It’s that time of year again and I do enjoy how much DC loves Halloween.
Halloween festivities began officially on October 16th with a “Boys Day Out” trip to the Essex Steam Train Halloween ride.
I was not there – Boys Day Out – so there are not many photos.
A new tradition has sprung up over the last few years. DC and his friend *Salli have been coordinating their costumes. *Salli started this a couple of years back.
They were Bell and the Beast one year.
Sleeping Beauty and Prince Phillip
Princess Tiana and the Frog Prince and at their day program – Tiana the waitress and the frog (The princess gowns are difficult to manage all day at their program).
DC begins picking his costumes each year around August. Fortunately, *Salli starts around the same time and I normally receive my costume instructions from here in late August/early September and DC is always happy to go along with any princess combo (as you all know).
This year *Salli chose Cinderella. If you have been here long enough, you know that DC would be all in immediately and honestly, this tends to cut down on the number of different costumes DC chooses each year because they attend most of his scheduled Halloween events together.
The First party of the season was October 18th – Summer Camp Party.
DC loves his costume and *Salli looked beautiful as Cinderella.
Now, just as they did last year, they are going to change it up for their day program costumes on Halloween day. *Salli will be Cinderella before she’s a princess and DC will be Gus the mouse.
He’s actually pretty excited about Gus.
There has been a lot going on here over the last few months so we really haven’t done all that much “Halloween Stuff”, but we did manage to take a day trip to a couple of Halloween themed areas (Videos below). Hopefully we’ll have time to do some more.
Coming up in part two: Pumpkin decorating with ARC friends, Best Buddies Halloween Party, ARC Trunk or Treat, Day Program Halloween Day, and of course Halloween night!
I happened upon a reel today. It was one of those people who dress up as shrubbery for the sole purpose of frightening people walking down a public sidewalk.
I am not a fan of those clips (and they seem to be every where lately, in different parts of the country and the world), because I personally do not think it is funny to humiliate people for laughs or views and I am certain that someone is going to get hurt or worse. I’ve seen a few older women fall after being frightened, but they continue to record these and post them. I have, in fact tried blocking or hitting “not interested” on them when they appear so they no longer come up in my feed. I did not realize what this was or I would not have watched it at all.
I am not a fan of prank clips in general.
After seeing a few of these, I wondered and worried just what would happen if a shrub jumped out at DC. I do know that it would not be pretty.
We try to prepare our “kids” for whatever they may encounter in the hope of lessening the shock and the anxiety and the reaction that comes with it, or we just keep them away from situations that we know might cause them anxiety/stress; but really – a shrub jumping out at them? No one is prepared for that.
The reel I saw today was a shrub jumping out at a young woman, who by her reaction clearly had some sort of disability or severe anxiety. I am not here to diagnose anyone, but I have seen that very reaction personally, so I will assume.
In any case; the poster posted it purely to make fun of this person and the comments were so hateful; almost all of them, were just so hateful that my heart hurt. They went everywhere from “Where’s her handler” to the R-Word.
Is this really what we’ve become?
I mean, I do know that this is what we have become but I will never stop being shocked that this is what we have become.
I am not saying that I ever believed that these sorts of comments did not happen but it just seems to be on such a larger scale recently that we just seem to be going backwards. People feel as though they have been given a license to spew hate.
I will not post the clip for obvious reasons.
But really! How is this “funny” to anyone?
Is this really what we’ve become?
(to answer my own question: I am perfectly aware of how we got here)
I thought that since this site has been somewhat abandoned as of late, I might try videos that, in my mind, may take less time to post.
Instead of talking to myself while driving to work (since no one else listens to me), I thought it might be helpful to me to imagine someone might be listening.
Anyway, these may be just random thoughts about me, about something that might be going on around me, an explanation about the way my mind works, maybe some DC, or just some off topic interests.
01–Morning Drive – Spreadsheet Anxiety – February 4, 2024
02-Morning Drive – Public Speaking – February 5, 2025
This is the type of post I usually save for the “Other Blog” – random things and Facebook posts, but I felt as if there was a need for some levity over here. If not levity, than at least the need for me to not be complaining about something, because that is all I’ve got lately.
Anyway, DC seems to be adjusting well to his the art room at his day program. His anxiety levels have come back down to his normal level of anxiety. Oddly, he still has not needed to wear a mustache since that meeting in March when he found out he’d be leaving the old department. It is odd because although he was wearing one almost every day for the last month or two in that department, it was a regular thing for him to do when he was feeling anxious in the morning ( a few times a month, maybe).
