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.

Tales from the Day Program – 60 cents

Again, I will say – There has been a lot going on around here.

My last post was only one of the many.

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.

** As I wrote here – he is in a program with in house jobs that were created for these adults. They are not working out in public taking jobs away from other folks who would be paid minimum wage or more***

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.

1. That retro would have thrown him over the amount he is able to have in his account.
2. 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.
3. 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).
4. 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.
5. 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.
6. 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?

More: Tales From the Day Program

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

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)

****

More Tales From The Day Program

Boosted – #2

So listen… we all know how DC reacts to vaccines.

He’s gotten better over the years – probably because as an adult, it is not a regular occurrence any more.

 “When he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.“

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 was one 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?

— Rite Aid (@riteaid) May 31, 2022

https://platform.twitter.com/widgets.js

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.

“Just Another Guy in a Suit”

It has certainly been a minute since I have posted anything about DC here.

After a year and and almost a half of being at home due to the pandemic, I started back at work a couple of days a week back in July (2021).

I have to admit that I got used to being home and I am finding it difficult managing my time since going back to work. I can’t put my finger on what the problem is, since I was able to keep up with everything before the pandemic while working full time, but this is the way it is – for now.

I am sure I will get back in the groove at some point, but right now I feel as if time management is a long lost skill.

I have so many stories and ideas in my head but I just haven’t made the time to write anything or finish writing anything down.

But…

since Halloween is a staple here at Taking it a Step at a Time, I figured I could at least get that “on paper” (and to be honest, I started writing this post before Thanksgiving and now it is January, mid-February, March, mid-April, mid June, late July, August, early September, October. Time management – Fail) .

This year (2021) was different, but only in the way that DC did not even mention Halloween until the beginning of October. Usually we are choosing costumes in August.

He also chose to wear two “rerun” costumes.

One was a character he had worn years ago, but it was one of those one piece all in one jumpsuits. This year he picked the “real thing”.

The other was an actual rerun costume that I had to buy a million pieces for because there was no such thing (and almost no one knew who he was). It doesn’t look it but it took a lot of work gluing and sewing bolts or cogs (?) to everything.

He was excited when it finally did enter his head and although there was not as much going on as in past years, the activities that were happening, were in person (masking protocols in place or outdoors) and not on a computer screen in the kitchen.

Two of the parties that we usually attend, Camp and Best Buddies, were scheduled on the same day.

Fortunately they were scheduled with enough time in between for us to be able to attend both.

****

“DC has two Halloween parties to attend today. My very first thought was of the last time we attempted to do a Halloween party marathon. We only made it to the first of the three that were scheduled, due to the Halloween nor’easter of 2011. When I texted *Tonya about trying to do both; her reply was “Double header. That sounds doable. No storms expected?” It’s funny how things stay with you.(Link to that storm here). It’s cloudy today but no storms in sight. Fingers crossed.” Facebook October 23, 2021

****

There was enough time between to get to both but not enough for a costume change, so DC was Woody for both parties. He was Woody back in 2010, but this was the “real” Woody, according to him.

They had fun at Best Buddies. DC’s buddies did not show up but that is a story for another day.

The Moms?

We waited in line for coffee for the entire run of the party. After which I felt the need to announce to everyone waiting for us that I was the calm one (No details, but just know that I am not usually the calm one!)!

We determined that we’d have plenty of time to stop for lunch on the way to the next party at camp. We decided to stop at a place half way between the party we just left and camp. Historically this place is never busy. Never.

We pulled into the parking lot and as we were getting out of the car, an entire motorcycle club pulled in right behind us. We weren’t all that concerned. We still had plenty of time.

Famous last words…

It was a ‘de-aster’ – as DC would say. We waited a long time for our orders. DC’s was completely wrong and we had to start the whole process all over again and Sally locked herself in the restroom, but we did finally make it out of there and made it to camp.

DC and Salli were not phased by any of this, but Tanya and I were ready for a vacation.

