Sunday, June 28, 2015

But, Will There Be Cake?

cakeDC’s father was in Florida for the winter. He left in mid-November. DC did get to see him on the day after Christmas for dinner when DC, Doug and I were in Florida on vacation.

His dad came back from Florida in May for the summer. One of DC’s first visits with his dad was on a Sunday. They went to his Aunt’s house for DC’s belated birthday party. His dad was not here for his birthday and his Aunt was ill at the time, so the party she planned to have for him right around his birthday had to be put on hold. They made up for it that Sunday though. DC was happy, he loves his birthday and nothing could be better than to be still celebrating his birthday two months later and let’s not forget the cake! Cake is very important to DC!
His father asked to take him on the following Wednesday, so DC went to his father’s house and came home in the morning in time for his transportation to take him to work. It was only a few days later on Sunday that DC had his seizure. He was supposed to go to his father’s on the following Wednesday, but we decided to cancel since it had only been a few days since the seizure and I was not comfortable letting him out of my sight.
A week later, his dad took him to his Aunt’s house again, this time to celebrate Father’s Day with the rest of his family. DC came home happily listing everything he had to eat because that is what is important. (He did ask me about “cake” before he left that morning and I told him that there may not always be a cake every time he goes to his Aunt’s house…..but yes, there was a cake :) ).
When his dad returned him on that Sunday he asked if he could take him again on Wednesday. DC got frustrated and said “No! I don’t want to!”. He does this at times – he says no, without meaning to or without really listening to what he is saying “no” to. I told him not to worry, we had nothing scheduled on Wednesday and it would be fine for him to go to Dad’s. After his dad left he continued to go on about not going. I thought that he might be confused so I brought him to the calendar to show him that there was nothing going on that day. I wrote “Dad’s House” on the calendar. DC got angry and yelled “Cross Out! No!”.
From the many years spent crawling around in DC’s head trying desperately to figure things out, I had an idea about what was going on here, but I left it alone for a while. When I talked to him again a few hours later and got the same response, I decided I had to call his dad the next morning. As I said, I had an idea about what was going on but first I wanted to be sure that nothing happened, even something as small as the power going out for a split second, or the dog jumping on him, or a piece of furniture in different place, would be enough to cause this anxiety. There was nothing that he could think of.
I told him what I thought this was all about. DC hadn’t seen him in over 6 months. He was now used to not seeing his dad and only talking to him on the phone. Even before he left for Florida, he had not taken DC twice a week for many years, it was always once a week – every other Sunday and every other Monday. Now he is home and DC, with his own agenda in his head, and also quite used to not seeing Dad, feels as if Dad is “cramping his style” for lack for a better term. That, combined with his seizure and probably not wanting to sleep anywhere but home was making him a bit anxious. He loves to see his dad, don’t get me wrong, but he is used to what he is used to and it will take a little time for him to get used to something else. His dad suggested that I ask DC what day he would like to go to his house.
Later that day I did ask DC if he wanted to pick a day that hewanted to go. There was no fussing and no anxiety, it was his choice. He immediately wrote “Dad’s House” on Sunday. I told him that I would call his father to see if he was available that day. As it turned out, he wasn’t. I told DC that Dad had to work on Sunday (he didn’t, but it was easier than trying to explain “other plans”) I asked him if he wanted to make another choice. He chose Wednesday! The same day he was so adamant about not going!
Wednesday came and he was happy to go and he was still happy when he came home.
What have I taken away from all of this?
~ He needs time to get used to the fact that his father is going to be a part of his schedule again, at least until winter comes.
~ We need to make sure that DC is allowed to have some say in the matter and give him a choice of dates.
And….. you might think I am trying to be funny or making a joke, but I know my child…..
~ I am absolutely 100% certain that when I first gave him a choice and he opted for Sunday right away, it was only because he thought there would be cake……

Wednesday, June 24, 2015

Hey! That's Not In The Script!

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:
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.

