#SilentCoffee

Once again I am using my “Other Blog” format over here on this site. It’s Mother’s Day, so I can do what I want. Right?

Silent coffee. That is all I wanted today. I am sure we all have that dream. I tried. I really did, but as in all of these other attempts; I failed.

Facebook Status – June 2017 

Silent Coffee on Vacation

Second attempt at 5 minutes of alone time. First attempt aborted when DC forced Doug to bring him to find me.

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Sleeping in and #SilentCoffee – March 2018

DC , on a regular basis feels the need to announce that he is  “Not tired yet” at different intervals during the evening. There have been times when Doug was over and I am just too tired to stay awake and since he was here finishing his laundry or doing something on the computer, I will tell DC, who just announced he was “Not tired yet” that he can stay up until Doug leaves.

Of course I know that Doug would not leave until DC was in bed and of course he would lock the doors on his way out.

Nope….. As soon as I say I am going to bed, even if he had just made his “Not tired yet” announcement, he begins packing up his princess papers, books and markers and goes up to his room.

If I am going to bed, he is going to bed.

If I am awake, he is going to be awake.

That is just the way it is.

I was already scheduled off from work today but due to the impending storm, I was almost 100% certain that I would be keeping DC home as well – whether his program was cancelled or not. I did not tell him last night just in case there was a drastic change in the forecast by the time morning came. Because I already knew that only one of us would possibly be getting ready for work this morning, I let him sleep about a half hour longer than usual (normally we are both up and dressed by the time we find everything is cancelled so there is no going back to bed – ever).


Unless everything is called off the night before, today may possibly be the very first time, ever that he hasn’t been up, showered and dressed before we found out that his work (or school, back in the day) was cancelled.

What you have to understand here is that every single time I have to get up during the night, every night (I am old, so me getting up during the night happens QUITE often), I have to first stop in his room to tell him that it is not time to get up yet and he needs to go back to sleep. He hears me, every.single.time and is ready to bound out of his bed, no matter what time it is.

This morning when I got up for good, I went into his room as always and said. “I am going downstairs now, if you want to sleep longer you can” – (This never works but still, I try)

I was shocked when he said “Okay” and rolled over to go back to sleep. I was thinking “Wow! I actually get to have silent coffee, this morning”.

I hardly finished making the coffee when I heard him yelling “Mom, want to get up!”

His face when he came downstairs made me laugh out loud!

He was angry with me because apparently he thinks I told him to stay in bed while I had the nerve to get up and come downstairs without him!

Silent Coffee, cancelled….

******

Mother’s Day – May 2018

Hiding in the Laundry room

It is Mother’s Day. In a desperate attempt to just have 5 minutes alone and silent coffee, I took my coffee down to the laundry room/garage.

I barely had time to put my cup down when I heard DC knocking on the door at the top of the stairs.

This was very odd indeed because trust me, he rarely knock on any door.

I yelled up the stairs.

“What’s wrong?”

DC: “What you doing?”

“I will be up in a minute”

Knocking continues.

DC: “I want a hug”

“I will be up in a minute.”

DC: “I want a hug”

(He did not mention wanting a hug when I was upstairs with him)

“Okay, I’m coming”

So #SilentCoffee was a failure once again, but I did get a hug and he did share his M&M’s from the M&M store yesterday with me, so I really can’t complain.

Happy Mother’s Day, everyone.

I wish you all  5 minutes of #SilentCoffee and if that did not/does not happen, I hope you get a big HUG (M&M’s are optional)

Happy Mother’s Day!

Telling Time in DC-Land

 

I usually use my “Other Blog” (Take Another Step: Life With DC) for posts involving Face Book Statuses, but this was big for DC (and me) so I decided to post it here. It may not seem a big deal to you, but believe me it is a big deal here in DC-land!

(How much of a big deal, you ask? I just washed my hair to get all of the “gray stripe concealer ” spray out so I can dye said gray stripe but I chose to sit here and write this right away, while hoping that no one comes to the door or nothing happens that will force me to leave the house. No, there will not be photos.)

Telling time is not something that is easy for DC. I remember one of his teachers telling me that telling time might be something he will just have to memorize and I do believe that to be true for the most part. This is something like balance (on a bike) that is really difficult to teach. You get it or you don’t.

He understands that there is morning, afternoon and night, but the actual “clock” times that correspond to particular times of day are very often confusing to him. Adding to the confusion is the fact that there are TWO of every hour in a day (sometimes I think Military time would make more sense to him).

For example; he eats breakfast in the morning and lunch in the afternoon and he sort of has an internal clock for that. But when there was early dismissal at school back in the day or he has to come home early from work, he expects dinner to come not too long after he gets home, because dinner usually comes not too long after he gets home.

You are now going to suggest a digital clock or watch…..

Done that.

He has a watch and although he really does not like to wear anything on his wrist, every once in a while he will put it on. It is helpful only at times when he is asking me when we can go somewhere or do something – I can tell him the numbers to watch for but then instead of continuing to ask me about whatever he was asking about, I get this…

I didn’t realize that DC had packed his watch and was wearing it in the car. I only did realize when we started getting minute by minute updates from the back seat:

“Mom, it is Eight-‘Firty’- Seven, we have to find Uncle ‘Liar’ –

“Mom, it is Eight-‘Firty’ – eight, we have to find Uncle ‘Liar’ –

and so on………. 

