In place of the rant scheduled for today; I give you – “I told you so”

i told you so

Yesterday I was off on a pretty good rant. I had read a few things in the last few weeks that made me angry and listened to a few more that added to that anger. Let’s just say that the ‘ranty/venty’ post that I wrote earlier was really not ‘fit or human consumption’. I did save it in hopes that I can make it a little less hostile – hopefully I will, one day.

In lieu of the scheduled post is a post I wrote a few years ago about the trials, tribulations and battle for speech therapy for DC, which just so happens to be a small piece of the scheduled rant…..

I don’t want to give away the ending but there may just be an “I told you so” in the mix.

Sometimes “I told you so” is just good for the soul

DC in Uniform - Challengers Baseball

DC played baseball with the *Challengers League from the time he was 5 until he aged out last year at 21.

The “official” Challengers field in town is located in front of the school he attended for Birth to 3, Early Intervention and Kindergarten. Needless to say he was in this building and with many of the same teachers for a good 4 or 5 years.

I’ve had my battles with the school system over the years, but none so on-going as the need for speech therapy. This battle began in Early Intervention and continued on straight into High School.

Sign Language, I believed was absolutely necessary thanks to my sister in-law, Lisa who convinced me that sign would not prevent him from speaking if he had the capability to eventually speak. It might lessen his frustration level at not being able to communicate (it did). But sign was not, in my mind ‘Speech Therapy” and should not be considered as part of the Speech Therapy hours listed in his IEP.  Speech Therapy in a group setting also should not be counted as his speech therapy. Yes, he did need to learn to be able to focus in a group setting, but focusing in a group setting is not speech therapy, it is learning to focus in a group setting.

I can’t tell you how many of these teachers told me he would never speak. One speech therapist, Barbara, actually told me that I was obsessed with DC speaking and “You know, if he isn’t talking by now, he probably isn’t going to”. He was 4 or 5 at the time.

They went so far as to schedule and pay for an evaluation at a well known Medical Center to have him evaluated for a **“Talking Board”. I went to this evaluation, never intending for him to use a Talking Board, but to use the evaluation as proof he was capable of speech. As it turns out, this is exactly what the Doctor doing the evaluating said; he did not recommend the Talking Board and noted this in his report.

I didn’t give up on my battle with the school system, but I also didn’t want to waste any more time getting him the speech therapy he needed, I went out and got other speech evaluations and hired a private speech therapist.  Liza was wonderful and made a great deal of progress with him. She was with him for many years.  Armed with the evaluations and his progress, I was finally able to prove this to school system – Quite the Catch 22, he had to speak before they would agree to one on one speech therapy! Unfortunately it took a few years to get to this point with them; years that would have been wasted if he were not receiving the private speech therapy.

But back to baseball…….

Our league used a PA system and we always had a volunteer to announce the games.  Each game was opened with the Pledge of Allegiance.

When I was President of the league, I decided that every player should have a chance to be in the spotlight. Each week two players were assigned as team captains and another player was assigned to do whatever they were capable of doing on the microphone.

Some led the pledge; some sang a patriotic song or just yelled “Play Ball!”  If they were not verbal, they stood at attention at the Flag or threw out the first pitch.

Our games were played on Saturday mornings and Wednesday evenings. DC was about 10 years old and on this particular Wednesday when he was scheduled to be in the spotlight. Coincidently all of the teachers from the Early Intervention Program had been attending a meeting at the school after hours and decided to come down to watch the game before heading home. Most of the players had been their students at one time or another.

Many of them had not seen DC in about 4 years.  Just imagine the feeling I had to see DC to go to the mic and sing “America the Beautiful” as clear as a bell with all of those “professionals” who years earlier told me he would never speak, sitting right there in the stands! I could not have PLANNED this if I tried!

Sometimes an “I told you so” is just good for the soul, even if you don’t have to

actually say it out loud.

 

A VERSION OF THIS POST WAS PUBLISHED ON THE MIGHTY – “They Told Me He’d Never Speak. Then They Heard Him Sing”

Short Stories

It has been another one of “those” weeks. A “fluff” piece usually goes hand-in-hand with one of “those” weeks (lately, anyway).

Below are some “short stories” (statuses) that have been posted on my own and my public Facebook pages – too short to qualify for a blog post, although many have turned out to be the inspiration for an official blog post. You may have seen a few of these before, probably not all though.