Sunday, June 21, 2015

Everything Is Related - Dr. Who

Relating the things that DC loves to anything else just helps to make it more enjoyable for him. DC loves to travel, but if we are not traveling to Disney World I usually rack my brain to come up with something to make the trip more interesting and exciting for him. Recently we took a trip to London and Paris.
One of the items on our agenda would be a trip to Cardiff and the Dr. Who Experience – have I mentioned that before? :) . DC loves Dr. Who, but he gravitates more to the David Tennant Doctor and Rose. He eventually warmed up to Matt Smith, but he is having trouble relating to the Peter Capaldi Doctor.
On the recommendation of Autism-Mom we watched the Paddington Bear movie before we left. The movie is centered in London and I was hoping that he would warm up a bit to Peter Capaldi as he is a very funny character in the movie (two birds – one stone kind of relating for DC). He liked the movie and above all, it gave him a few more relatable items to bring to London and to Cardiff.
Paris London 336
Paddington Store – Paddington Station
Paris London 337
Paddington Station
So here we have the fourth installment in the “Everything is related” series.
Dr. Who is one of the very few “relatable(s)” that did not come directly or even indirectly from Disney. I happened upon the series quite by accident. I happened to be flipping channels one morning at 5am and there it was, on the Syfy Channel. I had missed the beginning and had no idea what this was or what was going on. (I had to do a little bit of research today to try to determine how long ago this was; I am guessing somewhere around 2008 as they were already into the David Tennant seasons. I assumed that the SyFy channel was showing the season that had just ended and not brand new episodes.). I discovered later that the episode I saw that first morning was“Gridlock” – it is still one of my favorite episodes.
I sleep with the TV on. Listening to whatever is on distracts me from the “mind race” I seem to have every night when I try to get to sleep. I know that I have mentioned that TNT (‘Two-Five’ in DC-speak) is the default channel in our house. I got into the habit of watching (half asleep/half awake) the 4am episode of“NUMB3RS” and then the 5am episode, fully awake with coffee before DC woke up. For some reason the 5am episode was not on the schedule on Friday mornings. Not wanting to give up my “sitting in bed with coffee ‘me-time'”, I started flipping channels searching for anything that was not an infomercial.
I was totally hooked on NUMB3ERS and when TNT removed it from their lineup entirely, I had to just purchase the entire series. But on the upside, due to TNT’s very odd Friday scheduling, I had become an official “Whovian”. I went out and purchased all of the newer revamped seasons that were available at the time.
Quite by accident again while I was watching my newly purchased Dr. Who DVD’s,  DC walked into the living room just in time to see a burping trash can. Over and above anything else, DC is a male, therefore anything having to do with bodily functions is just hilarious to him. He was hooked.
We purchased our Dr. Who Experience and train tickets months before we left on our trip. It was a two hour train ride from London to Cardiff  and then a short cab ride to Cardiff Bay. I have to say that I was just as, if not more excited as DC was.
Paris London 335
Inside was a snack area and quite a few very lifelike figures. DC did his best not to “Blink”.
Don't Blink
Don’t Blink
I did not know what to expect inside the “Experience”- I imagined something like the old Star Trek Experience in Las Vegas – a virtual ride. It wasn’t like that at all but still a lot of fun. Of course, photos are not allowed inside the “Experience”.
Star Trek Experience Quark's Bar
Star Trek Experience Quark’s Bar
The exit from “Experience” brought us into an area of props – TWO Floors (exciting!!!). Photos are allowed in this area so I am going to post a few… Please understand that I am using a great deal of restraint in not posting every single one!
Cardiff Bay, the area around the Dr. Who Experience was very pretty, filled with shops and restaurants. There was a walking tour that was part of the ticket price to the Experience. We chose not to wait and since we had a map, we took the tour on our own. To be honest all I wanted to find was the entrance toTorchwood. As it turned out it was right in that same area and impossible to miss. While DC and Doug rode the carousel, I walked over and took a few photos of the Torchwood fountain (the secret entrance to the Torchwood Institute).
Paris London 380
We had a nice lunch at Bill’s and opted to walk back to the train station. I would definitely recommend Bill’s for lunch, maybe not the walk back to the station.
We had little time before our train was scheduled to leave so we took a quick walk up to Cardiff Castle where a few Dr. Who scenes were filmed and where the Tardis landed in celebration of 50th Anniversary of the Dr. Who Series. It was only a five-minute walk from the station, but we really did not have the time to go through the whole castle. I wish we had scheduled it into our day ahead of time. Normally DC loves a castle, any castle but he was exhausted at this point so viewing it from the outside was just fine with him.
I am not going to give away what goes on inside “The Experience” itself because, you know, “Spoilers Sweetie” but I will say that DC found the final “piece of the puzzle” and inserted it into the proper place and helped to save the universe……
It was a great day all around for us, but more importantly –  for the universe.

