Saturday, January 25, 2014


I have read so many articles and lists recently regarding “What not to say to an Autism Parent” and “The 10 dumbest things people have said”, etc…….

And yes, yes, I’ve heard almost all of them before – more than once.

I’ve been told “He doesn’t look Autistic”

At a birthday party a parent asked “Does he eat?”

Another: “Can he talk?”
“Well he’s okay then, right?”

I’ve always said that I’d rather people ask questions than stare or assume. Some people do, and I always welcome the fact that they want to learn. I have had many wonderful conversations with strangers that were genuinely interested in learning about autism – his autism, as the saying goes…. “If you meet one Autistic person, you’ve met ONE Autistic person.” ~ Unknown

Recently I was visiting DC’s work program. There was a woman standing there that looked a bit familiar to me, but I could not place her. She looked at me and said “I know you, Vickie”
I was the team manager for our local Special Olympics golf team for a few years (insert laughter, as I know NOTHING about golf) and her nephew who also has autism, was one of my players.

We chatted for a bit. It turns out that she was there because her nephew was transitioning into the same work program as DC.

As we were chatting,  she said:
“You son is SO handsome. You should be thankful he has Autism so you won’t have to worry about all of the girls that would be flocking around him”
Now she is a very nice woman and I know in her own way, she actually thought that was a compliment, 


Sunday, January 19, 2014

"Funny Friday" (from the archives - August 27, 2013)

For two years after “Graduation”, DC attended a transition program through the school system at a local college.
I was visiting the school for a class event, one Friday afternoon and his teacher, “Mr. Disney” (as DC calls him) excitedly came over to me and asked “Did you help him with his jokes today?” Not knowing what he was talking about, I said “No, what jokes?”  One of the IA’s (you may refer to them as “Para’s, we call them IA’s) chimed in to tell me that he told 3 jokes at “Funny Friday” that morning.

Mr. Disney went on to tell me that every Friday is “Funny Friday” and all of the students tell their favorite jokes at the morning meeting.

                     Let’s pause here for a moment……

I don’t know how long (or if ever) it will take before anyone will understand that HE IS NOT GOING TO COME HOME AND TELL ME THESE THINGS! If someone doesn't tell me, I am not going to know. If I had known about “Funny Friday” I would have helped him with some jokes, but unfortunately I was never told.

I was surprised that he actually TOLD a joke because DC’s idea of a joke – and it’s always the same – is:

“Ha, Ha, Ha! Funny Joke!”
Me:   “What’s the joke, Bud?”

(Insert “cricket” sound here)

They proceeded to tell me the jokes he told that morning and that he told them properly complete with a bow and…. they were actually funny!

“Why did Bo Peep pour chocolate on her sheep?”
“She wanted a chocolate BAAAAAAAAR”

“Why can’t Cinderella play Soccer?”
“Because she ran away from the ball”

“What do they call a Fairy that doesn't take a bath for a month?”

He told honest – to – goodness JOKES!  After years of “Monster”, he actually told, not one joke, but three and UNDERSTOOD why they were funny!

Later, I ran into the Interim Dean of Health Sciences, of the college who also told me that DC told three jokes that morning. Everyone was very impressed, to say the least!

But still I had no idea where he got these jokes.

About a week later, “Mr. Disney” finally got DC to tell him where he got his material.
Actually, he showed him……
After asking him all week, DC went to the computer, typed “Disney jokes” in the search engine and found a web-site full of Disney jokes.

He memorized them and had them ready for “Funny Friday”!

He was able to figure out on his own that “Monster” wasn't cutting it for “Funny Friday” and he needed jokes AND went about finding them himself, remembered them and had them ready for Friday!

“Monster” is still his favorite joke though………

Thursday, January 16, 2014

Literally Speaking

Twelve years ago, I wrote this:
"You can NEVER be too specific:
 While learning “grocery shopping” in the classroom; his plastic cart full of plastic food... he was told that it was time to "put everything on the counter to pay" – Instead of taking the food out of the cart, he lifted the entire cart onto the counter!"

"When you tell your child to pull his sweat pants down over his socks and he proceeds to PULL HIS PANTS DOWN from the waist to his ankles - You know you were not specific enough with your request."
And a few years later, this:
My son loves to write little “stories” (he thinks they are stories, but they are usually just one line).
I had been home from work for a few days with the "Flu".  It really didn't occur to me that he had no idea what the "Flu" was and I wondered why he would laugh each time I mentioned it. He decided he would write one of his one-line “stories” for me to make me feel better ……
“Mom was so high"
It took me a few minutes…… but then I realized he thought I “Flew”
§  Then there was the time I said “Now listen closely” and he stuck his face one inch from mine…..
§   He laughed for about a week after I told him it was time to “hit the road”.

§   Or.. after the third round of kids whacked the piƱata at his camp Halloween party, the Director said “Okay, DC, lets’ see you to tear it up” – he yanked it down and ripped it apart with his hands.