This is one of those posts that I put together and save to post later when we are away or when I am really busy and really don’t have the time to write .Like the “Blog Title Series” (Series? Yes, there’s more), they are very often off topic or “fluff”. I like fluff, sometimes fluff is fun.  (a few current status’ have been added to the “saved” version before publishing)”

 

Well, DC got on the bus this morning wearing a 4 inch witch nose – he’s in the spirit!

***

Today the bus driver will be entertained by a flashing Rudolf nose.

***

…… and who thought an electronic mega-phone complete with siren was a good idea for Christmas?

***

Banana phone

I was required to have a conversation on the “banana phone” with the Fairy Godmother before he would eat the banana –

 

***

merry happy

 

“Merry Happy Christmas Eve, Mom”

 

 

 

***

Lesson of the week: Using the phrase “let’s head out” when taking DC to the bookstore, means that “let’s head out” ALWAYS means he’s going to the bookstore #ThingsIShouldKnowByNow

***

Well he’s heard the “T & L “ words on the weather . It is official. There will be NO outdoor activities for us today

***

Camera roll 10-2013 082“Mom, the glasses are bothering you”. (Translation: I bought new cheaters, they are different, he can’t stand it. They are bothering HIM.) But…. he’s not trying to take them off my face as he used to. #Progress

 

***

DC is shaving – getting ready for the Prom, scaring the life out of me w/ the razor. Finally he turns to me & says “Mom, are you still here?” #IGuessThatsMyCue

***

942836_4933935990806_2128176601_n

Doug after sitting through 23 coffee-house acts at DC’s Arc activity. I guess we’ll be skipping this activity the next time around.

 


 

 

****

“Mom, how are you feeling?”
(Me) “I am fine, how are you feeling?”
“I am perfectly ‘nis-able’ ” ~ Even Stevens – Influenza the Musical

***

DC just informed me that he needs to get his “beauty rest”

***

Going to have lunch today with DC at his “job”. He’s excited because he knows he will be able to have a cheeseburger……. Should I be upset that I don’t rate as highly as a cheeseburger?

***

Camera roll 10-2013 117So after I wiped out on my walk with DC today, I asked him “what would you do if mom couldn’t get up?” He answered w/out hesitation “call 911” (after he stopped laughing, of course) #Progress

 

 

 

***

ren faire

We went to the Ren Faire to see my brother’s show. DC loved it but yelled out in mid-performance “Oh no! *Bill, are you okay?” He was very concerned about the welfare of *Bill and *Uncle ‘Scamp’ and the bed of nails. Although not as concerned about the man actually laying ON the bed of nails…..

 

***

DC picked up the word “sympathy” from one of his books last night & figured out it means “sorry”. So now he’s “in sympathy” for sneaking chips yesterday

***

DC: “Annette ‘Fun – Tree – O’ in Babes In Toyland, my favorite movie” (Me: Worst Movie Ever …. Seriously ….)

***

We had our  IP (The “E” is dropped post-school age) meeting this morning at DC’s program. The first with his new case worker. One of the first sentences out of my normally agreeable son was “I don’t like this stupid meeting!”
1. I’m the Mother so I can not laugh (but I think I may have anyway)
2. I couldn’t agree with him more……

***

It’s a New Years Eve, Eve miracle! DC is eating PASTA!
PASTA! And about 10 meatballs, but…..PASTA!

***

grease

Just because I LOVE this and……. our kids ROCK!

 

 

 

 

 

***

headyache

 

I couldn’t have said it better! #DC-isms

 

 

***

I was on the phone with an automated system that was not cooperating. DC was making a lot of noise behind me. I told him that he had to be quieter while I was on the phone. I suppose he did not trust himself to keep the noise down because when I turned around, he had applied a Band-Aid over his mouth! Band-Aid 101 – other uses.

***

soundmachine

Band-aide 101 – other uses”  When I told him that his sound machine was too loud; this was the fix he came up with.

Happy Sunday!

 

 

***

arm

 But then, of course there are the “regular” uses #HeJustLikesBandAids

 

 

***

DC: “Mom, my leg is killing me.” (there was nothing wrong with his leg, I checked)

Me: “What happened to your leg?”

DC:”I broke my leg.”

Me: “How did you break your leg?”

