The “Hair-dish-on” is back…… already!

Doug left for his trip to Egypt today. This would be his second attempt to see Egypt; the first time was via cruise but the stop was removed due to the turmoil that was going on there at the time. Before he left, he decided to look at the forecast here over the next few weeks. He saw that it is supposed to hit 80 degrees in a few days. This would not have occurred to me since here in New England, we had 3 days of snow just last week, but it occurred to him to check it out (thankfully!). He knows me and he knows that I would not survive 80 degrees without the air-conditioner. Really, I would not. Living in “Hot-Flash” hell for the past 12 years (cruel and unusual punishment), I have the windows open all winter and still have to run out and stand on the front porch at times.

Really, I would not survive……

So…. he came over before he left for the airport to put my air-conditioners in!

Everybody say “Awww”.

No, Really – say it.

DC, on the other hand is not a fan – more so now that they stay in longer and longer as each year passes.

Below is a post from August 2017; when DC started looking forward to the “Hair-dish-on” coming out along with a few Facebook statuses on the subject (because this is an ongoing issue). He did not know he still had a few months to wait…

Is it hot in here or is it just me?

It was very early in August and I could not believe that DC seemed to be getting excited about the last day of camp as if he was willing it to be over. He loves camp and I did not understand why he wanted it to end so badly.

He started saying “This week, the last day of camp? Camp is over?” on Thursday the 4th.
I told him he had the following day and next week left.

“Next week, last day of camp? Camp is over?”

Yes, You went today and you will go tomorrow then Thursday and Friday next week. Next Friday is the last day. 

I was confused because he loves camp so I tried to get him to tell me why he wanted camp to be over. Wasn’t he having fun?

“Yes, DC is having fun with my friends”

So I gave him a choice…

DC would you rather to to ARC (work) or Camp?

“DC want to go to Camp, see my friends”

Do you like camp? You don’t have to go if you don’t like it any more.

“Yes, like camp. Fun with friends”

Let me just break here to explain that although DC understands the seasons, he cannot always tell you that July is summer or September or October is fall. Summer is HOT. Winter is COLD – so if we happen to be in Florida in January, it is summer – in his mind. He knows the seasons and the months that go with them by memory, not by understanding. They do not always make sense to him and when he is not concentrating or has something else on his mind he goes by the weather, period.

This week he started asking me about the last day of camp again and added “Summer is over”.
I told him that camp would be over on Friday but summer would not be over for a few more weeks.

He looked very disappointed by that.

It was then, as he stood there staring at the air conditioner and looking forlorn about summer not ending on Friday, that I realized what was going on in his head.

Someone at camp must have mentioned the end of summer. DC got it into his head that summer was over on the last day of camp.

DC hates the air conditioner. He thought he would be getting rid of it earlier this year because he heard and believed that the end of summer THIS year would be the last day of camp.

He must have been excited thinking he would be getting a break earlier than usual. As per the conversation we had before someone mentioned camp being the end of summer – he was looking at October as the end of the air conditioning. No wonder he looked so disappointed when I told him there was still more summer ahead…

<From Facebook Status 8/1/17 (before his end of camp/summer assumption)>

I know the air conditioner bothers DC but I usually don’t hear about it after the first few weeks after it goes in (it went in, in April) – Today is August 1st aka #CalendarFlipDay and after flipping all of the calendars, DC said…
DC: My ‘Hair-dish-on’ out in October
Me: What?
DC: ‘Hair-dish-on’ out at Halloween. 
Me: (wondering why he is talking about Halloween)
I don’t know what you mean.
‘DC: ‘Hair-dish-on’ FAN out at Halloween!
Me: Ohhhhhh, the Air Conditioner! October or November, okay?
DC: October
(He’s hoping that the air conditioner is out by Halloween. He knows that removing the A/C is NOT a decision I make lightly or early.) I guess even though he might stop talking about it after the first few weeks after it goes in; it still bothers him.
He’s looking for the light at the end of the tunnel – and even if it’s two months away; he wants to know it’s coming.
#WishfullThinking #IsItHotInHereOrIsItJustMe

———

I really do feel for him but I can’t take them out early. I can’t do it… I just can’t:

<From Facebook Status >

I can’t say “shopping for a bathing suit” is on my list of  “Seven Things I Hate About Summer” because I just don’t do that….. haven’t owned one in years..

