Week One of The World Shutting Down

Please understand that I am in no way complaining about or making light of the situation, but his blog is about autism; my son’s autism and the way his mind works and deals with things and that is just what I am going to write about.

The first hurdle was my birthday (Friday the 13th). Restaurants, stores and just about everything else were still open but I did not feel comfortable taking him “out to eat”.

As you know, my birthday is only important as a stepping stone to his birthday and as an opportunity to go out to a restaurant. He was very upset by this so we got his favorite foods and cake and celebrated at home. He was eventually all right with this – there was cake…

Overall, DC had a happy “Mom’s Birthday”. My day, on the other hand…

Friday the 13th sure lived up to it’s end of the deal …..
(sucky day… that is all)

The two boxes of Girl Scout cookies that came home with me after work yesterday…. gone.
#WhatCanIEatNext

Not going anywhere on my birthday lead to “a bit of” anxiety over his upcoming birthday. His birthday this year, was supposed to be spent in Pennsylvania for one of his Winter Guard shows. We were going to spend the weekend and do “DC stuff” (he always loves a hotel).

 

2019

DC was really looking forward to this show this year. We were going to stay over (nothing is better than a hotel and his “spot” at the desk for his computer and everything else) and make it his Birthday Weekend (the show was scheduled right on his birthday). Of all the things I had to tell him were cancelled, I think this was the toughest for him.

The small bright spot (for me, anyway) was that other people were cancelling all of these events and it wasn’t me keeping him from attending.

It is not my fault…..

DC is good about washing his hands before he eats and after using the restroom but he does not really understand why. It’s a rule. He does not understand germs (because he can’t see them) and keeping his hands away from his face.

He has gotten pretty good with all of the additional hand washing and fortunately I am here to remind him to keep his hands away from his face.

Because I don’t know what to call this so DC understands, I find myself calling what’s going on “The Sickness” so he understands that it’s more serious than a cold or the flu (and so he doesn’t blame me that everything is closed or cancelled). But every time I say it I feel as if I’m in some apocalyptic TV show…
The Phage?
The Pulse?

We have been going out for walks quite a bit.

Boredom Buster: This is how we walk with friends. Meet there. No handshaking, fist bumping or hugging and keeping a few feet of personal space between. We walked 3.1 CharityMiles for Special Olympics.

 

It was not until Tuesday when I had to go into the office, that he fell apart. He is having a hard time keeping track of things and the schedule keeps changing.

You know he was having a hard time when he completely missed St. Patrick’s Day!

He hasn’t mentioned St. Patrick’s Day at all this year; possibly due to our calendar having so many things crossed out that he didn’t notice? #HappyStPatricksDay

I began writing his schedule for the next day down for him the night before so he could relax and stop obsessing about it, but of course, things change and to him it was like I lied.

I was supposed to go into work again on Friday, but it was changed to Thursday – that threw him into another tailspin. (Also, I was supposed to have a Dr’s appointment and get my taxes done, both of which had to be cancelled due to the schedule change). The “writing things down” stopped working at this point.

His program finally closed officially yesterday – he hadn’t been going, but now I could tell him that THEY closed.

Not my fault.

The highlights of his week have been walking and grocery shopping. Explaining the shortage situation to him has not been easy but seeing the shelves empty did help him to understand it a little bit more – some of the time….

 

Some substitutions had to be made when grocery shopping…. Doug insisted that fake Cheerios are just as good as real Cheerios (we ALL know that is not true)
DC, this morning after trying them (he did try them, so I’ll give him that)
“Different Cheerios” and went to the kitchen to dump the bowl.
“Gross-nest” (DC-Speak – grossness?)
#StopHoardingCheerios

While we are on the subject, if any of you ever happen to meet or run into Doug, please let him know that Tootsie Rolls are not anyone’s idea as a substitute for chocolate. NOT EVER!

We were able to find the real Cheerios the following day. Phew!

We had to buy “rainbow carrots”. Let’s see how this goes..

Surprisingly, “Rainbow Carrots” went over just fine.  It was one of those “trying new foods” situations when you put whatever it is in front of him and don’t make eye contact – You all know what I mean. NO EYE CONTACT!

 

 

The “Social Distancing” police was out in full force today. With umbrella in hand to point at offenders, I was drunk with power. We walked 3.0 Charity Miles for Special Olympics.

 

A good indication of just how bored DC is just being home every day is his willingness to walk in the rain. No complaining. No screeching “I’m getting all wet”. He was just happy to be out and also able to see his friend, BB – at a distance, of course.

DC heading out the door for a hike with Mrs. H.
Me: No hugging. Don’t touch benches or anything…
DC: And don’t get lost.
#ThatGoesWithOutSaying

Still, every once in a while the entire situation gets the better of him and it takes him a while to calm down again, but HE is coping much better that expected. I am really proud of him and I tell him so daily.