Saturday, June 20, 2015

…and sometimes a smile is all that we need #1000speak #Compassion – Guest Post

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I was away and not able to participate in the May 20th #1000speak and due to some unplanned/unforeseen issues going on at the moment, I thought I wouldn’t have the opportunity to participate this time around…..

Then I saw this post from a friend of mine and it made me smile. It made me smile each and every time I read it and on a day when I really needed a smile.

It always seems to be those little things, the things that no one thinks about – that no one else might even notice that can just make your whole day brighter.

Below is a post from my friend, Cedar. Her son, Colin has autism, like DC, but he is much younger.  When we are used to and dread the same reactions from people day after day when we are out in public with our children, it is wonderful to see something different and positive once in awhile. On a day that she was experiencing all of those negative vibes from people in a waiting room, this small thing, meant the world to her.

DC is 24, so we really don’t get those “bratty kid” stares or comments from people anymore – not to say we still don’t get stares, we do, but not that kind. It is obvious now that he is an adult that he is not just a “spoiled brat” that I can’t control. Her son is younger. It is not that obvious, so she has to deal with those judging comments and stares everyday.

“You Are My Angel Today”
                                 – Guest Post by “Cedar”

Describing the photo:
My son Colin had an appointment to have blood work done. He had to fast before- hand so you can imagine how loud this waiting room was. He is barefoot because he threw his shoes at the receptionist.
BUT!!! I want to find this cute elderly man in the corner. He could have been mean and glared at us like everyone else, but he got up and got that chair for Colin because Colin wanted to sit by him.
Do you see that smile? It never left that man’s face.
So kind Sir, I want to hug you, I want to have you over for dinner, I want to hear your stories, but mostly, I want to thank you again for making me feel like a regular mom. You are my angel today. Thank you.
I did get the chance to give him a hug. I was crying, but I hugged him and thanked him. He was so sweet. It seemed like he needed the hug and he thanked me for letting him play with Colin. He said his grandkids live far away and are older now. I wish I had gotten his number. I emailed the doctor later and asked if they knew who he was and if they would give him my number. I hope they will. What a sweetie.

They are few and far between; but it is the moments like this that help me to keep believing in people. ~ Cedar

On a personal note and while we are on the subject of compassion, I would really like to thank everyone for their support last week. Whether it was a text, phone call, e-mail, an message or a comment. It was all very much appreciated – I am not going to list names but you all know who you are. Thank you all so very much. It means the world to me. ~ Vickie
1000speakpageFrom: #1000speak Blog:
Bloggers from all over the world are coming together to talk about compassion on the 20th of each month.  The 1000 Voices Speak for Compassion movement was born when blogger and author Yvonne Spence organized over 1000 bloggers to post about compassion in one epic event on February 20, 2015.  The response was so great that it was decided to continue the #1000Speak project on a monthly basis, with a different topic each month.
Add your voice: #1000speak Facebook Group and #1000speak Facebook Page
And don’t forget to link your post to the #1000speak linky

Thursday, June 18, 2015

#TBT We may never pass this way again – Happy ‘Co-lation’

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It’s that time of year when the red balloons decorate mailboxes all over town, indicating a member of that family is ‘Co-lating’ (DC-speak = Graduating) from the high school this week.

Every year when I start to see these balloons, I remember DC’s ‘co-lation’ and his balloons. DC always noticed these balloons around town and I always told him that when it was time for him to graduate, he would find balloons of his own on our mailbox. I think this was one of the big things he was looking forward to when ‘Co-lation’ came around for him.

Somewhere close to the end of the school year, among all of the other “senior-specific” notices that came home was the balloon order. We order them ahead of time, in any amount we wish. Knowing how much DC was looking forward to these balloons, I tried not to get carried away (because that is what I do) with an order of 12 – I decided to go with the norm – 3 or 4.

DC’s friend *Candi had been moved up a year so that she could walk at ‘Co-lation’ with the friends she had gone to school with all of her life and move on to the transition program at the college with them. Due to the crack record-keeping skills at the High School, Candi’s mother *Coach, never received any of these senior notices including the balloon order form.

(I continued to receive a report card at the end of every semester for a full two years after DC left the high school. Yes, the transition program was part of the public school system but these report cards came complete with glowing reports from teachers he no longer had, about subjects he hadn’t taken since he left the high school. Not to worry, *Coach did receive all of the “senior” notices, including the balloon order form the following year when *Candi was also no longer at the high school.)

