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.

***

 

‘Twenty-Seventeen’

I wrote this post when DC turned Twenty- Five. I re-posted it when he turned Twenty-Six, or ‘Twenty-Sixteen’ in DC-speak.

Twenty- Five was hard to wrap my head around. ‘Twenty-Seventeen’ (27 in DC-speak) is even harder. We’re moving closer and closer to 30 and I may never get over that.

Many times over the course of a day, DC will tell me that he loves me, complete with the “I Love You” sign. I, of course would say and sign it right back. This has morphed over the years in to our own little thing, where we connect our two “I Love you” signs into one and I love it!

This child is the love of my life. He is my joy.

My wish for my boy is that the rest of his life is filled with the love and happiness he brings to me every day.

Happy Birthday to the guy who will always be my baby.

I love him “Magly”

Twenty-Five


6 3rd party_0003

This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).

TWENTY-FIVE!!!!

I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, every day since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.

‘Happy tears’ – I told him. He loved that.

He has come so far in those 25 years….

 

From the boy whose only word until he was almost 7 years old was “”Momma” –

To the boy that eventually moved on to –

“Mommy” – and then –

“Mother” when he’s feeling a bit more formal and/or reciting Disney.

To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

 

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –

To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

 

From the boy with the very limited menu who I thought would never gain any weight –

To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

 

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –

To the man who can still have the random delayed reaction,  but now his Mom can usually recognize it and figure it out much more quickly.

 

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –

To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.

IMG_4131

 

From the boy who, I was told would never speak

To the man who never stops talking.

 

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying,  “If he wasn’t so loveable, I would think he hated to be touched”

To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.

I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.

If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……

IMG_4076

 

 

 

 

 

 

 

Happy “Twenty-Sixteen”

Here we are again. An entire year sped by in the blink of an eye. DC will be celebrating his 26th Birthday next week, or as DC likes to call it – his “Twenty-Sixteen Birthday”.
Even though he has been announcing it daily since the calendar flip to March if you were ask him how old he is (or will be) he will almost every time tell you that he is 18. That is always his first response. When asked a second time, he will tell you Twenty-Six. He does know the number, what that number means to him other than cake, friends, ‘out to eat’ and gifts, I really do not know – but he knows the number. Twenty-six!

He does know how to say the number, it’s the “th’s”, “st’s” and “nd’s” that he just can not grasp. He tries but they do not make sense to him. I remember the time that he announced to anyone who would listen, including the check-out girl at the grocery store, that it was “Mom’s Fifty-tooth birthday”. So instead of his 26th;  DC’s ‘Twenty-Sixteen” birthday it is.

I wrote the following last year on his 25th and there is really not much more I can say about this boy of mine. He makes me proud every single day. On the other side of that joy; the older he gets, the older I get and my worry about the rest of his life gets overwhelming at times. I want to know that he will be happy. I want to know that he will be well cared for. I want him to have the best life possible. I want to KNOW all of this now. That is the only thing I want or would ask for if granted a wish.

Happy Twenty-Sixteen beautiful “boy”. I love you ‘Magly’.

****

From March 2016, imaginatively titled:

Twenty-Five!

 

6 3rd party_0003

This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).

TWENTY-FIVE!!!!

I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, everyday since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.

‘Happy tears’ – I told him. He loved that.

He has come so far in those 25 years….

 

From the boy whose only word until he was almost 7 years old was “”Momma” –

To the boy that eventually moved on to –

“Mommy” – and then –

“Mother” when he’s feeling a bit more formal and/or reciting Disney.

To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

 

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –

To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

 

From the boy with the very limited menu who I thought would never gain any weight –

To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

 

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –

To the man who can still have the random delayed reaction,  but now his Mom can usually recognize it and figure it out much more quickly.

 

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –

To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.

IMG_4131

 

From the boy who, I was told would never speak

To the man who never stops talking.

 

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying,  “If he wasn’t so lovable, I would think he hated to be touched”

To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.

I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.

If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……

IMG_4076

 

 

 

 

 

 

 

Twenty-Five

6 3rd party_0003

This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).

TWENTY-FIVE!!!!

I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, everyday since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.

‘Happy tears’ – I told him. He loved that.

He has come so far in those 25 years….

 

From the boy whose only word until he was almost 7 years old was “”Momma” –

To the boy that eventually moved on to –

“Mommy” – and then –

“Mother” when he’s feeling a bit more formal and/or reciting Disney.

To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

 

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –

To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

 

From the boy with the very limited menu who I thought would never gain any weight –

To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

 

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –

To the man who can still have the random delayed reaction,  but now his Mom can usually recognize it and figure it out much more quickly.

 

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –

To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.

IMG_4131

 

From the boy who, I was told would never speak

To the man who never stops talking.

 

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying,  “If he wasn’t so loveable, I would think he hated to be touched”

To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.

I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.

