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?


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”.


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 be 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

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.

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…

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.)

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.

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.

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 –


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

Quarantine Diaries: Part 27 – Anastasia and Pandemic Birthday Number 2

We are now heading toward celebrating DC’s 2nd pandemic birthday.

I feel awful because he is still waiting for his make-up birthday with his friends from last year because who knew back then we would still be in the midst of a pandemic. At the time I thought we would be able to celebrate “properly” sometime over the summer. Boy, was I wrong!

Making it even worse is that this will be his 30th birthday. Thirty is a pretty big deal and before all of this “sickness” started we were hoping to have a big bash with his friends like we did when they all turned 21 within weeks of each other.

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.

Take Another Step: Quarantine Diaries Part 26 – Birthday Anticipation

He already has his “takeout dinner” planned – pizza, wings and of course, cake.

The pizza must have pepperoni and cheese and the cake must have large frosting flowers; preferably in red or pink.

His birthday list is the same, or close to the same as it is for every birthday, Christmas or monthly Dollar Store visit:

29 markers (a change in number since the 72 markers he wanted for Christmas)



Jelly Beans

Yes, I know that these are the things that make him happy – and he will get them, but I am always looking for something that will really blow him away. It is not easy and I do not always succeed.

DC has always loved the movie, Anastasia. He has been watching it since it came out in 1997.

Over the last year or two it has become his go-to favorite, over and above all of the Disney princesses that he loves so much. Even more-so since the pandemic began.

The book is always in his hand and at the top of the book pile on the kitchen chair. He reads it every night… aloud before bed. He acts out scenes (very well, I might add) on a regular basis. He regularly informs me that John Cusack is the voice of Dimitri and Meg Ryan is the voice of Anya.

Of course Angela Lansbury is the voice of “The Grand Duchess, Marie, not Mrs. Potts and not Miss Price or Jessica”(because he must also tell me who they played before but are not playing now) and Bernadette Peters as “Sophie, but not Angelique (Beauty and the Beast Enchanted Christmas), Lady Larken (Once Upon a Mattress), The Witch (The Original “Into the Woods”) and The Stepmother (Cinderella). He will also add that John Cusack is not Jessie in Toy Story because that is his sister.

This movie is 24 years old and is not a Disney movie (although believe it is now considered a Disney movie?), so there was not much Anastasia merchandise to be had at the time it came out and even less now, 24 years later.

One of those accidental gift finds…DC wants pretty much the same things all of the time (or something so old or obscure that I have to resort to eBay). It’s hard to find him something other than the regular things on his list that will really make him happy. He wanted an Anastasia book (he already has a few). While searching to find one that he didn’t have, I came across a music box that plays “Once Upon a December”, the song that he haunted his virtual camp music class with all summer. Score!!!!!! He’s been playing it all morning!!! I also found an ornament for him and one for Mrs. H as a reminder that she hasn’t had to read Anastasia with him since March due to the pandemic.

Take Another Step – Anastasia

He still plays that song on the music box every night before bed.

So…. in order to make this birthday special, I went on a mission to find an Anastasia doll. Not an easy task since as I said, the movie is 24 years old.

I searched and searched and…

I found one!!!!! ONE!

Not only did I find the one Anastasia but I found Dimitri!!!!!

There was only one of those as well and being collectors items or not readily available ….. Ka Ching.

(It is ridiculous just how excited I was getting and still am, about finding these things)

I also came across a set with Anastasia AND Empress Marie (I confess that I am confused as to whether she is called Empress Marie or Grand Duchess Marie – but whatever). There was only one of those as well so I hemmed and hawed and went back and forth with it. I knew he would love having both of them but I also knew that Dimitri was just as important. I finally talked myself into it and decided I would save that set for Christmas.

During this Anastasia “spree”, I also came across a necklace… Together in Paris. Again, because Anastasia merchandise is so hard to find, I bought it without really thinking about it.

After the purchase was made I started wondering just what I thought he was going to do with it. I was thinking that maybe we could attach it to his key chain or his jacket zipper. I did not know, but then I had a thought.

