Social Security, Adult Children, Lessons Learned and a Heads Up

denied

If you follow my Facebook page at all, you may have seen the status below. I wrote it out of aggravation but mostly because it was something that I unknowingly did (or didn’t do) that I wanted to share it in the hopes of keeping someone from making the same mistake.

If you did read the status earlier, do not stop here. There is more to the story and it only gets worse, so please read on…

Before I get to that I want to say that I always did everything for DC ahead of time. I never waited until the last minute for anything. I wanted everything in place for the time when I was no longer around to look after him. When you are a single parent of a child with no siblings and you begin to get older, this moves to the forefront of your mind. If you have followed this blog for any length of time, you know that this something that completely occupies my mind.

Here is the beginning of the story. The account in question as it turns out, had a cash out value of $2600.00. Owning the  account in question was technically my fault, not for lack of doing my due diligence but more for the lack of not receiving the correct information from people who were supposed to know. But really, even if this was something that I had not checked into or something that I had forgotten about, this was a mistake – a plain and simple mistake.

We had our annual Social Security assessment the other day.
 I may be the most unorganized person in the world, but not when it comes to my child. I go out of my way to make sure everything is done on time and properly. 12 years ago we had the paperwork drawn up for his “Special Needs” Trust – that will be funded with a “second to die” policy. I made sure NOTHING was in his name. I made sure that everyone knew not to buy him savings bonds or leave money to him in their will. When DC turned 18, we had to apply for SS in order to apply for Title 19, in order to keep our DDS (Department of Developmental Services) caseworker and DDS funding for his work program and for future placement when I (and his Dad) am gone as he will most likely be living in a group home because there is no one else.

Years ago through my job, I purchased a life insurance policy for myself. It was one of those policies that they offer at a very low premium that never increases even if you leave the employer that you purchased it through. DC was an infant at the time.

They also talked me into a policy for DC. When they first brought it up,  I though it was odd. Why would anyone buy a policy on their child?

 It was explained to me that the benefit of buying it then and at an even smaller premium than my own was that when he turned 18, I could turn it over to him. It would be his policy to do with what he wished. He could cash it out for the cash value or he could keep it as his own life insurance at the same premium. He was an infant at the time so of course I did not know that when he was 18 he would not be able to understand money, hold a regular job, tell time or even understand what a life insurance policy is.

Because he does not understand any of this I never transferred it over to him. The premiums were paid electronically all of these years from my checking account and the premiums were combined with mine and so small that I really just didn’t pay attention any more – I really just forgot about it. I would get a statement once a year, but other than that, it was not anything that was on my mind.  I had at one time planned on closing it since, not having transferred it over to him made it of no benefit to him, but since it was not his account and there was no urgency to close it, I just let it go. I was involved with so much other paperwork at the time, this was the last thing on my mind.

I DID mention this account to anyone and everyone that asked, the attorney who did our trust, and SS when we had our re-determinations. The only reasons I would not have mentioned it every single time were, 1. it didn’t happen to be a question they asked at that particular time or 2. because I had been told that since I did not turn it over to him, he had absolutely no rights to the account. I was the owner, it was not his account.

For some reason during our last re-determination this policy became an issue. Again, as I never turned it over to him, I am the account owner. If he were capable of understanding what a policy is and said “Oh let me cash this out.” he would not be able to do so because I am the owner of the account. No one could do anything with this policy but me. But, because it exists, and he is the insured even though he does not own or will ever benefit from the account and could not access the cash out value or even be given any information about the account due to privacy laws  – I was told that his benefits would be suspended until I could get the account closed, spend the money and prove I had spent it on him. Which is fine, I could do that, but these things are what my nightmares are made of. I am glad this happened while I am alive to fix it, but what if it happened later when it accumulated even more money?

I did just that. I closed the account, spent the money on things that he would be needing anyway. I sent all of the information to the Social Security office and I hoped that because I got the account closed and the money spent before the deadline his benefits would not be interrupted.

Well, I received a letter yesterday with the the results of the review. The good news is that his benefits will not be suspended because I was able to close the account and spend the money.

The bad news?

Because he had over 2000.00 in resources (that could not be withdrawn or accessed by him <I am going to keep saying that>, in an account that was not his and he was not the owner of) we have to pay back 12,000.00 – I’ll spell that out for you – Twelve Thousand Dollars – in benefits that he received between his last re-determination (May 2015) and this current re-determination in September 2016. Because he had 600.00 too much during that time period, he should not have been able to collect Social Security benefits and it has to be paid back.

My choices are – Write a check for 12,000.00 (they want it all in one lump sum, not in payments) or they will deduct 73.00 from his monthly checks. He will be paying this back for 13 years!

Listen, I am one for following the rules – always and for everything – I admit that I can be a little bit obsessive about it at times and I fully admit that this was my fault, an honest mistake. I was not keeping it a secret – if I had, they would not have known about it. I was sure there would be some sort of penalty to pay and being that this was my mistake, I was perfectly willing to pay it to keep his benefits in place so I do not have to worry about him later.

It is unfortunate that this system we have for people with disabilities is set up so these people (our children) are required to live in poverty. It is designed that way.  I understand that in order to maintain this level of poverty recipients  can not have over $2000.00 at any given time. People make mistakes, honest mistakes. We as parents should not have to live in fear that we may have over-looked something or that a family member might leave our children money against our wishes and without our knowledge, make them a beneficiary on a life insurance policy or in this case, have an account that was supposed to be fine because HE WAS NOT THE OWNER and had no rights to the account – and so many other scenarios that I can’t even come up with now that are out of our control (Give me a few days to obsess about what else can happen and I am sure I can add to that list of “what if’s”). I agree that there should be consequences and penalties for errors. I don’t believe that my child who was not responsible for any of this should be made to pay back 12K in Social Security benefits for the next 13 years. I would have been perfectly willing to transfer that $2600.00 from the account (that he had no rights to and could not access) directly to Social Security.