The delivery of said balloons took place during the school day so that the balloons were there on the mailboxes when the students arrived home. *Coach actually found one of the balloon delivery people on the road and stopped her to ask if they had even one extra that she could purchase for *Candi. The woman making the deliveries told her that due to the high winds that day, many of the balloons had popped or deflated and she barely had enough to make her deliveries.

I do not remember why I was home early from work that day, I am guessing it was for a dental appointment because I seem to spend my life at the dentist, but I came home to a bunch of deflated balloons on the mailbox. Fortunately I had a little bit of time before DC arrived home so I ran around town trying to find a few replacement balloons so there would at least be something on the mailbox when he came home. There was no way he would miss seeing all of the other balloons on his way home and if he did, there were some in perfect condition right down the street that he definitely would not miss.

Red balloons were not to be found anywhere in town and graduation balloons in any color were in short supply. I didn’t have enough time to leave town and search elsewhere, so I had to settle for two blue graduation balloons. *Coach was also out on the same hunt.

I got them home in time and he had his balloons when he got off the bus. They were blue and I told him that he received a better color because he is just that special. He was happy. His friend *Candi had the same color, of course…….. because they are both very special people.

Just an added throwback; this song was THE Graduation and/or Prom song when I was a kid. Although it did come out right around the time of my 8th grade graduation, it wasn’t mine but it always comes to mind when I think about a graduation:

Tuesday, June 16, 2015

In an effort not to drive my son off the deep end…..

…..and in an effort to keep myself occupied, I am writing.

DC had a seizure last night. He is 24 years old and has never had a seizure. Other than the time he got an ear bud from his headphones stuck in his ear, he has never been to the Emergency Room or hospital. He has never been on any medication of any kind with the exception of antibiotics every once in a while.

Now that we are home, I don’t know what to do with myself. All I have done since we left the hospital is watch every move he makes and pace. I jump when he makes a noise, I jump when he’s too quiet. I am trying (but not succeeding) not to frighten him. Instead of sitting there and staring at him, which I know is making him nervous – I decided to sit and write so at least to him I am not focused on every move he makes (I am, but he is less inclined to notice). I have bothered as many friends as I possibly could already, so now I have nothing to do with myself than stare at him while trying not to frighten him and pace.

I had no intention of writing about this and I am not even sure that I will post it when I’m finished but I am finding it is helping me to talk about it, so for DC’s sake and my own – and before I make him fear ever leaving the couch again, talk and write is what I am going to do.

Yesterday we participated in a Bike-A-Thon for DC’s old baseball league, The Challenger Division of Little League. He aged out when he was 21 so he no longer plays but we had been involved since he was 5 and we hoped to see some old friends there, so we decided to sign up. We live in a duplex and right before we were ready to leave, my neighbor came out and said she was having a problem with water backing up into her basement. There was nothing we could do for her as it seemed to be a bigger problem than just a clogged drain so we suggested she call the landlord.

It was a hot day, but DC did well on his bike. We were home by 10/1030. When we arrived home the landlord asked us to use as little water as possible until they could figure out what was wrong. Later she came and said they had to call someone on MONDAY to look at it, but we could not use the water as everything was backing up into the neighbor’s garage. Great! We had just come back from a hot and sweaty bike event and now we could not use the shower or the bathroom. I thought about it for a while and decided we would check into a hotel that was close-by for the night and bring DC home in the morning in time for his transportation to work.

DC was not happy about this. He was looking forward to staying home on his computer. I was a bit surprised because he usually loves going to a hotel and we always bring his computer. He was happier once I told him we could go out to dinner.

Fortunately Doug decided to go with us. We checked into the hotel, dropped our bags in the room and went down to the restaurant for dinner. DC showed no signs that anything was wrong. He was acting his normal self all through dinner and when we left the restaurant. Between the restaurant and the elevator, which is only a distance of about 20 feet, I heard this odd noise coming from DC. I looked at him and for a split second thought he saw someone or something in the lobby that he was excited about and that he was making his normal “DC noise” but I quickly realized that this sound was different, a low roar that sounded like it was coming from his throat. I noticed his head was cocked to the side and his face was twisted. I panicked and yelled “What is wrong?”. His whole body began to convulse at which point I began screaming. Doug who works with Special Needs Adults and had just completed “seizure training” recognized what was happening right away. I don’t know if I guided him to the floor or if he started going down and I caught him, I don’t remember. Doug says I guided him to the floor. He continued to thrash and seize on the floor. Suddenly we were surrounded by hotel staff – I don’t even know where they came from and how they got there so quickly, but they had someone counting down, and another came with oxygen. I tried to keep myself together so as not to scare him and I did for the most part until we were getting into the ambulance and I called his Dad. It wasn’t until I said the word out-loud that I started to really lose it. I know someone had been counting down, but I don’t know how long he seized – it was an eternity in my mind. Doug thinks it was about 3 or 4 minutes and it was another 20 minutes or so until he seemed to be fully aware of his surroundings.