We had to settle for coffee, but this time there were no lines and we were able to sit and relax for a good hour or more. By that time, I could do nothing but laugh at the events of the day.

Trust me. It was much worse than I can describe here.

DC was thrilled by a surprise visit from ‘Ron”.

AND…

He found his pumpkin on his own. He did not give up and just grab a random pumpkin with someone else’s number and we had no 9 vs. 6 issues (as in the past with 12 and 21) – it was his number.

Progress.

(Since it is already October, we have our Halloween 2022 party schedule and Best Buddies and Camp are again on the same day – so we get to do this all over again. We should probably just bring our own coffee for the first party. Ya think?)

There was a new addition to our Halloween activities last year.

A new used book store had opened up in town. I had kept that information from DC for a good year (?) because, you all know that as much as I love how much he loves books – there is just no room for any more. Every open space in our house is full of DC’s books. AAAAND, I did not want to have to listen to him begging to go to the book store any more than I already do, knowing there was one right here in town. I knew I wouldn’t be able to keep it a secret forever, but it wasn’t difficult during the pandemic (yes, I do understand that it is not over, but you know what I mean) since we weren’t going all that many places anyway.

The bookstore along with the other stores in the complex, organized a “Haunted Trail” that went along the sidewalks of all of the shops. It was pretty cool and I hope they do it again this year.

DC opted to re-use his “Time Keeper, Spy Kids – All The Time In the World” costume (yes, we must say the entire title) from a few years back. I was glad because I was pretty proud of putting that one together at the time.

It was fun and of course – there was the bookstore. The secret was out!

On to Halloween Night:

DC’s friend, BB (above in the Spiderman costume) joined us for the first time on Halloween night.

DC’s costume choice? Dimitri from Anastasia.

Yes, ANOTHER guy in a suit.

As usual, no one knew who he was, but he was happy to be Dimitri. I did get him an Anastasia tote bag to trick or treat with to make him more identifiable. It did not do the trick, but that’s okay; one must have a matching Halloween bag anyway (Halloween rule: #2).

They ate pizza at *Coach and *Candi’s house and trick or treated afterward.

They always have a good time together.

So there it is… finally! Halloween 2021.

We’ll be back in a few weeks for 2022.

We are READY!

*****

In case you are curious – Halloween Rule #1 is: Wear as much clothing underneath your costume to keep you warm. NEVER wear a coat OVER your costume.

For Past Halloweens – Visit our Halloween Page

Let Me Tell You About My Brother …

I am angry.

I am angry because this did not have to happen.

I am angry that a Covid-denier without a morsel of human decency thought that he knew better than anyone else and went to work ill.

Let us not confuse this with people who may not have been symptomatic right away or symptomatic at all who spread Covid innocently without realizing it. This was a denier.

My brother was careful. He did not travel. He was not out in restaurants or at parties. He went to work and he went home.

I am angry that the last year and 3 months of my brother’s life were spent in and out of hospitals, chest tubes, surgeries, oxygen and suffering.

I am angry for his wife, my sister in law. They have been together since they were teenagers.

Forty five years together and he is gone. What do you do with that?

I am angry that she had to be as strong as she had to be throughout his illness. She was always there for him and she never stopped being strong for him. I am grateful that he had someone so strong that could take charge while also being a huge support to him.

I am angry for my niece.

The relationship between my niece and her father was one that most people would (or should) aspire to. He was determined to and succeeded in becoming a better parent than many of us hope to be or believe that we are. He was her father, her friend, her rock, so much so that he become a father-figure to many of her friends.

I am angry that the last conversation I was able to have with him was about giving me the news that he was being moved to hospice.

But my brother; he was not angry. He was accepting of what was to come.

He told me that he had a good life; an odd life, but a good life. He was at peace with his situation.

And he did have a good life. He had friends … some very good friends and a family that loved him.

There was never any question that he WAS LOVED by many, and he appreciated the time that he had.