If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……

IMG_4076

 

 

 

 

 

 

 

Secrets, Surprises and Pizza…………

shhh

Yesterday‘s post,  a re-posted portion of an earlier post with some additions touched on DC’s inability to keep a secret and/or the real possibly that he really does not understand the concept at all. The portion that I did not post yesterday delves into the subject a bit more.

Because I do not like to post more than once or twice a week, I was saving the second part of the original post for next week. Today is my birthday (it is official – I am OLD!) and DC, being DC just could not contain himself. The events of this morning ran right along the same lines as the post I was saving, so I am posting it today.

It is all he talked about all week. Just to be clear, he is not really excited about my birthday, he is excited about the prospect of going to dinner. Today he is getting lunch and dinner as I am going to meet him at his job for lunch and then out to dinner later – and we wonder why I can’t seem to lose any weight….seriously.

His official birthday observance activities started yesterday with a phone message, that of course he had help with (video at the end). He loves doing things like this. He loves the praise he receives and yes, he does love it when something he’s done makes me happy.

The moment Doug left yesterday, DC began telling me about the “Cards in the Drawer surprise for tomorrow – Mom’s birthday“. Apparently they had hidden birthday cards in the coffee table drawer. Then he decided to show me the “Cards in the drawer for tomorrow”  – He put them back, I suppose so he could “surprise” me with them today.

The first thing he did this morning after saying “Happy Birthday, Mom!” was to give me the surprise cards. There were two – one from DC and one from Doug. I am not sure that Doug had intended for me to have them already and I didn’t want to phone and wake him at 6am, so I opened the card that was from DC. I told him that I would wait for Doug to open the other. As I said, DC loves praise and loves to give me gifts so after I thanked him for the beautiful card and gift, he presented me with a gift my friend at work had given me the day before. (more praise, please). I am sure he will continue to present me with random items from around the house for the rest of the day as he did on Valentine’s Day after I finished opening his gift.
photo2

A secret or surprise is never safe with DC and he will be taking credit for any and all gifts or cards that I receive.

And tomorrow (actually, probably tonight as soon as we return from dinner when in his mind my birthday is officially over) … he will begin to obsess about our trip to New York the day before his birthday next week (with best friend “BB”) and the Winter Guard show in New Jersey ON his birthday.

 

Below is the secrets and surprises portion of the original post I mentioned earlier:

Secrets, Surprises and Pizza…………

We were asked to write a memory for his Winter Guard Director’s Birthday. It was a surprise. I worried that he would give the surprise away before her gift was presented to her 3 weeks later.

Just what is a secret?

A secret, is DC whispering in a raspy voice louder than his already very loud voice.

A secret is pizza for breakfast.

There are times, not often, but there are times, when we have left-over pizza in the house. When there is left-over pizza, DC loves to have it for breakfast. This happens all of once every couple of months, but I know my son. If anyone were to ask him what he had for breakfast, he will answer pizza. If someone should ask him the next day, he will answer “pizza”, not because he had it again, but because 1) That is what he would have wanted to have 2) It becomes a standard answer because he is tired of answering questions 3) That was his favorite breakfast that week so that’s his answer and he is sticking with it.

Not wanting people to think I give him pizza every morning, we decided to call it “Secret Breakfast”. Well…. as I said, DC doesn’t understand the concept of a secret, so anytime we go out with friends for pizza, or we are at a party where pizza is being served,  he always begs for “Secret Breakfast” – at which time I have to explain what “Secret Breakfast” is to my friends or other parents, (because of course, they ask – wouldn’t you?) completely defeating the purpose of the secret part of “Secret Breakfast”. At this point “Secret Breakfast” is just something we call pizza, people now just ask him if he wants to take some home for “Secret Breakfast”, and yes, they also call it “Secret Breakfast” when they offer.

What is a surprise?

A surprise pretty much runs along the same lines as a secret. If we buy a gift, and I tell him not to say anything because it is a surprise, the very first thing he will do when he sees the person that we bought the gift for is:

– Go over to that person, point at them  and says (to me) “Don’t tell anyone, surprise, shhh” and many times he will even announce just what the surprise is. I suppose because he is addressing me and not the person, he thinks he is not giving it all away.

Knowing all of this, I should have realized that the next time we went to Winter Guard practice, he would ask about Mrs. F’s birthday – by practice day it was still two weeks away. I was worried that if he mentioned it in front of her she would know that something was in the works. There would be no other reason for DC to know that her birthday was coming. I reminded him over and over and held my breath for the next two weeks. Fortunately he did not give it away, not for lack of trying though –  he did mention it a number of times at practice but luckily she was not close enough to hear it.

Historically there has never been a gift or a surprise that has not been revealed early by DC. Most of the time I opt not to even tell him, but in cases like this when he plays a part in the surprise by either choosing a gift, or writing a card or in this case, drawing a picture, it can’t be avoided.

