Notes. Flowers, Hearts and Apologies #MothersDay

As I wrote in Saturday's Mother's Day post, DC loves to write me notes and draw pictures for me. Much of the time, he does it when he thinks (or knows) he is in trouble for something. Sometimes though, they are just because he wants to.

Unfortunately on Mother's Day, DC had his computer taken away from him as "punishment" for something he did. ("punishment", the word he uses that he learned from Full House").

Did I want to do that on Mother's Day? No. But sometimes he has to know that what he has done is not acceptable. Some things I cannot just let go, knowing full well that I will suffer far more than he will during said punishment. I always have to decide if it is worth it. (if you are new here, you can read all about THAT here).

So instead of a post about what a wonderful day we spent together, here are some random Facebook post about his notes, flowers, hearts and apologies,

Hope you all had a Happy Mother's Day.

We are looking forward to a do-over...

His "note writing" has just been taken to a whole new level (ARC Activity)

I got a call today from DC's work/day program that he had ripped his pants. I assumed it was just a small tear but that it was driving him off the deep end so I left work to go and pick him up. When I got there, the rip was all the way from his waist to mid-thigh. He couldn't say how it happened but he did hand me this note: "I am sorry I rid (ripped) the pants on purpose" - so I have to imagine this started as a small hole and he spent the morning shredding it because holes in anything...... Not, not, not tolerable - ever.

An item added to his shopping list...

It's been a (insert expletive of your choice here) week, but these made my day! (Flowers from Best Buddies Flower arranging class on Wednesday and cards from Camp party) - #earlyvalentinesgifts 

Mother's Day Breakfast with DC

Happy Mother's Day!

An apology

TWO hearts!!!

DC is obsessed with Ella's letter to Char. He recites it often. This is the first time he's written it out. (Ella Enchanted)

Do ya think he knows he's in trouble?

DC has been on a roll today. I got hearts, a birthday cake (it's not my birthday) and roses. The funniest and most confusing one is a "Wedding Cake for Mom" . I don't know where that comes from but I just may have to burn it.

And even though he had his computer taken away .....

I still got a note.....

This blog is used for short posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time 

#TravelingWithDC - Newport, The Cape and The Party

Our annual trip to Cape Cod for my very old friend, Allison's mother's birthday bash happened to fall on Easter weekend this year.

This year...... COSTUMES!!!!

Normally because Doug does not like these sort of events and DC would not get through the entire night AND so I can have some time with my friends uninterrupted, I attend with my other friend, Rhonda. DC and Doug have a boy's night out while the party is going on. He usually makes an appearance toward the end of the evening when things are winding down.


But this year was a Costume Party, so DC was willing to attend, of course.

We left on Friday morning right after DC's blood work was done. I saved the blood work until Friday because I normally need reinforcements and Doug would be off work (as we were leaving that morning). As it turned out, I did not need the reinforcements at all (Yay!)

This was not to be an official "Looking Around" trip but we would be doing some looking around on the way up. On the way back would be Easter Sunday so dinner would be involved somewhere along the way home.

Having just said only days before that I hadn't been to Newport in such a long time, that turned out to be our first stop,

Doug was in search of the wave with feet for his annoying "Sleeping Picture" (Don't ask) and DC was in need of wings.

We found both.

In-between sleeping pictures and wings, we did a little bit of looking around even though this was not an official "Looking Around Trip". (We only spend a few hours there, so we will be making an official trip back very soon).

Of course, there was ice cream...

and the Bat Mobile????

Moving on.....

The only thing he missed in Newport was a book store, so moving on; we found one in East Sandwich, MA. We just happened upon it.

There was a cat.

Surprisingly, it went well.