DC: “Tree branch. Ouch!” (we are in the house)…

The lengths that he will go, to plaster himself in band-aids.

***

DC doing his best impersonation of Nick from Top Chef 11 – ‘Don’t Touch my pots!”

***

DC's hat

DC insisted on putting his Dr. Who WINTER hat into his backpack this morning. I asked him why, he wouldn’t or couldn’t tell me. I pointed out that he has a baseball cap in his backpack for the sun. It didn’t matter. So here’s hoping he won’t be walking around the greenhouse on this beautiful, sunny spring day in a T-shirt and a winter hat. #PickYourBattles #WhoviansUnite

 

***

excuse me

DC and his Winter Guard Team went to perform at an Ice Cream Social Fundraiser tonight. In the warm-up room before the show, he and his team were lined up getting their last-minute directions from their Director. DC waving/raising his hand during her speech….. “Excuse me! I’m waiting for Ice Cream”.

 

 

***

sick of butter

 

DC presented me with his shopping list for tomorrow. “bandes” – band-aids – and no, he is not sick of butter – he wants butter but in stick form (he doesn’t like the tubs😃)

 

 

 

 

 

***

DC woke up in a fabulous mood this morning. “Good Morning Starshine. The earth says hello “ (lol, Charlie and the Chocolate Factory or Hair – take your pick) #DisneylandParis

***

DC and Doug decided to go on “Indiana Jones Temple of Peril” in the rain…. Go figure #DisneylandParis meets #MrNoStormToday . Apparently rain is not as frightening at Disneyland

***

cape

  A cape…. Because proper attire is a necessity while watching you-tube (and you never know when you may  have to save the world)

 

 

 

***

Me: Hi, DC. Is Mrs. H there yet? (I knew she wasn’t, but would be there in seconds – but still I like to try to get the correct replies)

DC: No.

Me: Did you lock the door?

DC: Yes

Me: Did you lock the door?

DC: No.

Me: Please go and lock the door. You are supposed to lock the door as soon as you come home.

DC: Okay

Me: Don’t hang up! (He does not understand that he can just put the phone down, lock the door and come back)

He hangs up…

and second later the phone rings

DC: Hi Mom, I am home again!

***

five teen six

 

Book Editing 101 –

Page “Five teen six”

 

***

trouble

“Someone” may have just realized that he might be in a little bit of trouble tonight….

 

 

 

 

 

***

steve DC was having an “issue” tonight at the time his Best Buddy, Steve called to say hello.

 Steve understands, but I did tell DC that he was very rude to Steve.

 DC went straight into “note-writing” mode and presented me with this note. We did   text  it right over to Steve.

 

 

***

rain

It’s pouring.. POURING! DC was ready at the door wearing his raincoat (Me? No. I wasn’t going outside yet). When the car arrived, he ran out and I stood in the door as always. I saw him flagging we to the car, which he never does. Thinking something was wrong and not wanting to waste time looking for my umbrella, I ran to the car as I was. Opening the door, DC said “Mom! It’s raining! Sorry!” (of course he let me stand there in the pouring rain for a little while before he came out with that) … Happy Tuesday!

 

*Some names have been changed to protect the innocent

Have a great weekend…..

Hey! That’s not in the script!

Home

About a year or so ago, I wrote a post about the difficulty DC has with using the telephone (Don’t forget to call Mom). We haven’t made all that much progress since that post but we continue to work at it. As I said in that post, he does know how to use the telephone, but he only uses it when he is told to. It is never spontaneous. Most of his calls are to me, to tell me he is leaving work and again to tell me that he is home.

Much of the conversation with me when he calls is a script. There were a few times that he was late calling me to tell me that his transportation arrived. Wondering if he had just forgotten,  I called him and he told me he was “going home nowwwwwww”, which is what he tells me every day. As it turned out, he was not in the car – he was not going home. The car was running late. He has his script and he rarely deviates from that script.

It was a very long process – a very long process to teach him how to get into the house by himself. Because I work and because his dismissal time from school seemed to get earlier and earlier with each step up (from elementary to middle school to high school), I was always worried that, due to traffic or some other unforeseen circumstance, he might arrive home before I did. I wanted him to be able to get himself in, lock the door and call me – just in case. That whole process is a blog for another day.

