Neurodiversity and me.

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.”

– 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 be looked 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?

THAT is a You problem.

The Day Program: Ch-ch-ch-ch Changes

Posted by TakingItAStepAtATime

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 excepted 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.

(Quick Update – 4/16/2024)

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More Tales From The Day Program