I think there’s a form for that…

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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 “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. 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 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’t) again – just to be sure DC is still disabled. Not a big deal, just annoying. But seriously, 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 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’s redetermination was due on July 20. 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. 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!

“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 re-copy 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 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’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.

The Santa Train revisited….

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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.

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Lessons learned on the “Santa Train”

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(Code word of the day: “Supplement”)

The other day, I read a post from one of my favorite bloggers, Autism-Mom. The post, FEELING THE MAGIC was about her son questioning the existence of Santa Claus. Give it a read if you have a minute, it is wonderful.

As parents, we all come to this 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.

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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…

 

 

 

 

 

 

 

 

Still no elf on our shelf

In observance of the official start of the Christmas season (in DC’s eyes, anyway) – the day that the tree must go up and his hundreds of ornaments hung anywhere he can fit them; is a post from the same time last year. Although, much to my surprise DC did pick out an Elf on the Shelf ornament for the tree further into the season last year – there is still no Elf on our shelf.

THERE IS NO ELF ON OUR SHELF….

I have never attempted  “Elf on the Shelf” with DC. It looks like fun but I am not quite sure that he would “get it”, and if he did, I would be terrified to ruin the whole thing by forgetting to move the elf every day.  Unfortunately, the anxiety of forgetting is still never a guarantee that I will remember when it was time for Elf to move to a different spot. Then,  as *Geri said to me on Wednesday, “I don’t know where I put Derek the Elf last year. I have to find him by tomorrow” – I would always be in that same boat – I am notorious for putting things away that are never to be seen again.

Not participating does not stop me from harassing my two co-workers with clever photos of Elf ideas that I come across. If I am not going to do this, then they darn well better get creative about it for their kids. I mean someone should use the ideas that I would have used if Elf lived in our house, right?

(please pass the “pressure”)

Last year, Elf seemed to be everywhere. I do not know if it had become more popular or if it was due to the fact that two of my friends/co-workers, *Al and *Geri were elf’ing it for their children and that many of my instagram friends were posting daily photos of elf and his/her activities at their house. Whatever the reason, I found myself feeling guilty not having done this for DC.

After thinking about it for a while, trying to come up with something else to do in place of Elf, something that didn’t depend 100% on my memory –  I thought about his love for Christmas ornaments and our annual “ornament ritual” and came up with an idea.

DC loves ornaments. He always did. When I come across an ornament of a character, book, food or object that he loves, I buy it and save it for Christmas. Our tree generally goes up the day after Thanksgiving. DC loves going through all of his ornaments and hanging them on the tree. He is at the point now where he can unwrap and hang them all himself. He has accumulated so many  over the years that there is no longer room for any other ornaments on the tree – my Star Trek collection has not seen the light of day in many years.

Kirk, out!

Depending on the amount of ornaments I have stockpiled ahead of time each year, one is placed under the tree every few days. DC knows that if the gift is wrapped in aluminum foil, he has permission to open it.

I decided I might try hiding the ornaments around the house every few days. In making up this new tradition, there were no rules and appointed times that I needed to adhere to. I decided I would not tell him about this hunt, but I would hide the fist one or two new ornaments in places where he could not possibly miss seeing them, until he got used to not finding them under the tree.

I hid the first ornament on the shower rod, knowing there was no way possible that he could miss this. If he didn’t see it the second he walked into the bathroom, then he would definitely see it the moment he looked in the mirror. There was no way he could ever miss this ornament!

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He missed it……

It hung there the entire day. He even took a shower and did not notice it. Finally I had to tell him that I thought I saw a new ornament hanging in the bathroom – only then did he find it.

I hid a new ornament the following day. It was sitting right on top of the shoe basket. One of the first things DC does when he walks in the house is take his shoes off. There was no way he would not see this one.

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He didn’t…….

This was not going as well as I expected. He was happy as he always is to receive a new ornament, but the whole surprise of just happening upon a new ornament was not what I’d hoped it would be. I just about had to point them out to him. I could have just continued on with the ‘aluminum foil package under the tree’ tradition.

I decided I would leave a note each time there was an ornament to be found.

This helped in his search, but still,  the ornaments that were right out in the open and visible seemed to be the most difficult for him to find.

