#TravelingWithDC – Star Trek Cruise

Mint in Box

Taking a break from the virus, lock-down, Quarantine Diaries and everything involving it to write about our last vacation.

At this point, our trip seems as if  it happened centuries ago, but it has really only been a couple of months. Please forgive any typos, run-on sentences or just utter incoherence as I seem to have lost all ability to concentrate on any one thing for any length of time during this quarantine.

Those of you that have been here a while, already know that this post is partially a ploy to make you look at my vacation photos. 😉

For those of you new here; this is partially a ploy to have you look at our vacation photos but also it is written with a dash of autism and DC’s perspective (or my perspective of DC’s perspective) of the trip. Do not panic, it looks like a very long post, due to all of the photos – it really is not that long at all.

 

Onward…..

DC was very excited all month to be going on the Star Trek cruise, but in true DC fashion he was already starting to get anxious about when we were coming home before we had even left home.
He remembered the schedule I put on his phone during one trip a few years ago (which helped during that trip but not so much during the next) and asked for a “phone list”-
So that is what I did on he way to the airport.

DC’s Phone List

This time, the list worked perfectly. I did not have to repeat the schedule over and over again (we did have to listen to him recite it to us a few times). He took it out and read it whenever he felt the need to.  What a difference this list made!

In the airport.
DC (yells): I’m getting very nervous about this plane!
This plane does not look very safe to me!
(Line from: Honey, We Shrunk Ourselves)

Because he randomly blurts out movie lines, I always have ask him (when it could be a problematic line for the circumstances) – rather loudly so everyone in earshot can hear…..

“What movie is that from?”, so he can answer just as loudly, “Honey We Shrunk Ourselves” (or whatever movie the line happens to come from).

Bag Tag

 

 

 

We arrived in Miami the day before the cruise. We always try to arrive a day early, just in case. I remember a cruise about 15 years ago that was leaving from San Juan . We arrived a day early because I love Puerto Rico and we wanted to spend some time there. There just happened to be a storm after we left home all up and down the east coast (it was January). Flights were delayed and many passengers did not make the boat. Many had to fly into some of the ports where were were scheduled to stop to get on the ship – missing days of their cruise. Since then, we always arrive a day early, no matter what.

Boarding was quick and easy.

We looked around the ship a bit waiting for the drill and the opening ceremonies.

We were able to get into our room beforehand and DC set up “His Spot”. The spot where we had to climb over him all week, but he did not care.

 

After the safety drill we went to the pool for the opening ceremonies. DC was pretty excited. I don’t know if it was because everyone else was excited or because he spotted Nana Visitor and Brent Spiner, but he was cheering right along with everyone else.

 

 

I had just read the headline that morning in the airport about Kenneth Mitchell’s ALS diagnosis. I did not have the chance to read the article because we were boarding the plane. I assumed he was newly diagnosed. I was shocked and saddened to see that he was already in a wheel chair.  I have been a fan of his since Jericho and was happy to see him cast in Discovery in the first season and as I predicted in our Discovery podcast, there was no way they would hire Kenneth Mitchell for one season and just a few episodes. I was correct and they had him back playing a different character in season two.

As I said, DC was really looking forward to seeing Nana Visitor again. You might remember his reaction to her from Star Trek Missions NY (and a Little Bit of Reading Rainbow), but our first photo op was Jeffrey Combs (a favorite of mine). We happened to be in that area of the ship at our scheduled time, so we were there early enough so the line was not bad at all.

We had not gotten our bags yet, so DC was still sporting his “Eureka” shirt (shameless plug: Yeah, That Can’t Be Good: A Eureka Rewatch Podcast)

DC and Jeffrey Combs

 

Nana Visitor was the first of the many long lines he had to wait in that week. He got used to the waiting eventually, but because it was the first line, by the time he made it to her, he was over it and not his excitable self. He was excited, but not AS excited as he would have been. He would get a second chance when it was autograph time later in the week.

 

DC and Nana Visitor

My surprises of the week were how much DC enjoyed meeting Ethan Peck and Wilson Cruz. He started his week excited about Nana Visitor and Brent Spiner but ended it by adding two new favorites to his “list”.

There were signs all around the ship, especially in the photo/autograph lines that read – “No handshaking, Vulcan Salutes and elbow bumps only” – DC took that to mean, at the beginning anyway that he needed to do a salute for each photo. That came in handy when Ethan Peck noticed him trying to do one and asked the photographer to take a second picture.