He does now have someone after work that comes to the house and is with him for life skills and community activities for 2 hours a day. Still, there might be times when his car is early and he arrives before his aide does. It does not happen often but do I always want him to be prepared.

Having said that it does not happen often, coincidently it this happened twice just recently….

The Phone Rings:

DC: Hi Mom, I am home.

Me: Hi, DC. Is Mrs. H there yet? (I knew she wasn’t, but would be there in seconds – but still I like to try to get the correct replies)

DC: No.

Me: Did you lock the door?

DC: Yes

Me: Did you lock the door?

DC: No.

Me: Please go and lock the door. You are supposed to lock the door as soon as you come home.

DC: Okay

Me: Don’t hang up! (He does not understand that he can just put the phone down, lock the door and come back)

He hangs up…

and second later the phone rings

DC: Hi Mom, I am home again!

I mentioned his “Going home nowwww” script above. He uses the same script every day. Once in a great while he will change it up a bit, but it does not last. He reverts to his regular script the next day. As I also said above, I can’t take his scripting to be what is actually happening. Fortunately he always talks to me on speaker, so if what he is telling me, is not what is really going on someone – his boss or the driver will chime in to give me the real story.

The other morning DC, as he does every day, announced that he only had “Two Dollars Left” . This is always his way of telling me he wants money for hot lunch at work. He doesn’t understand money and I think he believes I have a never-ending supply of it in my wallet. I discovered that I didn’t have any cash so I told him he would have to make his lunch that day. He was not happy about this at all and began to get very demanding about money for hot lunch. I explained to him again that I didn’t have any money to give him for lunch and if he did not stop behaving this way, I would not give him lunch money any more and he would have to make his own lunch every day.

He stopped.

When he called me from the car on his way home that afternoon – he went right into his normal conversation:

“Hello Mom”

“Hi, DC. What are you doing?”

“I am going home Nowwww”

“Did you have a good day?”

“Great”

“Okay, call me when you get home”

“Okay”

That morning’s conversation must have been on his mind all day because before he hung up he yelled

“I want Mom’s money!!!!!!!!”

I could hear the driver laughing and I really couldn’t help laughing myself. I guess when there is something that is really important to him, especially when there is food involved, he can and will go “off-script” to make that perfectly clear to me.

What did you do today?

What did you do today Recently I was searching the house for something. We have no storage space so “storage” is pretty much anywhere I can stuff something and finding “said something” later often proves to be an all day event. I never did find what I was looking for but I did come across DC’s Journal from way back in elementary school.

The journal was created after many years of me begging for the teacher to write something in his book other than “Fine day overall” (one of my favorites). I wanted to be able to have a conversation, as much of a conversation as possible, with DC about his day. I wanted him to understand the question. If I wasn’t told about specific things that he had done on that particular day, and took his standard responses as fact, or guessed at what he had done and was wrong, he would never be able to understand the question. Other than lunch, the rest of his day is described with standard answers. Some of these answers may have been the truth at some point, but I am sure they are not the list of things he does everyday. Once he comes up with an answer, that is the answer I will get every day.

Even now that he is out of school and working – I get the same response every day: “DC, what did you do today?” “Good” (Some of the time he doesn’t understand the “what” of the question and other times I am sure he is just jumping the gun and giving me an answer to get this over with) “No, DC, what did you do at work today?” The daily reply: “In the Greenhouse, scooping the dirt, clean the cart” Fortunately the staff will sometimes write specific things that he did that day, so I can respond with, “Didn’t you mow the lawn today?” “Yes”

After years of not getting information about his day, we began writing a journal every night. I would type the things that I KNEW first-hand that he had done that day. I left some blanks for him to fill in names, locations or items. I included photos, so that it made more sense to him. I did add a few little jokes that helped me keep the boredom of typing this every night, at bay.

We did this every single night for a good three years. The book went to school with him everyday. I knew people were reading it, but still it took them 3 years to finally begin a journal for him at school. I came across this book a few years back during another search for something I had put away and could not find again. I didn’t have a lot of time to look through it at the time, so I put it away and haven’t thought of it since. I was glad to come across it the other day again. I’m so glad I didn’t get rid of it – so many memories. One day I will sit down with DC and read the whole thing from beginning to end.