There are so many other examples, but these few really stick in my head.
Needless to say, like many people with autism, DC takes everything literally.  Over the years, I have gotten much better at recognizing when something is said or read that taken literally will not make much sense to him. I always try to stop and explain what it means in that context, whether he asks or not.
He has made a great deal of progress in that area as well. He knows that the “flu” does not mean “flying”. He gets that “hit the road” means we have to get going. But he knows these things because they were explained to him, he is not able just figure it out himself – how could he?
Knowing this about my son, I suppose, when I told him to “walk slowly” on the sidewalk just in case there was ice (there wasn't), I should have expected this:

Tuesday, January 14, 2014

Does everything really need to be this difficult? (From the Archives - August 30, 2013)

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 “Ah Ha” moment, no conclusions to be drawn (actually there are many conclusions to be drawn, but we won’t say them out loud) – just a plain and simple “I’ve had it” kind of rant.

For those of you who don’t have a child with special needs or have young children and haven’t had to think about the “adult” side of things, here’s how it works here. I don’t know if it’s 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 has 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 caseworkers through DDS (Department of Developmental Services, formally known as DMR). DDS is where the funding comes from for our children’s’ 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 caseworker. 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 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’s son is the same age as DC, came over and we all did the paperwork together. (Thank you, Ruthie! If not for you I’d still be sitting at the kitchen table trying to figure out that application!)

Now we’re done, right? Wrong!

Every year I have to fill out the forms for Guardianship (when they come, sometimes they don’t) – just to be sure DC is still disabled. Not a big deal, just annoying. He has autism, it doesn’t go away.
There is an annual report for Social Security as well as an audit or two during the year “just because”. And….. 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 to Social Security, so they can reduce his monthly payment appropriately.

Then we get 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’s redetermination was due on July 20, 2013. On July 16th I mailed a giant package with the application, the year’s worth of check stubs, his last bank statement and insurance cards – everything they asked for in the instructions.

Done! PHEW!

Wrong again!

On Monday, August 26th I received a letter from DSS (Department of Social Services) 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!

“Calm” was never and will never be a word used to describe me, so the next morning a dragged all of my “books” to work to recopy all 43 pages of his redetermination, because at this point I can’t 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 – 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’d be putting in for vacation time to finish all of this! Unfortunately, all of my co-workers had to listen to “Your wait time is…. more than 20 minutes” 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 inputted 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 paystubs. Hmmmm….. Maybe the redetermination instructions could say that!

  • They lost his original packet (but maybe not, we may never know)
  • You can’t 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 –it 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’t work.
  • And I still don’t 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.

Monday, January 6, 2014

“Looking Handsome” in the Princess Room - (from the archives - Nov 2013)

Let’s begin by saying that DC does not like to keep anything in his pockets. He will put his cell phone and wallet in his pockets; but they come out the second he gets inside the house…… nothing else. So much so that about a year ago when I asked him to put his gum wrapper in his pocket so he could use it when he was finished (instead of handing it to me straight out of his mouth or sticking it to the console in my car), he immediately threw away said piece of gum and hasn’t had a piece of gum since; all because I asked him to put the wrapper in his pocket.

Planning ahead:

He really doesn’t have any concept of planning ahead. He knows when he’s going somewhere or doing something, but he really can’t plan, for example, what he’s going to wear or what he should bring other than the pile of books that he travels with.
Two years ago we took a trip to Universal, Disney and Puerto Rico. DC has been to Disney many, many times so he knows what he wants to do and where he wants to go. He’s already got that all scheduled in his head. But if I asked him how many pairs of socks, pants, underwear and shirts we should pack for the week; he wouldn’t be able to figure that out.

Day one was spent traveling and visiting Downtown Disney
Day two we visited Universal Studios
……and then on to Disney World, more specifically, the Magic Kingdom, DC’s favorite.
As I said earlier, he knows exactly where he wants to go and what he wants to do, so there was no question at some point we would be visiting the “Princess Room”.
After we made it though the line, outside the room, we waited inside the room with 4 or 5 other families to see the princesses.

While we were waiting behind the ropes, in full view of all of the princesses, DC gave me a bashful smile that I had never seen before. He slowly pulled a comb out of his pocket. Snow White happened to notice the comb and said “Did you bring that comb to look nice for me?” DC now very excited answered in his very loud happy voice, “Yes”, and the flapping started

– Good flapping

- Happy flapping

At this point all of the other parents, princesses and workers in the room were watching him (not staring, watching)

– Good watching

- “Awww, how cute” watching

DC combed his hair and announced, again in his very loud excited voice, that he was “Looking Handsome” (more Awwws). Now he was the hit of the room and the center of attention. The other parents were taking pictures of him, the Disney Video Guy (I never did find out what that was all about) was taping him. DC was eating it all up, and then he turned on the charm.

The other parents actually hovered as long as they could to see him when it was his turn with the princesses. In true DC fashion, he held their hand, took a bow and spun them around as if they were dancing at the ball. He added a new “move” to his list that year and began each conversation with a line from one of their songs.