Although I do believe in following the rules and owning up to my mistakes, twelve thousand dollars for a 600.00 dollar mistake seems a bit extreme.

So the moral to this story is:

If you believe you are being careful and following every rule, you may find out otherwise.

If you’ve done your due diligence and looked into anything that may be a problem, you probably need to look further.

If you have a question about anything you or your child have and even if you are told that it is fine – it may not be fine after all.

I am sure that this will not be the end of the story but I just wanted to share it to possibly save someone else from making the same mistake.

***

My apologies if this is littered with typos or half sentences – anger does not enhance my already poor proofreading skills in the least…   

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Follow Up!

But Wait! There’s More!

There’s Still More (and I was right all along)

Small Battle – Small Victory

From my October/Halloween 2015 Archives and as I discovered this week…. a small victory:

Choosing my battles……..

We went away this weekend to NYC and Sleepy Hollow. We try to take a Halloween Weekend every year to somewhere either “Halloweenish”, Spooky, Historical or where costumes are involved. We will be going to a ComicCon the weekend after Halloween (that counts) so we decided to do just a quick overnight to Sleepy Hollow this weekend. Our usual Halloween destination is Salem MA, but we’ve switched it up the past couple of years mainly due to the fact that Doug is <insert colorful metaphors>  of going to Salem – I, on the other hand, never tire of it.

We had already done a weekend in Sleepy Hollow a couple of years back. We did just about everything there was to do with the exception of the BLAZE. I did not know that in order to do anything in Sleepy Hollow in October, tickets must be purchased on-line ahead of time. Fortunately, once I discovered this and by the skin if my teeth, I was able to get tickets for everything else.

This year we thought ahead and got tickets for the BLAZE early. Since that was all we were going to do in Sleepy Hollow, we decided to first spend the day in New York City (DC’s favorite place), check into our room in Sleepy Hollow and go to the BLAZE at 9:30 PM (the only time available when we purchased the tickets).

I had not been feeling well all week and would have opted to skip the whole thing and stay home on the couch, but DC had already been told about the trip and he already added it to the calendar so that meant it was engraved in stone.

Knowing his propensity to over-pack DVD’s for the sole purpose of stacking them next to him while he watches YouTube on his computer, and knowing full well there would be a visit to a bookstore at some point during the trip, I told him that he could only bring 5 DVD’s and 2 books. I said it more than once. I just didn’t want to have to keep track of a bunch of unnecessary stuff and try to carry a bunch of unnecessary stuff. I just wanted to pack light and get this over with. (I did forget my jacket in the room, so I really couldn’t manage to keep track of the necessary stuff – turns out, they don’t ship forgotten things. We have to go back and get it).

5 DVD’s and 2 books.

“Okay Mom!”

He went about packing his laptop, his DVD’s, his books, and pens to edit said books.

“DC, how many DVD’s did you pack?”

“5 DVD’s – 2 books”

“Are you sure?”

“Yes, I promise”

When I went to grab the charger for his phone, I found that he already packed that as well. I found THAT to be a bit impressive. He is usually only concerned with his books, DVD’s and laptop.

I told him how proud I was that he remembered his charger by himself. He took that compliment and added that  “I am proud of the 5 DVD’s and 2 books” – he was just pointing out the fact that I forgot to tell him in that sentence that I was proud that he followed the rules.

We spent the day in New York City. We visited all of his favorite places and headed out for Sleepy Hollow about 3 pm. All I wanted to do was sleep for a little while before dinner and the Blaze. In the room I was just telling Doug what a great job DC did packing only what I told him to and remembering his charger, when I noticed a good 15 to 20 DVD’s sitting next to his laptop. Now, this has been an issue before and the celebration over him being sneaky and figuring out that he could just hide them is long over with. I do have to give him props for figuring out if he packed his own charger there would be no reason for me to go into his backpack (a new level of sneakiness), but like Tonya in ‘All the …..small things’, I have to be the mother, even though I knew full well what would be in store for me after reprimanding him.

As soon as he realized that I noticed just how many DVD’s he had with him, it started…..

“I am sorry Mom. I will never lie again!”

“I am so sorry, Mother!”

DC only gets to use his laptop and DVDs on the weekends. That has been the rule for many years. Losing his computer privileges is the only thing that EVER makes any kind of impression on him.

“DC, you lied to me again. I told you the last time you lied to me that you only had one more chance before your lost your computer for the weekend. This was your last chance, so no computer for the weekend.”

(Seriously, as punishments go, this is really not much of one. It was all ready Saturday night. We would be going out soon and we were leaving the hotel the next morning, but this did not matter to him).

Now, 2 inches from my face……

“I promise to never tell a lie again”

“Mom, I’m sorry!” – those of you that know DC, you know that:

He is sorry for absolutely everything! Partially he believes “I’m sorry” will get him out of anything.  Like a typical man, he thinks that saying “I’m sorry” even if he doesn’t know what he’s sorry about will get him out of anything or at least get me to stop talking. If he really wants to bring it home, he goes to: “I’m ‘ter-bly’  sorry” or “I am soooooo sorry”. He’ll even throw in a “Can you ever forgive me?” (movie line), if he thinks it’s necessary.

He says he’s sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he’s covered, he already said he was sorry. Or he’ll say he’s sorry when he’s about to do something he knows he’s not supposed to do. He’s covered, he said he was sorry!

I heard this and variations of this throughout the evening all recited 2 inches from my face. I won’t go into the amount of times I explained to him that just because he promises not to do it again does not get him out of the punishment he was already given. I understood that he was sorry and I was proud of him for being sorry…… believe me, it was covered and covered.

*****

We did enjoy the Blaze –

Various 285

but every few minutes he reverted back into his “I’m sorry” campaign.