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For a child that never misses anything, he was missing a lot.

Even odder – the ornaments that were hidden well out of plain sight, were found almost immediately, before reading the notes or clues. He went right for them.

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hooksnowBy the time Christmas rolled around and the last ornament was hidden and found, he had finally gotten the hang of it. He was having fun with it.

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So, we’ll chalk last year up to a ‘trial run’. Here’s hoping this year I can get a little bit more creative with the hiding places and maybe leave clues instead of plain old notes. But still, our new tradition is not Elf on the Shelf – funny how these silly, little things can make one feel so guilty.

My stockpile this year does include a “Buddy the Elf” ornament which will be hidden on the shelf.

 

That counts, right?

 

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(this post was originally run in November 2014)

 

 

 

Happy Thanksgiving!

Wishing you all a very Happy Thanksgiving…..

Someone I know is looking very forward to a turkey leg –

or “Chicken with bones and sprinkles”

-although I’m sure the wings will do in a pinch.

It’s all about the bones.

But bones aside,  right now he would just like to wish you all a Happy Thanksgiving!

 

 

Two Years ago – “I Love you, Mom” (Just a little Thanksgiving Quickie)

(November 2013)

DC flashing the I Love you Sign as he does almost anytime he walks by me.

DC flashing the I Love you Sign as he does almost anytime he walks by me.

Who would not be thankful for this wonderful child who will just flash me the “I Love You” sign, just because he happens to be walking by or just randomly peek around the corner to say “I love you, Mom”.

Happy Thanksgiving…….

If you knew…. Peggy Sue..

DC is not always a fountain of information. Most of the time it is very difficult pulling information out of him.
A few weeks ago, he left for his volunteer job at a local theater at 5:00pm (with his job coach, Mrs. H.). Volunteers have to arrive 2 hours before show time to put the programs together for that performance and to get their assignments for that evening. DC is almost always assigned as a greeter – he passes out the programs to the audience members as they walk in and recites his line “Enjoy the show”.
At the beginning of each season, when I have to pick the dates he is available to work, the name of the show is not available – probably because they do not want the volunteers to choose only by what show they may want to see. I also have to work around his schedule and Mrs. H’s schedule, so I am really just looking at dates and nothing else. This particular show, as it turned out was Alton Brown from the Food Network. When their beginning of the show greeting duties are over, many times the volunteers are able to sit and see a good portion of the show.

At 9:45 I received a text from Mrs. H. I assumed it would say that they were on their way home, but no…. it said “We’re still here”. They finally arrived home at 11:00PM – After being there for 6 hours, the only information he gave me was:
“A man making ice cream” – that was all he had to say…
My friend Bill responded to my non-information post with:
“I LOVE it, with all that Alton does and his wild energy, DC found the most memorable part of Alton’s show! You could start a new Blog called “DC’s Cliff Notes of Live shows at the theater!” I love how our guys and gals simplify what they see and hear into something that is truthful & concise!”
So true….. and I may just do that, but the reviews just may be very short.

DC, his best friend BB and I had tickets for the Buddy Holly Story yesterday. DC did work the performance the night before, but he was excited to see the show again with BB.

On Saturday morning, DC was concerned due to all of the snow that had already fallen (5 inches) when we woke up:
tembling

Despite the snow, we made it.

They both just loved the show. They had a great time.
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This morning, DC was full of information and chatter about the ‘wonderful’ time he had yesterday. I was there but he was determined to tell me about it anyway, and I’ll take it…. it was unprompted information.

So in DC’s words, his review of his day:

I had a nice time last ‘even-ing’.
I went to see Buddy Holly Story with my friend BB.
We danced and danced and danced.


We had a scared of fright – jump up – PHEW!
America the Beautiful favorite song.
I went to dinner and Donna and John and Mom – me too!
Perfect!

Translation:
“We had a scared of fright – jump up – PHEW!”
Fortunately we had box seats as DC jumped up as if he could not control himself any longer, to dance. I mentioned to him later that he scared me because he jumped up so fast. He was using part of his favorite phrase “You gave me a fright” from the Lindsay Lohan version of the “Parent Trap”.