                                He told Snow White that someday her prince will come.

                        He told Belle that the was “something there that wasn’t there before”
…. And he informed Arora that he walked with her “once upon a dream”
-          The boy knows his Disney songs!
Did I tape it?
No, I was too busy getting teary eyed about the whole thing.

The Princesses were wonderful with him! They all made a big deal over him and he was the happiest “kid” in the park that day.

On the way out of the room the man with the video camera gave us passes for that night. The park was to stay open an extra 2 hours after the official close time for the people with passes. There was a party, music and no lines for the rides. It was a wonderful night.

Just think about this though, because I have thought about it so many times…..

*DC knew that he, without a doubt, would be going to the princess room .
*He thought ahead
*He put a comb in his POCKET BEFORE WE LEFT HOME
*He remembered to bring it with him to Disney World a full two days later!

This may not seem like a big deal to most of you but I’m sure that some of you will understand how mind-blowing this was for me!

Between you and me, I think the real reason for bringing the comb was that he wanted to comb “princess hair”, but the fact remains – he thought ahead.
One of these days I will tell you about his next meeting with Snow White a few years later…..


Saturday, January 4, 2014

Progress with a side of pasta

Looking back over the past year, I can honestly say that it has been a very good and productive year.
DC completed his first full year of “work”.  He transitioned into it very well. Me? I am the one still having a problem calling it “work” and not “school”, the “car” is here, instead of the “bus”. I panic each time a school vacation comes along because I have to make plans for DC while I’m working, until I realize he doesn’t get those weeks off anymore; he’s working. The transition seems to be much more difficult for me than it was for him.

My “Broadway Baby” also has a volunteer job as a Greeter at a local theater, with a job coach of course. He loves it and does well. The shifts are long, but he makes it through and he is happy when he gets home. How many of us can say we have our Dream Job? DC has his.

Because of his “theater experience” he was asked to help his camp by passing out programs at the annual “Thank You to Our Civic Groups” picnic. Unfortunately, the promise of cheeseburgers after he was finished totally distracted him while he was supposed to be working, so we will write that one off as a “trial run” and I will know how to better explain the process to him next year.

Communication-wise, I’ve noticed that I am doing much less prompting to get him to respond to a greeting and many times he will initiate a greeting himself; although “Hello Old Lady” (to his Grandmother)  isn’t exactly in my top ten, he DID initiate the conversation himself. He was also able to tell me a couple of times, in his own way, but in a way that I was able to figure out, that he wasn’t feeling well.
He has been asking to do  more things “All by myself”, like making his lunch for school work, his breakfast, making his bed and shaving. “All by myself” means he doesn’t even want me in the room (a good thing with the shaving....... I make him nervous - me?- “Mom, are you still here?”).
This year we skipped our annual Halloween trip to either Salem or Sleepy Hollow and decided to go to New York ComicCon. To say it was  crowded is an understatement. He did well. Yes, he was anxious, but he controlled himself as best he could.  Mike TeeVee came at the perfect moment. DC was getting anxious so we were on our way off the show floor because I could see he was getting upset. We happened upon "Mr. TeeVee" on the way. No line,  as I don’t think anyone realized he was there yet. He was very nice and was able to spend some extra time with him. DC calmed down right away.
He waited in line for an HOUR and A HALF to see the love of his life, Felicia Day. Do you remember when your kids were little? When they would finally eat or do something that they never would before and you were afraid to even look at them for fear they would stop? This is exactly how I felt standing in that line with him. I don’t think I was even breathing. Fortunately she came out 15 minutes early and we were relatively close to the front of the line, so I knew we were “home free” at that point. He was excited when she came out but then he turned to me and said “I am very nervous about this”. He has used the word “nervous” up to this point only when there was a storm, never about meeting anyone. I think he realized right then and there that the people he sees on TV or in the movies are real people AND that this person, that he adores, is someone special.
We made it to the front, I could breathe again.  She was lovely to him. It made his day.
He was also able to meet William Shatner. He does know who that is due to his mother (me). He was very nice to him as well but “no pictures please”. We did forget to tell him that DC was born on his birthday; maybe that would have rated us a picture –but live and learn.
His Uncle asked him to sing Edelweiss at the table on Christmas Eve. Dc is and always has been a ham so I was surprised that he sang the song, looking only at me and then buried his head in my arm when he was finished. Bashful! Embarrassed! I don’t know if this is a good thing or not,  BUT, it IS a new reaction and a new emotion so I will add this to the Plus Column as well.
There is so much more I can say about this year, but my point is, DC is 22, he continues to make progress. No, not in leaps and bounds as he did when he was younger, but it is there.
No matter what the age, there is always progress to be made. It may not even be noticeable right away, but it is there.
And……. On New Year’s Eve, Eve, two days before the year ended, he actually ate pasta. PASTA!
Happy New Year