Below are a few randomly selected pages (most from the front of the book, early on). They are certainly make-shift and not close to what I could have done today with all of the different software available (or should I say, the different software I have learned to use), but still, it is nice to have the pages and the book. (some names or locations have been edited for this post) journal_0001 skiing And a Few More………

I know that his communication is and always will be a work in progress, but I do think he’s made a bit of progress from way back in the day when we were making this journal every night.

A version of this post was published in Autism Parenting Magazine – How Journaling  with my ASD Son Created a Special Connection – Issue 39 Page 38 and 39

DC Speaks – Doug’s 153rd Birthday and why Mrs. H is just so jealous.

DC has his own Facebook and Instagram accounts. Instagram is private and I only accept people I absolutely know to follow him. 90% of the photos on this account are photos taken of him by me or someone other than himself. The photos and videos he has taken himself are pages from whatever book he may be reading, food, princesses from either books or the computer screen and videos of YouTube videos of Cinderella dancing (spinning mostly) or other characters spinning. There’s a lot of spinning.

I set up the account for him because he enjoys looking at photos so much. Apparently he enjoys looking at them much more than he enjoys taking them.

His facebook is set for friends only. I thought it would be a good way for his cousins and him to connect. I also thought it would be a good way for some of his father’s family that might feel uncomfortable being “friends” with me, to keep up with what he is doing. A good number of his Dad’s family are friends with me, but he has other cousins (2nd? Once Removed? – I am never clear on that) that are friends with him there.

He is not allowed to write anything unless he asks permission first and then I stand there while he writes whatever it is he wants to write. I hold my breath when I notice a spelling error hoping he does not notice. I know I should correct him and I do if he hasn’t finished the sentence or paragraph and I do always correct him if he is writing anything else. But on a status post, if he notices a typo he will backspace and delete one letter at a time until he reaches the word he wants to correct and then type the whole thing over again. This could take centuries. He is not allowed to accept friend requests until I can figure out who the requester is. He does not post his own photos. I’m sure he could, but his friends will be inundated with photos of Judy Garland, Amy Adams, princesses and Disney characters.

He does go on Facebook on his phone to look at pictures of his friends. He is allowed to do that. So far and it had been 4 years, he has followed all of these rules. I check his phone and his account daily. Lately he is starting to lose interest in typing a status. He does not like to type to begin with, I thought this would help him get used to typing. He still, every once in a while will ask to write something or I will sometimes take a photo and ask him to write what we are doing, but not as often as before. He still does go on everyday to look at pictures though and as I said, he will still post a status or two.

I was thinking about DC’s past status updates and decided to go through and pull out some of my favorites.

(Translations and/or explanations are in parentheses – a few names have been edited – other than that, nothing has been changed or corrected)

So, in no particular order, DC speaks…….

 

-We Going to Anthony.s for Thanksgiving Dinner i want Tuckey Legs

– i Hate Snow

– i hate Snow . i like going to Work with Mom

– i Hate Snow

(I think he might not like snow very much)

– The Lights is On

– we Had Fun at Halloween Party. i am Happy. Be Brave For No Storm

(worrying about losing power)

– i am so Happy is Halloween

– we going to sleepy Hollow with ‘BB’ and and mom and doug i am so exciting

– i Like the Movies Trouble with The Curves

– i going to Dad.s wedding I am looking handsome

– going to grandmother. s and have some muffins

(“grandmother’s” – from Disney and other books)

– Happt collation

(Graduation)

– luau day like lilo

(Luau day at camp – the only thing he can relate it to is Lilo and Stitch, because Everything is related)

last day of camp was yestrday. i had a fun. i am going to grandmother.s today. a very merry unBirthday

– I went to hospital todat 

(See post about first time in Emergency Room)

– i am tired. i went to grandmas i went to winter guard show i did a good job i went to dinner with mom and doug and mom; s freind suzanne and her frien. i dance to wing it i am going to sleep now where has the time gone

– i ate alligator in new Orleans

– We having fun in Florida mrs h will be so jealos

(“Mrs. H. will be so Jealous” – there are quite a few of these. I did not include them all only because I could not find them all. Mrs. H. being jealous began 3 years ago when DC was in his last season of Challengers baseball and DC’s team was invited to Fenway Park for Challengers Day – All Kids Can. Mrs. H. had mentioned that her husband, Mr. H. was so jealous because he would have loved to go to Fenway. I don’t think DC really understood what “jealous” meant at the time, but he did know that he was doing something that Mr. H. wanted to do (I’ve since explained it to him many times in many different ways). Somewhere along the way Mr. H. being jealous evolved into Mrs. H. and it just went from there. I know as does she that he thinks jealousy is a good thing.