Number 1-7 for me THESE DAYS are:
1. IT’S HOT! 
2. It’s too hot
3. Why is it this hot?
4. I can’t take this heat!
5. Holy S&%#! I am not going out there!
6. I AM ON FIRE!!
7. IT’S Too #$&%in’ HOT!

#IsItHotInHereOrIsItJustMe
🔥🔥🔥🔥🔥🔥
(you can pretty much count on hearing all of the above year round from me, though)

——–
<Facebook Status >

DC: Mom, Fan, Flapping, whoo, Mom, Flap like bird. 
***
(DC pointing out that my “I’m sweating to death” episodes include some of my very own “Flapping” …. Seriously, that’s kind of amazing that he’s made that connection…) 
#IsItHotInHereOrIsItJustMe

——–
<Facebook Status>

#IsItHotInHereOrIsItJustMe enough said…

——-
<Facebook Status >

 Dc wakes up in the middle of the night (yes, it’s 50 degrees and yes, I have both air conditioners running at the coldest temperatures) –
DC:”Mom! The Fan is Freezing!” – from the boy who never seems affected by heat or cold. 
DC: “Mom! Turn it off!”
Me: “DC, I’m sorry but I can not do that. You will have to use another blanket”
I will do just anything for this child, except turning the AC off.
#IsItHotInHereOrIsItJustMe

*****


I wonder where he gets that?? (A reenactment, of course) 
#IsItHotInHereOrIsItJustMe

——–
As you can see, this is not an issue that is new and does not look as if it will be resolved any time soon (unfortunately for the both of us)….

I am very soon off to bed armed with ice pack, my cooling pillow and the A/C set at “ultimate freeze” ~

Here’s to looking forward to the “end of summer”.
*****

~ Originally posted at Take Another Step – Life with DC

Also see: “Hair-Dish-On” is Gone (the official end of summer)

I have a blue light

 

I have a blue light. It is one of those energy saving bulbs that lasts what seems like forever. It has been in my outside porch light for a good 4 (maybe more) years now (and yes, I did notice that there are plenty of dead bugs at the bottom in this photo – that’s life.)

One Halloween about 4 years ago (maybe 5) it was my turn to host the annual Halloween/Trick or Treat party for DC and his friends. We would still be giving out candy so I wanted to find a bulb that would not interfere with the lights and decorations I had put up, as the regular porch light bulb would.

I rummaged around and came across an old bulb from back in the day when I used to Light- it-Up Blue.  The porch light is not easy to change and if the bulb works, I am not changing it. There it sits – four (or maybe 5) years later. Obviously, I do not turn my porch light on all that often for it to last that long.

We did not have Autism Awareness when DC was young. We did not have World Autism Day, so when Autism Awareness started to become a thing, I was all for it. I naively believed that the awareness would encompass all of the spectrum.  If your child happens to fall somewhere on the spectrum other than where the characters that we see on TV fall, you are not allowed to speak about it. Don’t get me wrong – awareness and acceptance is a necessity but some of us need more.

As I get older and DC gets older, I worry more and more about his future and his safety (don’t worry, I am not going to rehash all of my fears for the hundredth time). Awareness is/was necessary though. It brought us more programs into school systems and more understanding and hopefully, acceptance of the students. Awareness has done next to nothing for some of our children as they become adults.

With funding for the disabled being one of the first things to be cut in every budget, even some of those school programs are going away now. I have already said that DC, after all of the people I have put in place as guardians after I am gone are gone, will have to live in a group home. What if there is no funding for that sort of thing when I am gone? What if everything I have put in place falls apart due to these cuts or due to one little miss-step? What would have happened if our whole Social Security debacle happened after I was gone? (A debacle that turned out to be Social Security’s  fault, but they were perfectly willing to take his benefits away, knowing full well that it was their fault – this is a 3 part-er so if you are interested, start here). Who will be there to fix it all for him? Will he be out on the streets or institutionalized? He would not survive. He is in a staffed day/work program right now. He loves it. What happens when their funding gets cut (as it does every year)?

April is a very depressing month for me now-a-days. It really is. Please do not tell me that I am undervaluing my son’s life by saying that. I am not in any way.

He is happy.

You should be so happy.

I love our life.

