#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. ūüėČ

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 ‚Äúphone list‚ÄĚ-
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 ‚ÄúI cut my toenails all by myself!‚ÄĚ
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 ‚Äúno, no, no!‚ÄĚ 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:

‚ÄúBrent Spiner.¬†Not Stromboli in ‚ÄúThe Wonderful World of Disney‚Äôs Geppetto‚Ä̬†(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 ‚ÄúStromboli‚ÄĚ 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 ‚Ķ um, excuse me: ‚ÄúThe Wonderful World of Disney‚Äôs Geppetto‚ÄĚ 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

 

 

 

 

 

 

 

 

 

 

 

 

Summer Reruns: Shore Leave

Four years ago this weekend, we made the ‘Trek’ to Baltimore to attend Shore Leave…… yes, everyone puts up with me and my Star Trek obsession.

The previous October, we made it to New York Comic-Con. I was nervous Рit was so crowded, but the hope of meeting Felicia Day, kept DC pretty much on track. He also got to meet William Shatner and the Real Mike Tee Vee. All were very nice to him and he was very, very happy.

A few years back a friend of mine told me about “Shore Leave“,an event held in Baltimore every August. It is smaller than ComicCon and the original plan was to try this first, see how DC¬†managed it¬†and then move on to the bigger ‘Con’ in NY at a later date.¬†Somehow we ended up doing it in reverse. But, since DC did so well at Comic-Con we decided ¬†Shore Leave¬†would be a breeze.

To Boldy Go....

The first “sign” that DC learned when he was very young (for those of you that may not know, DC was non-verbal until he was 7 years old) was the “Live Long and Prosper” sign. If and when he saw a picture of Mr. Spock or heard him mentioned, he¬†used that sign.

Today, he is verbal but will¬†still, at times¬†use his signs in conjunction with his speech – that “Mr. Spock” sign has come to represent Star Trek in general for him and he still uses it.

We left on Thursday afternoon as soon as DC came home from his work program. It took a full 8 hours to get there (traffic). It was late but at least we would be there to spend some time in Baltimore on Friday before Shore Leave opened on Friday night.

Reading the¬†Shore Leave schedule,¬†I noticed that¬†there was a “Rock, Paper, Scissors, Lizard, Spock” tournament at 6pm. DC loves the Big Bang Theory and thinks “Rock, Paper, Scissors, Lizard, Spock” is the most hysterical thing he’s ever heard. He does not really know what it means, the words are¬† just so funny to him. I thought if we attended the tournament, he¬†would see¬†exactly what it is…. a game.¬† I didn’t think he would actually understand the game, but at the very¬†least he might understand what they are talking about in the show.

When we first walked in, the moderator was explaining the rules, reading from a very confusing T-shirt, complete with diagrams and pictures of the signs. One of the participants piped up “That boy (DC) has the directions right on his shirt” – I don’t think the moderator appreciated this, he looked up, sighed¬†and went right back to explaining with HIS T-shirt. DC got a kick out of the tournament and asked me more than once “to play“. I knew he really didn’t understand it and thought about asking the moderator if someone could play a quick game with him when they were finished, but during the practice rounds I did with him, I could see he really didn’t get it. He just threw whatever I threw. I told him he could play against me. We played at the table while the tournament was in progress. This seemed to make him happy enough.

After the tournament we were walking down one of the hallways and I¬†noticed the TARDIS in the corner and pointed it out to DC.¬†He recognized it immediately yelling,¬† “Dr Who” We went to check it out. It was a photo booth. I don’t know what sort of directions the man gave DC when he was in the booth, but I could see from the computer screen outside that every time “Look at the Camera” came up on the screen, DC did something with his hands and his face, when the prompt was not there he sat looking at the screen normally. I’m sure he was following his¬†understanding of the directions the¬†man gave him.

He also¬†happened to find a pair of TARDIS slippers. There were only two pair on the table, but thankfully one pair was his size. He was pretty darn happy to¬†get them. He has a “thing” about slippers lately, I don’t know why. He has a few pair of¬†slippers at home¬†but never wanted to wear them, all of a sudden he loves slippers and wears them all of the time. The Tardis slippers were a nice find for him.

Pictures taken, slippers purchased, now DC was beginning to get antsy. He had enough for one night and as you may or may not¬†know, DC’s favorite thing when on vacation – besides bookstores and¬†restaurants, that is – is the hotel room. He really just LOVES hotel rooms, so he was anxious to get back to “his” desk and all of his “stuff”.

On Saturday morning, we decided to take in the “Fairy Tale Panel” back at Shore Leave. DC must have been much more exhausted from Friday than I realized as he fell asleep and slept (in the front row, mind you) throughout the entire hour. 200lbs of dead weight hanging on me the entire time –¬†just what you want when you are running a panel, someone fast asleep in the front row!¬† He did also¬†sleep through the Once Upon a Time panel at ComicCon, but at least it was a dark room and we were nowhere close to the front. I suppose it could have been worse, he could have been snoring.
Saturday was much more crowded than Friday night had been. We tried to stay away from the most crowded areas, but refreshed from his “nap”, DC made a bee-line to the Buffy doll that I knew he wanted but refused to¬†buy the day before – I think he was just too overwhelmed on Friday night to¬†know what he wanted until he found the Tardis slippers, that is..
We had purchased tickets for 3 photo ops the night before, but we still had a little time to kill, so we went to the autograph tables, which surprisingly, were not very crowded.