By the time we got to the hospital, around 900PM he was talking again. I could see that he still wasn’t himself. He let them put an IV in, which as I’m sure I’ve mentioned before would never have happened if he was not so wiped out by what had just happened. When I have to take him for a regular shot at the DR’s office, I have to bring Doug and his Dad as back up. Doug followed the ambulance, his Dad arrived about 45 minutes later and then my mother arrived. We had a full house but DC was glad to have everyone there with him.  We were there until 2:30 AM. He had blood work and a CAT scan. All of which came back normal. They recommended that we see his regular doctor and that she order/schedule and EEG.

We went back to the hotel because we couldn’t go home and DC slept very well. I called my landlord in the morning and the water issue had been taken care of – we were able to come home.
I will never forget that sound and his face when the seizure started for as long as I live. I am aware that seizures often accompany autism. I worried a lot about this when he was younger but once he was 13 or 14, when they usually rear their ugly head, I felt relieved and at this point a seizure was the last thing on my mind. I suppose that is why it didn’t click immediately with me what was actually happening until Doug said it.

I have been writing bits and pieces of this all day – anytime I felt like I was making him nervous, not really knowing if I’d even post it or not. It just helped me to write it. If you are reading this, that means I decided to hit publish.

We have an appointment with his doctor tomorrow to schedule his tests and I have other suggestions from friends with children that have seizures one being an EMT as well,  that I will bring up with the doctor tomorrow. But for now, I guess I just wait and hope it doesn’t happen again or we can figure out why it happened. If we can’t figure that out then I just have to hope it can be easily treated and I hope I am not scarring him for life with my anxiety over this.

I am trying desperately not to…..

Monday, June 8, 2015

What did you do today?

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What did you do today
Recently I was searching the house for something. We have no storage space so “storage” is pretty much anywhere I can stuff something and finding “said something” later often proves to be an all day event. I never did find what I was looking for but I did come across DC’s Journal from way back in elementary school.

The journal was created after many years of me begging for the teacher to write something in his book other than “Fine day overall” (one of my favorites). I wanted to be able to have a conversation, as much of a conversation as possible, with DC about his day. I wanted him to understand the question. If I wasn’t told about specific things that he had done on that particular day, and took his standard responses as fact, or guessed at what he had done and was wrong, he would never be able to understand the question. Other than lunch, the rest of his day is described with standard answers. Some of these answers may have been the truth at some point, but I am sure they are not the list of things he does everyday. Once he comes up with an answer, that is the answer I will get every day.

Even now that he is out of school and working – I get the same response every day: “DC, what did you do today?” “Good” (Some of the time he doesn’t understand the “what” of the question and other times I am sure he is just jumping the gun and giving me an answer to get this over with) “No, DC, what did you do at work today?” The daily reply: “In the Greenhouse, scooping the dirt, clean the cart” Fortunately the staff will sometimes write specific things that he did that day, so I can respond with, “Didn’t you mow the lawn today?” “Yes”

After years of not getting information about his day, we began writing a journal every night. I would type the things that I KNEW first-hand that he had done that day. I left some blanks for him to fill in names, locations or items. I included photos, so that it made more sense to him. I did add a few little jokes that helped me keep the boredom of typing this every night, at bay.

We did this every single night for a good three years. The book went to school with him everyday. I knew people were reading it, but still it took them 3 years to finally begin a journal for him at school. I came across this book a few years back during another search for something I had put away and could not find again. I didn’t have a lot of time to look through it at the time, so I put it away and haven’t thought of it since. I was glad to come across it the other day again. I’m so glad I didn’t get rid of it – so many memories. One day I will sit down with DC and read the whole thing from beginning to end.

Below are a few randomly selected pages (most from the front of the book, early on). They are certainly make-shift and not close to what I could have done today with all of the different software available (or should I say, the different software I have learned to use), but still, it is nice to have the pages and the book.

  (some names or locations have been edited for this post) journal_0001 skiing

And a Few More………
I know that his communication is and always will be a work in progress, but I do think he’s made a bit of progress from way back in the day when we were making this journal every night.