DC loves to give me gifts. Although it does not always occur to him to want to get a gift for me, he gets really excited and takes full credit for any gift I receive that has his name on it. Now I rarely wear jewelry. I actually only wear it when DC presents me with a new “heart necklace”- his go-to gift when he is involved in picking the gift out, but I thought he would be really excited to give me the necklace for my birthday on Saturday.

Instead of just wrapping it up and putting his name on it (I have done that) I thought that I should let him make the decision himself. Doug is taking him to the Dollar Store this week so he can get his new supply of Band-Aids and markers and also to pick out something for me. I gave the necklace to Doug with instructions to show it to him and to see if he would like to “give it to Mom for her birthday”.

He may just opt to keep it for himself, I don’t know.

Either way, in a few days I will have a new necklace or DC will have a new keychain.

Whatever happens with the necklace, I am sure that DC will be over the top excited with his gifts when his birthday rolls around!

Is it weird that I am this excited about finding these things?


During all of these searches, I discovered there is/was a musical. I knew nothing about this. I haven’t researched it any more than that but, I will. If it is recent, it will certainly be something to look into when this pandemic is over.

Quarantine Diaries – All

Quarantine Diaries: Part 25 – The Road to Normalcy?

It has been a minute since I have written anything. I would not have imagined, being home for so long that I would not have the time to write. I cannot really say where my time is going, but it is. Also, our internet has been torturous over the last few months and not having the patience to wait for it may also have something to do with not writing (or reading). Our carrier says their system is overloaded with so many people working from home, which does not make any sense to me. Wouldn’t it have been even more over loaded back last year when absolutely EVERYTHING shut down and EVERYONE was home?

DC went back to his “job”(day program) in October. It was a hard decision for me to make.

Back in May, his supervisor/staff called me and asked if I would consider sending him back to work on July 15th. I told her “I can not make that decision now. We don’t know what is going to happen over the next month or two.”

In early July I received an email from DC’s caseworker telling me that his supervisor emailed him that DC would be back in mid-July and we needed to have a meeting to go over protocols! I let him know exactly what I had said to his supervisor back in May and now that the numbers had spiked I was not even considering sending him back.

We had to have a meeting anyway to discuss what types of protocols they had in place so I knew what was going on when I did decide to send him back. His supervisor called me a few days before the meeting and the July 15th subject came up again.

Supervisor: I am sorry if I misunderstood. I was surprised that you wanted to send DC back in July.

Me: I didn’t. I told you I could not make that decision at that point.

Supervisor: Yes, I understand. That is why I was surprised that you said you wanted to send him back.

Me: I didn’t say that.

Supervisor: I know but I was surprised that you were willing to send him back.

Me: I wasn’t.

Not only did the conversation not make any sense but it felt as if she thought if she said that enough times I would believe I actually said that!

We had our meeting. We talked protocols. I explained to both his caseworker and his supervisor that I was not comfortable sending him back this soon.

Caseworker: I understand. I agree. That is how most overprotective parents are thinking (yes, he actually said that while agreeing with me).

We decided to check in again in August to see if anything had changed.

We had that meeting in August to discuss a September date. This was not engraved in stone, if things got worse. I asked how many days he could attend.

Supervisor: As many days as you want.

We ended the meeting with a September date in mind. Before the meeting ended his supervisor said, “I have 4 more meetings this week so I don’t know how many clients will be coming back. I will call you to let you know how many days he can attend and we’ll schedule another meeting before that.

????? I guess, “As many as you want” really did not mean as many as I wanted.

She never called.

In August, with numbers being down, I started letting DC go to the grocery store with Doug. This eliminated the anxiety and constant calls to Doug about the grocery list. Unfortunately, there was a spike in September and I had to stop the grocery store trips and I also decided (even though I never got that call) that he would not be going back on the date we had discussed at our August meeting.

About a month later and after the date we had discussed in our August meeting, his supervisor called again. What did I think about October 1st? At this point, numbers had begun to level out so I was willing to talk about it.

We had another meeting close to the end of September and decided on an October 1st start date.

I was still panicked and on the fence. There were predictions of spikes come winter and I was torn between just keeping him home straight through and letting him have a bit of normalcy – even if it turned out to be just a month or two.

As we decided on October 1st, I asked again – “How many days can he attend?”

Supervisor: As many as you want.