But he should have had more.

Much more.

During what would be our last conversation, the mission he assigned me with was “You’re are the writer in the family. You have to make sure that everyone knows what a great guy I was.”

He was partially joking but still I am here trying to adhere to his last request of me.

I do not even know how to put in writing just what a “great guy” he was. If you knew him; you already know this to be true.

Skip was my brother, my confidant and my best friend in life. Of course we had our ups and downs when we were younger, as most siblings do, but there were far more ups and the downs were nothing that we did not get over quickly – and so few of those, that I cannot even remember what they might have been about right now.

It has been a month since he has gone and I still find myself picking up the phone to text him about something goofy or a conversation I had, or a television show I am watching. It still does not feel real. I am not sure when it will feel real.

But I am supposed to be telling you about what a great guy he was, since I am “the writer in the family”. I do not feel like much of a writer right now. I am still angry and my anger continues to rear it’s ugly head when I talk about it, so I am going to use my sister-in-law and niece’s words to tell you a little bit about Skip’s life. You will see that yes, it was a good life, but you will also see that there should have been more.

(The following was edited to remove last names and specific locations as this blog is normally about my son and our life – where I don’t use DC’s real name, our last name or where we live to protect my son’s anonymity)

Skip was an artisan craftsman known worldwide for being one of a handful of whip makers who still made American Bullwhips. He was featured in the Discovery UK series “History in The Making,” which focused on skilled craftsmen making historically significant items using the original, time-honored methods.

Skip was a gifted magician, known for his cards and coin sleight of hand. For years he performed as part of the team, Vic and Earl, the Earl being his best friend. For over 30 years, they worked together honing their magic act that evolved and changed over the years. They were best known for their side show routines, particularly Crime and Punishment, which they performed with friend and cohort, Dave.

Skip was also a published author. He had articles featured in the Magic Menu, a Close-Up Magic Periodical for Professional Restaurant and Bar Magicians, of which he was also the art director for during its early years. He was a contributor to the book Magic and Meaning with Eugene Berger, and was a founding member of the Inner Circle of Bizarre Magic.

Most recently Skip worked with his sister Vickie on, “Yeah, That Can’t Be Good” – A Eureka rewatch podcast. Listeners would comment that the episodes in which Skip was co-host were some of the best, due to the fun exchange between Skip and Vickie on-air.

Skip was a man who took pride in all that he did. His day job as a head custodian spanned over 40 years. Retiring from one city, he went on to work for another school district in a nearby town. He went above and beyond ensuring that his building was a clean and safe environment for the students and staff. He not only took care of the building and grounds, but he was also considered part of a team of educators. Skip shared his knowledge and led by example. He did mini workshops on the engineering and design of whips, how to start a small business and design a web page at the high school, as well as, cards and coins for the students at the Middle School.

I miss him everyday.

****

Donations in his name can be made to DC’s summer camp. Just use “Skip” – they will know who it is for.

CampNerden.com (donation button on the top left of the page)

 Mailing Address: – P.O. Box 2617 – Meriden, CT 06451

The Day Program: Communication & Allergies

(This post is mentioned in my Halloween post – which has also not been completed, so it’s all getting a little bit confusing for me. Please bear with us. It seems as though I’ve lost all time management capabilities over the pandemic.)

Back in January – the day after New Years Day as a matter of fact (which also fell on a weekend) I took DC to the walk in clinic because I was convinced he had a sore throat. He would put his hand on my shoulder and brace himself before he swallowed. 

Of course if you asked DC, he would tell you that he was just fine, but I took him anyway, thinking he may have strep or something.

There was a form I had to fill out every morning for his day program, because DC does not really answer questions properly. Upon arrival, DC gives them the form, his temperature is taken and noted on the form and his arrival time is noted.