Our first stop was Robert Picardo. I explained to DC that he was once on a Star Trek (Voyager). His sign read “I’m the Doctor”. This confused DC, he knew it wasn’t David Tennant, the only Dr. he is aware of, but the sign did say “I am the Dr.” so he called him Dr. Who.

– just following directions, Doc…….

We moved on to Michael Welch. He was exceptionally nice to DC – really, they all were.

We then headed to THE most confusing Photo Op line ever. We had tickets for 3 Photo Ops which meant we had to get in line 3 times. The lines did move quickly, but it was all very confusing trying to figure out where we were supposed to be.

The woman at the entrance to the photo room just Ooo’d and Ahh’d over DC every time we arrived for a photo. “Oh! Look at him, he is so excited!” – he was, plus there is no one that loves to have¬†their picture taken more than DC does.

His first photo was with Robert Picardo, “Dr. Who” from a half hour earlier. He didn’t call him Dr. Who this time even though he was wearing a Dr. Who shirt (he didn’t have his “I’m the Doctor” sign with him and it wasn’t David Tennant on his shirt).

Next up was Eve Myles. She was a few minutes late getting to the photo room and when I saw her coming down the hallway, I got a little bit anxious. Her hair was much longer than it is on TV and in photos. DC LOVES long hair, LOVES it! Before we¬†were faced with another¬† ‘Snow White Incident’ I launched into “the rules”.
“DC, you can not touch her hair”
“Okay Mom”
“DC what is the rule? – Tell me”
“Don’t touch your hair” (the usual pronoun confusion,but I knew he understood)
and then….. just for good measure…
“DC, what is the other rule?”
“Don’t pick up the people”
and he didn’t……….

Next and thankfully, last as DC was tired of getting in and out of lines…. Silas Weir Mitchell. I love Grimm. DC has seen it a few times, but I don’t think he really knew who he was. It didn’t faze him because, someone was taking¬†HIS picture¬†and isn’t that really all that matters?

At this point, DC was starting to get edgy. Our last stop was the Eve Myles autograph table. We had a good 1/2 hour wait until she was finished with the Q&A she was leading. We slipped inside to listen and more importantly to move DC out of the hallway.

He didn’t want to sit down.

He didn’t want to stand where we were standing.

He didn’t want to stand in the next place we moved to.

We moved close to the door and he seemed okay with that.

But then¬†a staff person came over and¬†told us we couldn’t stand there so we moved back to the hallway.

We decided to just wait at the table.

There was a wonderful lady sitting at the table who just happened to be a Special Ed teacher (we seem to run into Special Ed teachers everywhere we go, she was the second on this trip), she let DC pick out the photo he wanted autographed early. He picked a photo of¬†Ms. Myles¬†from a Merlin episode. We chatted a bit, she chatted with DC a bit as well. She told him he was doing a good job waiting – he loves compliments….. who doesn’t.

The Dalek from the Tardis photo booth was now roaming the hallway “EXTERMINATE!”, ¬†so that helped to keep him occupied until¬†Ms. Myles¬†was finished with her Q&A. When she arrived at the table, the woman whispered something to her and then introduced her to DC. She told her that he was waiting a long time for her. He was first in line for her autograph, she was lovely to him. He was thrilled…..

but he was also “done”.

I¬†didn’t try to push him to do any more. We arrived that morning at 9 and it was now after 3.¬†That was a long stretch for him, even with the nap.¬†He had a few sketchy moments throughout the day, but I really I think, overall he did a fantastic job!

In the words of DC, “We all had a wonderful time”

except for this guy…………..

this guy....

this guy….

 

*****

(This post was originally posted as “To Boldly Go” in August 2014)

Holiday Reruns – Lessons from Santa

train s

December, is the time for reruns. I love reruns, especially holiday reruns. The following is a post from December 2014 about the important lesson DC and BB learned while riding the Santa Train.

******

Lessons learned on the “Santa Train” – 2014

train

(Code word of the day: “Supplement”)

As parents, we all¬†come to¬†the ‘Questioning the Existence of Santa’ crossroad sooner or later. It is a sad milestone. It begins to be difficult for them to understand and believe in something that they can not see. Sure we see Santa and his helpers quite often during the months before Christmas, but never during his Christmas Eve deliveries. This causes our children to question his existence. Why can’t they see him? Why must they be asleep? As I explained to DC, Santa has a job to do. If he¬†took the time¬†to stop and visit with the children in every house he delivered gifts to, even with his magic, he would never be able to finish in time to get back to the North Pole to celebrate Christmas with Mrs. Claus and the elves.

It took DC many years to understand Santa. He knew he would receive gifts, but the whole idea of Santa was not something that could be understood easily. His not understanding, did not stop Santa from leaving him gifts.

When it finally clicked and he did finally get it, he was all in! Now that he does understand, he would never and will never question his existence.

The one problem was, DC ‘s Christmas requests have always been small (in size) gifts. Santa could very well bring him 20 DVD’s, but the pile of gifts (visually) would be very small. DC doesn’t understand cost/size vs. number of gifts.¬†He expects a very big pile of gifts. So, over the years¬†I would always “supplement” the Santa pile with gifts of my own.