DC and Ethan Peck (Photo edited to disguise DC’s name)

DC was able to talk with him a few more times during the week; once outside of one of the shows (I let him say hello. I did not want him to bother people when they were out and about, or eating, but I did let him say hello.) He did not seem to mind and did try to get some conversation out of DC, even though it was apparent that DC has a difficult time with conversation (he is on my nice guy list now as well). The next – at his autograph table, where he again went out of his way and took the time to try to get some conversation out of DC.

DC and Wilson Cruz

Wilson Cruz was very personable and high energy, which DC loved both times he met him (once for the photo and again for his autograph). DC was wearing a multi-colored, very bright, paint-splash kind of shirt for the autograph session. Mr. Cruz told him how much he liked his shirt and if you know how much DC loves compliments about his clothing, then you know that “The Doctor” now has a fan for life.

DC and Anson Mount

He wore his Captain’s shirt for his photo with Captain Pike (Anson Mount) and I actually got to attend, on my own (which never happens), a recording of Anson Mount’s podcast, The Well. I have been listening since the beginning and it was nice to be able to watch it live. I missed the first scheduled date due to DC’s photo op schedule so I do not know who the guest was, but I was able to make this one with his guest Kenneth Mitchell.

Anson Mount – The Well

 

The Well with Kenneth Mitchell

The Well with Kenneth Mitchell

 

DC announced to all in the elevator “I cut my toenails all by myself!”
Failing to acknowledge the torture that his cheering section had to endure while he was doing this earlier in the room.

 

There were plenty of other things to do besides standing in line for photos or autographs.

There was music and dancing. We all know how much DC loves to dance!

 

Panels:

Voyager Panel – DC was pretty good at sitting though the panels. Historically he falls asleep on my arm but he stayed awake for all of the panels we attended.

Voyager Panel

 

Discovery Panel

Discovery Panel

A pajama party with Chase Masterson.

As you might imagine, going out in one’s pajamas confused DC a bit but I was really surprised at how quickly he adapted..

He got a kick out of the “Rat Pack” show.


He did some swimming: DC has not been swimming since he had his first seizure back in 2015. Me, being me and a stickler for “the rules”, after his second seizure, when he had to be put on medication, was told by the ER doctor that I should not let him swim or even take a bath. I kind of “get” this. He is a big guy (he was much heavier/bigger then) and if he were to go under, we not only had to worry about the seizure going on at the moment but “dry drowning” later. DC who always loved swimming seemed to be moving away from it and refusing to go in the water at camp or anywhere else over the previous couple of years anyway, did not seem to mind this at all…

he did not mid at all until he knew we were going on a cruise, that is. He wanted to go swimming. I sucked it up and made Doug promise that he would go into the water with him and stay with him (I haven’t owned a bathing suit since 2005, so I was OUT for the pool). He did and DC was thrilled to go swimming just about every day. I was worried about how I was going to handle camp this year with his renewed love of swimming but as it stands with the virus, there will probably not be camp this year, so I am safe for now.

If you happened to be passing by the
Windjammer buffet at lunch-time yesterday, I was the one screaming “no, no, no!” as DC jumped up out of his seat to take off his shirt and switch it right there when he realized his shirt was inside out.

We watched Star Trek Squares:

I know that DC doesn’t get all of the jokes (and at times that was a good thing) but he seemed to enjoy watching all of these shows and games.

Max Tonight:

Watching the Make-Up artists (they were pretty impressive!)

Oz, Star Trek Style: You all know how DC feels about the Wizard of OZ!

Garrett Wang Stand Up Show.

I think DC’s favorite show of the entire trip was the script reading of “The Devil in the Dark”. He laughed and laughed. Ethan Philips played the “rock monster” and DC got such a kick out of some of the sounds he was making. Of course the cast included his beloved Nana and his new favorite, Ethan Peck so we really couldn’t go wrong, there.

 

 

Me: DC, what was your favorite part of the show?

DC: The Fart! hahahahahahaha

(The noises The Rock Monster made)

We made a nightly visit to Qapla”where DC had his fill of Shirley Temples (they gave him extra cherries there) and I could have a Kahless’s Martini. We went there after the show and DC saw Nana Visitor come in and sit down at a table. No, he wasn’t allowed to bother her and I didn’t want him to yell across the place, but he was happy just to see her there (I mention this for a reason).

 

The following day was his scheduled autograph session with her. He was more excited than the day of the photo op because he was now used to waiting in these lines. Doug prompted him to tell her that he liked her in the show the night before. She thanked him and told him that she had seen him (I imagine in Qapla”) right after the show. He was a thrilled about that.