Back in the room, he changed his tactic.

“Mom, thank you for much for the trip”

“Mom, thank you so much for the dolls”

“Mom, you are my queen.”

“I love you Mademoiselle”

“I am being so good!”

I did explain to him as I always do that I never would think or say that he was “bad” – he is not bad; he just did something wrong – on purpose.

We went to sleep (remember, I am still not feeling well). 4 or 5 times during the night, I woke up to find this boy 3 inches from my face telling me that he has “Good Behavior”  and “I promise never to lie again”

There are times when DC really does not understand what he has done wrong and I will speak with him and try to get him to understand – this was not one of those times. He knew exactly what he was doing while he was doing it. I can not just let everything go, even though at this point I really wanted to get some sleep. If I gave in now he’d know that I would give in the next time.

Morning came.

He hadn’t packed any paper to bring on the trip so he resorted to writing me apology notes on the inside of his books.

Various 332

As many times as he brought it up, there was an explanation for him. I love him, I always love him. I was not happy with the choice that he made to lie and sneak but I am not angry at him. If he does not do it again he would not lose his computer again.

We left the hotel, looked around Sleepy Hollow a bit, had lunch and headed home.

Various 310Various 304

Various 308

Monday was a holiday but the weekend was over, which meant his punishment was over. It also meant that he could not use his computer anyway because the weekend was over. He double checked the end of punishment fact with me and was extremely happy to hear that he was correct in his assumption.  We were home all day on Monday and he was quite happy not to use his computer, because Monday is not “the weekend”. But he knew it was ON for the following Friday and I never heard another word about it.

(He understands the word “punishment” from Full House. I originally never used that word – that was all him)

Update October 2016:

We just returned from a non-Halloween themed trip to Nova Scotia and New Brunswick. I am happy to report that DC, with out being reminded more than once, did stick to the “5 DVD” rule.

And as a Mom who just loves Halloween, I was very proud of his choices:

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That’s my boy!

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#TravelingWithDC – New Brunswick and Nova Scotia

You are now entering #Haven – A place to leave your ‘troubles’ behind

“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 “Welcome to Holland” 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.

“In my heart the event will always be “For Sami Love Daddy”

– Which is how Rich tagged everything he produced…….

For Sami

Sami with her “Best Buddy”, 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)

Good thing I did not return that “Jim Dear” hat…

The second in my Halloween 2015 re-run posts. We know that he had asked to be “Jim Dear” from Lady and the Tramp for years and this was the year I found all of those wonderful steam punk suits that would do very well as a Jim Dear costume and I already had the hat. I was excited thinking about how excited he would be and…… he said no!

This follow-up post was all about the way he decided, on his own to make use of the hat.

“No Jim Dear”…. (shhhh… it just may be)

IMG_1282

In an earlier post I wrote about the “Jim Dear” derby hat and how after many years of asking to be “Jim Dear” for Halloween, he decided against it – after I had purchased the hat and picked out a few steampunk suit options to surprise him.

Last night we attended the 50th Anniversary Gala for the summer camp that DC attends. DC loves to wear a suit so he was all for it.
After running up the stairs a good 3 to 4 times to “look in the mirror” and admire his handsome self – he came down wearing the “Jim Dear” Hat!

hmmmm…

He ran back up to look in the mirror a few more times and returned with a moustache request. Much like his beloved Band-Aids, stick-on moustaches are another staple in our household.

I tried to talk him out of it but he insisted.

hmmmmm..

All-righty then, the moustache, it is!  I was hoping that he would decide to take it off before we arrived at the party.

He did not.

IMG_1310He wore it a good long time. He received many compliments on his moustache and was very happy with the attention. When we were still at home, he would not tell me who he was supposed to be but as soon as someone at the party asked him if his name was Charlie (Chaplin);  he promptly corrected them “No, Jim Dear!”

with Grandma

with Grandma

He did eventually take it off when it started to get itchy more than halfway through the event.

It is October.

He wore the hat.

He added the moustache.

Jim Dear?……………..Yes, this year.

I guess it just had to be his idea.

Good enough for me.

I will take it!

Jump Magic, Jump!

I have tried for many years to get DC to watch the movie Labyrinth. I always loved it and I just thought that he would too.

Of course he would! How could he not just love it as much as I do?

He didn’t…..

Not one bit….

This has worked a few times over the years… Shrek, not being Disney, was one that he absolutely refused to watch but now he has every sequel and every book – he chose Shrek as his costume a few years ago as well. It works sometimes, but it just was not working with Labyrinth.

He was never a big fan of the the Muppets until the movie with Amy Adams and Jason Sigel came along, but when David Bowie passed away, I decided I would give it one more try.

He watched it – the whole thing. He didn’t fall asleep – his usual escape when I try to get him to watch something that I like – he watched and seemed interested.

I did not realize right away how much he liked it until days later when he was on his iPad trying to search for “Lay-miff”. I had no idea what he was looking/asking for – usually I can get him to spell or sign what I don’t understand but he wouldn’t spell it for me and he was getting frustrated that I didn’t know. This usually leads to him giving up and saying “Nothing wrong” and then I never figure out what he was trying to tell me. So I do really try hard to figure it out before he gets to that point.

“Lay-miff”

DC, can you spell it?

“Lay-miff! Baby! It’s not fair!”

(So I should have gotten the “It’s not fair”, but thought he was telling me it wasn’t fair that I couldn’t understand him)

“Sarah! Baby, Lay-miff!”

“MAGIC JUMP!!!!”

Got it! Finally……

He’s seen it many times since and of course found quite a few YouTube clips to watch over and over and over again, boosting someone’s YouTube numbers to viral status I’m sure.

When DC and I picked out his costumes two weeks ago for this, my favorite holiday, I was a little bit disappointed. It was too easy, there were none of the regular “Only in DC’s head” costume choices that..