Before the meeting ended his supervisor said, “I have 3 more meetings this week so I don’t know how many clients will be coming back. I will call you to let you know how many days he can attend and we’ll schedule another meeting before that.

Sound familiar? Does this sound like a vicious circle to you? I did to me.

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…

At this point I just “insisted” that he be able to attend 3 days. I didn’t care who else she was meeting with. She was meeting with me now and we needed to resolve this as this circle could just go on forever.

He started back 3 days a week on October 1st. There were/are only two riders in the van that takes him to his job. Everyone is masked and windows are cracked.

As difficult as it was for DC to get used to wearing a mask back when mask wearing was first encouraged, he is really good about it now. So I wasn’t worried about him wearing a mask all day. The number of clients at his program is low and they are split up into even smaller groups. Temps are taken in the parking lot each morning.

He was happy to be back at his job.

Once November hit, he was back 5 days.

Once he was back at work daily, I noticed that some of the anxiety he was experiencing and persevering over different things that he normally would not have, seemed to go away.

Because (as I have said before) he always seemed to be in-between loving staying home and the anxiety of missing work and activities and wanting to go back to work but missing staying home; he has developed a couple of new “things” since he’s gone back.

It started on October with stars. He drew and presented me with stars. Many, many, pictures of stars at all hours of the day and night and no matter what I was doing. Cooking, washing dishes, eating dinner or working on the computer – I had to stop whatever I was doing to make a big deal about the stars he had drawn for me. When he could not get to me in the shower, I would find them outside the bathroom door.

Just two days worth..

I am not talking about a picture here and there, I am talking about a LOT of pictures! Since it all coincided with his return to work, I was worried that something or someone was bothering him there, but I could not really get anything out of him. He seemed happy to go everyday and even begged to go when there was an unexpected cancellation. When that happened, he interrogated me all day long as to when exactly he would be going back. So work does not seem to be bothering him at all.

I am thinking this was just his way of transitioning back.

After Christmas, the stars stopped and he moved on to hearts. Same thing… all day… everyday.

I will not stop trying to figure this out but for now, I guess it is just going to be his new thing.

Other than that, we are trying to keep him busy. Camp and Best Buddies have done a few virtual events.

The biggest surprise was his winter guard team deciding to have a virtual season. I really thought we would be skipping another season due to the pandemic but they came up with a way. They are doing a fantastic job of it and he is loving it!


Our state has decided to distribute the vaccine by age only – taking disabilities out of the mix. I was extremely disappointed because I had hoped DC would have been eligible in February.

At this point DC will not be eligible until May.

I received my first shot last week. My second will be at the end of the month. I have been talking it up to DC since. I showed him where they gave me the shot and told him that it did not hurt a bit (it really didn’t). I need to get him comfortable with this because the vaccination sites are just that… sites and not his doctor’s office. I am afraid they will not be able to take the time with DC as his own doctor, would.

I mean, we have passed the point where I had to bring 2 people with me and I, they, the doctor and nurse had to try to hold onto him so they could give him whatever shot he was getting.

But… it has been a very long time since he’s had to have a shot so I am a little bit worried. I am going to keep talking to him about it so when the time comes, he is ready and not “very nervous about this”.

Hopefully, we will all be able to get back to something close to normal sometime very soon.

I cannot believe it has been an entire year!

Stay safe, everyone.


Quarantine Diaries – all

Tales from the Day Program – ALL

A Pandemic and Halloween

(AKA: Quarantine Diaries – Part 21)

As you may or may not know, DC LOVES Halloween. He looks forward to Halloween just as much as he looks forward to Christmas.

We really don’t know what Halloween will look like this year but I better think of something because DC is READY! I don’t know if he can face another cancelled activity or disappointment this year.

The thought of Halloween did not kick in as early as it usually does with him, but once it did, it was all I heard about.

It was hard not being able to give him any answers. I could tell him that there probably wouldn’t be the many parties that he is used to attending, but other than that – I could not say what would happen on Halloween night.

I did try to prepare him for not being able to trick or treat – just in case.

But we also needed to find some other Halloween themed activities because IT was October and October is all about Halloween from beginning to end.

As it turned out, we were able to find a few Halloween activities that were outdoors and/or drive through.

(Warning: We have come to the potion of the program where you are forced to look at my Halloween photos… You knew it was coming.)