Being a single mother for more than 20 years now, I am the sole “supplement-or” (yes, I know that is not a word) of DC’s gifts. Which means I not only “add” to¬†what Santa brings¬†just to make the pile look more exciting for DC, but I also, of course, have to buy additional gifts¬†from ‘Mom’. This gets to be a little bit overwhelming for me, not only in cost, but in trying to come up with other gifts ideas¬†to make that “pile” he needs to see.

Now that DC is an adult, and the items he asks for are¬†smaller still, it is becoming harder and harder to “supplement” Santa’s ¬†gifts, to make that Christmas gift pile”, ¬†I did finally have to confess to him that some parents, with adult children, have to help Santa out a little bit. Santa has so many little children to deliver packages to on Christmas Eve, that it is hard for him to get to everyone. So now that the is an adult, Santa only delivers his stocking and the rest of the gifts in his pile are from Mom. Santa always did a pretty good job with his stocking, by the way. He was fine with this. As long as Santa¬†is coming, even just to bring a stocking, all¬†is well.

Coincidentally, the morning I read the post from Autism-Mom, was the day that DC, his best friend, BB, BB’s Dad, Doug and I were going to take a ride on the Santa train.

Earlier this week, BB had just been told by one of his other friends that he was too old and should not still believe in Santa. He was upset by this, but BB knew better. He knew he was correct in believing.

Both DC and BB were very excited about riding the train. They always have the best time when they are together anyway.

stst2

Santa boarded the train a few minutes into our trip. He received more hugs that he expected, I imagine.

BB mentioned to Santa, what his friend had said to him that week. Santa took a little bit of time to talk about it with BB and DC.

(This video below is very poor quality – it was dark on the Santa train, but you can hear some¬†the conversation and Santa’s advice to BB)

“Those who don’t believe, well they are the one’s that are missing out” ~ Santa Claus

So there you have it, straight from Santa’s mouth. BB felt much better. He knew it before but now he really knows that he was right all along…

 

 

 

 

 

 

 

 

Revisiting “Feeling Chastised”

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.

I am re-posting now, in this, the month of April. With all of the added awareness and supposed acceptance that has taken place over the last few years, really not too much has changed in this, our little corner of the world, or in my friend’s corner of the world. Not very much at all.

If anything; things have become more difficult….

Dear Abby – Feeling Chastised in New England

Let's all celebrate

Let me just begin by saying that since I began writing this blog¬†I have had the pleasure of meeting a few Autistic Adults.¬†¬†They are amazing individuals that do a great deal to raise awareness about autism. I ‚Äúspeak‚ÄĚ with¬†one in particular¬†often enough to consider him a friend. He is a wonderful human being and it makes my day to ‚Äútalk‚ÄĚ with him or just read his posts. He is truly an inspiration to parents of children with autism, other teens and adults with autism. But above all that, he is a glowing example of the good things that can be found in today‚Äôs young adults¬†in general. I don‚Äôt think of him as having autism, I think of him as my friend, plain and simple. I‚Äôm honored to have him as my friend.

My son‚Äôs autism or level of autism¬† is not like my new friends’. Autism affects each person differently. ¬†Therefore, parents should not be made to feel inferior or chastised for their own beliefs. Everyone is different, everyone. There is no right or wrong when it comes to autism, just a lot of people arguing with each other, it seems.

Today I received this private message on my face book page from a friend of mine who is pretty much in the same boat as I am ‚Äúlevel-wise‚ÄĚ.

The fact that she did not feel comfortable posting it publicly, speaks volumes about the environment we find ourselves in with the hostility that she (and I) knew would have ensued had she posted it publicly.

(The following message is used with permission. The names have been changed to protect the innocent)

Dear Abby (Vickie)…I think I’m missing something. Why is it wrong to feel like I’ve lost something in having an Autistic son? Why are we supposed to not want a “cure” or something that helps them handle this world we live in a little better? I look at the video of Bob from birth to 18 months and there were signs, but he was still there. It was June of 1996 – he was 18 months old – all of a sudden he disappeared. He is lost to me. He will never have a normal life. He will constantly need care and supervision. There are many people that are on the much higher functioning side of the spectrum that can navigate the world today. Bob is not one of them. Why am I supposed to not want that to be different? People say you don’t miss what you never had – but I know what could have been. I know what life he could have had and now for sure will not. He will find happiness somehow; he will be as productive as his disability allows him to be. But the sky is not the limit for him. The opportunities for him are not the same as they are for my daughters. Why am I supposed to celebrate that? With all this¬† hullaballoo about celebrating autism¬†over the last few months, I’ve been feeling like a minority. I think these kids are lost – lost to the life that could have been, lost to the possibilities that would have been. I feel they have a disability because they are “not able” to process and handle what happens in life the way others do. Why are we getting lost on the rhetoric? Am I missing something Vickie?

Feeling Chastised in New England

I have said this many times and in many different ways:

  • I celebrate my son as an individual
  • I celebrate my son because he is my son and I love him more than words could say.
  • I celebrate his accomplishments, no matter how large or small they may be.
  • I celebrate him because he is wonderful.
  • I do not celebrate the part of¬† his autism that will keep him from being safe and out of danger.

I write stories about my son because:

  • He is wonderful.
  • I‚Äôm very proud of him.
  • I‚Äôm very proud of his progress.
  • He makes me laugh every day.
  • He makes me smile every day.
  • He makes me worry every day.
  • I believe these stories shed a little bit of light on autism and the way his mind works ‚Äď not all autism, but his.