I am not complaining. It’s a good thing. It is just odd when you are used to certain things and they stop happening.
The other “up” side of not working in the greenhouse is he no longer has to wear the dreaded sunscreen and bug spray every morning (which might be another reason why he is not currently needing to wear a mustache). Also, no shorts!
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I bought him a bunch of “capri” pants and he loves them.
Since he’s no longer in the greenhouse – I don’t get the notes from his program that he really needs to be wearing shorts *(I don’t get any notes at all – but that’s another story).
Even though he doesn’t need to wear shorts, he sure does love the 3/4 pants.
(I bought the pants before I knew he would be changing departments – I thought they would help with his “I hate shorts” transition but even though he doesn’t HAVE to wear them, he does – everyday – except camp days. Wearing shorts to camp was never an issue for him. I do not know why.)
*“I don’t get any notes at all “was true at the time I wrote the post (July) – I have started receiving some since.
Having said that … I am a little bit concerned about changes that may be coming down the pike there. He does not need to be disrupted again so soon. More about that when I/if I hear more.
Moving on…
This subject came up the other day and I remembered when I first saw and shared the post below and how after 33 years, (or really the 26 years that he has been able to verbally communicate), I finally understood why DC pronounces “W” the way he does.
(If you follow our FB Page, some of these may be familiar to you)
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So this kind of just blew my mind…
DC has ALWAYS pronounced “W” when he is spelling out loud as “D-W” – always.
It’s just the way he says “W”. Now I’m wondering if this is why.
(Doug, who has selective hearing just told me he’s never noticed DC saying it that way so I just asked DC to spell ‘walk’
DC: D-W, A,L,K )
Another realization that I shared on my page a few years back that I was just talking about the other day because he has stopped using the phrase “It’s Good to Be Fine” and for some reason has started using again…
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One of the things that DC says and has said over many years, on a regular basis is: “It’s good to be fine”. He has little ‘catch phrases’ like “Enjoy the fun” that he’s used forever that I don’t really think about because I’ve heard them for so long.
So last week during one of the many rainstorms we have had, DC said “EVERYTHING is good to be fine.”
Ding!!! Ding!!!
It’s ‘going’ to be fine; that’s what he’s been saying all of this time!
Many of DC’s phrases or words have been incorporated into our day to day life. I will still call the refrigerator the “refridg-a-lator“, devastated is “dis-a-vited“, grated parmesan cheese is still and will always be “Sparkling Cheese” on the grocery list. I love you, madly is still I love you “magly“.
Speaking of Grocery Lists:
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Whenever DC adds to or starts a new grocery list – he starts in the middle of the page. I don’t know why.
Also: Cheese Slices
I still do not know why he begins every list in the middle of the page. I will surely be back to explain if I ever figure this out.
He tried something new in June – Pizza with ham and pineapple. Now, as much as I love it when he tries something new, this is something I would not have cared in the least if he refused it.
Yes, he loves pizza and yes, he likes pineapple. He also likes ham, but always has to be reminded that he likes it, Mixing things that he might like individually, together is never an incentive for DC to try anything – and if he does try, he usually says he doesn’t like it. (I have to admit that I am the same way with a lot of foods).
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Luau night activity. Pizza with ham and pineapple (yuk). Wasn’t sure how that would go over and warned him ahead of time but he ate it. He didn’t even try to remove anything!
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I am officially giving up on the #bandaid / marker/tape corner. (Jan 2024)
August 2024 – I did add a few new baskets
But… the “corner” has spread.
I am fully aware that this is a battle that I will never win.
Let me begin by saying that I am not one of those people who go around diagnosing others or diagnosing myself, but over the last year or so, I have come to realize that I am neurodivergent.
I do not know what the specific diagnosis(s) will be when I do finally have the time to have some testing done, but I know it is there.
Having an autistic child, I will say that I should have recognized this fact. I should have recognized that I do and always have done all of the same things he does, just not as publicly.
Oddly enough, I really began to realize this about myself by watching 3 different you-tube lawyers, who never pass up an opportunity to speak about their own neurodivergence. The more I listened, the more I said “Oh”.
OH!
Trust me, I am not speaking about one or two “quirks” because I have heard people say “Everyone has quirks. Everyone is a bit autistic”.
First… Don’t do that. It is very disparaging to people who have an actual diagnosis.
Secondly … Maybe many people do have what you like to call “quirks”. Maybe some people have “some of the things” but they don’t have all of the things.