But as I always say, this is not about me. Not all about me, anyway.

There are the individual costumes for the parties he will attend, but there is also the “annual themed costume” for Halloween night.

His first choice was a pretty funny Tooth Fairy with me as the giant tooth – giant being the operative word as it has been a rough year and a half which led to me gaining a ridiculous amount of weight.  Last year he was The Doctor and I was a giant TARDIS. The year before we were Lizard/Spock, as in “Rock, Paper, Scissors” (no, nobody got it, but I cracked myself up as giant Spock). I never thought there would come a time when I would long for the days when I was only “Slightly large – Inigo Montoya” to his Fezzik or “Not so large – Dr. Horrible” to his Captain Hammer.

Memories…sigh…..

The tooth fairy idea came of course from the movie Tooth Fairy with The Rock as the tooth fairy. Right before we placed the order, he changed his mind and decided that he wanted to be Santa. This of course meant that I would be the giant elf. I liked the tooth fairy/tooth idea more, but Santa was his final decision so that was that.

Last week while making a scheduled and promised visit to the book store, I noticed a Spirit Halloween store had opened up right next door. Our costumes had already been ordered and delivered, but we went in – because, well…. I had to. It was there.

As we were walking around looking at all of the costumes and decorations, we happened upon a costume that made both of us gasp at the same time – The Goblin King from Labyrinth! Why hadn’t I thought of that before? There was almost no discussion – he wanted it! There was only one and it just barely fit him, but I think I can do something to loosen it up a bit.

This of course means I will have to be the giant baby, Toby – so there will ultimately be a little bit (very little – it should be an easy one) of building a costume that does not exist and that is fine. I am just happy that I am no longer required to be the giant elf.

No worries, though. I am sure neither Santa or Giant Elf will go to waste…

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(Coincidentally, I picked this up for DC the day before the costume store visit at a Comic-Con I attended with my brother and at the time, the costume idea, just never entered my mind)

 

 

 

 

 

 

After years of asking, he changes his mind….

So….. it is almost October and October means Halloween, If you have not been here long, you may not understand just how much Halloween means to us here in the Taking it a Step at a Time house. Never fear…..you will soon learn.

DC has chosen his costumes (yes, plural – he has one for every party because, just one would be very boring) and I have to say that I was a little disappointed by his choices this season – but…… this is not about me. It is, but we will pretend that it is not….

October is also the time for Halloween reruns from the previous year, so to kick the month off, here is the first Halloween themed post from last year….

“Jim Dear?” – Not this year….

 

hat

So Halloween is upon us.  It is already September and we are a little bit behind schedule this year. We usually have our costumes chosen and purchased in August. We did pick out our “official” Halloween night costumes way back in April or May so we are not 100% behind, but we are still behind. There are plenty of parties to attend for which DC must have different costumes (gotta love this boy!).

Okay maybe we like Halloween just a little teeny tiny bit -but we’re not obsessed or anything….

Last week we discussed what party costumes he wanted to wear this ‘Holiday’ season. This is always a little bit of a challenge.  At times the costumes that DC requests are just people that he likes who happen to be wearing regular everyday clothing, or it is an obscure character that nobody knows but him (he might get that from me).  Most of the time there is no such costume available so my mission is to come up with something or make up something that at least in his mind, makes the point.

The one costume that continues to make the list from the time DC was very young is “Jim Dear” from Lady and the Tramp.

(sigh….)  A man in a suit…..

Not my idea of a Halloween costume, but – this is not about me….

……not ALL about be, anyway.

 But, this year I was prepared.

Last October we attended a fundraiser/gala with Tony Orlando. The gala had a 1940’s theme. It was not a costume party, it was a theme, but in keeping with DC’s love of costumes, I bought him a 40’s style hat to wear with his suit. There was also the added incentive to get him excited about going to the event of calling the hat and suit a costume.  While I was shopping for said hat, I came across a derby style hat that closely resembles the hat that “Jim Dear” wears. I purchased that to save for this year.

While looking for items to make a “Timekeeper – Spy Kids – All The Time in the World” (yes, we must use the proper and entire title) costume last year I came across a tremendous amount of steampunk costumes.  I discovered them too late for last years’ costumes (they had already been chosen and we can’t mess around with the costume line-up)  but I knew that they would be a great option for this year.

2015 would finally be the year of “Jim Dear”.

I had everything ready when we sat down to choose his costumes. I had a choice of two suits up on the screen, I had a few options for “Lady” stuffed animals for him to carry. I even found a “Tramp”…. and I had the hat.  I was excited because I knew that he would be so excited when he saw that one of his costumes would be “Jim Dear”. I saved the surprise costume for last.

He chose a Disney Character – surprise! He also chose a character from a television show – whoo hoo! – a current television show – bigger whoo hoo! When we had only one more to pick, I started to wonder why he hadn’t yet brought up “Jim Dear”. I thought he may have been so overwhelmed by looking at all of the other costumes that it had just slipped his mind, so I opened up the windows that I had saved, expecting him to be over the moon….

He said “No! No, Jim Dear!”

What ?!?  

“No, Jim Dear!”

I asked him again just to be sure he was not confused, I showed him the hat that I already bought. I showed him the photos of the suits and stuffed animals – “NO! Jim Dear!”

sigh…….

Anyone in need of a black derby hat complete with decorative feather?

– in great condition – never been worn….

 

 

Everything is related …. Camp “Special Days”

special-days

DC’s summer camp sports a calendar chock full of “special days” or themed days. Every single day is some sort of theme, if not a theme then a cookout or a group day (meaning each group gets a special day during the camping season). Every day on the calendar is filled with something.

DC, being DC loves themes and loves nothing more than wearing a costume. Not all days require a costume, but he loves going to camp wearing something specifically for that day.

Most of the Special Days are easy for him to get excited about and relating things, places and activities to his beloved Disney (and other) movies and characters makes it fun for him.