“America the Beautiful favorite song”
DC does have a love for all patriotic songs. He even has a sign language dvd of only patriotic songs, but I suspect that he chose it as his favorite from the show because it was really the only song he was familiar with.

“I went to dinner and Donna and John and Mom – me too!”
Because the snow was supposed to be much worse than it turned out to be, BB’s mom offered to drop us off as her car is much better in the snow than mine is. We all went out to dinner afterwards.

So there you have it, DC’s review of his day. I know he had a great time as he is still talking about it.

As for the “blind scheduling” method for volunteers at the theater, I just received DC’s schedule for the second half of the season. The first show he is scheduled to work is “50 Shades, the Musical Parody”.

I think DC and Mrs. H will be hanging out in the lobby for that one………….

January reruns – Scotch Tape, Salt and Some Good Old Fairy Dust

In keeping with my winter rerun theme – remember back in the day when TV shows went into reruns during December and January instead of being replaced by something new? – I am re-posting an older blog from 2013, because, really…nothing has changed…..

I am still hiding pens, hiding scotch tape and keeping salt and pepper shakers out of sight – which means the Dr. Who salt and pepper shakers I received for Christmas are displayed on the shelf….. empty….. sigh

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From February 2013:

Everyone needs a little “fairy dust”

Everyone needs a little Fairy Dust

Harassing my co-workers for their paper towel rolls for a project this week, made me think about the reasons I don’t buy paper towels myself. This then led me to think about all of the other things I don’t buy, have to hide or make adjustments to, around the house.

Shampoo: This is no longer an issue, but at one time and for many years if I forgot to take the shampoo out of the shower, most of the bottle would be used to paint a masterpiece and the rest went down the drain…… every time.

Paper Towels: Paper Towels are for shredding and only for shredding. On the rare occasion that I do buy them, they have to be hidden on top of the refrigerator. Hiding the paper towels makes them not very convenient for me to use and forgettable, so there really isn’t any point  in buying them at all.

Paper: Every single piece of blank paper in the house has a Disney character’s name written on it. Teachers, Camp councilors and  anyone else I have to write a note to, receives that note on our exclusive custom stationary. After a few weeks of notes to camp, the Director finally asked “Do you guys do ‘A Character a day or something’?” No, unfortunately nothing that creative, I just can’t keep the paper out of the hands of my in-house stationary designer.

Construction Paper: Construction paper is also used specifically for character names, BUT according to the rule made up in his head,  these sheets can not and will not be saved. They MUST be cut up into small pieces with scissors and spread out all over the floor. He must also write on each sheet of  an entire package of paper before he begins the job of shredding/cutting. A few pieces just doesn’t do it. A package of construction paper will only last an hour or two after it has been opened.

Old Grainy picture of DC surrounded by shredded construction paper.

He has been a bit better with the construction paper lately. He still writes his character names. He still will not save them as he does with plain white paper, but now at least, he rips them up, one at a time and throws them away. –  (say it with me….) Progress!

Baby wipes (or hand wipes): Wipes are used for “Cinderella chores” ; washing the floor and door. This could actually be a good thing if he didn’t use  20 of them to wash the same spot on the same floor and the same spot on the same door. We don’t buy wipes anymore.

Scotch Tape: Scotch tape can be used on anything and for anything. For the most part, it is used to tape up pages in his books. Some books require an entire roll for just the smallest tear. Scotch tape can also be used to build a drum out of a cup or a bowl. He covers the top of the cup or bowl with tape….. a two roll minimum of tape, and this is his drum. Yes, creative, and yes he figured this out by himself but now I have to hide my tape in the cellar if I hope to find any when I need it.

His very own scotch tape is now an item on all of his Christmas/Birthday lists. One friend in particular has been very creative with her gifts of scotch tape. He just loves them!

Scotch Tape: For the boy who has everything!

Pens: No matter how many pens I hide for myself, I can not ever find a pen. He has all of them…… somewhere, I don’t know where and he is not telling. He will return the pens that don’t work –  those are always readily available.

Buttons: If there is a button there, it needs to be buttoned. Years ago I thought I was being sneaky by removing the top button on all of his shirts so he would not insist on buttoning everything right up to his neck. I discovered I was not as slick as I thought I was one day when DC brought me one of his shirts to have the button removed. He knows there should be a button there and knows I’m cutting it off, but for some reason this is alright with him. Leaving it on and not buttoning it, is not.