We made our pumpkin purchases. DC loved the pumpkins with the warts. I did too.

Pumpkin Town: This was a drive through and it was really cute. Perfect set-up for a pandemic, but I think it is something we will do even after all of this is over (whenever that may be). DC especially loved the big pumpkin in the middle of “town”, which of course reminded him of Halloween Town. (Disney).

DBD Day: DC, Doug, BB and Doug’s friend went out for “Boys Day Out” (which has been renamed Doug, BB and DC’s <DBD> Day, but since there was another attendee, we stuck with the old name this time) at the corm maze. Masks were worn and dining was outdoors.

Camp Party:

So what can I say about Camp that has not already been said? Just as they did with on-line summer camp (you can read about that here), they went above and beyond for this on-line party.

Normally the camp parties begin with a pumpkin hunt and the painting of the found pumpkins. I wondered what they would do to replace the biggest part of the Halloween party.

Around 8pm the night before the party, I received a call from the camp director asking if I was home.

“We’re in your driveway”

The director and assistant director came to deliver a pumpkin, paint and other goodies for the party the next day! DC was totally excited to see them at our door! These people drove around delivering supplies to all of the campers that RSVP’d! Amazing!

Now… maybe I should have known this, but I “attended” the last board meeting via phone (I have not been to a board meeting any other way since the pandemic began, because I don’t want to bring DC to an indoor meeting).

I was listening to the meeting via Doug’s phone and all of a sudden, I could not hear anything. I kept yelling “Hello” but there was nothing. Thinking he had lost the connection, I called back.

I could hear for awhile and then nothing again.

More yelling and nothing.

I called back a third time and Doug said “Why don’t you just forget it. I’ll let you know what happens.” So I thought he was just having a hard time with his phone out at camp.

Later, he told me that he could hear DC making noise in the background so he muted his phone (apparently he does not understand that when he mutes HIS phone, he is muting things on his end, not mine and he would not believe me when I tried to explain this to him).

So he is muting his phone and because I can’t hear anything – I am yelling “Hello, Hello”. He can’t figure out why his mute isn’t working so he kept hanging up on me! If he had told me that he could hear DC, I would have muted MY phone and that would have worked out perfectly. I honestly did not think DC was being loud at all.

Someone other then me needs to explain this to him.

Please and thank you.

DC only chose two costumes this year because we knew most of the other parties he normally attends would probably be cancelled.

He chose the Genie from the new Aladdin.

So when we bought the costume, he did not want a blue face. Today, an hour before the online party, he decides he wants a blue face. I always buy powder eyeshadow for Halloween face colors (I don’t wear eyeshadow so it’s not like I have any hanging around – just what’s in the Halloween makeup box) and I was only able to find a container with just a little bit left. It’s hardly a blue face but it will have to do.

There was pumpkin painting and movie watching and music. DC broke into dance at one point. They had a fantastic time.

Salem: We haven’t been to Salem in years. Fortunately we have been so many times that we did not miss going to the regular museums or stores. It was nice just to be there – to eat outdoors, visit a few outdoor places and visit DC’s once favorite bookstore (due to the pandemic, we had to make an appointment and only so many people could go in at one time – that was fine with me).

Note: The crowds you see in two of these photos were people waiting to get into stores. We did not have to walk through them. There was plenty of space for distancing on the right of these sections.

ARC Drive-Up: The ARC that DC attends many activities with during a regular year, scheduled a drive-up hot chocolate and goodie bag event,

Just something quick for all of these people who have not been to an activity since March.

Happy Haunted Hollow: Another drive-through event (which I believe is an annual thing, but usually a walk through).

Mrs. H stopped by today to drop of Halloween treats for DC. He was so happy to be able to see her today (he hasn’t seen her since March, when the world closed down). He was also happy for the treats. Last week his Aunt Lisa dropped off a Halloween bag of treats, including a new package of fake mustaches. Then we have the multiple band-aide packages that came in for him from my friend Amy in GA. (You know how Amazon takes one order and ships it in many boxes on many different days? – Well that shipping technique worked out just fine with DC). I am thankful for the people who understand just how important Halloween is to this boy and helped to make it a little more special for him this year. ❤️ 10-30-2020

Best Buddies Virtual Friendship Walk:

Doug stepped in to replace his buddy/friends since walking with me is boring. #BestBuddies #Virtual #Friendshipwalk #SPN

We did not have a new costume for this, so I ventured into my costume closet and was able to put together “Castiel” and “Bobby” (Supernatural) out of other costumes and regular clothes.