We just got very lucky that all of his “Don’t tell anyone, surprise, shhh” (‘s) all happened out of earshot of Mrs. F.

******

My Birthday Phone Message:

 

(and just a thought…. it’s my birthday, wouldn’t someone love to come and clean my house? Just once… I don’t ask for much. Or the car…. the car could use a wash….. anybody?)

 

 

 

March Flashback -“A Little Bit of Faith” and Happy Birthday, Mrs. F!

March is normally a very busy month for us. DC and I are both March “babies” and as you may (or you may not) know, DC views his birthday as if it were a National Holiday – I admit that I might be a bit guilty of planting that thought into his head ….. just a bit.

Other than the birthday observations/festivities, the theater season is in full swing so he is volunteering there more often than he does the rest of the year.

We are also right in the middle of Winter Guard season.

Winter Guard season runs from January through mid-April with an additional show in June at the Special Olympics Summer Games Opening Ceremonies.

The friends and family show is always the first show of the season. So far this season at least 3, possibly 4 practices have been cancelled due to the never-ending snow we have been cursed with this winter. So many rehearsals were cancelled that the team was still putting this routine together 15 minutes before this show began on Monday. This team and their coaches were still able to pull it together and put on a great show!  This show will continue to evolve and change right up to the last show  in June.

(This video was cartooned (cartoonized?) to ensure the anonymity of the participants)

2015 Friends and Family Show – ROAR –

 

 

The following is a piece of a post from September 2014  – Secrets, Surprises, a Little Bit of Faith and Pizza…………” and this year I will be sure to post it on time! Happy Birthday, Mrs. F. – Last year’s story but right on time for this year.

                                                               “A Little Bit of Faith”

The Guard

This past February all of the Winter Guard parents were asked to contribute a short story or memory about our Winter Guard Director. She would be celebrating her “-Mumble, mumble -th” Birthday in March. Her son wanted to put together a book of memories for her.

DC has been a participant with this special needs Winter Guard team for 8 or 9 years. He really loves it, even though at first he had a really tough time focusing and rarely did anything close to the moves that everyone else was doing. He didn’t care. He wanted to wave his flag. He has improved very much over the years and still enjoys participating. He loves the performances most of all. He loves the attention –  he loves the applause. He is the only one to take a bow while the rest of the team is in the “end of performance” pose. (I am sure there is a proper and official name for that, but “end of performance pose” is the best I can do)

I wrote up my memory, DC drew a picture and we sent it along to the director’s son. Had I been really thinking, I would not have told DC about the birthday. It was still 3 weeks away and DC is always very excited about birthdays. DC also does not understand  “surprise” or  “secret”. Knowing this, I was very concerned that DC would give it all away.  He did not, not for lack of trying, but he did not.

I saved the story to post at a later date, after her birthday so as not to ruin the surprise. My mind, being the steel trap that it is, filed it and forgot to post it. It took me six months to realize I had not posted the piece.

So……

A very Happy Birthday, “Mrs. F”!

 

The one event that always sticks out in my mind is the High School Ice Cream Social performance in 2011. The performance was a last-minute addition to the Team’s schedule. Being so last-minute, many of the Buddies were not available to perform with our children.

The Team had never rehearsed, never mind performed without their Buddies before, so this was something totally out of their comfort zone. But there we were anyway, with 3 buddies. Mrs. F. had faith that they would be able to do this. I am not sure that many of the parents had as much faith, but Mrs. F. did.

There was a little bit of time to do a few quick rehearsals before the show but as I said, this was a very new experience for them – a few quick rehearsals without their buddies would be like starting from scratch. Mrs. F. gave them a pep talk before and after each run-though and made it very clear to all of them that they could do this! 

She gathered them around for one more pep talk before they went out to perform. She believed in them so they believed in themselves. They knew they could do this!

And they DID! The show went off without a hitch. They gave a fabulous performance! How proud they were to be able to do this without help! Mrs. F. had faith and in turn, so did the team (and the parents)……  All it took was a little bit of faith…….. And THANK YOU for the faith you have in, and the encouragement you give to our children!

Happy Birthday

 

 

There is no one better! Thank you for everything you do……..

 

Kudos to Brian, Mrs. F., Laura and Kelsey! Each season and show is more complicated than the season before and there have been so many times I thought “How is he going to remember THAT? He will never be able to do that!”, but he does as does the rest of the team. It is an impressive organization.  They never say never and always seem to know just how much they can expect from this team. They never underestimate just what our “kids” can do.

(This video was cartooned (cartoonized?) to ensure the anonymity of the participants)

Video from 2014 Opening Ceremonies….

 

 

2014 Show – “Just the way you are” – Special Olympics Opening Ceremonies

(so sorry for the quality and please Turn Up the Volume!)

 

 

 

 

Later: The rest of the post………………. Secrets, Surprises and Pizza…………