– Everything being related, many times, is the ability to relate one movie or actor to another. This has helped him to be more open to watching something that may not be Disney-based. This was not always the case, but now he can go and enjoy a movie with his friends or at an ARC activity without issue……..

Everything being related, oftentimes just explains his love for a particular city, game, song or some of the many other things that he does or says.

Some of the Special Days at Camp are:

  • Pirate Day, which of course he relates to Captain Hook, Captain Jack Sparrow and even the Dread Pirate Roberts.
  • Luau Day – Lilo and Stitch – what else?
  • luau glassesluau day
  • Western Day relates to Toy Story
  • Chief Day complete with a visit from Chief Gotchbagollie, the elusive Chief that lives in the “forest” behind the camp who ventures out of said forest only once a year –  for him relates directly to Tiger Lily in Peter Pan.Chief
  • Super Hero Day – DC has little interest in Super Heroes but he does love his patriotic songs so Captain America always   works in a pinch (but only after he out-grew his Captain Hammer shirt)
  • And of course, the beloved Hat Day which needs no relating. He just loves wearing silly hats.

 

A few years ago the directors felt the need to change things up a bit and added 80’s day and 90’s day (these days have since been combined into one day called “The Battle of the Decades”). Now, I can dress DC up in anything and he would go with it, but I really like him to understand and know what he’s wearing, so these additional days took some thought. He has more fun and gets into it more when he can relate the theme to something else and I wanted to be sure he could.

After giving it some thought, I realized that 80’s day would be relatively easy and better still, easy for DC to relate.

There are only a handful of songs that DC knows and likes from nowhere else but the radio. Almost everything else he likes musically has a connection to Disney, a movie or one of his TV shows. It always surprises me when he tells me to stop changing radio channels so that he can hear a particular song. Even then, most of the time the song is from a movie. The few that I have not been able to determine the DC connection are:

Fly Away – Lenny Kravitz (I’m going to guess that he likes it because, in his mind it’s about flying)

‘Don’t worry ’bout’ (DC-speak) otherwise known as December – Collective Soul

Light Shine Down – also from Collective Soul

‘Don’t you cry no more’ (DC-speak) otherwise known as Carry On Wayward Son – Kansas

‘Roses on a grave’ (DC-speak) otherwise known as Kissed by a Rose – Seal. I do know this song was in a Batman movie, but he has no interest in Batman and has never seen the movie.

We’re not gonna take it – Twisted Sister

Sister Christian – Night Ranger (I’ll admit that this one is only because I am obnoxious when it comes on the radio and I make him sing it with me).

The reason I am telling you all of this is because DC is definitely my “Broadway Baby” and he has seen quite a few Broadway shows. 99% of the shows we see are DC-related. On Mother’s Day 2012 it was Mom’s choice for a change and I wanted to see Rock of Ages. Doug and I weren’t sure that DC would be able to sit through it. I went on-line to find the song list and was happy to discover that “We’re not gonna take it” and “Sister Christian” were on the list. Also on the list were “We Built This City”, which he loves from “*The Muppets” – Any Way You Want It; **Glee and of course “Don’t Stop Believing” also from Glee but more importantly from Adam Sandler’s “Bed Time Stories”.

All relatable enough for him that he did sit through it and he loved it. He loved it so much that he saw it again for a second time locally with his friend BB and he owns the ***movie version.

I also have to mention that DC wants nothing more than to have long hair. Unfortunately his hair grows out instead of down so being able to wear his Rock of Ages shirt AND a wig to camp……. priceless.

Rock of Ages

80's Day

 

80’s day was a hit that year and the following year. Even though it was 80+ degrees both years, he insisted upon wearing the wig all day long.

Although the concept of ‘decades’ is not something DC understands, he knew he what he was wearing. He did not understand that the wig and the music and oh, I completely forgot – the tattoo arm sleeves were about the 80’s, he just knew that all of was related to a show and songs that he liked.

90’s Day was proving to be more difficult. I could not come up with anything, so I resorted to thinking about the songs he liked. While I was thinking about that and out of the clear blue sky I remembered the day not that long before this when he came running downstairs and through the living room yelling “I’m going to be late for the Smashing Pumpkins concert!”

What?!?!?!?!?!?!

“I am late for the Smashing Pumpkins concert!”

When he comes out with something random and odd like that I always have to ask what movie or show it is from, because it always is from a movie or a show.

“Sabrina”

Okay, I got it. Sabrina the Teenage Witch. (He has the entire series; he loves witches because they relate to Halloween and if you’ve read this blog for any length of time, you know that in this house we LOVE Halloween). There is an episode entirely devoted to Sabrina trying to go to a Smashing Pumpkins concert. Does he understand who or what Smashing Pumpkins are? I do not think so. I am sure he is imagining people actually smashing pumpkins. I did try to explain that they are a band and that Sabrina wanted to go to see this band play in concert. Did/Does he “get” that? I am not sure. To this day any time any Smashing Pumpkins song comes on the radio, I say “DC, it’s Smashing Pumpkins singing” to which he always replies “Smashing Pumpkins Concert” because that is the way it must always be said.

For 90’s day… it was something – if only relatable to Sabrina, it was something. Thanks to Amazon, I was able to find a Smashing Pumpkins shirt and that was good enough for him.

Smashing Pumpkins Concert

 

“Look DC, I got you a Smashing Pumpkins shirt for 90’s Day at camp”

DC: “Smashing Pumpkins Concert”

“All-righty then…”

New Camp Special Days? We got this….

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More “relatables”:

“*The Muppets” – With the exception of Christmas Eve on Sesame Street, the Muppet version of the Frog Prince and the song “Sir Robin the Brave”, DC was never a fan of Sesame Street or the Muppets in general. The one and only reason he is now the Muppets biggest fan is Amy Adams. Amy Adams was in Enchanted (and any princess is related to Disney) and he will now watch anything and everything she is in, including non-Muppet or non-Princess movies like “Leap Year” and “Trouble with the Curve”.