I don‚Äôt believe anyone should be made to feel ‚Äúless than‚ÄĚ. I don‚Äôt consider my son ‚Äúless than‚ÄĚ but there is an issue. There is that life he could have had. Maybe it would not have been a better life, maybe it would have been, but at the very least he would have been able to understand it and navigate through it.

Individuals should be celebrated, not the diagnosis.

Like ‚ÄúFeeling Chastised‚ÄĚ, my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he‚Äôs being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

My suspicion is that many of these parents in celebration¬†have younger children or children that can function at a higher level than mine. They still have hope of great progress, and they should have hope, there is always hope. I still have hope for more progress, but living in the real world I know that even though he continues to make progress, none of the issues listed above will improve enough that I will not spend every day and¬†night worrying about what will happen to him when I am gone. This is the stuff our nightmares are made of. What‚Äôs going to happen to them when we‚Äôre all done celebrating autism? Our ‚Äúkids‚ÄĚ are going to outlive us, people. Who‚Äôs 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?

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.

Those of us with adult children that will not be able to live or navigate the world with out constant support, that have been in the trenches for many years, long before there was a ‚Äúspectrum‚ÄĚ, long before there were many of the services available today, deserve a little bit of respect and deserve to be able to voice our opinions as you are allowed to voice yours; ¬†to want something more than a celebration.

I believe in raising awareness. I believe in trying to make people understand Autism. I believe that INDIVIDUALS and accomplishments should be celebrated. I also believe some of us need more than that.

My only wish is to be able to die in peace knowing my son will be okay…….

Putting the Screws to the Adults that Fall In-Between

If my posts seem to be a little more “downbeat” than usual lately, it is because that is the way I am feeling with all that has gone on and is going on with heath care, medicaid, (let’s not forget our whole Social Security fiasco) and now new regulations regarding work/agency programs that can also directly impact my son.

Just look at all you have to look forward to when your child becomes an adult.

A few months ago I wrote the post below about Sub-Minimum wage and how, as much as people seem to want to do away with it all together, it has been beneficial for DC (please read the post below, Sub-minimum; Another View, ¬†in it’s entirety before assuming anything about that last statement). He is working for an agency – an agency that created these jobs for people like him who will never be able to go out and get a job in the community at minimum wage without constant support. This is not to say that there are not other companies that have disabled adults working at sub-minimum that should be paying minimum wage. There is abuse and there are loopholes in any system and all entities that hold a below minimum certificate should be monitored closely. But, let’s not throw away the baby with the bath water.

He is not in a sheltered workshop. His program and others within the agency are open to the public.

A few months ago I received a letter that due to new federal regulations, all individuals making sub-minimum wage must attend “career counseling” once a year.

If you have been around here for awhile, I will just let you sit with that a minute……

??????????????

I would have liked to have been a fly on the wall for that- but okay, I get it. The government wants to be sure that there is no one working in GSE (Group Supported Employment) at sub-minimum that is capable of working out in the community. But really, every year?

Next came the notification that many of the programs at this agency (and other agencies, I imagine) have been re-designated as “Transition Programs” from GSE programs. Transition, meaning that the clients cannot stay in these programs indefinitely. They must eventually transition into community employment.

I had DC’s 6 month IP (no “E” as he is out of school) meeting today and the woman who was supposed to explain what his agency is going to do did not attend, so we will have to schedule another meeting, but this is what I have been able to piece together right now:

Because these programs are open to the public but our children do not GO OUT into the public, even though they have customers that they deal with on a daily basis, they have been re-designated as transition programs. What could possibly be the difference?

These programs/jobs that were created for our adult children who are in-between¬†the adults that are not able to hold any type of job and the adults that are able enough to hold a job out in the community, are now to be considered transition programs leading to employment out in the community. ¬†If they find that DC does not qualify as “able to transition” to a regular job in the community, he may end up in a day/recreation program instead of being able to go to work.

OR: The agency has to come up with different options for GSE employment; meaning sending crews or enclaves to grocery stores or other businesses at sub-minimum wage with support staff.

So, we have some states trying to do away with sub-minimum all together because they envision greedy employers who would rather pay sub-minimum wage than hire someone at minimum wage and they envision disabled adults being taken advantage of. Yet, the government is willing to do away with agency jobs that were created for our children and other adults that cannot hold a regular job, in favor of sending them out in groups with support to a grocery store (or where ever), taking a minimum wage job at sub-minimum wage. Isn’t this exactly what the sub-minimum critics are complaining about?

Even if this sort of program proves to be beneficial; there is the added obstacle of finding businesses that are willing to participate in this type of program. That is not always easy; I know this. I have heard it from many of the agencies that I visited before placing DC in his current program.

I really do not understand this at all, but once again, it is children like mine; the ones who are in the middle that no one seems to be taking into consideration….

(My caseworker did say that the wording was very foggy, so this is what they were able to decipher at this time. I will post updates and/or corrections as I learn more)

From August 2016:

Sub-Minimum; Another View
money

I just received a letter from the agency that DC “works” for. To paraphrase; there are new federal rules that will impose limits on people earning less than minimum wage. The clients that are already earning sub-minimum can continue to do so, but they will be required to receive “career counseling” annually. Basically, they will no longer be able to accept new clients at sub-minimum.