He loves his life.

I would not change a thing about him, except for his future.

I worry for his future and it is not for you or anyone to judge a parent, any parent who is just worried for their child’s future. His future is not your future, it is not your child’s future, you cannot compare.

I do not disparage those that are celebrating. I do not disparage the associations/charities they choose to support or not support. I do not disparage Autism Awareness at all. I am glad there is push for awareness and acceptance, but it needs to encompass everyone and we need more – much more. 

So I will just continue on my way, writing stories – some with humor and some not, some about progress made and some not. But through-out those stories, it should be apparent to you just how much I love this “boy” and how proud I am of him every day. If it is not in your face apparent in one or two; all I can say is that everybody has a bad day once in a while. I will continue to write about DC and our life  just to raise awareness to another side of the spectrum. I will continue to call and email my representatives whenever the threat of more cuts are in the air. I will continue to plan and research other methods of making sure he is safe and taken care of.

So yes, I have a blue light. It is left over from Halloween, 4 years ago (maybe 5). It may be turned on if someone is stopping by  after dark, but it means nothing other than the fact that I am just too lazy to switch out a perfectly good, working light bulb.

I am glad there is an awareness day and an awareness month. I am glad it has also become an acceptance day and acceptance month.

We need more.

 

 

 

 

‘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

 

 

 

 

 

 

 

We are all very different

Below is a comment I made recently on another blogger’s post (See: I can’t let it go). Due to the long-windedness of it, one might assume it was in opposition to what was written. Believe it or not, it was not. I did agree with much of the author’s points and began my comment by saying just that. It just so happened that this was the time and this was the post that I randomly chose to get it all out of my system. Apparently I did not accomplish my mission to get it all out, because writing it in a comment did not keep the subject from gnawing at me so I am copying most of it here and adding the things I have already said said over and over again after the comment.

“I have done my share of complaining *on my blog* but the complaining is never directed at my son, it is directed at the people who do not understand my child or the people/professionals who should know better. I do not go into detail about melt-downs or behaviors and I certainly share and celebrate all of his accomplishments.

I do not mourn my child.

I do not mourn my life.

The only thing that I mourn or worry continuously about is his life after I am gone. He cannot live on his own. He cannot take care of himself. He does not understand danger. He does not understand when/if someone is taking advantage of him. He has no siblings *so there is no one that I can count on to take care of him after all of the adults that have been appointed are gone*. He is verbal but communication is *difficult* so he cannot communicate when something is wrong.

Even though I have taken all of the steps that I can to make sure that as much as possible is in place for him when that time comes, he will, I am sure have to live in a group home when I am gone and that terrifies me. He will be at the mercy of strangers.

I want him to be as happy as he is right now for the rest of his life. I do not want to think about him being abused, hurt or treated poorly. I do not want to think about him not having his beloved books, markers, band aids, dolls or computer. I do not want to think about him not understanding why – *if  any of the above concerns come to be*, this treatment is happening to him.

This is why I write about him. This is why I tell stories about him so that maybe people will understand how his mind works and understand that not all autistic individuals are the same. This is all that I can think of – every . day . of . my . life. I love my child more than I could ever have imagined that I could love anyone and I live in terror of what will happen to him when I am not there to protect him.

This is not about my life, it’s about his – his future. 

*Maybe other parents who have more than one child do not worry about the “later” as much as I do because they know their child will be taken care of, but this is my reality.*

Although I do not agree with some of the blogs, articles and videos out there, at all. I do think we need to shine a light on the fact that everyone is not the same. Maybe not in the way it has been done recently and not in the words that were used – but we do need to see every side. We don’t need to share every detail – I don’t but I understand that some people do. It is sad that all of this is causing so much upheaval in the *autism community* – there has been enough of that already.

 

 

This is not to say that I don’t have hope. I always have hope. DC, even at this age continues to make progress – little things and small steps, but it is there. I hope that I will be able to find someone his age that is willing, not to take him in but to be there to see that he is being treated the way I want him to be treated, to see that he has the things that he needs and wants, to see that he gets the proper medical attention, to see that he is able to go places and participate in the activities that he loves.  This is where my hope lies.