The trench coat was from his “Twin Peaks – Agent Dale Cooper” costume from a few years ago. We had the wings because he was going to be the “Teen Angel” to my “Beauty School Drop Out” for a party in the Cape that was cancelled due to the pandemic back in April.

I think the only thing I had to buy was Bobby’s beard. I suppose I could have asked Doug not to shave for a few days but, you know me…

My niece commented that Doug’s “Bobby” was spot-on. While I take full credit for all costumes (he really doesn’t know who he is dressed as. I guess all of those Supernatural conventions did not stick) I thought he also looked like the creepy lumberjack version of Dexter.

Halloween Night:

On Halloween morning, we still did not know what we were doing Halloween night. Much of the town had announced earlier in the month that they would be giving out candy, but then the pandemic numbers began to rise and people were beginning to rethink the situation.

I knew I HAD to bring him somewhere in costume. We planned to visit his Grandmother early, before it got dark because I did not want her to have to put her porch light on, since she was not intending on giving out candy this year.

By mid-morning I received a call from Tonya, Salli’s mother, who had called around their neighborhood to see if anyone would be out giving candy. She got enough affirmatives to make it worthwhile. Trust me, DC would have been happy with one or two houses, as long as he was able to do it in costume.

Grandma’s House:

Knowing that she would not be giving out candy and not wanting her to have to go out and get anything, I told her that I would bring something for her to put in his bag.

Grandma: Oh no! I’ll pick up something. I want to.

(My mother would spend all day, every day in Stop and Shop if she was able.)

Me: Okay, but don’t get carried away. Really, just a piece of candy to put in his bag.

Grandma: Oh, don’t worry.

(Please note the size of the “gift” bags. This is not getting carried away.)

Salli’s House:

As we were driving home from my mother’s at 4:30 – in broad daylight, I noticed a whole lot of people out in their yards with their candy tables and firepits already set up and kids already walking around in costume.

Panicked, I called Tonya because I thought I had missed something. Did they announce that Halloween would begin earlier? Did I miss this announcement? I asked my neighbor who was out with her candy, but she just said she was getting anxious and came out early. I told her that she was not the only one out early.

Fortunately Doug had already arrived to give out candy at my house while we were out. So he got himself set up in the yard with his candy grabber in time for a bunch of kids to come by.

My other neighbor was confused and asked “Don’t they usually trick-or-treat when it gets dark?”. I didn’t have an answer for him, but they got ready to give out candy early as well.

By the time we left for Salli’s, we had already gotten more kids than we have had in years (there is no rhyme or reason for the amount of kids or the absence of kids in any given year). Doug did tell me later, that no one else came the rest of the evening.

DC and Salli made the rounds and went enough places for both of them to be happy. We were missing Candi this year because they were dog-sitting out of town, so Halloween was almost normal, but they missed their friend.

I have to say that I liked the earlier hour and the fact that most people were outside giving out their candy.

The Candy: I had already talked to DC about the trick-or-treat candy. I bought candy for him to have when he got home. There was enough in number and of an assortment to keep him happy on Halloween night.

I told him that we would put his trick-or-treat candy away for about a week (because of “the sickness”). I was not wiping down all those pieces of candy.

He was fine with that.

We came home.

He had some pizza.

He had some candy.

He was fine.

Not a bad Halloween after all.

My Annual Halloween Reminder – Please Be Kind

DC always enjoyed the costume and candy part of Halloween, but it took years before he really understood the waking around to get said candy and years after that before he understood that he could not walk into people’s houses.

He could not understand why we were ringing the doorbell and not going in.

Halloween, now is his absolute favorite.

He has a costume for every party and another for the big day.

I don’t feel that I should have to take that all away from him because some people see him as “too old” to trick-or-treat.

Like many children and adults with autism, his interests are limited and when he really shows an interest or enjoys something out of what would normally be thought of his “comfort zone” – you better believe that we are going for it; all the way. 