Other clothes: All tags must be removed from all clothing. If he should find the smallest rip, tear or string, he will proceed to shred that article of clothing. It may take him all day, but he will make sure it can never be worn again. Just recently I mistakenly bought him a pair of jeans that had ready-made tears in them. When I realized, I was sure this would be a disaster, but for some reason, it was fine with him. He wears them quite regularly…….. figure that one out. I can not!

Salt: We do not keep salt or sugar on the table. Salt is used as fairy dust. If it is not being sprinkled on his food, then there is no other use for salt, except to be used as fairy dust. Crumbs, the cereal dust at the bottom of the cereal box, crushed chips and a number of other items can also be used as fairy dust, but salt is the ultimate in fairy dust.

I’ve been “Fairy-Dusted” many times, so has the kitchen, the living room, restaurant tables and his uncle when, a few years back, DC got his hands on some cotton candy sugar at a picnic (Cotton Candy Sugar = Pink and Blue Fairy Dust; what could be better!)  Delightfully he took a very large handful and “dusted” his Uncle’s head yelling;

“Think of a wonderful thought” 

Who doesn't need a little Fairy Dust every once in a while?

His Uncle didn’t get it……..

But really…..who couldn’t use a little fairy dust every once in a while?

(He is better with salt these days, but I  will not keep it on the table, it is just too much for him to resist)

The Christmas Vacation Dilemma

A few days before Christmas, I read a post from another favorite blogger of mine, Mother O’ Jim, titled “When Delaying is Enhancing…” . The blog was about her son’s Christmas anxiety over a gift he knew he was going to receive (give it a read if you have a minute) and the steps taken to minimize his anxiety.

While I was reading this post I was thinking about DC. Although he does get very excited and anxious around Christmas-time, reminding me many times everyday that “Christmas is coming soon” – he does not seem to get as anxious as Jim from the blog.

I was a little bit concerned about this Christmas though. Everything about this holiday season seemed to be different. Thanksgiving is normally spent at a restaurant (the same restaurant) with DC, Doug, my brother and sister-in-law and at times, my niece. This year, my niece had moved out of state a few months earlier and Doug was away on a cruise with his sister and his father. The restaurant even seemed to be different, more crowded and much less organized.

DC’s Dad decided to go to Florida for an undetermined amount of time. He left in mid-November. He would not be here around Christmas for DC and for the first time ever, we decided to take our vacation a few weeks earlier than usual and were scheduled to leave Christmas morning. We had to leave the house by 8:30 in the morning.

DC does understand that now that he is an adult, Santa only brings his stocking. The rest of the gifts are from me (Mom). But, would he understand when he woke up on Christmas morning to only a stocking, even if he received the same big pile of gifts the night before? I explained this to him over and over again and he said he understood. This NEVER means that he really understands.

After reading the blog I spoke of earlier, I got a little bit more anxious about it. Jim was happy to get his gift early as would DC, but I know in his head, this would not – even if he agreed that it would – eliminate the expectation of the Christmas morning pile of gifts. I know this from the many, many times I have given him choices to do “this” or have “this” now instead of later or instead of doing or having something different. He agrees but then still expects whatever he traded away.

I realized that I would have to do more than explain it to him over and over again. I thought about showing him pictures, but then I realized that it would make more sense to him and he would not think he’s missing out if he saw the same pile of gifts just being given at a different time.

So I took a photo of our tree and another of the bookcase where Santa usually leaves his stocking and I usually leave his surprise gifts. Then I cut out photos of presents that I could move from one place to the other so he could see that he would be getting the same amount of gifts, just earlier than usual.

(These photos are not of our tree. The originals were terrible. It seems that every time I need to print – the ink just about gone)

Normally after opening gifts at my mother’s, we come home and DC opens the gifts that are already under the tree. There is usually only a few because he knows he’ll be receiving Mom’s hidden gifts in the morning with his stocking from Santa.

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Gifts from Mom on Christmas Eve

More gifts from Mom and Stocking from Santa on Christmas morning

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More Gifts From Mom and a Stocking from Santa

 

 

I had him move the gifts himself, from Christmas morning to Christmas Eve.