I had a coworker who after listening to a now ex-coworker complain about having kids, having to work and the fact that no one understood her situation, said “Are you kidding me? Vickie has given up her whole life for her son”. I suppose that was meant to be a compliment, but no; I have not given up my life and it is sad that some people might see it that way. He is my life. I do not feel as though I have given up anything. Sure there are times when I would like to leave the house without having to find someone to watch him, or go to the store without waiting for him to go though his entire ritual before we can leave – where I could have been there and back by the time all of that happens. I would like to not have to worry so much about him when he is not right there with me. This is not giving up my life. I am sure I complain at times; as anyone might complain about their children once in a while.  This is my life. I do not feel as though I am missing out on anything.

DC is happy. That is apparent to everyone who meets him or knows him. He has his days, but doesn’t everyone? He is happy. He is healthy. He loves his life. I know this.

I tell stories, sometimes with humor; sometimes not. I tell stories because if I were to try to explain autism – his autism to anyone, I would be talking for hours and still never be able to give a true picture.

I tell stories to show you how his mind works. I tell stories to show that even when your child hits adulthood (he is 26), you could be going along on your journey and BAM, seizures start at 24 – or BAM, new or old behaviors crop up.

I tell stories because NO ONE is the same.

Everyone’s life is different. Every child is different.

I wrote a piece a while back about death. I wrote about the death of my stepfather because I was not and really am not sure that DC understands death.  I had someone comment that her son is autistic and she was there to tell me that DC absolutely does understand.

No! It does not work that way.

Everyone is different.

I wrote a piece about whether or not DC understands that he has autism (we talk about it because I never want him to think it is a bad thing) and I got a comment saying “I am autistic and believe me, he understands”.

No! It does not work that way.

Everyone is different and unless you know my child and have spent a lot of time with him, you can not tell me what he does or doesn’t understand.

I wrote a piece about all of these worries before, the comment: “I am autistic and I can live on my own – he will be fine”

No! It does not work that way.

Everyone is different.

I guess this has been my point all along. Everyone is different. We need to see that instead of bunching everyone under the same umbrella.

We may not agree with the videos and posts that have been out there recently and I agree that no one should be made to feel as though they are a burden, these people are talking about their children, not autism in general. They are trying to show the side we do not normally see. I do not agree with a lot of it but I do not think that they are trying to demonize autism. They are talking about their life and only their life and oftentimes are posting these items during some very raw moments.

Let’s face it; we all can feel sorry for ourselves once in a while. It happens to all of us. Maybe when we see or read something like this we should not begin with bashing. Maybe we can try to look deeper and maybe even have a discussion. No one will ever be able to see a different perspective when we begin with hostility.

Everyone is not the same.

*****

*Added to the comment for further clarification here

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.

 

 

 

 

 

 

What my nightmares are made of…

This week’s Finish The Sentence Friday prompt is: “I’m really afraid that/of…”

If you have been around here for any length of time, you know all too well what my nightmares are made of.

Dying, of course. I am sure that most people could say that they are afraid of dying, but when you have a child with autism, fearing your own death takes a whole new turn.

When DC was young, my greatest fear, being a single mother (and before that, having a husband that worked nights) was something happening to me and worrying about just how long it would be before someone/anyone realized that DC was alone.

And then he grew up….

As I have written about this subject many times, I am just going to give you excerpts of some of the previous posts that were written about this subject.. He is 26 (almost 27) now.

*****

DC is 24 years old. He is a happy guy.  He has a good life. He is the joy of my life. But even with all that he has accomplished the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings. Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again, he doesn’t have brothers or sisters. He will probably have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers. This is devastating to me. It is what keeps me awake at night.  It breaks my heart already.

He deserves to live the rest his life just as happily as he lives now; and that is the one thing I cannot promise him.

From: Insert Colorful Metaphor

*****

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, it becomes a whole different ball game.

Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them?  How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

From: Dear Abby; Feeling Chastised in New England

*****

If this is not enough to worry about, there is the other issue of him really not understanding death:

*******

On the way home from my mother’s house the night my step-father passed away, I mentioned to Doug that I still was not really sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it is so important to me that DC understands. Why couldn’t I just let him believe what he believes, the way he believes it and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”

  From: Understanding Death it not like a Disney Movie

****

This has been a Finish the Sentence Friday Post. This week’s prompt: “I’m really afraid that/of…”

Finish The Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular prompt (different formats each week of the month). Please visit Kristi or Kenya to read more submissions on “I’m really afraid that/of…”

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  

Traditions New

 

Three years ago we left for vacation early on Christmas morning.