~ From:  Because, Because, Because, Because….BEEEE CAUSE

(Uncle ‘Liar’ = DC-speak for Uncle Lyle)

The numbers really do not mean a whole lot to him in correlation to time of day.

When he was younger, he started asking for “5 minutes” when he arrived at school everyday. He did not know how long 5 minutes was or even that it was a length of time, he must have heard it somewhere.  But he did figure out that they would leave him alone for a little while so he milked it for all it was worth.

Over the years he has gotten a little bit better about reading the clock but really only hours and sometimes half hours so I was pretty impressed with this last year:

Facebook Status – June 5, 2017

DC: Mom! It’s Seven Fifty (fifteen) o’clock! 
Telling time is not something that comes easy to DC. Often he can get the hour (but more often he gets the hands confused so it’s 12 o’clock a lot) and once in a while he can get the half hour. 
7:15 with no prompting what-so-ever is HUGE!

 

Later that same week:

Facebook Status – June 7, 2018

So that happened Monday morning and after a few times asking him what time it was, and not getting the correct answer, I began to think that 7:15 was just a fluke. 
He did randomly announce 7:00 correctly on Monday night (hours are easier for him) but this morning he announced 7:25, when it was actually 7:25 (o’clock – we can’t skip the “o’clock”)! 
What I am taking from all of this is that he seems to get it right when he’s not asked – when he just decides to tell me what time it is…
and… he seems to be partial to the 7’s.

I’ll take it. It’s progress… but there is still that disconnect to the time of day and the passing of time (if I say “in two hours” or “in an hour”, it generally does not make sense to him, even when I explain and tell him what time it will be in two hours. He understands what time, because I am telling him the actual time. I do also count the numbers on the clock hoping that he will understand that two hours from 12 o’clock would be two o’clock. It just never seems to carry over to the next time.

I said earlier that he seems to have an internal clock for meals, but that clock only works on weekdays. Weekends he starts asking for lunch at about 10 am (sometimes earlier). I have told him many times that 10 am or when ever he is asking is still “morning” and afternoon does not begin until 12 o”clock.

This morning I heard:

“Mom! Lunch is in one hour?”

I looked at the clock and it was 11:00 am and lunch was indeed in one hour!!!!!!

I was shocked (so shocked that I think I scared him at first) and thrilled.

I asked him to repeat it and he did.

He knows he has done something GREAT – I am not quite sure he understands just what he did, even though I’ve told him over and over again – but he knows that I am “Impressed” (he loves that word).

I am not going to count my chickens but maybe it is beginning to make some sense to him.

 

It is well past noon now and he asked for and made his lunch at 12 on the dot.

 

And now I am off to take care of the gray stripe…

 

 

 

 

 

 

 

 

Please Translate – “Mom’s Office”

This post is yet another in a long line of posts about the way DC communicates or is not able to communicate.  Let me first say, in case you are new here; although he was non-verbal until he was seven years old – DC is now what you would call verbal.

Since is is the last day of Autism Awareness Month, I decided we could talk about communication one. more. time.

Verbal does not always equal communication.

He can recite lines from movies. He can usually tell me what he wants. He cannot always tell me when there is something wrong or if something has happened. Even when he has the words, he cannot always use them to communicate what he is trying to tell me or anyone else.

There are times when he will still use his sign language to help in his communication when something is important enough to him. In most cases if I do not get what he is trying to tell me right away, he gives up and just says “Nothing wrong”. Once we get to “Nothing Wrong” the conversation and whatever he was trying to tell me is lost.

As I have written before; one of the hardest things for DC to convey to me is when he is not feeling well or if something hurts.

Over and above the fact that he DOES NOT want to go to the doctor or “rest” at home, he does not often have the words to tell me when he does not feel well.  Or he DOES have the words, but cannot put them together or figure out how to use them in certain situations.

This is an example of a conversation we had just the other day…

DC came running into the room stimming wildly and it was apparent that he was upset about something.

I asked him what was wrong.

DC: “My heart is beating, beating, beating”

Me: Does your chest hurt?

DC: “No! My heart is beating – boom boom”

I do understand after all of these years that his “Heart Beating” means that he is upset about something or something scared him. It does not have anything to do with his heart but I always ask (just in case) if his chest hurts.

Me: Can you tell me what happened?

DC: (pointing to his mouth) Sink!

I went into the kitchen and he pointed to the sink – which was relatively clean.

Me: What happened?

DC: (annoyed that I did not understand) MOM’S OFFICE!!!!

Now, knowing DC as I do, I had to search my brain and think of something that happened to him at some point over the years when he was at work with me.

Fortunately, I remembered.

He was in Middle-School. MIDDLE SCHOOL!

When he was younger, he would “tell” everyone that he was sick; actually he would just sign “sick” with no other details. Most of the time he was not sick at all, but he knew the school nurse had jellybeans in her office so that is where he wanted to be! Then he discovered when he was finished with the jellybeans that they would call Mom to pick him up. Most of the time, knowing that he really wasn’t sick, I would pick him up and bring him to work with me – which he loves, so I wasn’t really winning any battles there, but I had to work. (We’ll forget about the ONE time, he threw up all over my office, the ONE time he really was sick and no one believed him. I guess he showed us!) ~ From:   Look in the Mirror and Spit Cookies, September 2013

Me: Did you throw up in the sink?

DC: Yes!

Obviously, not very much and he must have run the water before coming to get me. He has been jumping and dancing around the kitchen so I suspect that all of that activity was the cause of the situation as he did not seem sick otherwise.

