Tuesday, June 1, 2021

The Day Program: Communication and Gloves

 


A few years ago, DC sprouted a rash on his face and the back of his hands. I realized that he had been at the dentist and because he liked the blue gloves they used, they gave him a pair. While wearing them, he kept rubbing his face. I suppose he liked the way it felt.

I took him to the doctor and was told it was an allergic reaction to the gloves (non-latex and hypo-allergenic). We did not know what about the gloves was causing the problem, but it was apparent they were a problem. He gave DC a prescription cream and in a few days, it was gone.

A few years later, DC came home from his day program with a glove shaped rash on the back of his hands. I called and spoke with his manager to explain the glove situation. He had never had to wear gloves there before, so it was not something I thought about telling them since it never happened again after the episode with the dentist.

I was told that he would be able to wear his own gardening gloves and when he went to work in a different department, the clear plastic gloves - which did not seem to be a problem for him.

A month later I got a note from someone in that other department, informing me that she was not aware of the glove situation and that DC had other gloves on that day but only for a few minutes. He was now wearing the clear gloves. (This was one of the many times that issues we talked about in our IP meetings, do not go any further than the meeting room).

After this last incident there were no more issues regarding the gloves and which gloves needed to be worn.

In mid-march of this year, DC came home with the same glove-like rash on the backs of his hands. I asked DC if he had been wearing gloves at work and he said YES.

Me: (Not wanting to ask a leading question) What color were the gloves?

DC: Purple

Now, before DC went back to his program back in October and given the pandemic, I specifically asked about gloves. I was worried that they would be required. I was told that they were not. 

During the next meeting to nail down how many days he would be able to attend the program when he went back - 

(Yes... this meeting.)

Have a meeting – Wait for her to have other meetings with other clients to determine the days he can attend – Have another meeting – Wait for her to have other meetings with other clients to determine the days he can attend – Have another meeting – Wait for…

 I again asked about gloves and was told he would be wearing the gardening gloves or the "white" - which I assume are the clear, gloves.

When he came home with the red hands in March, I called his manager that evening so she would get the message first thing in the morning. I wanted to be sure that they did not let him wear the "purple" gloves and also so I could figure out if it was the gloves that caused the rash or if I should be looking for some other irritant.

When I did not hear back by the end of the next day, I called again and was told that his manager had not been in that day -(apparently no one else checks the voicemail; not the first time this has happened - trust me.) 

Not knowing who else to contact, I emailed the director. I did not want him to go another day wearing the purple gloves. 

She responded by telling me that she would take care of it by cc'ing my email to DC's manager's boss and she also gave me that contact email.

By this time DC had arrived home and the rash was worse.

I never heard from the manager's boss at all - ever.

But finally I did receive an email from his manager the following day:

"There have been no changes to the gloves, soap or cleaning supplies in <that department>"

That is not a reply. That is a non-answer. This does not tell me whether or not DC was wearing the wrong gloves by mistake or if he was even wearing gloves at all. It does not say, "there have been no changes to the gloves that DC wears". It is a vague, non answer.

I know that they have more than one type of glove in that department. This just says that they have all of the same items that they always have. This is the way one responds when one does not want to lie but also does not want to admit to an error.

Coincidently he has not come home with a rash on his hands since.

hmmm

****

Tales From The Day Program - ALL

*******************

In case you are new here: “I tell stories, most of the time; single individual stories about this or that. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works, never to "make fun of him"

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies."

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






Wednesday, March 24, 2021

Speech and Wrapping His Mind Around a Single Word

 


DC was assigned a line of dialogue to recite for his Winter Guard team Zoom show.

I say a line but actually it was only two words.

"Into
Abilities"

And… he could not say Abilities; not for the life of him.

In order to get him close to the word, I tried putting it up on “the board” (you know… the board I bought to keep him from reminding me hourly of everything birthday related) and I tried to sound it out for him.

Into
UH Bill UH Tees

Was my first thought.

I had to use UH instead of an A because if I put an A there, he would say the letter A and not the sound.

Then, overthinking as I do – I thought that maybe UH Bill IT Tees would sound better.

The more I went back and forth in my head, the more confused I got about which would sound better.

I went to my Instagram friends for assistance and put it to a vote, keeping in mind that he would most likely end up pronouncing the word as 4 separate words and that I was only looking to make it pronounceable for him and not necessarily closest to the spelling of the word.