I know that there is cheering and celebration going on after reading the paragraph above but I ask that you take a minute to read another side to this issue, because there are two sides to this. If your child is not an adult and out of school, the reality of the “other side” for many may not be something you might¬†be thinking about right now.

I agree that EVERYONE is entitled to be paid minimum wage, EVERYONE! The reality is that some of our children will never be able to work at Walmart, Target or hold a “regular” job. Should they earn minimum wage if they do not hold a regular job? Absolutely! Do I think my child deserves minimum wage? Absolutely again, but unfortunately the funding is not there to support it.

When DC was young and in school, I had no idea how any of this worked. I did not understand agencies or Group Supported Employment at all. I would have had the same knee-jerk reaction to him working at sub-minimum wage. I would have envisioned sweat shops and whatever other horrors that you might be envisioning right now.

My son works for a non profit agency – Group Supported Employment. He works in their greenhouse which is open to the public. He has staff supporting him all day, everyday. He earns less than minimum wage.

DC is 25 and will never be able to work without support – a good amount of support. The agency that provides his work program is funded by the state. Funding is cut each and every year – each and every year. We can all scream and yell that these programs need more funding, but the reality is that funding for programs for the disabled is cut every year. If his agency is made to pay their clients minimum wage, they could only afford to keep 6 of the 12 clients working in the greenhouse. Where would that leave my son and others like him? He has the right to feel productive. He has the right to do something meaningful with his time every day. Where would that leave him? Sitting home all day or in a day program (like a day care)? He loves his job. He likes to go to work every day. Basically what this letter is saying is that they will no longer be able to accept ANY client at sub-minimum, which in reality means they will not be able to accept ANY new clients at all – at least in their work programs. So where will all of the students leaving the school system go if they are not able to work at a regular job out in the community?

I do believe that agencies holding a below minimum certificate should be monitored closely, but to do away with them blindly is doing a disservice to those that are not able to hold a regular job.

This agency also supports and trains clients who are capable of going out and working in Walmart, etc. Those clients, after they are trained DO make minimum wage or more because they are paid directly by the company that hires them Рwhile still getting support when needed and at times, transportation through the agency.

If your child is lucky enough to be able to work without support out in the community, that is great! If not, I hope that in the future these agencies are able to receive the funding and support that they need, because all of our children deserve that. Until then, please do not take away their opportunity to have a job like everyone else and benefit from the interaction with the public, while still having the support of staff to help them throughout their day.

I am in no way advocating for anyone to make less than minimum wage, I am saying that right now, this is the reality for my child. He is working like everyone else. He is in a place with staff, he is safe and he is being looked after.

For those of you that may be envisioning the “sweat shop” scenario; the “clients” attend the program for 6 hours per day. They do as much work as they are capable of doing. They are not forced to work. They are not doing hard labor or strapped to a chair to meet a quota. They are learning, they are socializing they are out in the community and making contact with the public. They are surrounded by and supported by agency staff. These “businesses” are created for the soul purpose of providing “employment” for their clients. They are not booming businesses and most of them are not profitable. Even though they are open to the public, they are providing a service to our kids, more than to the public (I can only speak of the agencies in our area, but I imagine that it is about the same in most agencies).

While the states continue to cut the funding of programs for people with disabilities, the Federal government in turn expects these already struggling agencies to now pay minimum wage. They are required to maintain a certain level and staff to client ratio, but when the funding disappears, the level of staff still must me maintained.

Think for a minute about where you think your child will be after he/she finishes school. Will he/she be able to go out and get a job and work without support? If the answer is no, or maybe not, then think about just what they will be doing instead. Will they stay home all day? Enter a day program/daycare? What do you think they would want to be doing? Would they like to say they have a job like everyone else around them?

As much as DC lives in the present and “what comes next” is not what is in his head most of the time, he does know that Mom is an adult and has a job. He knows that Doug has a job. He knows his friends have jobs. He knows that most adults have jobs. He knows that he is an adult. He likes that he goes to work. He likes that he has a job. But, unfortunately the government would rather see a large portion of this population sitting around at home or attending day/recreation programs than do something that might make them feel productive…. to have a job like everyone else.

“For Sami, Love Daddy” – Down Syndrome Awareness Month

Still, one of my favorites…..

“For Sami, Love Daddy”

Chloe and Sami

In 1992, when Sami, who has Down Syndrome, was 18 months old, her father, Rich, was the Senior Producer for the Sony JumboTron in Times Square. He began producing a series of spots to raise awareness and acceptance of people with Down syndrome to run on the JumboTron during Down syndrome awareness month. He continued to produce these PSA’s on his own until 1994, when he contacted Emily Perl Kingsley.

Emily is an Emmy award-winning writer for Sesame Street, the author of a wonderful essay entitled ‚ÄúWelcome to Holland‚ÄĚ and a personal friend of Big Bird. She also has a son with Down Syndrome.

Emily Kingsley immediately saw the value in what Rich was producing and through her contacts involved NDSS. Together they produced spots which included children with Down Syndrome from all around the country.

The response was overwhelming! All of the featured children and their families from 25 different states came to New York City to view the spots on the JumboTron in Times Square.

As there was so much interest that year, NDSS held an event in Times Square the following year, where all the families could gather to watch the video. A wonderful reception followed at Sardi’s for all the families that made the trip.