We decided not to book the resort where the party was being held. It was expensive, being Easter weekend and a good chunk of the price is a resort fee for the water park, When DC started having seizures, the doctor specifically said he could no longer take baths or go swimming. Yes, everyone looks at me just the way you are looking at this page right now, but that is what I was told. I suppose I can see the reason for that. It would be hard enough getting him out of the water (he's a big guy) without having to also worry about how much water he is swallowing. So, me being me; forever anal about following the rules (ask anybody) doesn't let him take baths or go swimming. The resort fee is a total waste of money for us. We did book it last year without thinking about the resort fee but it was not Easter weekend, so it was not as expensive.

The hotel we booked was right across the street and I could be there in less than 5 minutes to help set up or for whatever reason I would need to get there quickly. This would be the third year that the party was being held at the Cape Codder (the first year it was held at the Hyannis Resort and Golf Club). DC never showed any particular affinity to the Cape Codder while we were there, but when we passed it by and pulled into the Holiday Inn, he yelled "No! Cape Cod! Missed it!"

Oops!

THEN when we got into the room there was not the typical desk that DC is used to seeing and setting up his "spot" on.

Oops!

There was a weird rolling sort of station with no chair. There was a bench that was a little bit too low to go with the desk, but we moved it over anyway and he managed.

There was a restaurant downstairs and they did have wings and cheeseburgers so all was forgiven.

On Saturday we raced around trying to find some last minute accessories for our costumes and raced over to the Cape Codder to help set up. As it turned out, after the stressful set up of the year before, Mary's friend Deena, went low key and no help was needed.

So we had time for lunch and a little more looking around.

We headed back to the hotel to start getting ready for the party.

The 11th Doctor (Matt Smith) and the TARDIS (the only costume that comes in my size) - DC loves David Tennant, the 10th Doctor, but will never pass up the chance to wear a Fez, because Fezzes are Cool.

Armed with his ever-present book,

we took our seats and waited for the birthday girl to make her entrance. We had a table to ourselves so I did not have to worry about this book being on the table all night.

Enter, 'Tina Turner' (the birthday girl):

Not bad for 75, right?

Doug was on call for a burger run if there was nothing DC would eat on the buffet, but it turned out not to be necessary. He ate the prime rib!!! And bread - there was bread, so we were golden. The man cutting at the carving station was concerned because we had been through the entire buffet table by the time we got to the carving station and DC had nothing but bread on his plate. He gave him extra prime rib AND came over to the table after to be sure he had enough to eat.

Normally DC comes to visit the party later on after the crowd clears out a bit so he was not used to the dance floor being as crowded as it was.

No problem though. He opted to dance in the back of the room and had a great time for himself.

Of course the popcorn bar and the donut table added to his good time....

He had fun and lasted much longer than I originally thought he would.

Two days later at home he did tell me, what is becoming a ritual - the after party story about the boy who came to the party and Noooooo one knew who he was (See: Cinderfella). I think that it took him two days because we did not have that long walk back to the room this year, just a short drive.

To be continued in .... The Way Home, Easter, Mystic and a Severed Arm

****

This blog is used for short posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time 

I want a job like that.. A Vent

From March

So.... because there are program changes coming down the pike at DC's work program, my caseworker specifically requested and planned this meeting around a person who could explain (hopefully) how these changes will effect DC. She was not there (she had a good reason) so he requested that another person come into the meeting since we were already there. She did not, but relayed a very vague reply to his question. So..... we now have to schedule another meeting to go over the issues we should have gone over today. Was there really no one in that building that could have answered his questions? Really? That in itself is rather frightening.

I will be writing about those changes on my Official Blog Page when I have a minute to let it all soak in. I don't have much information but what I do have seems ridiculous.

(update: I let it soak and wrote about what I could piece together - here)

From Take Another Step Facebook Statuses

****

Since the 23rd of March, my case worker has been trying to get in touch with the person who missed our last meeting. Let's call her "May" (like the month).
I explained to my caseworker that it has been my experience that her M.O. is just not to reply to anything until you get tired of asking and give up...
He does not seem to understand this and keeps trying to contact her without cc'ing the director (the only way I ever get results)

****

April 13

Venting: First there was the meeting mentioned above (where the person we needed to talk to and arraigned the meeting around did not show up)

Then, my case worker sent me a list of dates to try to reschedule the meeting with "May"; April 5, 6, 12, 13, 19, 20 or 26. All of them were fine with me at the time. I thought it was pretty funny that my case worker actually believed that "May"(like the month) was going to reply to his emails because what she normally does is just ignore you until you give up (I want a job like that). He started emailing her on March 24.