The general consensus was the latter, UH BILL IT TEES.

We began practicing it that way, but we ran into a snag:
When DC used “It”, he automatically turned “Tees” into “Dees” and he could not figure out a way to say the word with the IT and still be able to say Tees instead of Dees. He just couldn’t do it.

That is how it works with him. There are some words, even simple words that his mouth/mind cannot seem to maneuver and then there are words that I am surprised that he can pronounce. There does not seem to be a pattern to it.

After days of practicing, we went back to my original thought; using the UH instead of the IT.
That seemed to work out better for him.

They recorded last night and I do believe people will know exactly what he is saying!

He did a great job!

And yes, he is very proud of himself... as he should be.

***
Even though this really doesn't have a lot to do with the pandemic, I am going to add it as Quarantine/Pandemic Diaries: Part 28.5, since he would not be reciting the dialogue if they were going to be having an in person, live show this year.

All Quarantine Diaries Here 

*******************

In case you are new here: “I tell stories, most of the time; single individual stories about this or that. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works, never to "make fun of him"

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies."

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

Thursday, March 18, 2021

Quarantine Diaries: Part 28 - The Gateway to the Big Birthday

 As we all know, my birthday is just the gateway (or the practice round) to DC's birthday... and let me tell you, he was excited!

You would have had to read my previous blog post for this to make sense...
DC came home from his shopping trip to “buy Mom a birthday gift” (and we all know that he can’t keep a secret) but he said nothing. I was impressed at his ability not to tell me right away.
About a half hour later he piped up with.
“Mom, it’s a secret. Together in Paris necklace for Mom’s birthday”
Normally he would have announced it as soon as he walked in so the half hour he waited showed a little bit more restraint on his part. - March 11, 2021

***



One might imagine that DC’s vote for my BD dinner tonight is pizza and cake...

#LittleHints - March 13, 2021

*** 

Oddly enough he changed his mind and decided on Chinese food for Mom's birthday! I  already told you that he already put in his order for pizza, wings and cake for his birthday; so maybe he decided to take the opportunity to get in a different favorite on mine?

***

Just to be clear; I am not all that fond of cake.

Frosting? YES!

Cupcakes? YES! (only when there is more frosting than cake)

So I did not find it necessary to get a big cake for me. There was enough for one big piece for him and one big piece for Doug. 

Seriously... the pieces were big.

****

The boards arrived so I could take down the reminder notes in my living room.
Some had already been accomplished:
Dollar Store ✅
Tuesday Groceries ✅
Mom’s Birthday was over as soon as he had cake tonight ✅
Only one reminder left, might think?
No... There was something new to worry about. - March 13, 2021


***

All Quarantine Diaries Here

*******************

In case you are new here: “I tell stories, most of the time; single individual stories about this or that. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works, never to "make fun of him"

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies."

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

Tuesday, March 9, 2021

Quarantine Diaries Part 26 - Birthday Anticipation



March is always a big month for DC. 

It is my birthday month, which means "out" to dinner for him, or in this case "take out at home" dinner for him.

AND it is also HIS birthday month, which is much more important.

Both my and DC’s birthdays are this month - so you know he is announcing this daily (many, many times). Numbers were never his thing and you might remember when he was 28 - it was Twenty-eighteen (in DC speak), 29 was Twenty-nineteen. Now he’s turning 30 (!!!!!) this month, so 30 is now Twenty-Thirty. The funny thing is that he seems to have absolutely no problem pronouncing and announcing my age! No problem at all - clear as a bell.

- Facebook March 8, 2021

This year, celebrating my and his birthdays seems to be extra important to him and of course it is …

He has not really been able to go anywhere for fun in almost exactly a year. All he really looks forward to is getting takeout a couple of times per week.

I totally understand this. I cannot say that I always have the patience for the reminders and continuous questions, which have reached a record high this month, but I try.



Normally when DC gets himself in this much of a frenzy, it is when we are going on vacation. Over the years, I have learned that it helps if I just write out his vacation schedule on his phone and make it his wallpaper, so every time he wants to ask, it is there for him to look at. It really does make him feel better to have it right in front of him.