In 1995, as a result of the success of this event, the NDSS Buddy Walk was born. Again families gathered in Times Square to watch the presentation and then headed up to Central Park for the Buddy Walk.

In 2013,  Sami, then 22 years old, returned to the Square for the event that was created because of her and the love of a father for his beautiful daughter.

‚ÄúIn my heart the event will always be ‚ÄúFor Sami Love Daddy‚ÄĚ

РWhich is how Rich tagged everything he produced…….

For Sami

Sami with her ‚ÄúBest Buddy‚ÄĚ, Chloe were featured in the Bright Lights of Times Square in New York City on September 21, 2013.

Sami and Chloe on the JumboTron

Sami and Chloe on the JumboTron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

 

(originally posted in September 2013)

Sub-minimum; another view

money

I just received a letter from the agency that DC “works” for. To paraphrase; there are new federal rules that will impose limits on people earning less than minimum wage. The clients that are already earning sub-minimum can continue to do so, but they will be required to receive “career counseling” annually. Basically, they will no longer be able to accept new clients at sub-minimum.

I know that there is cheering and celebration going on after reading the paragraph above but I ask that you take a minute to read another side to this issue, because there are two sides to this. If your child is not an adult and out of school, the reality of the “other side” for many may not be something you might¬†be thinking about right now.

I agree that EVERYONE is entitled to be paid minimum wage, EVERYONE! The reality is that some of our children will never be able to work at Walmart, Target or hold a “regular” job. Should they earn minimum wage if they do not hold a regular job? Absolutely! Do I think my child deserves minimum wage? Absolutely again, but unfortunately the funding is not there to support it.

When DC was young and in school, I had no idea how any of this worked. I did not understand agencies or Group Supported Employment at all. I would have had the same knee-jerk reaction to him working at subminimum wage. I would have envisioned sweat shops and whatever other horrors that you might be envisioning right now.

My son works for a non profit agency – Group Supported Employment. He works in their greenhouse which is open to the public. He has staff supporting him all day, everyday. He earns less than minimum wage.

DC is 25 and will never be able to work without support – a good amount of support. The agency that provides his work program is funded by the state. Funding is cut each and every year – each and every year. We can all scream and yell that these programs need more funding, but the reality is that funding for programs for the disabled is cut every year. If his agency is made to pay their clients minimum wage, they could only afford to keep 6 of the 12 clients working in the greenhouse. Where would that leave my son and others like him? He has the right to feel productive. He has the right to do something meaningful with his time every day. Where would that leave him? Sitting home all day or in a day program (like a day care)? He loves his job. He likes to go to work every day. Basically what this letter is saying is that they will no longer be able to accept ANY client at subminimum, which in reality means they will not be able to accept ANY new clients at all – at least in their work programs. So where will all of the students leaving the school system go if they are not able to work at a regular job out in the community?

I do believe that agencies holding a below minimum certificate should be monitored closely, but to do away with them blindly is doing a disservice to those that are not able to hold a regular job.

This agency also supports and trains clients who are capable of going out and working in Walmart, etc. Those clients, after they are trained DO make minimum wage or more because they are paid directly by the company that hires them Рwhile still getting support when needed and at times, transportation through the agency.

If your child is lucky enough to be able to work without support out in the community, that is great! If not, I hope that in the future these agencies are able to receive the funding and support that they need, because all of our children deserve that. Until then, please do not take away their opportunity to have a job like everyone else and benefit from the interaction with the public, while still having the support of staff to help them throughout their day.

I am in no way advocating for anyone to make less than minimum wage, I am saying that right now, this is the reality for my child. He is working like everyone else. He is in a place with staff, he is safe and he is being looked after.

For those of you that may be envisioning the “sweat shop” scenario; the “clients” attend the program for 6 hours per day. They do as much work as they are capable of doing. They are not forced to work. They are not doing hard labor or strapped to a chair to meet a quota. They are learning, they are socializing they are out in the community and making contact with the public. They are surrounded by and supported by agency staff. These “businesses” are created for the soul purpose of providing “employment” for their clients. They are not booming businesses and most of them are not profitable. Even though they are open to the public, they are providing a service to our kids, more than to the public (I can only speak of the agencies in our area, but I imagine that it is about the same in most agencies).

While the states continue to cut the funding of programs for people with disabilities, the Federal government in turn expects these already struggling agencies to now pay minimum wage. They are required to maintain a certain level and staff to client ratio, but when the funding disappears, the level of staff still must me maintained.

Think for a minute about where you think your child will be after he/she finishes school. Will he/she be able to go out and get a job and work without support? If the answer is no, or maybe not, then think about just what they will be doing instead. Will they stay home all day? Enter a day program/daycare? What do you think they would want to be doing? Would they like to say they have a job like everyone else around them?

As much as DC lives in the present and “what comes next” is not what is in his head most of the time, he does know that Mom is an adult and has a job. He knows that Doug has a job. He knows his friends have jobs. He knows that most adults have jobs. He knows that he is an adult. He likes that he goes to work. He likes that he has a job. But, unfortunately the government would rather see a large portion of this population sitting around at home or attending day/recreation programs than do something that might make them feel productive…. to have a job like everyone else.