#ConversationsYouNeverThoughtYouWouldHave
Firstly: I don’t have a lot of room here, so I don’t buy things to have “just in case” – which put us at a disadvantage when the hoarding began. Secondly: I don’t buy alcohol unless I know we are having company or something, but this was a sucky week at home and ever suckier at work so I asked Doug to pick up some wine on his way over….
Doug started to open the wine for me..
Me: Wait! Wash your hands!
Doug: I was going to open the wine and then wash my hands.
Me: But I already sanitized the wine bottle and now I have to do it again!

 

Tomorrow is DC’s 29th Birthday (Twenty-Nineteen in DC speak). He has resigned himself to an at-home celebration and the promise of a birthday dinner out in one of his favorite restaurants after “the sickness” is over. I hope that is good enough for him. It makes me sad that he can’t have the birthday he wants. There is no one who loves their birthday as much as this guy.

Unfortunately this lead to the constant inquiry as to when the “Sickness will be all done.”. He wants a specific date to put on the calendar and I can’t give him that.

I wish I could.

It may not be all about the cake…


This was not supposed to be another month of updated re-runs, but I keep running into the same situations or anniversaries so that is what has happened. I do have plenty of posts banging around in my head; I just haven’t gotten around to writing them.

DC’s Dad just came back from seven months in Florida and we are up against the same situation as in the post below. DC does not want to go out of his way to see him. Not because he doesn’t like his Dad – he just has gotten out of the habit of seeing him.  He’s been gone for as I said 7 months and now here comes this guy trying to mess up his schedule.

He called and asked to see DC on Sunday as Sundays turned out to be DC’s pick last year, but he immediately said no. He said no to Saturday as well until his Dad offered to take him out to dinner. He agreed but wanted to be sure that he was coming home right after dinner.

I am sure he will get over this as he did last year. I can not blame him for feeling the way he does, nor will I ever force him to go. I want him to know it is his decision. Once he gets used to him being back, I am sure he will come around, if he doesn’t then I’m sure we will figure out something so he will see his Dad without stomping all over his decision. 

So it may not be all about the cake this year, but I am sure, it will not be refused if offered…

Will there be cake? (from 5/2015)

cakeDC’s father was in Florida for the winter. He left in mid-November. DC did get to see him on the day after Christmas for dinner when DC, Doug and I were in Florida on vacation.

IMG_0478

 

His dad came back from Florida in May for the summer. One of DC’s first visits with his dad was on a Sunday. They went to his Aunt’s house for DC’s belated birthday party. His dad was not here for his birthday and his Aunt was ill at the time, so the party she planned to have for him right around his birthday had to be put on hold. They made up for it that Sunday though. DC was happy, he loves his birthday and nothing could be better than to be still celebrating his birthday two months later and let’s not forget the cake! Cake is very important to DC!

His father asked to take him on the following Wednesday, so DC went to his father’s house and came home in the morning in time for his transportation to take him to work. It was only a few days later on Sunday that DC had his seizure. He was supposed to go to his father’s on the following Wednesday, but we decided to cancel since it had only been a few days since the seizure and I was not comfortable letting him out of my sight.

A week later, his dad took him to his Aunt’s house again, this time to celebrate Father’s Day with the rest of his family. DC came home happily listing everything he had to eat because that is what is important. (He did ask me about “cake” before he left that morning and I told him that there may not always be a cake every time he goes to his Aunt’s house…..but yes, there was a cake 🙂 ).

When his dad returned him on that Sunday he asked if he could take him again on Wednesday. DC got frustrated and said “No! I don’t want to!”. He does this at times – he says no, without meaning to or without really listening to what he is saying “no” to. I told him not to worry, we had nothing scheduled on Wednesday and it would be fine for him to go to Dad’s. After his dad left he continued to go on about not going. I thought that he might be confused so I brought him to the calendar to show him that there was nothing going on that day. I wrote “Dad’s House” on the calendar. DC got angry and yelled “Cross Out! No!”.

From the many years spent crawling around in DC’s head trying desperately to figure things out, I had an idea about what was going on here, but I left it alone for a while. When I talked to him again a few hours later and got the same response, I decided I had to call his dad the next morning. As I said, I had an idea about what was going on but first I wanted to be sure that nothing happened, even something as small as the power going out for a split second, or the dog jumping on him, or a piece of furniture in different place, would be enough to cause this anxiety. There was nothing that he could think of.

I told him what I thought this was all about. DC hadn’t seen him in over 6 months. He was now used to not seeing his dad and only talking to him on the phone. Even before he left for Florida, he had not taken DC twice a week for many years, it was always once a week – every other Sunday and every other Monday. Now he is home and DC, with his own agenda in his head, and also quite used to not seeing Dad, feels as if Dad is “cramping his style” for lack for a better term. That, combined with his seizure and probably not wanting to sleep anywhere but home was making him a bit anxious. He loves to see his dad, don’t get me wrong, but he is used to what he is used to and it will take a little time for him to get used to something else. His dad suggested that I ask DC what day he would like to go to his house.