Brent Spiner:

Unlike some of the others who were too busy to even say hello (we’ll get to that later), I was impressed with Brent Spiner.

First, some backstory from the “Everything is Related Series”Everything is Related: Star Trek and Geppetto – October 2019

Last night we happened to be watching an episode of TNG.

The beginning credits were running. I was not really paying attention when DC said:

“Brent Spiner. Not Stromboli in “The Wonderful World of Disney’s Geppetto” (we must always recite the entire title of any movie, book or television series)

When DC tells me that someone is NOT a character, what he is actually telling me is that the actor IS the character; in this case “Stromboli” in the movie he just mentioned but he is not playing that character in this movie or television series we are watching at the time.

DC has been watching his Geppetto DVD … um, excuse me: “The Wonderful World of Disney’s Geppetto” for many years. I had never seen it, but I looked it up and he was correct!

Apparently, DC had not ever recognized him as Data, but he did recognize his name in the credits, because he does know the name of every person who has ever played or lent their voice to any Disney character.

Of course I was going to get a ticket for a photo op and autograph for Brent Spiner! How could I not?

As you might imagine, Brent Spiner had one of the longer lines of the cruise. But still, he took the time to talk to DC a bit during the photo op and when DC called him Stromboli, he looked confused for a moment and then broke out into a Stromboli song! I have no idea if it was an actual song from the movie or if he made it up right there, but needless to say, DC was thrilled!

A few days later we when we went for his scheduled autograph session with Mr. Spiner, the line was just as long as it was for the photo op, so I did not expect much.

But once again, I was impressed.

We had an old Disney promo photo/description for – say it with me – “The Wonderful World of Disney’s Geppetto” for him to sign. He read it, we talked about it, he wondered why Disney Plus does not carry these older musicals, he showed it to Gates McFadden who was at the table with him and pointed out (something that I hadn’t noticed before because now that DC watches his DVD’s on his laptop, I no longer have to watch these things over and over and over again), that Rene Auberjonois was also a cast member.

(Photo edited to disguise DC’s real name)

The cruise was fun and I really had no complaints about the way it was run. There were a few issues, though.

The way that the tickets were sold really needs to be modified for the next time around.

We purchased our photo-op and autograph tickets months before the cruise date. We bought our tickets for specific people.

When we received our tickets on board, they were not for specific people, but for specific “levels”.

We bought a ticket for a photo-op with Kate Mulgrew only because it was a Voyager anniversary cruse, so how could I not?

Kate Mulgrew was a “Gold Level Ticket”.

If memory serves, the celebrities who fell under the Gold level were:

  1. Kate Mulgrew
  2.  Jeri Ryan
  3.  Rom and Leeta in full costume.
  4.  The Captain who shall not be named***

I ran though the crowd to get this pic!

 

The problem with this Gold, Silver and Bronze system is that the tickets are interchangeable. I fully understand the intent; there is a lot going on and one may find themselves with a conflict of some sort at the time of your scheduled op.  BUT… it also creates a false expectation of the line size for the organizers.

This is in no way a complaint about the length of the line, it is a complaint about how the celebrity was treated by the venue and the interchangeable tickets and in turn the way DC was treated by the celebrity.

While we were in line but still out in the lobby I heard a group of disabled individuals complaining to their support person/group leader about their experience with Kate Mulgrew (I am a people watcher so I pay attention to everything especially if I think there is a problem that will effect DC). I could not hear their complaints but I did hear the group leader talking to one of the event organizer crew.  The event organizer apologized for whatever happened  and went on to explain that “Ms. Mulgrew is a very smart and savvy woman who knows exactly what her contract states and exactly the hours she is required to take photos and sign autographs”. I don’t know what she did. Maybe she left and took a break, maybe she was not very pleasant. I don’t know, but I knew there was a problem.

That made me nervous. I started having anxiety that we would be standing in this line forever only to have her leave. That would not have gone over well with DC. We hadn’t had all that many melt-downs during the trip and the ones we had were minor, I did not want him to be disappointed or have a meltdown if something like that happened.

Most of the photo-ops were scheduled around dinner hours meaning that the people with the later dinner time could go to the 6:30 op and those with early dinner times could attend the 8:30. I believe there probably should have been a break for the celebrity in-between ops, but there were so many people in line that I am sure that one op lead right into the other. There were so many people in line, that I am sure her photo op went far beyond the time allotted as well. I understand. That is a long time to expect someone to sit there and take photo after photo.