It asks the standard COVID questions – fever? coughing? sneezing? exposed to COVID or exposed to anyone that has tested positive? traveled out of state? etc…

A “yes” to any of these questions means the person will not be allowed to attend and is sent home until you speak with the nurse or a negative test can be supplied to the program.

Bottom line; the person is sent home.

A sore throat at the time was not one of the symptoms on his program list or any COVID symptom list that I could find, so I was not concerned about that. I just wanted his throat checked out. 

The doctor gave DC a strep test but also gave him a COVID test. She said that many people had begun presenting with a sore throat at that time. 

(Sore throat was later added to his work form and other COVID symptom lists I have come across.)

Now, what I could have done – since this all happened over a holiday weekend, was say nothing and send him to work the next day since his strep test had been negative and “sore throat” was not on the list at the time. (I say this because I have heard from a few people about relatives of theirs doing just that – getting exposed, being tested and going to work, school, etc. while waiting for the results before mentioning it to anyone).

But… I am not a jerk so I did what I was supposed to do. I notified his program, his driver and the other person who rides in the van with him. I also cancelled a few appointments that I had scheduled because we were both supposed to quarantine.

When his test came back negative, I sent the results to his program and he was allowed to go back.

This was back in January 2021, before vaccines, before many things had opened up.

May (Spring) had come around. DC was fully vaccinated as were many others at his program.

It was May. May means allergy season.

DC has seasonal allergies. He has been with this program since the age of  22 (he is 31 now). They know this.

As I said above… not being a jerk – I do understand that everything is different due to COVID, even now that things are loosening up a bit. 

A few weeks back, DC’s allergies kicked in full force. I always know it is allergies because it’s like he turns around and there is a red stripe under his nose. Just like that. It happens that fast.

I had just started giving him his allergy medication the week before so it hadn’t taken full effect at this point. 

The next morning, he woke up fine – no sneezing or coughing (no fever as I do check his temp every morning). He went to his program, but I guess being outside all day took it’s toll.  

His driver went to pick him up in the afternoon and texted me that the staff told him to tell me that DC was congested after lunch.

Now, because COVID, I was not sure if they wanted me to keep him home or what. Let me just add that relaying messages to parents via the driver, should not be happening. We have talked about this before. It’s not that our driver can’t be trusted to deliver a message, it is just not the way things should be communicated. It would be like a teacher sending you a message through your child’s bus driver – but that is a whole different issue.

I called his program right away to find out if this would be a problem the following day because I couldn’t honestly answer “no” to coughing and sneezing. I spoke with someone who told me that his boss was “not available” to speak at the moment.

I told her about the message and asked if this would be a problem if he came in the next day. She said it was not – they knew he has seasonal allergies.

Now, I called the program when DC’s driver texted me from the parking lot at pickup, so DC was not home yet. When he did arrive home – he was a ‘de-aster’ (DC-Speak), just a mess.

I decided I should keep him home anyway on Friday. Maybe a couple of days inside of the house would give his allergy meds some time to kick in. But because the protocols had loosened up (at the time), I was not sure if he needed a test before he came back, because I was keeping him home.

I called and left a message with his supervisor. I called again when I did not hear back from her. I also emailed.

When Friday was over and hadn’t heard anything, I left a message with the supervisor’s supervisor, hoping she would get it first thing on Monday and call me.

I didn’t want to send him and have them send him home, but I also didn’t want to keep him out for no reason because we had a few appointments coming up and would have to be out for them.

I spoke with his driver and he said he had no problem bring him back home if they decided he could not stay on Monday – but I really wanted to talk to someone to avoid all of that.

I decided not wait until Monday, in case they did require a test. If I waited until Monday and then have to wait for the results, he would have to stay home until the results came in, so I took him for a test on Saturday, just to get a jump on the results.

I called the supervisor’s supervisor on Monday morning as DC was on his way to work.

I called again at 10am after DC had arrived, at this point just to let them know that he had been tested in case there was a problem and that I was sure it was just allergies.