This does not help when he is at home and although putting everything on the calendar is a must, it does not keep him from asking. So to save my sanity, I made a sign to answer every question he has been asking over and over again. I am hoping this will calm him down a bit.
I really think I need to buy one of those signs with magnetic letters to hang up, so I am "off" to Amazon for one more pandemic purchase - Facebook March 9, 2021

The bulletin board with letters will arrive on Thursday. I am sure we will get a lot of use out of it, even after this whole pandemic is over.

I know that he is disappointed that he can't have the birthday that he usually has with his friends. I am trying to make this one special for him.

(More about that later)

Fingers crossed for a Happy Birthday for DC!

 

All Quarantine Diaries Here

*******************

In case you are new here: “I tell stories, most of the time; single individual stories about this or that. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works, never to "make fun of him"

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies."

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




Saturday, March 6, 2021

Quarantine Diaries: Part 24 - Christmas and the "Art" of Decorating

 


(Long time! No see! I'm really behind on posting)

It may sound a bit Scrooge-ish (not a word), but whenever I see a highly decorated house or watch one of those Christmas decorating shows on TV, my first thought is - "So who is going to take all of that down?"... always.

If you have been around here long enough, you know that DC LOVES his ornaments. 

If not, see below (all links open in a new window)

Easing my “Elf Envy” with ornaments and clues….



 We have always had a relatively large artificial tree but DC's ornament collection was much bigger than the tree. We were only able to use about 1/4 of this collection. The rest just sat in the cellar.

Because I am really limited on space, last year I bought an artificial tree that has no back to save space. It made sense to me since no one sees the back of your tree unless it's in the middle of the room. 

As it turned out, I wasn't a big fan of the looks of it (see: here), but we were stuck with it. I forgot about it so I did not get around to buying a new one this year.

We put the tree up and DC put as many ornaments as he could on it. 


Last year his cousin gave him some beautiful Mother Goose ornaments, which were too heavy (and wouldn't fit anyway) for the tree. We hung them on this metal thing I have hanging on the wall. We did that with all of the other ornaments he received as gifts as well.

So I stared thinking about all of the ornaments downstairs. Surely some of them could be hung on the metal thing and probably many other places.

I started digging through the ornament bags and brought a few upstairs.

And then I brought up some more...

And then more.

At this point I was determined to get all of his ornaments out.

I kind of went a “little” bit over the top trying to get all of DC’s ornaments out this year (he has so many that they all haven’t seen the light of day in years). Everyday he tries to sneak this Alice ornament onto one of the trees. And everyday I tell him it is too heavy for the trees.
I decided to hang it on the bowl it was sitting in.
Me: Is this okay?
DC: Yes!
Me: Do you promise to stop sneaking the ornament on a tree?
DC: (laughing) Yes!
He can now relax about this Alice ornament. - Facebook December 6, 2020

I mean, when would I ever again have this kind of time? The longest I have ever been out of work since got my first part time job at 16 was the 6 weeks after I had DC.

I used everything I had on the walls to hang ornaments from.






I found all of the ornaments he made for me over the years and all of his "Baby's First, Second, Third" Christmas ornaments.


(I understand that the puzzle piece is problematic but, we made that ornament way back when I used to be crafty and make ornaments for family. We used puzzle pieces only because I happened to have a puzzle that someone gave DC - he's never been a puzzle person. This was long before the puzzle piece was used by AS, or before I was aware of the puzzle piece's relation to autism)

They were everywhere. They were on every shelf... They were in a basket. 







I even bought two tabletop trees to hang some more (Let's talk about saving space? Let's talk about Pandemic spending?and laid more out underneath one of the tabletop trees.





About now you are saying "She has lost it.", but wait there's more.

All of his "food related" and Wizard of Oz related ornaments went in the kitchen. They went on the shelf, on stocking hangers and ornament hangers.


I even found room for my Star Trek ornaments!



Did it all look beautiful and Christmassy when I was finished?

No.

It looked like an ornament store.

DC was happy seeing all of the ornaments he had forgotten he had, so I guess that is all that counts.

Needless to say, I have been home waaayyy too long.

To answer the first question asked at the beginning of  this post....

It was me. I had to take them all down.

***

All Quarantine Diaries: Here

*******************

In case you are new here: “I tell stories, most of the time; single individual stories about this or that. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works, never to "make fun of him"

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies."

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