Since the “Spitting Cookies” incident (linked above and here) he has learned and does know the word. He has used it before, but just could not figure out how to use it to tell me what was wrong.

The plus side of it all is that he tried to tell me and did not give up (although one would have to be me in order to figure it out). He does that sort of thing often. He brings up an example of something that happened at an earlier time to try to get his point across. This often works with me, but everyone else that he deals with in his day to day life do not have all of this information stockpiled in their memory and often do know know what is important enough for him to remember. What is important to him is not always what others would even give a second thought to.

Verbal and Communication?

Two very different things.

 

 

 

Speaking of Love

There are many words and phrases spoken by DC that he does not pronounce properly. Most of the time I will help him to try to pronounce them correctly or at least a little closer to correctly so others are able to understand what he is saying.

There are also a few other words that are not pronounced correctly that I happen to adore his version far too much to correct him. That list is growing shorter and shorter because someone always comes along and decides that they just HAVE to teach him how to say it the “right” way.  It kind of takes a little chip out of my heart each time it happens.

Below is one of my favorite posts about one of my favorite words….

So far, no one has taken it upon them self to try to change it and should not even think about doing so.

Just don’t.

“Mom, do you love meeee?”

 

I love you Magly

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself.

DC can and does tell me that he loves me many times a day – complete with and accompanied by the “I love you sign”. I know that he understands in his own way, what that means. This is not to say that I believe it is always all about me. Much of the time it is but there are times when he just needs to have something to say. It’s kind of a comfort thing for him. He says it over and over again when he is in an uncomfortable situation or a place that is new to him.

But, back to me….

I especially love it when he, at 25 reverts back to “I love you Mommy” instead of Mom, Mother or Vickie.  He is probably one of the most lovable people around and I am willing to take complete credit for that.

Is it just learned behavior and not real emotion?

Is it comparable to the times that I have to make a rule because I know he does not understand something?

Is he just, in his mind, following another rule?

Is he just going through the motions because that is what he thinks he should be doing or how he should be acting?

I used to wonder about that when he was younger but now I am convinced that although I am sure that some of that lovability was originally something that he learned, it IS also very full of emotion.

All of the above does not mean that he does not hear his fair share of yelling because let’s face it, every behavior can not be blamed on his autism.

When these situations arise and he is “in trouble” and after I start finding his apology notes everywhere – we always sit down and have a talk.

“No matter how upset Mom might get when you do something you are not supposed to… I always love you. When you are in trouble, I always love you. You never ever have to worry about that.”

When he is “in trouble” and we have not had the talk in what he thinks is a timely manner, he will come to me and say “Always ‘loves’ you.” He knows it, but he needs to have the talk. It’s a ritual and it is comforting to him.

DC’s ongoing “I Love you” campaign has evolved recently. While all of the above still holds true, he has added, ” Mom, do you love me?” (in his high pitched squeaky voice with the emphasis on the “me”).  I know he is not questioning the fact. I know he knows this and I know that he just wants to hear it again. I also know that this line must be something he picked up from a book or a movie because he is using the correct pronouns.

Just to change it up a bit, my response to this question is: “I love you madly”.

Just to change it up a bit more, I will ask: “DC, do you love me?”

His response is another in the long list of words/phrases that he uses that I know I should correct speech-wise, but I do not because I love the way he says them. I hope that this response never changes.

Mom, I love you ‘Magly’.

No corrections necessary……….

‘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

 

 

 

 

 

 

 

To Explore Strange New Worlds – Fun and Informative (A Book Review)

To Explore Strange New Worlds: Understanding Autism Through A Star Trek Lens ~ By Elizabeth W. Barnes

I have to begin by saying that I always loved to read, until I hit the age where my arms were no longer long enough to see the pages clearly and I had to begin wearing the dreaded “reading glasses”.  I do not know why reading a book while wearing the dreaded “reading glasses” bothers me so, but it does. Although I have from time to time, purchased a book with all good intentions, I can’t say I have been able to get through a single one.

The subject of Star Trek and autism relating to each other was intriguing to me. I have been a Star Trek fan since the first episode of The Original Series hit the airwaves; a VERY long time. I have a parent to a child with autism for over a quarter of a century. These are two subjects that I can relate to more than most.

I have always looked at Star Trek as diverse and inclusive. After my son was diagnosed and as he got older, I of course saw the similarities between him and Mr. Spock, Data, and Seven of Nine, but it never occurred to me just how much more there could be found in the Star Trek Universe. It was fun and eye-opening to look at Star Trek again though the scope of autism.

It took me a little while to begin reading it, because….. “reading glasses”, but once I picked it up, I was pleasantly surprised at how quickly I was able to finish it – glasses or not.

It was an easy read. It was not clinical or technical. It does not read like a “how to”, or an instruction manual.  There is no advice or counsel as to what you should or should not be doing. It does not preach.

What the book does, is point out the regular every day issues that our children deal with through Star Trek episodes. It provides thoughts and tips for discussion as a means of assisting our children though these issues.  It is a collection of episodes and specific scenarios from those episodes that are relevant to our day-to-day life. These situations and the manner in which they are resolved are broken down in a clear and simple manner to promote thought, discussion and understanding about anxiety, social situations, problem solving and much more. Once you read this book and begin looking at the episodes in this way, this method could then be applied to other episodes, other situations in the same episodes and even different television shows, movies or books.

Being a Star Trek fan, it was actually fun reading over all of these episodes and looking at them in this light.