Two years ago was the very first time in my life I believe, that I did not have to go anywhere on Christmas Day.

Back, many years ago when I was single and working in a convalescent home, I would always volunteer to work on Christmas Day firstly because I absolutely LOVED the clients which turned out to be a big reason why I decided going to school for nursing would not be for me – I just got FAR too attached to the patients/clients.  Secondly because I could avoid the whole Christmas dinner with relatives and just show up later, after work.

Then I became a mother and still, staying home never seemed to be an option. DC had little time to “play” (I use the word, play loosely) or use his gifts before we had to leave and go somewhere for dinner.

We go to my mother’s on Christmas Eve, a tradition she started many years ago for the same reasons – too much to do on Christmas Day. He gets his Grandma fix. We have dinner. We open presents. He gets to see his “Fam-ill-lee”, which he loves. So he is not missing out on any of the regular Christmas festivities.

I believe it may have been the vacation three years ago that finally allowed us to break the Christmas Day tradition for the following year and, this year became the second Christmas that we just stayed home. DC was happy. I was happy. Doug who is not really a “holiday guy” and is really only in it for the food, was also happy.

DC had time to look at and play with all of his loot. He had time to just “chill out” (his latest phrase) and like the year before, we went out for Chinese food at night for dinner. We are lucky that there happens to be a pretty good sit-down Chinese restaurant about 5 minutes away, in the next town.

Chinese Food Is a Newer Development in DC-land: We all know that DC is a picky eater. There are only a handful of items he will eat in a restaurant. You see, eating out is supposed to be fun, so yes, he will eat a salad at home, but don’t ask him to eat one in a restaurant. He will eat vegetables at home, but vegetables are not restaurant foods, so just forget it. He will eat pasta at home (another newer development) but he is not happy about it and will NEVER eat it anywhere else – correction: he did twice but both times he was at a party and there were no other options.

Restaurant food is:

Cheeseburger and french fries

Wings

Pizza

Garlic Bread

Chicken Tenders

BREAD

His limited menu, limits our dining out choices, especially on Christmas night when almost all one can find open are Chinese restaurants.

About a year ago, we ordered takeout and the only thing that DC would eat on a Chinese food menu was the wings, so that is what he ordered. I ordered the sweet and sour shrimp. DC saw it. It was battered and fried, so he wanted to try it. I warned him that there was shrimp inside, but it was battered and fried so he was not going to pass it up.

He liked it.

He came back for more.

We determined that this was not just a fluke when the next time we ordered takeout he ordered the wings and again took half of my ‘Sweet Sire Shimp‘.

So now our new Christmas tradition of Chinese food is something he looks forward to and not something we have to research and figure out what we can talk him into.

We went…..

There was no heat….

It was okay though….

We, along with the 3 other tables of people, ate with our coats on…

DC, in his short sleeve shirt (we just recently transitioned from his fall coat to his heavy winter coat, so the transition from short to long sleeves will have to wait a bit) did not want to wear his coat. One does not wear a coat while eating in a restaurant.

Normally I would try to avoid this argument, but IT WAS TOO COLD not to make him wear it.

He got over it when I told him he could wear it over his shoulders like a cape.

 

We ordered a Pu-Pu Platter, which he thought hilarious.

He ate the wings.

We had the rest.

He ordered his “Sweet Sire Shimp

 

Let’s just say, normally when DC is done eating – and he eats very fast – he is done. Keeping him occupied while Doug and I finish is not always easy. He has his book, but that only lasts so long.

Believe it or not, we stayed, I am guessing close to an hour after he was finished talking to the people in the booth behind us – which is what one does in an almost completely empty restaurant. He was totally included in the conversation and seemed to be enjoying it. He never once asked to leave.

They were visiting from the warmth of Arizona and staying in a hotel so unlike us who planned to be there,  I imagine that this restaurant was one of the very few options open for them.

We had a good time and there were hugs all around when it was time to leave.

It just goes to show that you do not always have to do what you have always done, just because you have always done it or are expected to. You can make your own holiday traditions and have a good time doing it.

 

Merry Christmas and Happy New Year from DC, Me and Doug too!