As Phil Collins would say... No reply at all..

On April 4th I emailed him that the 20th was no longer on the table because DC is now scheduled for a root canal. I can't keep the entire month open waiting for "May" who IS NEVER GOING TO EMAIL HIM BACK.

Today, I received an email from my caseworker (a cc from my caseworker to "May", because he is still trying to reschedule the meeting. It's been four weeks of trying now) asking her if she was available on 20th or the 21st.

???????

(Deep Breaths Did Not Work and now I think there might be not one but two "highly agitated" voice mails on his phone because I was waiting for the option to delete and start again but it just hung up. I then tried a second time and unfortunately was not any calmer and again it just hung up)

I just emailed him last week that the 20th was no longer an option and the 21st was never an option and not on his original list! I am not taking two days off because "May" can't bother to reply and he can't even get the dates right. Of course he sent the email at 5:59 PM, probably right before he left the office for the long weekend, because isn't that always the way?

I have a job. I am expected to return phone calls. I am expected to return emails. I am expected to keep schedules straight. I know this may sound like a trivial thing to get upset about, but just about everything has gone this way for what seems like forever now. 

(Just to add to the hostility I am feeling; I had another annual re-determination with social security yesterday. I say "another" because we just did this in September. I must be on some list. Received the letter last week that I had to contact them by the 12th - I had to call them 4 times to get anyone to call back. THEY WROTE ME! THEY SET THE DEADLINE DATE. THIS WASN'T MY IDEA SO WHY SHOULD I HAVE TO CALL 4 DIFFERENT DAYS TO GET SOMEONE TO RETURN MY CALL?)

So anyway, once again I will look like the the B#&%h

From Facebook Statuses at Take Another Step

****

On Monday the 17th, I received an email from my caseworker telling me he had emailed "May" that day about the 26th (the only date left on the list)

April 20th - I emailed him to ask if he'd heard about the 26th because I did have to schedule it with work.

No Reply at all...

*****

On April 25th - late afternoon/early evening - I emailed my caseworker to say:

I guess at this point that the 26th is out. Do you want to send me new dates in May so we can do this again all next month too?

*****

On April 26th in the afternoon I received an email from my caseworker.

"My Apologies, "May" did email me yesterday (the 25th) saying the 26th was good and I missed the email. How about May 4th?"

******

I'm done....

****

Tales from the Day Program – ALL

***

This blog is used for short posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time 

Just maybe he's getting used to the dentist too?

(Recent Facebook Statuses about the Dentist)

Two weeks ago
At the dentist with DC, realizing that I am actually sitting in the waiting room and trying to remember just when that change happened. 
#ItHasNotBeenAllThatLong 
#MomGoToTheOtherRoom

From Statuses at Take Another Step

****
Two weeks ago
Just learned there is a root canal in his future. This whole "over being afraid of the dentist" may be coming to an end...... sigh. 
I get so wrapped up in the "Autism" of it all that the regular things that everyone has to do, like a root canal, totally throw me when they come up. Even after all of this time, it is always as if it has just hit me that "Oh, yes all of these regular things (like wisdom teeth, tonsils, root canals) can happen too". 
 Still have 2 weeks to talk to him about it and hopefully get him ready...

From Statuses at Take Another Step

**** Root Canal Day

Hoping that our success with his blood work last week carries over to his root canal today. So far he's treating it like a regular dental appointment and I tried to explain it just that way by telling him that his cavity is bigger so it will take longer to fix and he might need help keeping his mouth open that long. Fingers Crossed.  #MomIsSweatingButWhatElseIsNew

From Statuses at Take Another Step

 *****
I have to say that I was nervous about this. Until earlier this week when he had to get blood work, his regular dentist was the one and only person who has ever been able to give him a shot or use a needle without me having to bring reinforcements to hold him down. 
But blood work was one thing, Novocaine is entirely another thing. He has had Novocaine with his regular dentist but he uses some sort of vibrating thing so DC really never knew that there was an actual needle involved. (Why is this not standard equipment in all dental offices?)