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Christmas Eve – ALL of Mom’s Gifts

 

 

So…..Christmas morning would be just Santa.

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(Santa would surprise him with another stocking at the hotel when we arrived, but he was not aware of this yet)

We did this every day until I was as sure as I could be that he understood that he was getting the same amount of gifts… just earlier.

Still I was a little bit nervous about Christmas morning….

He was up very early as usual – this was fine since we had to leave early.
He saw the stocking filled with everything he’d asked Santa for. He was happy, maybe not as excited as he usually is, but he wasn’t disappointed – that had been my biggest concern.

There was enough time to use and
play with everything in the stocking and enough time to watch the entire Peter Pan Live DVD he’d asked for.
He never made it through the 3 hour version when it was live on TV, but without commercials, it was only an hour and a half!
I am still not a fan….but this time around, DC really enjoyed it.

As DC would say, “Phew, I was very nervous about this!”

Fortunately, it worked out well and he had a Merry Christmas!

Not so “literally speaking”

We all know that DC is very literal (see Literally Speaking)  in his speech and way of thinking. Aside from his black and white,  no-gray-area way of communicating and understanding and his just one mumbled word responses, his manner of speaking is at times very formal, for lack of a better word. Much of his language stems directly from the many books he reads and movies he watches.
He calls the cabinet a ‘cub – board ‘ <cupboard> (emphasis on ‘board’), not because he thinks it is funny,  because that is what it is. That is what he’s learned from his books.

For example, when he knows I happen to have a Friday off from work and he wants me to come to lunch at his program –

“*Vickie, would you be so kind to join me for lunch on Friday at <insert the name of his program>” ~ the whole name please, not the Acronym used by the everyone else ~

 –  (*yes, he calls me Vickie from time to time. In his mind, he is an adult and that is what he should do. It does not bother me in the least. Last night, for some reason, it was “Ms. <Last name> and that is fine too)

He does ask me from time to time, what a word means, not that he will incorporate the word into his vocabulary, he would just like to know. Every once in a while he will make a connection with one word and other in his head. I am always in awe when he manages to do this on this own. This seems to be happening much more lately.

For many years “Wonderful” was his choice when he had a good time or liked something very much. He has started replacing “Wonderful” with “Terrific”. Not a huge deal, but he figured out that it means the same thing and it is a little less formal than “We had a wonderful time”.

A few weeks ago, I was telling DC that we were out of something, I don’t remember what it was at the time, but it was something he was expecting to have for dinner. I explained that we were all out,  it was my mistake, I didn’t know we were out (things tend to go over better with him when it is my fault :).

His reply???

“No problem”

NO PROBLEM!!!!!!

I have never heard him use that phrase, ever. Somewhere along the line he figured out what it means and used it appropriately.

A while back DC and I were having a movie night. DC was waiting in the living room to watch “Maleficent” and I was in the kitchen getting the pizza ready ~ actually I was in the kitchen bleeding all over the counter trying to find a Band-Aid. Not an easy task with “Mr. Band-Aid” in the house – but that is beside the point. Searching for a band-aid box that was not full of band-aid wrappers but no band-aids and mumbling under my breath –  from the living room I heard; “Gee, I wonder what Vickie is up to”.

GEE????

IS UP TO ???

I wrote that one down as soon as DC brought me a Band-Aid from his hidden stash.

In my last post you may have heard “We have to get moving”.

GET MOVING  instead of  we have to go!!!!

I asked him to help me open a Peanut Butter jar – he tried, but he could not get it to open either.

“It won’t budge”

BUDGE?????

Let’s not forget the day he was “in sympathy” for sneaking chips. There have been so many more, but you get the picture. It throws me a little bit every time he comes out with a new one, but it is exciting. It shows me that he is paying more attention to what goes on around him and he is listening to much more than he lets on.

There are still many literal, black and white moments and DC still very rarely refers to himself as “me”.

Recently at a Best Buddy walk, both of his Buddies asked him where he got the Star Trek shirt he was wearing…..