**Glee – Music and dancing always being a plus, he then realized that Mr. Schuester was Sir Harry in “Once Upon a Mattress” – one of his favorites. In addition, Kristin Chenoweth from more of his favorites, “The Music Man” and “Wicked” made quite a few guest appearances. Then of course there was Neil Patrick Harris in a guest spot that tied it all up for him. Neil Patrick Harris being “Dr. Horrible” and Barney from “How I Met Your Mother”.

I was thrilled when he started asking to watch “How I Met Your Mother” because almost all of the television series he does like to watch, like Full House, Sabrina and The Brady Bunch have been off the air for many years. It is nice when he discovers something contemporary that his friends might also be watching. How I Met Your Mother was a windfall of relatables for him. He got there originally because Lilly was Willow on Buffy, but then he discovered Marshall was Garry in The Muppets and of course Barney who we have already covered.

Speaking of Dr. Horrible: Dr. Horrible and Neil Patrick Harris not only brought him to HIMYM but it also brought him to The Big Bang Theory by way of the character “Moist” aka Howard on Big Bang. Next he noticed Penny, who was in his favorite Easter Movie, “Hop” and holding tight to that witch theme; Billie on “Charmed”. The few appearances by Wil Wheaton did not hurt at all. Wil along with Felicia Day (running neck and neck with Amy Adams as the love of his life) appeared in ‘Erica’ (DC-Speak – “Eureka”) and of course played Penny in “Dr. Horrible”.

Eureka: It is just a great show. He loves it. I love it more. For DC, there was Felicia and Wil and they had him interested enough to start watching episodes from the seasons before they appeared. He still watches the animated Christmas Special year-round, with the voice of the sheriff’s car being none other than Sheldon from Big Bang.

One big giant circle of relatability for DC and in all honesty, this is the way he comes to many things in his life, not just TV shows or Special Days at Camp. Relating things for him has helped him adjust and made him more open to a variety of new things.

*****

***movie version – Anyone that knows me well, knows very well that I would never spend money on anything that Tom Cruise is in. I knew he wanted the Rock of Ages movie and I also knew that I would not be buying it for him. He got it only because I added it to his “What does DC want for Christmas” list and one of my friends bought it for him.

 

 

 

 

 

 

 

 

 

 

 

Star Trek Missions NY (and a little bit Reading Rainbow)

star-trek-mission-ny

In honor of Star Trek (The Original Series) 50th anniversary I present Our Trip to Star Trek Missions New York….

I just happened to actually read my email one day in mid-August and I saw the announcement for Star Trek Mission NY on Labor Day weekend. I bought the tickets almost immediately. I have been a fan of Star Trek from the time the very first episode aired back in 1966 – <sarcasm font> I was just an infant, not even born, yet really <end sarcasm font>, so needless to say, I was excited.

The first obstacle for DC would be going to New York City (his favorite place) without visiting “DC’s New York City”; meaning the big Barnes and Noble, the Disney Store, the Eloise Store in the Plaza, Hershey Store, Hard Rock Café and ‘Citral’ Park (Central Park). I began explaining this to him weeks beforehand. We also promised him that we would go back another day very soon to spend the day doing his favorite things. As much as he seems to understand when I am prepping him for something, I never really know if he does until I get his reaction when it happens. I have to say that I did expect some kind of reaction to not going out into the city when we arrived, but the promise of going back another day seemed to be good enough. – Progress!

DC knows Star Trek TOS because he has me for a mother, of course. One of his first “signs” before he could speak was the “Live Long and Prosper” sign. Of course he did not know it meant LLAP, it was just his sign for Star Trek in general.

I have seen all of the incarnations of Star Trek over the years with the exception of Enterprise so I knew most of the guests that would be in attendance. DC? Not so much. We have been watching the original series on Netflix in the mornings before work  and about a month ago we began alternating between that and Deep Space 9, so I was hopeful he would recognize a few others.

img_6449We got there not very long after the doors opened and I was amazed that it was not very crowded at all. I don’t know if it was because it was the very first one, the holiday weekend or if this was just the crowd they were expecting; in any case it worked out perfectly for us.

The first thing DC came upon was a Tribble and he had to have it. When he found that it made “Tribble” noises, he had to have it even more.

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He got it……..

His normal “Arrival Anxiety” did not rear it’s head as it usually does when we first arrive anywhere. I was a bit surprised but relieved. We walked the show floor and came upon an Enterprise set where one could sit in the Captain’s chair. It was a long line, but he was all for it.

There was also a man off to the side of the set who looked so much like “Scotty” that I had to do a double take. It unnerved me for a second.

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(While in line we were told that there is a replica of the Enterprise in Ticonderoga, NY so hmmmm…. I smell a road trip in the near future.)

By the time we finished taking photos of “Captain DC”,  the autograph sessions were starting. DC recognizes Robert

Picardo from the Baltimore Con a few years ago so we headed there first.

For some reason, this is where his anxiety set in. The line was short, very short and as I said the hall was not crowded at all but this was where it hit. He started flapping angrily and making a horrendous noise. He used to make a clucking noise but it has evolved into something unrecognizable lately. In-between the flapping and the extremely loud noises he would stop only to say he was sorry and then start again. I could see that the woman in front of us getting a little bit nervous, but I just kept telling him to do what he had to do to calm down and as long as there was no one around for him to hit with his flapping arms, it was okay. She seemed to relax, I suppose because she saw I wasn’t treating it as a big deal. He did finally relax too. To keep him relaxed, I joked that he should not do that when he got to the table because he would scare Robert Picardo. He laughed. Still trying to keep his mind off of his anxiety, I asked him who we were going to look for next.