If you are a Star Trek fan with some connection to autism; this book is definitely for you.

If you are a Star Trek fan who may want to learn a little bit about autism while reading synopses of episodes from most of the Star Trek television series; this book is also for you.

If you are a Star Trek fan and the parent of a neurotypical child; this book can also be helpful as many of the issues covered such as bullying, acceptance or fitting in and peer pressure are not specific to autism.

If you are not a Star Trek fan; first I will ask ……..

WHY?

Next I will say that I do not think it matters. I have to admit that there were a few episodes that I did not remember and it did not take anything away from the point of the book. To the Star Trek novice or the person who has no knowledge of the  franchise other than the name, I believe this book would be just as interesting and informative to read as a collection of short story synopses that begin with a problem, end with a solution and the break down of the steps the characters took to get to that solution.

I found “To Explore Strange New Worlds – Understanding Autism through a Star Trek Lens” a fun, informative and quite fascinating romp through the Star Trek Universe and the autism spectrum. I highly recommend it!

 

Click Image To Purchase

To Explore Strange New Worlds: Understanding Autism Through A Star Trek Lens – By Elizabeth W. Barnes (click image to purchase)

 

 

 

 

 

 

 

 

 

 

Let DC Be DC

Last week, while waiting for his transport to arrive, DC decided that he wanted to wear a stick-on mustache. It was Monday and as Monday mornings have been difficult for DC lately,  I let him wear it. The mustache was keeping his mind off the rising anxiety he was experiencing, so there would be no argument from me.

Much like his precious band-aides, there always seems to be a pretty good supply of stick-on mustaches on hand. He loves them. They make him happy.

As I have mentioned before:

Back in the “Olden Days”,  we were taught that our goal was to try to normalize (the doctor’s, specialist’s and school system’s word, not mine) our children – we did not know any better. In our minds, we were trying to overcome autism and teach our children to behave the way we thought the world wanted them to behave. It took me a while and I had to figure a lot of this on my own (because…. no internet).  I had to get over the idea that had been drilled into our heads as parents, that we had to make our children behave like every other child. I had to figure out for myself and understand that he was not going to fit into anyone else’s idea of ‘normal’ and that I should not be trying to make him fit that mold. I should be making it easier for him to manage his anxiety so he would be able to navigate the world outside of our door.

DC is 26. He is out of school. He does not have to adhere to a dress code at his job/program. He does not have to wear a uniform. He seems to understand the difference between working his volunteer job at the theater where there is a dress code/uniform, his Winter Guard activity where there is also a uniform, and his day job/program where there is not. He has never asked or tried to, wear one of his mustaches or plaster his arms with band-aides when he goes to either of those places.

I very rarely intervene in his clothing choices unless they are weather related or there is a safety issue. He works in the greenhouse during the summer months at his job/program so fleece sweat pants are not THE best idea. When he was younger, he always wore a purple cape. Because I have a thing about him wearing anything around his neck for fear of whatever it is getting stuck in something and choking him, I would only let him wear the cape around the house.

DC also does not like to wear anything around his neck and to be honest, I am not a fan of him having anything around his neck either. When I was a kid (an infant really), I saw Isadora, a movie starring Vanessa Redgrave about Isadora Duncan and that was the end of scarfs or anything around the neck for me – Yes, it IS hard to be me. 

In case you might be wondering; he has only ever worn a scarf once and it was on Halloween.

That afternoon when DC made his daily call to me from the car on his way home from his program, he went “off script” and said, “I’m sorry Mom.”

Now, unless we had a rough morning or something has been on his mind all day, an apology on the phone does not necessarily mean that he is apologizing to me. Usually it means that something happened at work (or wherever he had been) but he cannot communicate it to me.

Me: What are you sorry about?

DC: Took off the mustache.

Me: Why are you sorry for taking the mustache off? 

DC: Threw the mustache away. I’m sorry for mustache.

Me: Did someone tell you to take the mustache off?

DC: Threw it in the garbage.

Me: Did someone tell you to take it off?

DC: Yes

Me: Who told you to take it off?

DC: Threw it in the garbage in the Dog Bones Room (the department where he works during the winter months)

Me: But did someone tell you that you could not wear it?

DC: Yes.

Me: Who told you that?

DC: *Donna. I’m sorry Mom.

At this point I was beginning to get my back up because there was absolutely no reason for someone to tell him to take it off.

Me: You do not have to be sorry.

DC: Threw it in the garbage.

Me: That’s okay; we have more.

It went on like this for a while, but what I got out of the conversation was that he was told he could not wear it.

When I got home – I checked his “Talk Book”. There was a note from *Donna:

“I liked DC’s mustache but he must have thrown it in the garbage. I asked DC where it was and he said ‘garbage’. It’s too bad. I liked it” ~ *Donna

His apology to me was all about *Donna asking why he threw it in the garbage. He was apologizing to her because she asked where it went and he thought he had done something wrong by throwing it away.  At times when he wears his band-aids or a mustache, he is happy for the attention. Other times, if they are mentioned in any way, he takes them off. I think there are just days when he wears them because they make him happy and other days when he needs them as a calming mechanism and he does not want to talk about it. He might, at those times feel a little bit of embarrassment as well.

He wore a mustache again a few days later with no issue, and trust me – he needed it that day.

The points that I want to make here are:

If I did not receive the note in the book, I would not have been able to figure out what was going on. He did offer more information that he usually does, but it was not expressed in a way that gave me the true picture. Verbal and Communication are two different things. When I say (over and over again) that I worry because he cannot always tell me when something is wrong; this is what I mean. There are things that I have never been able to figure out.