I think there’s a form for that…

IMG_3636

Last week was DC’s 6 month review IP (no “E”, he is out of the school system) meeting. There are required reports that I have to fill out after each and every IP and review meeting¬† (partially because DC has afternoon staff until I come home from work). ¬†Every report says just about the same thing, but still, I have to write paragraphs upon paragraphs of the same thing each time. Then, as I’ve written about before, there are the annual reports¬†that seem to all come along all¬†at the same time. Right before¬†this IP meeting, I received a new report in the mail – A review to make sure that DC is still disabled.

The questions do not seem to apply to him at all. They seem to apply to a person who is on SSDI – Disability (someone who was once out in the workforce and now can not work due to an injury or an illness). I do not know how to answer any of these questions because they really do not pertain to him at all.

I was told that even though this does not have anything to do with him and it is for a type of disability benefit that he does not even receive, I still do have to complete the form and return it.

I was also informed that no, I could not just write across the page with a black sharpie “HE HAS AUTISM – IT DOES NOT GO AWAY!”

So off I go, to try to fill out another form that has nothing to do with my child, to prove that he still has autism for a benefit that he does not receive and does not qualify for (while¬†waiting for the internet repair guy….. again).

While I do that, you all can feel free to read a post from 3 years ago (before I developed that aversion to opening my mail) about the very same subject; forms and inefficiency.

Does everything really need to be this difficult?

Please Note: The following is a rant, plain and simple; a rant, a vent, whatever you would like to call it. There is no moral to the story, no happy ending, no ‚ÄúAh Ha‚ÄĚ moment, no conclusions to be drawn (actually there are many conclusions to be drawn, but we won‚Äôt say them out loud) ‚Äď just a plain and simple ‚ÄúI‚Äôve had it‚ÄĚ kind of rant.

For those of you who don‚Äôt have a child with special needs or have young children and haven‚Äôt had to think about the ‚Äúadult‚ÄĚ side of things, here‚Äôs how it works. I don‚Äôt know if it‚Äôs the same in every state, but this is the way it goes here.

When your child reaches the age of 18, depending on the severity of the disability (can he/she make decisions for themselves)  the parent is required to apply for guardianship of their own child otherwise they will not have the ability to make decisions for that child. The state views them as adults, period, and this means they should be able to make their own decisions, medically, financially, etc. (Paperwork, Probate hearing)

Due to budget cuts right around the time DC was to about turn 18, anyone not covered under Title 19, lost their case worker through Department of Developmental Services. DDS is where the funding comes from for their work/day programs after they leave the school system at 21.

This is the time in our children’s lives when you really need to have a case worker. This is when you have to begin looking for a program for them when they leave school.

Before you can apply for Title 19, you first have to apply for (SSI; not SSDI) Social Security (tons of paper work).

After you apply for Social Security, you can begin the application process for Title 19. I am fortunate that my case worker, Ruthie, at the time, was there to help with this. She came to my house and my friend who has a son the same age as DC, came over and we all did the paperwork together. If not for her, I would still be sitting in the same place trying to figure it all out.

Now we’re done, right? Wrong!

Every year I have to fill out the forms for Guardianship (when they come, sometimes they don‚Äôt) again ‚Äď just to be sure DC is still disabled. Not a big deal, just annoying. But seriously, he has autism, it doesn‚Äôt go away.

There is an annual report for Social Security as well as an audit or two during the year ‚Äújust because‚ÄĚ. And‚Ķ.. now that he is in a work program and makes a tiny bit of money, I have to remember to call in during and only during the first 6 days of the month to report his wages for the previous month¬†to Social Security, so they can reduce his monthly payment appropriately.

Also once a year we receive the annual Title 19 redetermination, which is basically as much paperwork as the original application. I’m not complaining, I can live with all of this, but it is a LOT of paperwork!

Complaining begins here:

Now, I may not look like the most organized person in the world, but I do get all of these things done, on time, always!

DC‚Äôs redetermination was due on July 20. On July 16th I mailed a giant package with the application, the year‚Äôs worth of check stubs, his last bank statement and insurance cards ‚Äď everything they asked for in the instructions. This was the fist time filling out a redetermination since he had begun working.

Done! PHEW!

Wrong again!

On Monday, August 26th I received a letter from DSS that his benefits had been discontinued because I did not complete and return his redetermination! There was a form included so I could request a hearing. This form had to be completed and returned by August 30th – in four days!

‚ÄúCalm‚ÄĚ was never and will never be a word used to describe me, so the next morning a dragged all of my ‚Äúbooks‚ÄĚ to work to re-copy all 43 pages of his redetermination, because at this point I can‚Äôt think about anything else.

First, I decided to try to call the number (silly, yes I know). There was really no menu item that described this situation and no way to talk to a person, so I moved on to faxing the hearing notice and the copies of the redetermination to the number provided. The fax was cutting out and disconnecting and after I don’t know how many attempts, I gave up trying to fax it all.

Knowing this was going to take more than a fax at this point, I took my lunch break at 9am so I could copy all of these forms, check stubs, insurance cards and bank statements. I decided I would mail one copy to the local office and the other to the address that was on the hearing notice. Two more giant packages in the mail ‚Äď Done!

I was not confident that either of these packages¬† would ever be seen by anyone, as they never received the original and having only 3 days now to request a hearing, I found different phone # in all of my 3 ring binder records and tried again to call. Fortunately, I was able to put the call on speaker and do some work while I waited otherwise I‚Äôd be putting in for vacation time to finish all of this! Unfortunately, all of my co-workers had to listen to ‚ÄúYour wait time is‚Ķ. more than 20 minutes‚ÄĚ over and over again.