“Reading Rainbow. I have to find him. I will find him somewhere.”

The anticipation of meeting “Reading Rainbow Man”  (DC-speak) took his mind off of whatever was making him anxious and he was back to his perfectly happy self when he got to the front of the line. He got Robert Picardo’s autograph and we set out on our hunt for Reading Rainbow Man.

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We found “Reading Rainbow Man” (LeVar Burton to the rest of you) rather quickly. In true DC – delayed reaction and pronoun reversing fashion, the very first thing he said to him was “You scared me!”. LeVar, not knowing what was going on said “How did I scare you?”

“Noises”

I then had to explain that in the previous line I told him if he made that much noise he would scare people.  LeVar understood and told him that no, DC had not frightened him. He asked “How are you?”

DC: “Twenty-Five”

Me: He asked how are you, not how old are you.

DC: “Great!”

The conversation continued pretty much like that, with me jumping in to translate when necessary.

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DC had been looking so forward to meeting him and was so very excited when he did that I was kicking myself for not thinking about  saving this meeting until later. I was worried that after meeting LeVar he would not be interested in staying any longer, but he surprised me once again and wanted to move on to the next meeting.

We got to see and meet quite a few people…….

img_6459The only Original Series cast member there that day was Walter Koenig. William Shatner was scheduled to appear on Sunday. DC met him at NY Comic-Con a few years earlier so we weren’t disappointed that we would be missing him this time. Of course, if he happened to have been there we surely would have been in his line too.

There were a good number of TNG cast there as well. We did not get to see all of them, but we saw Levar and Gates McFadden.

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I asked him who he wanted to see next. He looked around toward the Deep Space 9 section and answered “Jake”. I was a little bit impressed with that since he has only been watching for a few weeks and I was not sure how much he was actually paying attention. Of course by the time we got to the front he did not ‘renember’ his name but that was all just a matter of him not understanding the question or that the question was not asked in a way he understood. He will typically give a lot of random answers until he is asked properly – unfortunately one never knows what “properly asking” might be on any given day. There are times when he can answer a question correctly the very first time the question is asked and other days, the question has to be asked in many different ways.

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He saw Quark over in the next line. Quark, not in costume is only the principal from Buffy to DC. His line was a little bit longer than the others so we skipped over to Nana Visitor. DC was his charming self but when she told him her name he really got excited. He was clutching his chest and squealing with the biggest smile on his face. I was not expecting that reaction.

I don’t know about any of you, but most of the time when I take DC to a play, event or something of the sort, I spend more time watching him get excited than I do watching the play or show or whatever is going on. Then I get teary-eyed. That is just what happened here. He just was so thrilled to be talking to her and she was just so cheerful and upbeat with him that I not only got teary-eyed, but I thought I was going to burst out into an all out ugly face cry right there. It was tough trying to keep my composure. When we finished and headed back over to where Doug was holding up the pole he thought something had happened as it was pretty apparent that I was trying to contain myself. When I tried to explain it to him I got all choked up again. Sometimes I just fall apart when I see him so happy – I know, I know, get a grip, woman….

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We walked around a little bit more waiting for the rest of our photo-ops when we came upon an attendee all dressed up in a long flowing gown. DC could hardly control himself. She was talking to people and not paying attention while DC was yelling “Excuse me! Excuse me!”. I had to keep telling him not to touch her dress but he wanted her attention so he tapped her on the shoulder before I could stop him. When she turned around the first thing he said was “Sorry to touch”. She smiled and told him it was all right and he said “Dress Beautiful” (and another squeal). That was all he needed to do; get her attention to tell her that her dress was beautiful. She thanked him and we were off to look at everything else there was to see.

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It is a given that he will always find somewhere to buy a book………

 

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He got to see his beloved Nana again at his DS9 cast photo-op (and Buffy’s ‘teacher’ who we never made it back to in the autograph lines).  I think she may just have earned herself a place on DC’s favorite women list alongside of Felicia Day and Amy Adams.

What a perfect day! Everything went exactly as planned. The whole event was very well organized and of course it helped that it was not very crowded.

We all had a great time!

Well……

Except for this guy….

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Except for this guy Grease photo

Except for this guy Shore Leave Photo

In case anyone might be wondering; the Reading Rainbow theme remains trapped in my head, still.

And, Oh – there were M&M’s

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aaaaaaannnnnnnnd

levar

On Your Marks, Get Set and Take a Bow

5k Labor Day

DC has participated in a variety of Special Olympics programs over the years, but never did I ever imagine he would like running. Yes, I was shocked too. We just gave it a try one year because he was tired of golf (10 years) and volleyball (4 years) because he, not really understanding the games, never advanced past the “skills” levels and that just gets boring. He swam for a good 10 years as well, but the program died off and went away. Skiing, you ask? One year and a half until I thought I’d have a heart attack and pulled him out.

“Done of Skiing” – DC-speak

Running was just something we were going to try. Because DC would rather stay home than do just about anything I always make him at least finish the season just to be sure he really doesn’t like something as opposed to him just not wanting to go out. With a few exceptions, most of the time he ends up enjoying what ever activity I have made him stick out to the end. But running? I never thought it would last. I was so wrong – he’s been running for a good six (or more) years now.

The Labor Day 5K is an event he does every year with the exception of 2015 when his seizures were brand new and me, being me was still too panicked to let him run a race. This 5k is not a Special Olympics event, it is a regular 5K attended by thousands of people as are most of the races his team participates in. The individual team members can pick and choose which races they would like to participate in. This is the race DC almost always runs.