Finally at 10:30 (when I called back again) I got to speak with the supervisor’s supervisor, who began reading me all of the rules and protocols for allergies – which do not appear on the sheet I had to fill out each morning or really anywhere except whatever she was reading from.

I asked just how anyone was supposed to know any of this?

Crickets.

I told her just how many times I had called since Friday afternoon.

She told me that his supervisor is on medical leave!

How would anyone know that? Why had the other person I spoke with originally not mentioned that?

Her response? HIPPA Laws!

Me: I don’t need to know what’s wrong with her but it would be a good idea if someone told people that she will be out. Does anyone have access to her email because you all ask us to email and there could be lots of messages sitting there that no one is seeing.

Her: No, none has access, but you’re right, someone should have access. I’ll bring that up at the next meeting.

Really? This hadn’t occurred to anyone until I just brought it up?

She did say that the person I spoke with gave her my message on Thursday but, and I quote – “I was busy doing a project, well not really a project, but I was busy doing my job and did not get around to calling you back”.

Seriously? 

So basically the Allergy protocols that are not published anywhere except in whatever she was reading from meant that he really never needed to be tested – and that I put him through that for no reason.

A simple call back would have eliminated all of that “stress” for him.

I would think calling me back would be part of her job, wouldn’t you?

***

Edited to add: Protocols have changed since I began writing this post, but  COMMUNICATION from the day program being the point, I decided to finish it. 

More Tales From the Day Program – Here

Happy Thanksgiving!

We’re still here and we’ll be back here real soon!

DC and I wish all of you a very Happy Thanksgiving!

Stay safe and we’ll “see” you soon.

Pandemic Diaries – Part 30: Fully Vaccinated

I may have mentioned this already, but back in March our state’s vaccination schedule removed any exception for disabilities and went to an age only schedule.

My age came up on March 1st. It took me three days of constant searches and 1000 websites to schedule my two doses. Yes, the 1000 websites is an exaggeration, but at the time – it sure felt that way.

On March 31st. I was fully vaccinated.

The way the schedule was set up, I did not think that DC would be eligible until mid to late May.

Before April hit, the state abandoned that schedule and opened vaccines up to anyone over the age of 16 beginning April 1st.

Yes, this was great for DC, but the downside was that the three days I spent looking for mine would now be multiplied because EVERYONE, not just a certain age group would be trying to book an appointment all at the same time.

8 days, and another 1000 websites later, I found him an appointment for April 28th. I booked it, but decided to keep looking for one a little bit sooner. At this point DC’s day program sent a few emails about DDS (Department of Developmental Services) clinics that were being set up specifically for people with disabilities and fortunately I was able to book an appointment for him on April 14th.

Given the fact that I had been very concerned about DC’s fear of vaccines in general, this option put my mind at ease a little bit. As it was set up specifically for people with disabilities, I knew they would have more patience with him if he fought the process.

After all of that searching and his vaccine was finally booked, I received a call from DC’s DDS caseworker asking if DC was scheduled for his vaccine and to let me know about these clinics (yes…he’s pretty worthless on a regular basis). I told him that I had received that information from his day program after 8 days of searching and yes, he does have an appointment.

He apologized for not getting this information to me sooner – he had a pinched nerve which <insert sarcasm font> I guess, made it impossible for him to use the phone, or email <end sarcasm font>.

I had been talking up the vaccine to DC since I received mine. I told him how important it was for “making ‘the sickness’ go away” – and you know how much DC wants ‘the sickness’ to go away. It was his birthday wish after all.

I have to say, he did really well. He got a little bit anxious, but nothing like when I used to have to bring his dad and Doug with me to his physician for extra muscle when he had to get a vaccine or a booster shot.

He got to go to the Dollar Store (which just happened to be two doors down from the vaccine clinic) and to outdoor- dining- lunch afterwards. We hadn’t been to a restaurant for outdoor dining since the day after Thanksgiving.