You can see why his inability to communicate what is really happening worries me to no end.

The second point would be that we just need to stop looking at these quirks as something we have to fix or something to be made fun of.

If he needs a mustache, band-aids, a Christmas shirt in July, or a Halloween shirt in February – then that is what he needs.

Let DC be DC.

 

 

 

 

 

 

Everything is Related – It’s a Celebration

 

As you may or may not know, over and above his regular day job/program, DC also volunteers at a local theater. He has been there for four and a half years now. His best friend, BB just recently started volunteering there as well. 

If DC could choose his dream job, it would be one (or all) of three things; Working in a Bookstore, Working at Disney (or anything having to do with Disney), Working at a Theater (plays and musicals) – 4 Years ago today, DC and his Job Coach headed off to his first day of volunteer work at the theater. My Broadway Baby got his wish…. ~ From “His Dream Job” March 2017

 As one might guess, DC is more interested in working the Broadway Productions, but the volunteers are required to mix it up and work a few of each type of production held there. 

Some of these are difficult (or boring) for DC so I always try to come up with something to relate whatever show he is working to something he enjoys – which is usually something that begins with Disney, but not always.

A while back he was scheduled to work “The Phantom of the Opera”. Now don’t get me wrong, DC is the ultimate fan of musicals, but this is more opera than musical. To try to pump up the enthusiasm and interest, I told him that I saw the Phantom of the Opera many years ago in New York City (his favorite place) on Broadway (his second favorite place) when it first opened. 

Me: Do you know who played the Phantom when I saw it? It was the same person who played Cornelius in a movie that you really love.

DC: Walter Matthau (not pronounced quite that way but I knew who he meant)

Me: No, Michael Crawford. He played Cornelius and Walter Matthau was his boss in the store (Hello Dolly).

(Seriously, you have to give DC props for knowing Walter Matthau and knowing which musical just from the name Cornelius)

That was the best I could come up with…

When all of the attendees are seated and the show gets going (pending a 10-minute hold on the door, of course) the volunteers are allowed to go in and watch a good portion of the show. For this particular show, DC and Mrs. H stayed out in the lobby due to the production’s use of strobe lights.

There are screens in the lobby though. Mrs. H reported that as soon as the operatic singing began, DC in his not so “indoor voice” announced – This is ‘ted-a-bull’!

I suppose it was a very good thing that they were not inside the theater at the time.

Moving on to the “celebration”…..

Many years ago, when I got married, I gave the DJ a list of three songs that he was not allowed to play, even if a guest requested them. They were banned – BANNED!

The first was Kool and the Gang’s “Celebration”.

There was not any sort of affair that one could attend without ”Celebration” being the first song that was played, as if it was an original idea and no one had ever thought of it before. 

“A Party? A Celebration? Oh, we should play Kool and the Gang! We are so clever!”

Nothing against Kool and the Gang, I do like many of their other songs, but I am not a fan of this particular song.

Then, like clockwork, the very next musical offering 99.99% of the time would be, Sister Sledge, “We are family”.

No, no no no, just no.

The third was the chicken dance, because…….

Chicken Dance.

(Little did I know that one of DC’s early intervention teachers, Mrs. T (you know who you are) would teach him the chicken dance and he’d be doing it ever since)

Flash Forward to 2012 when DC’s Winter Guard Team chose – you guessed it – “Celebration” as their performance song for that season.

I mentioned my banned wedding song list to TonyaSalli’s mother one night at Winter Guard practice after listening to Celebration in parts and in its entirety all practice long. She laughed so loudly that it got the attention of the director who also had a good chuckle over the torture I was experiencing. 🙂

DC loves Winter Guard but he never really gets attached to any of the songs they have used over the years. If they used something like “A Dream is a Wish Your Heart Makes”, “Beauty and the Beast”, “Seventy-Six Trombones”, or “The Trolley Song” – that would be a different story. Being a Disney/Broadway/Musical type of a guy, he is not always interested in the popular/top 40 music they use. He does like the songs and knows them when he hears them later, but that’s about it. I thought this would work in my favor with “Celebration”, but noooooooo….

He will randomly search for it on you-tube and listen to it over and over, still. to. this. day which I begrudgingly admit might actually come in handy as the next show that DC is scheduled to work at the theater is none other than – Kool and the Gang…

No prep necessary. I simply reminded him of his beloved “Celebration” and he is ready and seems to be looking forward to this show.

So, I guess you can say that Kool and the Gang came through for me in the end because, Everything is Related.

DC’s Number One Moment of 2017 #SPNNJ #KimRhodes #Supernatural

It is that time of year again (how fast did 2017 speed on by?) to re-post my top 5 most popular posts of the year from this blog site.  This was probably one of, if not the best day of the year in DC-land (maybe even better than Halloween – shocking, I know), so it is fitting that it came in at number one. I hope to be able to bring him to another someday. I love to see him that happy.

Happy 2018 to you all and as always, thank you for your support!

(#’s 2, 3, 4 and 5, are linked at the bottom of this post)

Let’s Talk About Kim Rhodes #SPNNJ – September 2017

For the few people who may not have heard, we attended the Supernatural NJ Con this past weekend. Because I have learned a “few” things over the years; specifically that I would not hear about anything else for months ahead of time if DC knew that Kim Rhodes was scheduled to be there – I did not mention it to him. But DC being DC somehow figured it out (I still do not know how) and trust me, I have heard about “Zack and Cody’s Mom” daily since July.