This was a different dentist with no vibrating needle....
I had scheduled it to be done all in one visit because I was afraid if he got too upset at the first appointment, it would be a battle to get him back for a second visit.

 Doug, who gets a little claustrophobic during root canals himself, was more than a little concerned - so I spent the time giving him updates as we went along.

He got through the needle and the big thing they put over his mouth. That, right there was the battle in my mind.

He did start to get upset toward the end. It was a lot, but he made it through.

The aftermath (of him holding himself together for so long) was not fun at all and it took him a long time to calm down after we left the office - but even that happened to a much lesser degree than I expected.

I think we are finally turning a corner here....
(she says, quietly while knocking on wood)

****

This blog is used for short posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time

The Doctor..... we've come a long way

(A collection of  random Facebook Statuses about the doctor and blood work)

******
Last Month

We have an appointment with DC's neurologist this morning - the man who for some reason can not seem to get his blood pressure in one, two, three tries - which always serves to aggravate DC to no end. The last time DC was so angry the doctor asked cluelessly "Is he acting that way because he is trying to tell us something?" - UGH!

From Statuses at Take Another Step

I needed to get his blood work done before his next visit in May. This is always stressful. DC never had blood work until he had to begin taking seizure medication in 2015. Fortunately the medication he is on does not require blood work quite as often as some of the others do. This would only be his third time (Read about the first and second here)

*****

Blood Work Day

Off to have DC's blood work done. Fine way to begin a long weekend. He was singing "DC" the Brave" last night so he does understand where he is going... He was a little bit obsessive/anxious about it yesterday but so far this morning - he seems fine. Fingers Crossed!

(Clip from his first time having blood drawn)

From Facebook Statuses at Take Another Step

*****
He started getting very anxious as soon as we walked out of the door. It got progressively worse as we waited in the waiting room....

This was the best one yet. I think we're turning a corner...
**************

Next week we move on to another "something new"; a root canal. That should be an adventure.

****

This blog is used for short posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time 

Transportation Breakdowns. Water Bottles and Delayed Reactions

(A collection of Facebook Statuses)

Friday:

DC's transport broke down on their way to work this morning. They had to wait for a van to come from the agency to bring them the rest of the way. Knowing this was going to throw him, I face timed with him while they were waiting. Both DC and *Salli were a little bit upset (I think mostly worried that they were late) but they survived. 
In the confusion, DC lost his water bottle. 
I know this because he went "off script" when he called me this afternoon and told me that he lost it. The driver said he would check the broken car and have the agency check the van, on Monday. DC is very concerned that he now has to wait until Monday. This will be the topic of conversation all weekend. 
Happy Friday! 
#UnfinishedBusiness

From Facebook Statuses at Take Another Step

Later:


Update: the water bottle has been found. It was in the car that broke down. He will have it back on Monday. It's not as if he has an attraction to this particular water bottle, it was just that he knew it was lost. Now he knows it's been found and even though he doesn't physically have it - it's fine. It's been found. #TheWeekendIsSaved

Monday:
In case anyone was concerned.... DC was quite successful in his mission of spreading Autism Awareness to the entire neighborhood, outside at 7:30 AM. 
I hate it when his day begins this way
:( 
#WeHateMondays

From Facebook Statuses at Take Another Step

DC's reactions to things often come much later than the actual event he is reacting to. It takes some doing to try to figure out what is happening because by the time he reacts, I have forgotten about whatever has happened and since he did not react at the time, I don't have any reason to believe that it bothered him.

I have written about this before here.