As a side note: I do believe there is some dyslexia mixed in there as well.
Actually this realization has made me feel much better about everything. Instead of masking, I am now more open to admitting why I can’t do this or go there or why this noise drives me over the edge or how distracted and/or obsessive I can get and how easily I can get there. (I am not going to make a list; this is just a very small sampling – very small).
When I think back over my whole life I can now see what was going on. I have always thought that there was something wrong with me and tried to hide all of my anxiety (not very well at times) and made excuses for all of the other issues I was having in private. It feels better to know that there is nothing “wrong” with me, it is just that my brain works very differently.
I have spoken to a few friends and family members about this over the past few months. Most of them understand that I am not just taking a few incidents and turning it into a diagnosis (although I did go into more detail that I have here).
One friend said that they never thought much about it – I was just Vickie and that was how Vickie was. We’ve known each other for many, many years and I am glad that she has always taken me for me.
Another friend said that it would never have occurred to her until I said it. As soon as I said it she knew I was right as she can see that I am just like her son, who has been diagnosed. She didn’t make connection before. Why would she when I didn’t either?
My mother, who I really though was not going to understand at all – did understand. I saw some realization in her expression. She even began pointing out things that she remembered about me as a child (and I told her other things from school that she never knew about), which of course in this day and age are apparent, but back in the day, it really wouldn’t have been recognized.
At that time you would just be labeled:
“painfully shy”
hysterical
overly dramatic,
lazy
needed to learn to pay better attention
And then there is:
“why doesn’t she ever sleep?”
“why does she she bawl her eyes out whenever people sing Happy Birthday to her? Doesn’t matter, we’re going to do it anyway.”
“You know, you don’t have to follow EVERY rule.” (Side note: What kind of boss disparages your for following rules?)
And then there’s the whole “driving anxiety” which is getting worse by the day.
– this list goes on.
That was the way it was. There was something wrong with me that apparently was all my fault and up to me to fix my behavior, not, there was something that should belooked into. That was the way it was back then.
Some of the issues that these lawyers discussed – like “Time Blindness”, and being “Directionally Challenged” were issues that I would have never related to neurodiversity, so it was really a revelation.
I did say that I felt better now that I have figured all of this out so why, at my age do I want an official “on paper” diagnosis? Well as a blogger acquaintance who has also been recently diagnosed as an adult said to me – “I get it. You want receipts.”
After a lifetime of being gaslit – yes I do!
So to the friends and family who were understanding about all of this – Thank you!
To the people who felt the need to laugh (and others who will. I can put money on it) and say “I could have told you that” – and not in a nice way. I have to ask. If you knew it all along I have to wonder why you were so sh!#y and gaslightly (not a word) all of these years?
The Department of Social Services has moved to a new Fiscal Intermediary (FI) to pay our staff. This has been a disaster and OH… you will read about GT Independence at a later date.
In the midst of all of this, work has been over the top and I just received a notice of a Social Security review which happens to be scheduled while we are away and will have no access to cell service or internet service.
I have called twice to reschedule but as always, they haven’t called me back – it’s been over a week.
Anyway…. I just received a call from DC’s program.
The Department of Labor had paid a visit there and they discovered that they were required to be paying federal minimum wage instead of state minimum. So they have a check for DC.
I panicked because the last time they “made an error” with his payments a few years back, it cost me 700.00 to spend down within two days. It cost DC around that much because his pay was so high that his social security checks were “adjusted” for that amount of money – it also triggered a Social Security and Medicare audit, Fun!
DC works in a program for sub-minimum wage, so his wages fluctuate twice a year depending on his productivity. So it is not always apparent to me when something wasn’t adjusted.
Long story short, apparently they never adjusted his wage for minimum wage increases (even though he makes sub minimum, his wages still should be adjusted up for increases) for the prior THREE YEARS !!!
I received a letter on the 28th of May (yes I remember the date because it was two days before his SS check was scheduled to hit his account), but it was dated 2 full weeks earlier, that 600 some odd dollars of retro-active pay would hit his account with his regular pay on May 29th.
That retro would have thrown him over the amount he is able to have in his account.
I had to get the money out before his Social Security payment hit and spend it down on items for him and have receipts to prove it. If you have experience with Social Security, you know that you can’t just move money out of the account randomly because there is too much there; you have to have receipts.
I had to get itemized documentation from his program to show what the retro was for and that this was their mistake (even though it still cost us money to resolve it).