You can read about it here: Zack and Cody’s Mom!

and here:

and here:

 

Believe me, these….just the tip of the iceberg!

We stayed in New Jersey within walking distance of the convention center. We spent Friday in New York City (DC’s favorite place) and Saturday was spent at the convention center (Sunday, back to NYC – It was HOT…just sayin’!)

Not wanting to make the day uncontrollably long for DC, we arrived at the convention center somewhere around 12/1230. Knowing that DC expects regularly scheduled meals and remembering NY ComicCon where we sat on the floor with pretzels because we could not get near anything else – I started the lunch explanations early; we would stop somewhere on the way to the convention center and have “second breakfast” and we should be able to get some snacks in the convention center here and there during the day. Oddly enough, I only had to go over that 4 or 5 times before he stopped stressing out about not having a regulation lunch.

Our scheduled autograph session with Kim Rhodes was not until 3pm so we looked around a bit.

We stopped at the RandomActs.org table and made a donation. DC, being his charming self had trouble deciding between a button or a temporary tattoo all the while eyeing the teddy bear that was sitting on the table. He asked me for the bear. I told him that it was just for decoration (as I believe that it was). After almost finally deciding on the tattoo, one of the women whispered “Does he want a bear?” I told her that he would love to have one and asked how much they wanted for it.

She said that he had made her day and she wanted him to have one. They even put a little pin on the bear for him. He carried that bear around with him all. day. long.

Not very long after that, Ruth Connell came out to her autograph table. I am not sure that DC knew who she was but the red hair had him intrigued. She had it all pulled up so there was no need for my “Do Not Touch Her Hair” speech/warnings.

Finally it was time to get in line for Kim Rhodes. I had purchased a ticket for the autograph session and the photo op months before because I was not taking any chances of him not getting to see her. Because I never had to purchase a ticket for an autograph session before, (there are just usually photos on the table, you pick one, pay cash and they sign) I did not realize that we had to have something for her to sign already. We were second in line so I yelled for “poor” Doug and told him he had to hurry up and go to the table out in the vendor area and buy a picture. She was not at the table yet and Doug having no idea who any of these people at the convention were went up an octave or so and screeched:  “How can I buy a picture if I don’t know what she looks like?” I hadn’t thought of that and I just started laughing. Doug is a pretty mellow guy but when he does get exasperated with me (very seldom) and moves into this weird high-pitched voice, I just cannot help but laugh – a lot. The woman behind us (getting a kick out of the whole exchange) showed Doug the picture she had and off he went. Before he reached the vendor area, he turned around and started coming back…. I turned to the woman and said “Watch. He is going to give me that schedule in his hand and tell me to use that.”

She laughed.

He did.

She laughed harder.

But finally he did go back out to buy a proper pic. We just let one person at a time go ahead of us until he came back.

Finally, photo in hand – the big moment.

DC was beyond excited! There are times when he gets so overly excited about something that by the time he gets there he flames right out, but he didn’t. I asked him who this was and he answered “Zack and Cody’s mother!” with that little screech that he does when he gets that excited.

They talked about his bear. She signed his picture. She said “I am not supposed to do this but I will” and wrote “You are awesome!” On his picture. I am guessing that in order to keep the lines moving the coordinators do not want the guests to spend too much time writing anything other than their signature?

We told her that we’d see her in an hour for a photo. DC was even more excited when she said that she is allowed to give hugs at the photo ops. DC misunderstood and thought he was getting a hug right there. When I told him that she was not allowed to hug at the table he would get one at the photo op, she decided to give him a big hug at the table anyway. A practice hug, they called it.

You CANNOT IMAGINE and I can not put into words just how over the top thrilled he was! That made his day.

The photo op came up quickly and as soon as he saw her (from the line) the squealing began. He made it to the front and she greeted him as if she was so excited to see him. Now, I know that they are supposed to to that, but that little extra attention she gave him just made the whole day worth it. I do not know if she really remembered him or not (he still had the bear, so I am guessing she really may have). It did not matter, DC believed that she did and that is all that mattered.

 

You will never find a happier guy!

I did not purchase tickets for Sunday because they were too expensive (Sam, Dean and John, their “father” were appearing on Sunday only) but I decided to buy tickets to the concert on Saturday night, thinking that if they were flying in for Sunday appearances, maybe just maybe one or all of them would fly in on Saturday night and make an appearance at the concert.

Had I known when I bought the tickets that the doors would not even open until 10Pm, I would have never done it. I was worried that DC was not going to make it that long.

As it turned out, I am glad that I did not know and glad that I got the tickets.

In an effort to get DC in to the spirit of the thing, I told him that “sometimes” Zack and Cody’s mother, who DC now refers to as  “Kim”,  sang at these concerts. I knew that to be usually true, but I also knew that I was taking a big risk in telling him so.

We thought we were already losing him while waiting in line but we got him to hold on until we made it inside and sat down. By just a few songs in, he was showing signs of being “done” and no longer paying any attention. He did not notice that she had just come out to the stage.

“DC, look who it is!”

He jumped up out of his seat when he realized. He kept pointing at her as if I did not know she was there.

He danced and clapped for the rest of the concert.

At one point, she jumped off the stage and ran through the audience, DC was in the aisle and no, I was not ready with my camera. She ran right by him. (He was thrilled just to see her up close again). But then she stopped, turned around and started back toward him waving. He LOVED IT! She couldn’t come all of the way back to him, but he knew that she noticed him and the wave was for him and him only!