We have been to many events like this in the past and we know that a photo-op was not the place for conversation and as I said earlier, I was impressed at the number of celebs that did take a little bit of time to converse.

When it was DC’s turn for a photo, she did not even look at him. DC, being DC knows he should be polite and say hello. He tried and tried, but she would not even look at him. He tapped her on the shoulder, just to say hello and still she would not even look at him.

Yes, he smiled for the photo, because any time there is a camera in sight, he will stop whatever he is doing and smile (which is why I cannot ever get a candid shot of him)

He tried to say good bye after the photo but she still would not even turn her head. After we left,  DC would not stop insisting that he had to go back and ‘a-polo-gize’ to her because he was convinced that he had done something wrong. It took us a while to make him understand that he had not. DC is not always one to notice when someone is ignoring him (usually because I try to cover it up for him), but he noticed and it made him feel bad.

I never ask for or expect special treatment for him due to his autism, but I do expect him to be treated with common courtesy and he was not.

The next “issue” had nothing to do with the interchangeable tickets, it was just rudeness.

We were in “line” for Jeffrey Combs (there were two people in front of us and NO ONE behind us). We watched him sign and converse with both people in front of us. When DC got to the table and he started signing his photo, his assistant/wife or whoever she was, come up to the table and said “Excuse me one moment”. He turned around and they had a conversation as he pushed the signed photo towards us with out ever turning around again.

Again, THERE WAS NO ONE BEHIND US! This could have waited. Understanding that we were being dismissed and he was not going to turn around again even to say good-bye or thank you, I, rather loudly said good-bye, in a not so friendly fashion. He turned around quickly and said “Oh! Goodbye”.

Casey Biggs, who was at the table with him, noticed this and was nice enough to jump in to thank us for him (even though we were not at his station).

When we left the table – There was still NO ONE behind us.

Doug, who never notices anything (he will tell you that himself), asked me if Jeffrey Combs has been added to my “turn your head and spit” list.

The jury is still out on that one.

Moving On:

I was kicking myself for not bringing DC’s “Lizard Spock” costume with us, when we saw “Gorn’s Galactic Gala”. Me, thinking myself very clever found a Lizard costume years back and because DC absolutely knows Mr. Spock AND loves the Big Bang Theory; especially Rock, Paper Scissors, Lizard, Spock, I thought it would be hilarious for him to dress as “Lizard Spock” for Halloween. Unfortunately, I only succeeded in cracking myself up because no one got it. People who knew Star Trek thought he was Gorn and everyone else just didn’t know at all. DC and I knew, so that was all that mattered.

 

 

He would have fit right in…..

 

 

 

 

As you would find on every cruise – there was the standard towel animal on the bed every day when we came back to the room. DC cannot leave these alone. He just can’t stand that the towels are not in the right place and has to take it apart THE MOMENT he walks into the room.

It was entertaining to see how long it would take for him to notice it and take it apart. It was usually immediate.

More Dancing:

I believe this was the last night on the ship. I don’t recall the name or the theme.

 

 

 

DC wanted to see Brent Spiner again, so we went to his show… Inside the Actor’s Studio. We did not know who the guest would be and unfortunately as it turned out, it was The Captain who shall not be named***. Brent Spiner talked for a good long while before announcing who his guest would be and before bringing him out, so DC got his last “Spiner Fix” and we left when the guest came out.

We had a really nice time and I would LOVE to do this again! I don’t know if I will ever be able to talk Doug into it again – he’s not a Star Trek fan, although he did have a good time too. Don’t let the face fool you.

 

Oh! We did stop in Puerto Rico, St. Thomas and St. John too!

It seems so long ago now. Two weeks after we returned home the whole country shut down. It gives me pause to look at these photos and the crowds.

Do you find yourself having anxiety when watching characters on television shows opening mail, willy nilly (where did THAT word come from?) hugging or shaking hands or is it just me?

I fear nothing will ever be he same again. I hope I am wrong.

****

*** The Captain who shall not be named

I did not write this but I have shared it many times over the last few years as the best explanation I can find…

How William Shatner Betrayed Autistic People’s Trust

 

 

 

 

 

 

 

 

 

 

 

 

The Blue Bulb

A year later … it is still there, again for no other reason except that it is still working and it is difficult to change. Left over from years ago when I was ignorant enough to support “The Organization That Will Not Be Named” (AS). In my and other’s of the same era’s defense – we had nothing else. We were at the mercy of teachers, doctors and professionals who were supposed to know better. We had to learn and change on our own…

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.

 

 

 

 

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.

 

 

 

 

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