As I said, it had to be reported as part of his wages for May, which took a bite out of his monthly checks for awhile – so we technically lost $700.00 twice.
And because his Medicare annual report is always due in July, the May paychecks had to be included in that as well – which triggered an audit and me having to send a “bit” more paperwork to prove that this was not the norm wage-wise.
There was also an audit from Social Security.
So when they called today – I panicked.
It turns out that the check is only for .60 (Sixty Cents) but the kicker is that I have to go there and sign for it. Apparently they can not directly deposit it as with his regular pay checks.
I have to take time off from work to go there and sign for a .60 check due to their error.
I know it’s a little thing and I know that with everything else going on, I did not react well and I am probably complaining about nothing but if I don’t write it down I WILL lose my mind; but also, why is it that every time THEY make an error, I am the one who has to pay for it?
It’s been a minute because it’s been a lot lately.
If you have been here for a while, you know that DC has been working at the same program for about 10 or 11 years now.
Although I did find some things lacking (mostly communication wise – See Tales From the Day Program), it was a step above most places we looked at and DC seemed to really love it.
For most of the 10 or 11 years he has been there, he has had very few issues. The reports over the years have always been pretty much positive. Of course there were a few issues along the way, especially at the beginning when I realized that they did not really understand autism – or his autism
One issue that came up a few times was DC saying “No” when asked to do something (See: Communication, Paper Towels and Other Nonsense) (Psst… if you ask him if he wants to sweep the floor, of course he is going to say “no”. Who wants to sweep the floor?). That was discussed and covered many times with his old boss.
I guess what I am trying to say is that when there were issues, these issues did not seem to affect DC, his demeanor or his anxiety.
Over the past few months, his anxiety level has risen to extremes. Autism Awareness is being spread on a daily basis.
The mustache wearing in the morning has increased (See – Let DC Be DC), to the point where over the past month it’s been almost a daily thing. A few weeks ago, he added a scarf to his anti-anxiety ritual. It was so much, that even his driver texted me to tell me how he kept wrapping it around his neck and unwinding it, all . the . way . to his program. He is used to the mustaches, but this behavior did concern him.
I received a letter in July that his boss had left employment there. Her position was being covered by one of the staff members, *Maura, who DC really loves.
In August, I received a letter that *Susan had accepted the position and would begin in September, I believe.
Sometime in October or November I began getting a different sort of “weekly report”. The reports really did not tell me what he was doing all day, but there was a lot of this:
“DC has to learn … that he can’t say “No” to his supervisors. (This had been covered many times)
“DC has to learn… (and a one sentence description of what “he has to learn”).
There was nothing specific in these notes and I called to speak to *Maura because if they expected me to help them with this behavior that was cultivated and/or allowed there over the years, I needed specifics to be able to discuss it with him. She gave me a bit of insight about what was going on.
Meanwhile, DC was becoming more agitated every day. One may expect that to happen, when everything he has done over the last 10 years is now somehow wrong. If you are being told you are doing everything wrong all of a sudden; yes, of course he is having more anxiety than usual.
The notes continued:
I won’t go through all of them but many of them seemed as if they expected that he should be able to “work on” not getting anxious.
The <insert sarcasm font> best note was:
“DC is rolling the dough too thickly” (What exactly should I be doing about that??).
It was as if they were required to write at least one negative thing each week.
Even though he has been in this department for 10 years, I began thinking that maybe I should think about taking him out of that department. I knew the only department left for him to go into was the Art room, which unlike the department he is in, is not a “job”. It is more recreational.
Moving him was a thought… but not the first thing on my mind as I was hoping that we could sort some of these issues out at the meeting we had on Wednesday.
I have always said that DC hates attending these meetings because … people sitting around talking about him can’t make him or anyone feel good. I, on the other hand, always found them to be useless because the only person in attendance other then DC, his caseworker, myself was his old boss.
Information discussed never seemed to make it any further than the conference room and was not shared with the staff AND she couldn’t answer a lot of questions I had about other things having to do with the program, changes that were coming up, etc. (this was covered in one of the linked blogs above). Plus , her behavior at the last meeting we had with her was bizarre. I mean, really bizarre. I won’t get into details, but trust me, it was bizarre.
The meeting that we had on Wednesday was different. Not only did we have his caseworker, who is relatively new to DC, and really doesn’t know him very well, but we had his boss, *Susan, his boss’ assistant and his boss’ boss in attendance.
First clue that something was up.
Not too long into the meeting *Susan, his boss jumps in as if she was waiting for the opportunity to relay this information:
“You know the one thing I can say about DC? He really loves to paint.”