Just that little bit of extra attention made all the difference to DC.

Kim Rhodes has been added to my list of heroes (or as DC would say “Here- eee- Ohs”)

*****

As for the rest…. DC and I had a good time (Doug not so much)

I have only ever gotten to sit in on two panels/Q&A’s before – Once Upon a Time at NYComiccon where DC fell asleep on me (and when I say “on” me, I mean that literally) and the “Revamping of Fairy Tales for TV Trend” discussion at Shore Leave, where DC not only fell asleep on me but did it in the front row.

We actually got to see the Costume Contest (I apologize for the photo quality; I did not think to bring my real camera)

The Mark Sheppard Q&A:

 

 

and The Misha Collins Q&A:

DC did not fall asleep during any of them (I cannot say the same for Doug)

The rest of the concert was fun (even Doug liked it). I was correct. One of the Sunday only guests, Jensen Ackles made an appearance at the Saturday Night Special.

(A very short clip)

 

Another favorite part of the day happened while standing in line for DC to have his picture taken with Mark Sheppard and Misha Collins. The woman in front of me, carrying a binder; obviously much more organized about this than I was, turned to me and said, “I am 47 years old and I have saved up for 12 years to do this.” – She bought the whole weekend Gold package (Knowing how expensive our single day was, I can see how one would have to save for 12 years.), but if she was going to get to do this, she was going to do it right! We chatted a bit while in line and it seemed as if she was having a great time and it was all worth it! I am glad. Sometimes when you look forward to something for such a long time, you end up being disappointed by the reality of it.

This did not seem to be the case for her and it certainly was not the case for DC.

It made me smile.

****

Update: Just when you think she could not be any more wonderful:

 

 

 

 

*****

Post #5 – 2017:

Look at my daughter and tell me she is not worth keeping alive #Medicaid (A Partnered Post)

We have heard (and read) about how the people who may lose Medicaid coverage from the proposed cuts, “can just go out and get a job” with an employer that provides medical coverage….

For those of us with disabled children, “getting a job” is not a solution. Many of us work and have medical coverage through our employers. (Continue)

 

 

Post #4 – 2017

Autism; In “The Old Days” – Diagnosis via St. Elsewhere – February 2017

As you may or may not know, DC is 25 (almost 26 – gulp) years old. He was finally and officially diagnosed with Autism when he was 5. I knew there was “something” by the time he was a year old and looking back, probably before that. I originally thought that he could not hear (Continue)

 

 

 

 

 

Post #3 – 2017:

He was right next to me – October 2017

It happened a few weeks ago…..

DC wanted to make pizza. “Making” pizza means opening a ready-made crust, adding sauce, ‘sparkling’ cheese (Veggie grated cheese), garlic powder (because he is obsessed with garlic) and pepperoni.

We do this often and DC helps with quite a lot of it. (Continue)

 Post #2 – 2017:

Revisiting “Feeling Chastised” – April 2017

The following was written a few years back. It was written more about the discourse  within the autism community and not about autism awareness or acceptance. In actuality, I suppose it could be looked at as a piece supporting  the awareness, acceptance and respecting the differences in the ways parents view autism. There is far too much hostility. (Continue)

Just for good measure and because it is one of MY favorites….

Post #1 – Let’s Talk about Kim Rhodes (in case you missed that)

********

Post #1 from last year – 2016 – one of my favorites….

Mom, do you love meeee?” – June 2016

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself. (Continue)

 

Happy New Year!

***

For the Top 5 posts  on my other site (((spoiler alert – Kim Rhodes made that list as well))) – please visit Take Another Step – Life with DC  

We are allowed to Vent sometimes…

I wrote this post a few months back but due to the string of crabby posts I had published around that same time, I decided to sit on it for awhile…..

Just a few days ago I was involved in a couple of discussions that were not about this topic exactly,  but sort of around the same areas of frustration, I remembered this post and have updated it to include the other topics of discussion….

I am also realizing that this is what is becoming my annual, before the holidays crabby post.

I do want to be very clear that I am in no way complaining about my child. I love him more than life itself and there is nothing I would not do for him. This has little or nothing to do with him directly, just the people around us (all of us).

(updated portions are in italic)


I was reading a face book status recently written by the mother of an autistic adult son. The post was about a certain event that her son was planning for. He was planning out everything everyone was going to do for him and give him, while never giving a thought about doing one thing for his mother (the poster).

She was venting…. just venting.

Now… parents of Neurotypical children seem to be allowed to, and quite often do vent, and I have read much worse from some of those parents. For some reason, we are not.

When we do, one or more of these things happens:

1. we get a truckload of advice

2. we are made to feel as if we should somehow be above complaining

or

3. we have people feeling the need to explain autism to us.

The comments she was receiving came mostly from group number 3 and I really started to feel bad for her.

“You know he has autism”

“That’s what autism is like”

“Being self-centered can be a trait in autistics”

News flash….. we know this. Just because we know this does not mean we do not still have our feelings hurt from time to time. We are still human.

DC is a pretty lovable guy and I do know that he loves me. Not being from a very affectionate family, except when we were forced to hug and kiss every single person who came to visit or we went to visit (children should never be forced to hug and/or kiss ANYONE if they are not comfortable doing so – my opinion only), I am sure I over-compensated for that with DC and some of his “cuddliness” is learned behavior – not all, but some. I also know that in his mind, everything is about him. I am not complaining at all, I know this. This does not mean that I don’t get my feelings hurt when his Dad shows up and it’s like the heavens have opened. Or when I know he is only excited about my birthday (that comes right before his) because HE is going to get to go out to dinner.