Please be kind if an adult in costume, or a child without a costume due to sensory issues comes to your door.

Their parents will handle it if they try to walk into your home or don’t understand “take one piece”.

The blue pumpkins??

My opinion (and my opinion only) is that they are just another attempt to make our children conform to the way society believes everything should be done. Do I believe they will help to raise awareness? No. I imagine that the folks who need to be educated will not even be aware of the existence of the blue pumpkin. How about we just do not force kids to say Trick or Treat in order to participate in Halloween?

Not having the ability to say “Trick-Or-Treat” is okay… really. 

Don’t try to force it. 

It IS everyone’s Halloween. #Autism#Halloween


(Originally posted October 2018)

Quarantine Diaries: Part 18 – The Anxiety

After DC got over the initial anxiety of “the sickness” and staying home, I mentioned that I was seeing so much growth in him during the time we have been home.

He would see dishes in the drainer and put them away – without me asking.

He then moved on to just doing the dishes when he saw them; again, without me asking.

Sweeping the floor.

Folding the laundry.

Adding things to his grocery list that we actually need – like his toothpaste or his mouth wash, when he’s running low.

But somewhere around the end of May, things began to shift a bit.

He started by showing me the first Monday in June on the calendar and insisting that “the sickness will be over”.  When I told him that I did not think so, he moved on to the following Monday. This went on and on. I don’t know why June or why Mondays but he was very insistent.

Some of this new-found growth started to shift and some began to morph into repetitive behavior.

He became fixated with emptying the bathroom garbage pail. Because of the pandemic, we have been using paper towels in the bathroom (and kitchen) for hand drying.

Paper towels were not something I ever purchased because DC would just shred them and they would end up all over the place.

From 2014:

Paper Towels: Paper Towels are for shredding and only for shredding. On the rare occasion that I do buy them, they have to be hidden on top of the refrigerator. Hiding the paper towels makes them not very convenient for me to use and forgettable, so there really isn’t any point  in buying them at all.

I have to say, he is much better about paper towels at this point.

But, back to the bathroom trash can…

He took to emptying it a few times a day; whether it needed it or not. He would use 3 small garbage bags for the contents of the one small can.

I had to hide the bags finally and ask him to just bring the pail downstairs to empty it in the kitchen garbage can.

Where he was once washing the dishes without being asked; he was now only washing HIS dishes. But not ALL of his dishes – just the one particular small white bowl that he uses for his snacks and a small glass that he received as a gift from the theater where he volunteers.

Both of them are washed, dried and put away many times during the day.

He will still wash the dishes IF I ask him to but he no longer washes or dries on his own.

The Grocery List: 

DC will still make the list and he is still good about adding things other than his paper, markers, bananas, garlic and band-aids. A few times, when he thought he had forgotten to add something, he called Doug (who was doing our shopping for us so I would not have to bring DC into the grocery store) to make sure he added whatever it was to the list.

This morphed into calling Doug at times, 2 or three times a day to remind him of things before he even picked up the list. The list was still hanging on the refrigerator at home, but he still felt the need to call Doug numerous times to remind him.

As soon as one list leaves the house, he begins the next week’s list.

Reminding me:

As you know, when DC knows he is going to do something – anything, he has the tendency to “remind me” of whatever he is looking forward to 796 times per day. This is not anything new.

The difference now is that he follows me around angrily yelling at me “I want to go swimming! I want to go swimming!”, as if I hadn’t already told him that, yes he IS going swimming.  This can go on for days. Nothing I can say of do will stop him.

The “angry all of the time” really did not begin until on-line camp ended in August (I will talk about camp eventually) – his last remnant of normalcy, I guess.

I get it, I really do.

He’s had enough. Truth be told, so have I.

  • Being home for 6 months.
  • Trying to keep busy.
  • Not being able to see his friends on any sort of a regular basis (or at all).
  • The storm and power outage (5 days) in August.
  • No WIFI for 3 more days after the power came back.
  • Missing the last week of on-line camp due to the power and WIFI
  • He misses going to his “job”.
  • He misses going to his volunteer job at the theater.
  • He misses Mrs. H.
  • He’s done with all of this.

And… Halloween is coming. He is very anxious about Halloween being cancelled.

I do try to explain to him that it may not be the same this year but we will figure out something.