DC hasn’t been to Barnes and Noble (one of his favorite places) in well over a year. He’s scheduled for his second vaccine on May 5th. I told him that we could start going some places two weeks after his vaccine. I explained that he still would have to wear a mask etc.

I just went to put something on the calendar and noticed an addition… He figured out two weeks to the day!

Facebook Status – April 30, 2021

DC’s friend BB, had received his vaccine earlier that day at the same clinic, which meant they would both be going back on the same day for vaccine #2.

We decided, as a little extra incentive – to meet for lunch after their second shot. As it turned out, that extra incentive was necessary because DC was so much more anxious when we went for the second shot. I do not know why, as he did so well with the first.

While I was trying to calm him down, I mentioned that BB had already been there to have his vaccine and he was just fine. The woman administrating the shot asked if BB was DC’s brother. I told her that he was DC’s best friend. She then told DC that she was the one who gave BB his vaccine earlier and BB was just fine.

That seemed to help and he calmed down right away.

We waited our 20 minutes, went to the Dollar Store (of course DC hadn’t forgotten that it was right there) and went to meet BB and his mom for lunch.

We decided on a place that we knew had outdoor dining, but when we arrived the place was pretty much empty and as it had just started to rain, we opted for indoors. We hadn’t been inside of a restaurant since February for 2020.

DC had absolutely no after effects from the second vaccine. BB’s mom reported that BB was just extremely tired (which was exactly the way it went for me after my second.)

Needless to say, he was extremely proud of himself.

DC’s triumphant return to #BarnesAndNoble after more than 14 months! I felt as if there should have been balloons and streamers when he walked in!

Facebook May 19, 2021

Even though we are still wearing our masks in public, washing hands and taking many of the precautions we were taking before our vaccines, it just feels better now.

(I finally stopped myself from wiping down my groceries. I know most people stopped doing that months ago but I just couldn’t. Obviously I am having the harder time with re-entry.)

*****

Pandemic/Quarantine Diaries – ALL

Pandemic Diaries: Part 29 – Anastasia (and Some Sleeping Beauty) – Happy Birthday, DC!

I will be the first to admit that I can get carried away with DC’s birthday. Much like Christmas, it was a long time before he actually “got it” and when he did, he was all in and so was I.

When he got to be an adult, I stopped calling his birthday get-togethers “parties” because party meant things like party bags, games and/or some form of entertainment. We began calling them birthday dinner with his friends. He was okay with that and really looked forward to it each year.

Of course this year would be different. Like last year, he would not be able to have a birthday dinner with his friends. he was disappointed because… his friends.

I was disappointed because it was his 30th birthday and that, as they say is a big deal.

As you have read… DC was even more excited than he usually would be about his birthday because he really misses “Going Out To Eat”; and what is a holiday or special day without going out to eat?

Bringing his “Out To Eat” favorites home is something that he REALLY looks forward to since this pandemic began, so he was in “breaking my sanity” kind of excited mode.

That being said, I wanted to make it special – as special as it could be in the living room with just Doug and I in attendance.

It also goes without saying that this is all a just ploy to force you to look at DC’s birthday photos (you knew that).

He started his day wearing his annual birthday shirt and his new birthday socks.

I went with his second favorite of late – Sleeping Beauty for birthday breakfast.

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And of course, a whoopie pie because who doesn’t need a whoopie pie to brighten their day?

Off to “work” he went and I got started decorating. I have to admit, it was fun. I haven’t done any “party” decorating in a very long time.

I wrote about his love for Anastasia in my last post. As I also said in my last post; Anastasia items are not easy to find. Party supplies are non-existent – I had to wing it.

I decided to use “Together in Paris” as the theme and Paris party supplies were not very hard to find at all.

But as I do… on the day I decided that the three backdrops and plain pink table cloth were not enough. I started cutting up the paper plates to liven up the table cloth.

There was going to be only three of us, so how many plates did we really need?