Sure, there are times when he goes out of his way to do something nice for me out of the blue, like bringing me coffee (sometimes out of the sink, but he tries) but the reality is that yes, he knows he is doing something nice, but he also knows he is going to be praised for it. He does it for the praise and I am his biggest enabler in that area (She says after buying and just finishing wrapping a gift to myself from DC, so he can be excited and praised for giving me a gift on Christmas. Do not worry, he is a man and practiced at the art of taking credit for anything given or sent with his name attached, whether he knows about it or not.). Being raised in negativity, I do tend to go out of my way to praise him for every little thing and I do love to see him happy. I am thankful that he does want to do nice things for me and others, no matter the motivation behind it. After all of this time and understanding everything I have learned and understand about him over these past 26 years, I still can have my feelings hurt. I know it is not his fault and I am sure that the face book status poster knows that as well, but sometimes we just need to vent – just like everyone else…

Sometimes we get our feelings hurt too – just like everyone else and there should be no shame or guilt in that…

****

I was recently involved in an “All kids do that” discussion. “All kids do that” is a pet peeve of many parents of autistic children and adults. It tells us that you believe we are exaggerating their behaviors or difficulties or worse….. feeding into them or creating them.

My reply: (edited because many of my comments written on my phone are strewn with typos and could be said a bit better if in front of a computer with time to think)

I think that much of the problem comes from it being very difficult to explain our children to people (especially when they are not listening due to their own preconceived notions). Saying that he can’t stay alone or he is impulsive does not give the full/true picture. Because we cannot stand there and give 1000 examples to make them understand – they just will not get it. This is a big reason why I continued to blog. Lots of Stories to give a snapshot of how his mind works. Unfortunately the people who might benefit from understanding how his mind works probably do not read Autism blogs. Believe it or not, I get the same response “all kids do that” and I have to remind them that he is 26 and all kids or adults do not do that.

(Please listen to Val’s video that came out of the same conversation: THE BLAME GAME – WHY WE BLAME OURSELVES BUT YOU SHOULDN’T (VIDEO) )

****

Coming in on the heels of  “All kids do that” for me is “All parents have to do that”

I have been doing this parenting thing a long time now and I have come to realize that some events and gatherings are just not worth it. Most times, DC really could not care less if we go or not. There are a few exceptions to this and we do always attend those gatherings. 

When I try to explain that these events are not enjoyable for me (and as I said, he does not care if we go or not) because I have to watch him every minute – not because he will do something horrible but because he is not always aware of his surroundings and I have to make sure he does not bulldoze over a smaller person or child. He gets excited and wants to hug everyone. He does know to ask permission first, but there are times when he just gets too excited to remember to ask. Some people do not like to be hugged. He is a big guy and a bear hug from him can make you feel as if you are being crushed. I have to watch that he does not stick his hands in the food and a hundred other things.

“All parents have to do that”

Really? 

Do all parents get relegated to the basement when it is announced that all of the children have to go downstairs? The other children’s parents could let their children play in the basement without them, but I could not do that. I still could not do that today.

After 2 1/2 hours (I know this due to the number of times we watched the Winnie the Pooh video) in the basement while all of the adults were either upstairs or outside playing football – I had to wonder why we felt we had to attend. I could have been watching Winnie the Pooh in the comfort of my own home. How was this enjoyable?

Do all parents have to make sure their 26 year old child is in their line of sight at all times?

Do all parents have to bring extra gifts for their child to open so while everyone else is opening “just what I wanted” gifts, he does not end up with just an Autism Awareness Bag (just a bag – a shopping bag) or a mini-sharpie on a key chain or one of those little lunch boxes that he knows come filled with candy, without the candy? 

Your child tries numerous times to say hello to a child on the other side of the room. She just stares at him as if she is terrified, and her father, instead of asking her to answer him, puts his arm around her as if he was protecting her from this horribly scary person who is saying hello from across the room. Do all parents have to lie to their child by telling him she answered but he just did not hear her, so he won’t have his feeling hurt?

Don’t get me wrong; DC is not sheltered. He does many things and goes many places, but I have learned over the years that these types of gatherings are just not fun for anyone.

While we are on the subject:

If your child is an adult…..

Do you have to look for a babysitter if or when you want to actually go out without your child? I do.

Can you just run to the store whenever you need to? I can’t. (I could be there and back by the time I round him up and get him out of the house)

Can you just relax at the pool like everyone else while your adult child swims? I can’t.

Do you have to watch your child while he eats so he does not choke? I do.

Do you have to stand outside the rest room while your child is using it because 1. you don’t know who else might be in there and 2. in case he has a seizure? I do.

Again, I am in no way complaining about my child or our life, but hearing “all parents have to do that” just sends me over the edge. All parents do have to do that…. for a time, not forever. I do not have a problem doing this forever, I just do not want to have to explain myself to anyone anymore.

So, yes by all means invite us. If we can make it, we certainly will. If we do attend, please refrain from the advice, the guilt or the lectures about everything we are doing wrong and how you can do it better.

If we decline; “all kids do that” or “all parents have to do that” is not the road to take to try to change our mind.

Wishing you all a Happy and Anxiety Free Holiday.