So… what did all of the anxiety over all of this lead to?


He has shingles.

This was certainly not on my 2020 bingo card.


Quarantine Diaries – all

Quarantine Diaries – Part 17: Stormy Weather

I usually use my other blog (Take Another Step – Life With DC) for posts that use my Facebook/Twitter page posts, but I decided to use them here since most of it has already been written and truth be told, it is easier.

On Tuesday, August 4th we were hit with tropical storm Isaias.

Day 1:
Wow! The wind is really picking up! DC is now just following me around staring at me (between yelling “I am brave”) – lost power 4 times – fortunately came back. Not a fun day in DC-Land
DC is so wound up about the storm, that he doesn’t even care that I am watching the weather (normally not allowed 2 watch the news or weather because that will bring on a storm in DC’s mind) – he’s more concerned about the power that keeps going out. 

After teasing us for a couple of hours with the power going out and coming back and going out again… it went for good.

Originally the power company estimated that we would have the power back by 6:00 PM that day.

6:00 PM came and went and the estimation was upgraded (or downgraded) to 3:00 AM.

“I’m waiting. I’m waiting for the power back on. I’m waiting. I’m waiting. I’m waiting for the storm is passed. I’m waiting, I’m waiting, I’m waiting”
Repeat 786 times.

I really do not have to go into detail about how “well” DC was taking all of this, but I figured if I could just get him to go to sleep, there would be power in the morning – and everything would be fine.

DC is sleeping. Glad I had some battery left on my tablet. Hoping there’s power by morning.
#LALaw Reunion (Stars In The House – LA Law Reunion)


Day 2:

4:51 AM – Still No Power:

I’m still awake …
it’s bad enough not sleeping on a regular night when I can at least have the TV on, but this is excruciating.
(Fortunately, Dale is sleeping) 

DC sleeping did not last very long. Since the pandemic began, DC has been sleeping later and later everyday, but this did not carry over on this day. He was up at 5:30 AM, just as I was finally falling asleep.

Did I mention the heatwave? No?

We were also in the midst of a heatwave.

Doug, convinced that the power would be back the next day brought up going to a hotel because by lunchtime not only did we not have power (or water because we have a well – but we did have some water for some reason and I have not been able to determine why. So let’s adjust that to we had water for the moment, but had no idea how long it would last), no phone, no internet but we also lost cell service. What would I do if something happened and I couldn’t call the police, fire or an ambulance?

Also 95% of the town and surrounding area was out, so there was really no place to go to get anything, close by.

DC was not all that thrilled about going to a hotel. Normally he loves nothing better, but just the thought of the power being off at home made everything different for him.

Now, the last thing I wanted to do was to go to a hotel. I mean besides a few trips to a restaurant with outdoor seating and walking on the trails, we have not been anywhere throughout this pandemic. Doug hasn’t been inside of our house since this started. But… Heatwave, No Power, No Water, No Phone or Cell Service – it was a no brain-er.

Still no power at home, but he got himself some chocolate cake with Oreos and he’s smiling – (cake AFTER wings and fries, of course)

We tried to treat it as a “Driving Around Vacation”. We found a room in Mystic, one of his favorite places.

We bailed. Probably for nothing. Hoping to come home to power tomorrow, but I’m hearing it may be much longer. He’s happy for now.

DC, in his spot. Doug had to move half the room around as the desk didn’t have a chair?!?!
I wiped down and sprayed everything before I let DC and Doug in. I got a little carried away with the Lysol and am now choking to death (windows did not open as wide as I assumed they would).
I’m sure everyone on this floor is reporting the “infected” person in room 200.
I’m sure they will be throwing me out shortly.


When we left home earlier we were assuming that we’d have power back tomorrow. Now some estimate it at 5 days to a week! Hope we can find places to go for that long! Hotels are filling up fast!


Day 2: 

Because Doug had a dental appointment, we had to move to a hotel in Niantic, a little bit closer to home  (really not all that much closer).

But we spent the day in Mystic Village before moving on.









As happy as he was to be “on vacation”, he was far from “all in”. He could not relax knowing there was no power at home. That was all he thought (and talked) about.

Nice day yesterday – still no power at home. Finding things to do but DC is still obsessing about the power outage at home. He doesn’t necessarily want to go home, but wants to know there is power there.

