the matter is that he does always try very hard. As much as I have the need to figure it all out all of the time there will always be days when I can’t. As much as he would probably like to be able to tell me, there will always be those days when he can’t ~ and that’s all right. We will both keep on trying.

Monday, November 2, 2015

We're moving on

So… what’s next?

TimeDC tends to get very excited about many things. I hear about whatever he is so excited about all day, every day until it happens. It is always funny and a little bit predictable that when we finally get there, he loves it, he’s having fun, but then 3/4 of the way through, he begins to obsess about “What is next”.
October 31st was a triple whammy for him. After trick or treating we were sitting at the table at his friend’s house having juice and snacks ……… okay so maybe the adults were obsessing about the next Walking Dead episode for a while too (I spend far too much time thinking about that)..  I saw that concerned look on his face. He had just realized that it was the last day of the month.
  • He wore his costume
  • He had a party with his friends
  • He had fun
  • He got his candy
  • Halloween is over
He began obsessing about changing the calendars. I told him we would be going home soon and he could change all of the calendars then.
Calendars are extremely important to DC. They must always reflect the proper month. Fortunately because my desk at work is such a mess, he can not see that the big desk calendar is still on June or he’d have me pulling everything apart to change it.
There was one time when Mrs. H took him to his favorite wing place. She said he was standing at the counter having a conversation with the counter girl. She thought this was odd because DC does not have conversations in the true sense of the word. You ask a question and he will answer it, you ask another question and he will answer that too and so on. She asked the counter girl what she and DC had been talking about. There was a calendar on the wall behind the counter and he felt the need to point out to her that it had not been changed to the current month – he wouldn’t stop until she promised to change it.
I was and still am to some extent, involved and/or on boards for a few organizations and served 3 terms on a town committee. DC, many times had to attend many of these meeting with me. He has been attending with me for years and is usually pretty good about it. He brings his books, sits ‘relatively’ quietly and he knows not to touch anything that does not belong to him in the meeting rooms. One day he got up, went to the bulletin board, took down the calendar and changed it to the proper month. It must have been bothering him throughout the entire meeting.  He knew he was not supposed to touch anything but he just could not control himself.
Not only was he in his “What’s next” and “end of the month calendar changing” mindset but…..but we had to move the clocks back too – all on the same day.
Knowing what this would lead to, I had to explain to him that it would be getting dark very early now and there was nothing to get nervous about. This explanation was in anticipation of him noticing later in the day how early it was getting dark and to hopefully keep him from running to the door every 5 minutes to look outside thinking that a storm was approaching. This never works – but still I try. It happens every year and it goes on for days and days until he is finally used to it.
  • Halloween is over
  • The calendars have been changed
  • The clocks have been changed and explained
so the first thing out of DC’s mouth in the morning ….
“Mom, Thanksgiving is coming soon!”
That’s next so we’re moving on………….
change month