Of the many things one could say that DC was good at, painting would not be at the top of the list. He’s painted before but really, not the thing that would come up – especially since she was describing the ONE time they painted anything in that department.
So right there, I knew that this was a plan they had all made before I even made it to the meeting and trying to discuss what would help DC in his current program was not going to keep him in the department. It was clear that they wanted him out and trying to keep him there would just be detrimental to him as they weren’t willing to work with him.
And guess what?? There just happened to be ONE spot open in the art department. <Insert sarcasm font> How lucky is that?”
So DC will be moving to the Art Department in April. I explained it to him at the meeting. I have been talking it up to him since.
I am condensing this saga – there was a lot more discussed during the meeting; communication mostly and as I said the past few months have also been “a lot”.
Even if things are changing with the GSO programs, as they were trying hard to make it seem, this was not the way to go about it. Talk to me, if there are changes coming down the pike. Why wait for a meeting and pretend that this isn’t something they all had discussed beforehand?
Don’t go on and continue to berate him and make him feel as if he can not do any thing right.
One other note that I feel the need to bring up.
When DC first began this program after he left high school – he split his time between what they call DSO (recreation) and GSO – Group Supported Employment. *Susan worked in DSO and she was the one who suggested I move DC into the GSO full time because there didn’t seem to be enough for him to do in DSO.
Hmmm… might be a pattern? Let’s hope she doesn’t at some point get moved to the Art room, or it will surely be “suggested” that DC will need to move elsewhere again.
Anyway, I am hoping that this move will make DC happy again; although I don’t know if it will keep him busy all day.
Funny thing, though; DC did not feel the need to wear a mustache to work the day following the meeting or the next day. He may be looking forward to leaving.
But since the pandemic and the three vaccines he’s already had, one might think he’d be used to it at this point.
Not the case.
He talked about it all week, mostly by pointing to his arm and saying “shot”.
That really wasn’t bad, really but I could see he was getting more anxious everyday.
The one silver lining for him was that he’d be getting his vaccine at Rite Aid Pharmacy, which is the only place where we can find silver and gold sharpies any time we’re there.
We find them sporadically in other places from time to time, but silver gold and bronze 3 pack sharpies seem to be regular stock there.
So there’s that.
Incentive.
He announced it to anyone who would listen the day before his appointment.
He announced it to me more frequently as his appointment got closer. He also recited his list of post-shot treats that he was looking forward to getting while we were there:
His markers, of course.
Band-aids
Cheese-Its – Spicy
I have to say that for the first time, even though I always fill out my forms on-line … for the VERY FIRST TIME, I did not have to fill them out again and be spoken to as if I am some old woman who has no idea how to “work the internet” and that I must be confused between making my appointment online and filling out the forms and uploading the front and back of my (or DC’s) insurance card.
I could really go on and on about this place but I will spare you.
(This wasone of the times I was ready to lose my mind and they wanted me to tell them what the problem was, but no one has that much time. One of these days – when I get my list together, I will.)
Sounds like we need to do a lot better. Can you please DM us with more information so we can help?
We sat down and waited for our turn. There was only one other person waiting and he was doing his best to pretend not to notice DC repeating:
“I am very nervous about this.”
“I am brave”
“Just a little pinch”
“Won’t hurt at all”
“I am scared”
“Very nervous about this”
But when he broke in to prayer, the man couldn’t contain himself and burst out laughing along with me.
I really tried not to laugh because I didn’t want DC to think that I wasn’t taking his concerns seriously, but praying was THE LAST THING I expected! We are not religious. He must get that from his grandmother.
The man was called in for his vaccine and came out in less than a minute.
He made sure to come over to DC and tell him that it did not hurt at all.
DC repeated that and seemed to be happy to know that even though I had been telling him the same thing over and over gain – but who am I?
We were next.
DC was anxious but the pharmacist knew that. I suppose he heard him going on and on.
He was so fast with the shot that DC just about missed it even though he was looking right at it.
(The thing about DC is that even though he is terrified, he HAS to watch. Most people turn their heads, but DC has to see).
It was over in 30 seconds and in true DC fashion he left the office as if he were a celebrity responding to his fans.
Waving Wildly and yelling, “Good Bye Sir”
Still waving and yelling to the pharmacy in general – “Good Bye Ladies!”
And off we went to pick up the items on his list.
He is absolutely fine. No fever, no side effects and still making sure anyone he sees, knows that he is brave.