Later that day I did ask DC if he wanted to pick a day that he wanted to go. There was no fussing and no anxiety, it was his choice. He immediately wrote “Dad’s House” on Sunday. I told him that I would call his father to see if he was available that day. As it turned out, he wasn’t. I told DC that Dad had to work on Sunday (he didn’t, but it was easier than trying to explain “other plans”) I asked him if he wanted to make another choice. He chose Wednesday! The same day he was so adamant about not going!

Wednesday came and he was happy to go and he was still happy when he came home.

What have I taken away from all of this?

~ He needs time to get used to the fact that his father is going to be a part of his schedule again, at least until winter comes.

~ We need to make sure that DC is allowed to have some say in the matter and give him a choice of dates.

And….. you might think I am trying to be funny or making a joke, but I know my child…..

~ I am absolutely 100% certain that when I first gave him a choice and he opted for Sunday right away, it was only because he thought there would be cake……

 

 

 

 

Will there be cake?

cakeDC’s father was in Florida for the winter. He left in mid-November. DC did get to see him on the day after Christmas for dinner when DC, Doug and I were in Florida on vacation.

IMG_0478

 

His dad came back from Florida in May for the summer. One of DC’s first visits with his dad was on a Sunday. They went to his Aunt’s house for DC’s belated birthday party. His dad was not here for his birthday and his Aunt was ill at the time, so the party she planned to have for him right around his birthday had to be put on hold. They made up for it that Sunday though. DC was happy, he loves his birthday and nothing could be better than to be still celebrating his birthday two months later and let’s not forget the cake! Cake is very important to DC!

His father asked to take him on the following Wednesday, so DC went to his father’s house and came home in the morning in time for his transportation to take him to work. It was only a few days later on Sunday that DC had his seizure. He was supposed to go to his father’s on the following Wednesday, but we decided to cancel since it had only been a few days since the seizure and I was not comfortable letting him out of my sight.

A week later, his dad took him to his Aunt’s house again, this time to celebrate Father’s Day with the rest of his family. DC came home happily listing everything he had to eat because that is what is important. (He did ask me about “cake” before he left that morning and I told him that there may not always be a cake every time he goes to his Aunt’s house…..but yes, there was a cake 🙂 ).

When his dad returned him on that Sunday he asked if he could take him again on Wednesday. DC got frustrated and said “No! I don’t want to!”. He does this at times – he says no, without meaning to or without really listening to what he is saying “no” to. I told him not to worry, we had nothing scheduled on Wednesday and it would be fine for him to go to Dad’s. After his dad left he continued to go on about not going. I thought that he might be confused so I brought him to the calendar to show him that there was nothing going on that day. I wrote “Dad’s House” on the calendar. DC got angry and yelled “Cross Out! No!”.

From the many years spent crawling around in DC’s head trying desperately to figure things out, I had an idea about what was going on here, but I left it alone for a while. When I talked to him again a few hours later and got the same response, I decided I had to call his dad the next morning. As I said, I had an idea about what was going on but first I wanted to be sure that nothing happened, even something as small as the power going out for a split second, or the dog jumping on him, or a piece of furniture in different place, would be enough to cause this anxiety. There was nothing that he could think of.

I told him what I thought this was all about. DC hadn’t seen him in over 6 months. He was now used to not seeing his dad and only talking to him on the phone. Even before he left for Florida, he had not taken DC twice a week for many years, it was always once a week – every other Sunday and every other Monday. Now he is home and DC, with his own agenda in his head, and also quite used to not seeing Dad, feels as if Dad is “cramping his style” for lack for a better term. That, combined with his seizure and probably not wanting to sleep anywhere but home was making him a bit anxious. He loves to see his dad, don’t get me wrong, but he is used to what he is used to and it will take a little time for him to get used to something else. His dad suggested that I ask DC what day he would like to go to his house.

Later that day I did ask DC if he wanted to pick a day that he wanted to go. There was no fussing and no anxiety, it was his choice. He immediately wrote “Dad’s House” on Sunday. I told him that I would call his father to see if he was available that day. As it turned out, he wasn’t. I told DC that Dad had to work on Sunday (he didn’t, but it was easier than trying to explain “other plans”) I asked him if he wanted to make another choice. He chose Wednesday! The same day he was so adamant about not going!

Wednesday came and he was happy to go and he was still happy when he came home.

What have I taken away from all of this?

~ He needs time to get used to the fact that his father is going to be a part of his schedule again, at least until winter comes.

~ We need to make sure that DC is allowed to have some say in the matter and give him a choice of dates.

And….. you might think I am trying to be funny or making a joke, but I know my child…..

~ I am absolutely 100% certain that when I first gave him a choice and he opted for Sunday right away, it was only because he thought there would be cake……