DC is not the fastest runner but certainly far from the slowest. When he puts his mind to it he can run pretty fast, but he doesn’t really understand the competition of it all and really, that is fine with me. As at most races, there are tables set up along the route where people pass the runners water. The runners drink the water while running, but not DC. He stops and leisurely drinks his cup of water and then walks around looking for a garbage can. There are hundreds of cups on the ground because that is what you do when running a race, it is expected. Not DC! He knows that we do not throw garbage on the ground and being that there are no gray areas in DC’s mind, he is just not going to do that. Well, this year he did stop and take his time but he did throw his cup on the ground the first time Doug told him to. There was a gray area and he got past it – Progress.

There are plenty of spectators along the route cheering the runners on. DC upon hearing applause from a large group of spectators and DC being DC, stopped running, took a bow, waved and yelled “Thank-you everyone!” then continued on to the finish line…

Unified 5k

Having to get up at 5:30 am on a holiday, I went on a hunt for coffee as soon as the race started because….coffee. I stood in the Dunkin Donuts line for quite some time. I did not realize how long until I got a text from Doug right when I finally made it to the counter telling me that they were in the home stretch. I got my coffee and headed to the finish line, but I was too late to see him come in.

He did announce “I did it!” when he saw me and also informed me that he won. I wonder if anyone told the race officials because they have him at 2426th out of 2658 runners? We’ll have to see about that.

 

 

The Lights Go Dim in The Chocolate Factory

I saw Willy Wonka and the Chocolate Factory when it first hit the movie theaters in the early 70’s. I think I was about 11 or 12, but even at that age when I was supposed to be way too cool for movies like this –  I loved it. I don’t remember being afraid to admit it either and I loved Gene Wilder.

I remember a few years later going to see Young Frankenstein when it first came out as well. I can still watch that movie and laugh just as hard as I did back then. There were plenty of other movies, but those were the two that made the impression on me. They were the ones that brought Gene Wilder front and center for me.

Willy Wonka has become one of DC’s favorite all-time movies and I am glad I was able to introduce him to something that meant so much to me during my childhood and that he loves it just as much if not more that I did. It is a classic and it is timeless. Willy Wonka and Gene Wilder will live on forever in our hearts.

In honor of my and DC’s love for the great Gene Wilder, I am re-running an “Everything is Related” post from last year.

RIP Gene Wilder…..

Everything is related – Willy Wonka

In a few weeks we will be leaving for our trip to London.

One of the items on our agenda is going to see Charlie and the Chocolate Factory – The Musical at the Theatre Royal Drury Lane. DC is so very excited. Willy Wonka has been a favorite of DC’s since I can remember.

Wonka through the years

Wonka through the years

In honor of Charlie and the Chocolate Factory – The Musical – here is the third installment in the “Everything is Related Series” – you can find the first and second here and here.

Among the many other reasons:

  – Everything being related, has helped him to move on to a more diverse realm of TV shows and movies (while still loving all of the originals he has loved since he was a baby). When attending an ARC movie activity or even just a movie night with friends, for instance, a Disney or animated movie may not be the choice of the others attending. Relating one movie or actor to another has helped him to be more open to watching something that may not be Disney-based.

For the first time so far in this series, we do not begin with Disney. DC, for some reason decided that Willy Wonka and the Chocolate Factory, even though not a Disney Movie was just fine with him. He has been watching it for years. I’m sure I had to bring it to his attention originally but this one he actually liked the first time around (this is not always the case – he hated Shrek – refused to watch it for the longest time. Now he is Shrek’s biggest fan).

Yes I do realize that Willy Wonka does not have much to do with London, but I am going with it anyway.

It is entirely possible that Jack Albertson had something to do with DC green-lighting Willy Wonka. Jack Albertson was “the voice of” Amos Slade in The Fox and The Hound…..

and there it is…..

the Disney connection.

DC knows “the voice of” just about any Disney character you can name. His love of the original Willy Wonka brought him to the Charlie and the Chocolate Factory movie and to Johnny ‘Deep” (DC-speak). For quite awhile after that version came out, I did hear quite often that it was “Not ‘Jen Wonder’ (Gene Wilder)”, but I think he just felt the need to tell me that. It did not deter him from watching. Johnny ‘Deep’ opened up a whole new world for him, some Disney based…

DC as the Mad Hatter

DC as the Mad Hatter

..and some not – but he was instrumental in getting him to watch other types of movies. As I said in the first post and above – it is important for him to be open to other movies when he is attending an activity or out with his friends.

When DC was younger he did seem to like the Harry Potter movies. The books were just too much for him at the time. I was always on a hunt for Harry Potter type books that were a little less intimidating for him. I was really never successful, but I did come across the Spiderwick Chronicles Series. I bought him all of the books that were available at the time and I discovered that there was even a movie out on DVD. I tried desperately to read these books with him every night and I tried and tried to get him to watch the movie. He was not having any of it.  So, after years of them sitting on the shelf collecting dust, I finally gave up and got rid of them.

It was only a year or two ago that I was flipping channels in the living room, not really paying attention when DC ran in screaming “Freddie Highmore, Freddie Highmore!!!” – I had no idea who that was or why he was screaming.

“Charlie Bucket! Charlie and the Chocolate Factory!!!”

The Spiderwick Chronicles was on TV and he was so excited. He watched the entire thing – which is a big deal since it was a weekend and he was giving up some computer time to watch – and yes, we did have to go out and buy  the DVD and the books all over again. This movie that I tried so hard to get him to watch when he was younger is now among his favorites.

The original Willy Wonka is by far his favorite version. Meeting the real Mike-TeeVee saved him from an anxiety attack at NY ComicCon a few years ago.
mtv

But , Johnny ‘Deep” has broadened his horizons.

DC’s latest obsession is the latest version of “Into the Woods” with Johnny ‘Deep’. He does have the original version from the 80’s or 90’s but this new version is without a doubt his new favorite movie.

He randomly will announce to me that ‘Merue Strip’ plays the wicked witch, just in case I have forgotten……

Meryl Streep………yes! I can work with that!

But it all began, long ago with Gene Wilder.