Monday mornings in DC-land are not always the best. Sometimes they are just brutal. As Monday's go, we were having a pretty decent morning. Right before his transportation was due to arrive, I saw that change in his eyes that I see when he is getting anxious.

I asked what was wrong.

"Nothing wrong!"

The driver arrived and got out of his car with the water bottle that DC had been so concerned about on Friday and walked up the sidewalk to give it to me. Since he already had a different bottle filled, I went to bring the other one in the house but he was not having it. He wanted to keep it with him. Thinking that the water bottle was the cause of his anxiety, it was not a problem for me to let him take it with him.

But then "IT" began and went on loudly for quite some time. Fortunately in the midst of this spreading of awareness, he yelled "Broke Down!".

He wasn't reacting to the water bottle at all, he was having a reaction to the van breaking down on FRIDAY! He seemed fine while they were stuck and I was face-timing with him. His only concern when he got home was his lost water bottle and after he knew that had been found, I never heard a word about any of it..... until Monday morning.

Monday's vehicle was not even the same vehicle that had broken down, but apparently the car breaking down had bothered him more than he was letting on.

The driver and I had to convince him that this car was not going to break down. I do not like making those kind of guarantees to him because as you know, anything can happen - a flat tire - anything. Under my breath, with clenched teeth,  I prayed to the automobile gods that this car "better not break down".

Usually, due to a good amount of experience with his delayed reactions, I can eventually figure out what is going on, but this time I would have put money on the fact that this was all about the water bottle. If he didn't yell "Broke down!", I would have spent all of that time trying to console him about the water bottle. Which probably would have made things worse.

DC and I have officially done our part in spreading autism awareness this month. At least to the people living in our neighborhood because "Monday's" do not usually happen outside and if they do, not for that amount of time......

The car did not break down,(Phew!) he had his water bottle so all was well by Monday afternoon.

****

This blog is used for short posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time

DC Speaks on Fantastic Beasts

                    (From Facebook Status)
In my never-ending quest to get DC into something other than Disney movies (and no, I would never try to replace Disney, just expand his interests) I got him to sit down with me and watch "Fantastic Beasts and Where to Find Them" on Sunday.

This is a big deal. As much as he loves movies, he generally does not want to sit and watch one with me, because he cannot rewind the same scene 47 times and he also feels like he is missing out on his weekend computer/movie time when I ask him to sit in the living room to watch something with me.

(He also tends to fall asleep when he watches something new while sitting on the couch)

I began telling him days before that we were going to watch this movie so he would be ready and expecting to miss some computer time.
I explained that it would be something like Harry Potter. He really likes Harry Potter, although only the first and second movie when they were young. Once they began to age, he was done and only just tolerated watching them for me. Generally he would do it for the popcorn and fall asleep as soon as that was gone.

Well....
He stayed awake for the entire movie and.....
HE DIDN'T WANT POPCORN!
Yes, you read that correctly. I had to take his temperature, just to be sure he was not getting sick or something.

First, Let's just mention, New York City (even though it was NYC, a long time ago - it was New York City, his favorite place!) -
That in itself held his interest until we made it to the beasts.

He actually was able to tell me about it, somewhat afterwards.

DC's Cliffs Notes and Review of Fantastic Beasts and Where to Find Them.

Me: DC, did you like the movie?

DC: Good!

Me: Can you tell me some of the things that happened?

DC: Goblins (eww)

They fit in suitcase 

A lady

Crushing the wall

In New York City (my favorite place) 

Went to the forest in the suitcase - get back to New York City.  Snowing 

We went to Central Park

Tried to get it back 

Firefly's - arms - eww - shoo shoo. 

Big mess in the store. Woah! 

JOHNNY DEEP!!!!

A definite "Two Thumbs Up" as far as DC is concerned. 

(Unfortunately I read afterwards that Johnny "Deep" (DC-speak) has been replaced for the next installment. I don't think he caught or will remember the character's name so hopefully he will not notice. He may notice that Johnny "Deep" is missing but not that someone else is playing the character)

****

This blog is used for shorter posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time