“DC’s room” 

 

 

 

 

Lessons learned on the “Santa Train”

 

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(Code word of the day: “Supplement”)

The other day, I read a post from one of my favorite bloggers, Autism-Mom. The post, FEELING THE MAGIC was about her son questioning the existence of Santa Claus. Give it a read if you have a minute, it is wonderful.

As parents, we all come to this 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.

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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…

 

 

 

 

 

 

 

 

There is no elf on our shelf

I have never attempted  “Elf on the Shelf” with DC. It looks like fun but I am not quite sure that he would “get it”, and if he did, I would be terrified to ruin the whole thing by forgetting to move the elf every day.  Unfortunately, the anxiety of forgetting is still never a guarantee that I will remember when it was time for Elf to move to a different spot. Then,  as *Geri said to me on Wednesday, “I don’t know where I put Derek the Elf last year. I have to find him by tomorrow” – I would always be in that same boat – I am notorious for putting things away that are never to be seen again.

Not participating does not stop me from harassing my two co-workers with clever photos of Elf ideas that I come across. If I am not going to do this, then they darn well better get creative about it for their kids. I mean someone should use the ideas that I would have used if Elf lived in our house, right?

(please pass the “pressure”)

Last year, Elf seemed to be everywhere. I do not know if it had become more popular or if it was due to the fact that two of my friends/co-workers, *Al and *Geri were elf’ing it for their children and that many of my instagram friends were posting daily photos of elf and his/her activities at their house. Whatever the reason, I found myself feeling guilty not having done this for DC.

After thinking about it for a while, trying to come up with something else to do in place of Elf, something that didn’t depend 100% on my memory –  I thought about his love for Christmas ornaments and our annual “ornament ritual” and came up with an idea.

DC loves ornaments. He always did. When I come across an ornament of a character, book, food or object that he loves, I buy it and save it for Christmas. Our tree generally goes up the day after Thanksgiving. DC loves going through all of his ornaments and hanging them on the tree. He is at the point now where he can unwrap and hang them all himself. He has accumulated so many  over the years that there is no longer room for any other ornaments on the tree – my Star Trek collection has not seen the light of day in many years.

Kirk, out!

Depending on the amount of ornaments I have stockpiled ahead of time each year, one is placed under the tree every few days. DC knows that if the gift is wrapped in aluminum foil, he has permission to open it.

I decided I might try hiding the ornaments around the house every few days. In making up this new tradition, there were no rules and appointed times that I needed to adhere to. I decided I would not tell him about this hunt, but I would hide the fist one or two new ornaments in places where he could not possibly miss seeing them, until he got used to not finding them under the tree.

I hid the first ornament on the shower rod, knowing there was no way possible that he could miss this. If he didn’t see it the second he walked into the bathroom, then he would definitely see it the moment he looked in the mirror. There was no way he could ever miss this ornament!

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He missed it……

It hung there the entire day. He even took a shower and did not notice it. Finally I had to tell him that I thought I saw a new ornament hanging in the bathroom – only then did he find it.

I hid a new ornament the following day. It was sitting right on top of the shoe basket. One of the first things DC does when he walks in the house is take his shoes off. There was no way he would not see this one.

glass slipper

He didn’t…….

This was not going as well as I expected. He was happy as he always is to receive a new ornament, but the whole surprise of just happening upon a new ornament was not what I’d hoped it would be. I just about had to point them out to him. I could have just continued on with the ‘aluminum foil package under the tree’ tradition.

I decided I would leave a note each time there was an ornament to be found.

This helped in his search, but still,  the ornaments that were right out in the open and visible seemed to be the most difficult for him to find.

pinocio

 

bazingarescuers

For a child that never misses anything, he was missing a lot.

Even odder – the ornaments that were hidden well out of plain sight, were found almost immediately, before reading the notes or clues. He went right for them.

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hooksnowBy the time Christmas rolled around and the last ornament was hidden and found, he had finally gotten the hang of it. He was having fun with it.

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So, we’ll chalk last year up to a ‘trial run’. Here’s hoping this year I can get a little bit more creative with the hiding places and maybe leave clues instead of plain old notes. But still, our new tradition is not Elf on the Shelf – funny how these silly, little things can make one feel so guilty.

My stockpile this year does include a “Buddy the Elf” ornament which will be hidden on the shelf.

 

That counts, right?