An HOUR and 9 MINUTES later (just a tad more than 20 minutes), an actual person picked up. I explained the situation as calmly as I could.

Her reply was: “Oh, we’ve put a new system into place where all the redeterminations go first to our scanning facility and are in-putted into our system for us to work on. Because the system has been up and down and they are very backed up, we probably do have your original redetermination and we have extended everyone’s deadline to November 20th. His benefits have not been cancelled.

Seriously? It may have been more effective to put THAT in the letter instead of telling me his benefits were cancelled and I only had 4 days to do something about it!

Those that know me can imagine where the conversation went from there, so I will spare all of you the details.

End result, she gave me her fax # and I faxed another 43 pages directly to her.  She did explain that she is not the person that would be working on my son’s case, but I wanted them to go to SOMEBODY.

So at this point, there are 3 packages of my son’s information floating around somewhere and one more in the hands of this person who has nothing to do with my son’s case.

She also informed me (after receiving 43 pages) that they really only need the last 4 pay stubs. Hmmmm….. Maybe the redetermination instructions could say that!

So….

  • They lost his original packet (but maybe not, we may never know)
  • You can‚Äôt talk to a person at the number they provide.
  • They mailed letters to clients telling them their benefits were cancelled. (The person I spoke with said they received 1500 calls that morning)
  • They extended the deadline without bothering to tell anyone (This would have been something to send a letter about ‚Äďit may have gone a long way to reduce the amount of calls they received. ¬†And really, nobody at DSS found it odd that 1500 cases were being cancelled at the same time, due to non-completion of their redeterminations? – Somebody had to MAIL all of these letters!)
  • They sent a hearing notice to return by fax within 4 days with a fax number that clearly doesn‚Äôt work.
  • And I still don‚Äôt know if anybody that actually works on his case has his forms at this point.

.

I feel like there was nothing accomplished here and there was an enormous amount of wasted time on both sides.

I suppose I will be in the dark until I get my notice in November.

That’s the way it should be-eeee

 

grease 153IMG_3611A repost of an event from two years ago, in honor of my friends that always come through, put up with and go along with not only attending these events but my over the top, out of their comfort zone ideas.

They will not say that they did not have fun!

But really, they are the best!

From February 27, 2014 (Event Date)

“We go together………..”

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

GreaseSR

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and¬†just how much DC and his friends just rise to the occasion and always have a great time together,¬† I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***I am fortunate to have friends that are willing to go all out for something that DC loves so much; we all took a line from that song and dressed appropriately for the Sing-A-Long. He and his friends had a ball and I think after the initial embarrassment, my friends did as well.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Tonya’s house one Sunday afternoon. Tonya being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true ūüôā ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Except this guy - Grease Sing A Long - Beauty School Drop Out

Except this guy – Grease Sing A Long – Beauty School Drop Out

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

 

 

The Theater's Facebook Page

The Theater’s Facebook Page

The Theater's Facebook Page

The Theater’s Facebook Page

 

 

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings

These Three

Best BuddiesThese Three…. they are truly amazing. As their parents, my friends and I know this. We know the progress they have all made.¬† Sometimes though in dealing with the day-to-day, we do not always remember¬†the journey¬†until someone¬†who has not seen them in quite a while points it out.

We lived it all but we tend to concentrate on the here and now and the future Рhow we got here is not always uppermost in our minds. We deal with today.

Last week we ran into our kids’ Special Olympics swimming coach at a Best Buddies Christmas Party. She was there with another friend of ours. She has recently moved out-of-state so she was filling us in on what she has been up to since her move. She was also their volleyball and golf coach for many years as well so she has been a part of our kids’ lives for quite a long time – since they were very young.

 

As she was watching our kids at the party, she commented on just how much progress they had made over the years.¬†DC’s friends stories are not mine to tell, but her comments about DC made me sit back and really think about just¬†how far he (and his friends) have come. As she watched him socialize in this crowded room she said “Who would have ever thought that he would be able to sit in this room¬†and tolerate the crowd and the noise?”¬†¬†She was right;¬†attending this activity¬†would not have been a pretty sight back then. Never mind the noise, he would have never been so social with anyone of his own age or anyone but me for that matter. Then there were¬†the times¬†when I really should have just¬†thrown in the towel and¬†not taken him to practice at all. Now-a-days we can pretty much go anywhere with out too much of an¬†issue.

She knew us and she knew our kids inside out. She always went out of her way to make the process as easy as possible for us and most importantly, for our kids. Special Olympics lost a fantastic coach, when they lost her due to her work and school commitments.

SoGolfSoVolleyball

 

These Three have been through a lot both separately and together. We have all hit some potholes along the way; some deeper than others, but for the most part we have traveled this road together. It is nice to sit back and remember this very long journey that they have taken with each other. They have grown into amazing young adults and yes, we know this, but it is always nice to have someone point it out and bring it all back for you.

Although the stories of his friends are not mine to tell,  I will say that I am as proud of them as I am of him. As we live with new and different struggles and challenges, we should take the time to remember just where we all started and all that These Three have accomplished over the years.

There has been so very much.

Sometimes is just takes someone else to help us remember.

And we should remember and we should be proud of all of it.

These Three………….

They are impressive.

They are amazing.

IMG_2649