On to the next hotel:

I learned my lesson from the first hotel and opened the window – WIDE before spraying everything. When I say “everything”, I mean everything. Pillows, blankets, sheets, bedspreads, chairs, shower, the air and anything else that could not be wiped down.

Then, again I wiped down everything.

After that was complete, we made sure that no one would enter the room for any reason while we were staying there.

Still ‘vacation-ey’ but DC was still not all in. I believe he thinks that if he is not home, the power will not come back or he wants to be there to witness it come back. He just wants to know it’s there.

We were coming up on the weekend, meaning Doug had to work on Saturday and Sunday, so we had to switch hotels once again so we would be closer to home and I would not be stuck out in Niantic with no car and nothing to do within walking distance.

Switching Hotels: There have been plenty of vacations where we did not stay in the same hotel for the entire vacation. Last year we took a week and a half long “driving around vacation” and moved around a lot – more than we ever have. We were having a very rough time with DC and finally realized that moving around to too many different hotels did not go over that well with him. So this was a concern, but something that had to be done.

Not only were we moving to a different hotel, but this hotel was only about 7 minutes from our house, so no more beach scenes or eating out by the water in an interesting place.

This would just be boring.

On Sunday afternoon, DC and I drove home to empty the refrigerator and freezer to have it all ready for garbage day on Monday. A neighbor approached us with new information on the power outage:

We have just been informed that the only reason we still don’t have power now is that Eversource and Frontier are arguing about who owns the pole!
We could probably have had power yesterday or even Friday evening!

After the neighbors got together and called our town councilors, power company finally showed up, cut down the tree, but left again.

Narrator: After being without power and moving from hotel to hotel for 5 days, the power went out in the hotel. The “boy” having coped better than expected until then… was DONE – loudly.

It was only out for about 20 minutes but it was enough to send him into a tailspin, as you might imagine.

By Monday, we had been staying in one hotel or another for 5 days.

DC and I were in the car last night. I was telling him that I was proud of him. First: the pandemic and now 5 days without power during a pandemic (not that it hasn’t been “trying”- trust me, it has been). He’s handled it better than I would have expected.
We were talking about how everyone is crabby because of the power (us included) and that it is okay to be crabby sometimes.
DC (adding his two cents)”Waiting, waiting, waiting for the powers to come back. He waited and waited and Then He Went Nuts
I have never heard him say anything like that before and I tried not to, but yes – I laughed.

My neighbor texted me Tuesday morning. The power was back!

Doug stayed with DC in the room while I went grocery shopping and home to put away any remaining evidence of the power outage. This was the first time I have gone anywhere by myself, other than that 10 minute ride to the convenience store back in May, since March 19th.

And on the sixth day… we have power!
No internet, phone or cable – but we have power.
Now DC does not want to come home

Now that the power was back, DC no longer was in any hurry to come home. He called me to tell me this. Doug kept him for the day and they “did lunch” and dinner.

DC arrived home around 7pm.

Home! DC is nervous. He follows me into every room. I’m sure he’d feel better if we had WiFi – everything isn’t back to normal enough for him yet.
When he gets like this, he tries to keep his mind off things by being overly excited about whatever he thinks he needs to be excited about:
“I am DC, and this is my story…
Our ‘powers’ are back. We are watching DVD’s. We stayed in the
‘O-tel’. We are home”
‘This is my story’ 😃 You know this guy watches far too many movies.

On Tuesday night (actually Wednesday morning) the power went out again! Of course we were both awake because nobody sleeps around here any more. It only lasted a few minutes, but HE WAS DONE!

Just how preoccupied was DC with the power? Bookstores are always on DC’s agenda whenever we go away. He normally does not stop asking until he gets to go to a bookstore. Because we are in Mystic and Niantic quite often, DC knows where the bookstores are.

He never asked once! Not Once!

We waited another 3 days for phone, cable and internet (see: Quarantine Diaries Part 15)

It will be a long time before he gets over this one.

A long, long time.


Update to Quarantine Diaries Part 14: Pandemic Buying :

A generator and rechargeable light bulbs have been added to the boxes sitting in my living room. Now I will have to figure out how to use it … and where to put it.


Quarantine Diaries – all