Then I went on a hunt around the house looking for anything I could use to add to the effect. The Glinda costume that had been hanging in the garage for may years was sacrificed for it’s pink glittery material, that I used to cover the lamp and wrap around the edge of the table.

No worries! It was no great loss. After many wears by many different people, it was not in good shape any more. It had also been taken in when I wore it a very long time ago; and not very well. Plus, the garage did not do it any favors. I was really wondering why it had still been hanging there and not thrown away. I suppose I just got used to seeing it there and stopped noticing it.

Right now, I am sure you have questions (and might even be shocked) by one or both items I just mentioned…

Let me clarify for you.

Yes, there was a time when I actually had to take in costumes so they would fit me! Shocked, I know!

I am not nor have been a sewer. When I say, I took something in, it was with a needle and thread (not a machine) and it was more like grabbing material in certain spots and sewing it up. It was not a good look, but usually I could get away with it on a costume. Now-a-days I can’t even see to thread a needle.

Moving on…

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The cake…

All that DC had been talking about was a cake with BIG red roses (this guy loves frosting as much as his mother does). He showed me online images of cakes with large red roses on a daily basis. His only other stipulation was that his cake needed to be bigger than mine had been.

After searching “Anastasia” for days hoping to find something I could use as a cake topper, I decided on a tiara and found an Eiffel tower candle.

Simple; but it made the point.

The baker did a wonderful job.

(After DC jamming the tiara on my head far too many times, the following day – I found a home for it on his Tangled doll that stands in the corner of his room. I am not tiara material.)

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Needless to say, he was surprised when he came home to all of the decorations.

After he went through his “coming home” routine which had to be followed even on his birthday, I told him to go upstairs to change into his party shirt. He looked at me sort of funny because he was already wearing his birthday t-shirt. I told him there was a new shirt on his bed just for this occasion.

He went upstairs.

I listened.

I heard a squeal!

I could not find a “Together in Paris” shirt that would have arrived in time, but I was able to find “Once Upon a December” (you know… the song he tortured Camp with all summer?).

Have you ever gotten really excited about something in the hopes that your child will be as excited as you think he/she will be – and then they are not? I cannot even count how many times that has happened.

Well, he was just as excited about the whole thing as I hoped he would be!

We ordered pizza and wings from the place where we usually have his birthday dinner with friends. Of course, we also had Anastasia playing on the television throughout the festivities.

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I hid all of the gifts that had been arriving for him from over the past week from family and friends, so he would have a big pile to open on the day.

Of course there were markers, jelly beans, goofy socks (which is now his thing), princess dolls and… the Anastasia and Dimitri dolls.

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He was not so impressed with Anastasia because it was “Skating Anastasia” – not in the movie, but it was the best I could do. I did get the squeal for Dimitri, though.

He also received a case of white paper –

• 

because, you know –

this.

I was thrilled that I could make his 30th something to remember for him. He was happy with every single thing, but he still missed his friends, which became more apparent when he blew out his candles.

Normally when DC blows the candles out on his cake and makes a wish, I have to ask him what his wish was (yeah, yeah, I know – you’re not supposed to tell). I usually get an answer that he has just made up at the time of the question because he is usually not really making a wish, he’s just doing theater.

This year, I did not have to ask…

He announced “I wish the sickness would be over” and then blew out the candles.

That was something he said quite often at the beginning of this pandemic and every once in a while over the past year, but I never imagined it would be so front and center in his mind that he would use it as his birthday wish.

That is my wish too, DC.

We’re getting there.

Happy Birthday to this guy! I can’t believe he is 30 today! THIRTY!!! It’s been a hard year and although he is disappointed with having to spend another birthday without his friends; he’s making the best of it! So proud of this guy! Happy Birthday, DC! Love you ‘magly’ – March 22 Facebook

Happy Birthday and I do love you ‘magly’

****

Oh! In case you are wondering, we will not be making a keychain.

***

Quarantine/Pandemic Diaries – all