– I had turkey leg and turkey wing and bread. with mom and uncle smap and aunt lisa.
I like pie.
we going to lunch with uncle ted later after that.

– I want a turkey leg today

– phew.
I work at theater.
we went to the ball.
we ate dinner with uncle scamp and aunt lisa.
we went to camp Halloween party.

– We going to mountain of oz on Saturday.
We taking the airplane tomorrow have to get some rest.
I will see my family.
We going to dilly wood tomorrow if it does not rain have some fun

– I had fun time. Not New York City. Next week we going to New York City. Lots of food and book store

– Thank you thank you mrs .H happy happy Easter
I love jelly beans too

– I am happy to have my birthday
Today is my birthday,

– Mrs  H  will Be Jelous

(I don’t recall what she was so jealous about this time. That was all there was to the post)

– I love jellybeans too

– Have a Thanksgiving day. I don.t have work. i will have dinner With My Family. me and mom doug uncle scamp Aunt Lisa Erica I want turkey Leg

–  Mom fell down blood over her I did not take picture she is ok

(we were out walking our CharityMiles)

– I did good work at the theater to day I liked the dream girls show. I m not tired

– Happy Birthday to all
and to all a Good Wishes
Happy birthday DC
Tha;ts me

(It was his birthday. I think he was actually thanking people for the Birthday posts on his page)

– I am a ogre

– I am brave

(also storm related)

and my favorite…

– Happy 153 birthday doug

This ‘boy’ puts a smile on my face every single day…..

Snow-cation

2015/01/img_8236.jpg

Our preparation for the Blizzard of 2015 consisted of packing our bags and booking a hotel room. I wasn’t taking any chances. I wasn’t really concerned about this storm until I received a robo-call from our utility company warning of power outages. You might remember that back in October 2011 we lost power for 6 days.

The following year we had a few pretty big storms. One in particular dropped a couple of feet of snow on us. We did not lose power but we were trapped for 4 days.

We live on a cul-de-sac. Usually the town comes to plow the road, but only to the edge of the cul-de-sac. Later a smaller pickup truck comes to finish the job but it is usually somewhat of a wait.  When day 1 came and went, I didn’t think all that much of it. On day 2 the town announced that all of the roads would be cleared by the following day. Day 3 – nothing – I started calling Public Works to a “full voicemail” message and finally no answer at all. We were left trapped in waist-high snow with no one to contact as the rest of the town offices were closed. Finally on Monday (day 4) I called the police, only to find out that they had our street marked “complete”.

I reasoned that if the power did go out the hotel should have a generator so at the very least we would have heat. If they did not have a generator, at least we would be able to get out of the place and not be trapped in waist-high snow for days on end.

I explained this to DC, leaving out the “power-outage” piece of the story.
As you also may already know DC usually loves nothing better than a hotel room. I thought he’d be excited.
On Monday morning we packed up what we thought we would need for the next few days and headed out to my office. DC loves to come to work with me so he was thrilled.

2015/01/img_8231.jpg

He was a tiny bit anxious about the snow but nothing really over the top. Doug came to meet us at work so that I could follow him to the hotel which was just over in the next town (someday we will talk about my sense of direction or lack thereof).

We arrived at the hotel and checked in. DC was getting himself set up at the desk as he always does, when he discovered he had forgotten the cord for his laptop at my office. I won’t go into detail about the chaos that followed, just believe me, it was a tragedy. Doug went back to get it before the roads got worse and DC, while continuing to perseverate about his cord, kept himself busy with you-tube on his phone. One would have thought Cinderella entered the room when Doug came back with that cord!

IMG_8232

 

A couple of hours later he really began to get anxious, asking over and over again when he could go home. I realized that although I explained all of this to him and that this was certainly not the first time we left and stayed in a hotel due to an upcoming storm, he was still very confused. I thought about how different this ‘trip’ was from the last storm trip.

  • Our previous trip to avoid a storm (although I was sure we’d be sitting in a hotel room for 3 days) turned out to be much more of a ‘real’ vacation than just an  escape from the storm.
  • We packed, went to work and left from there – he didn’t get to go home first.
  • There was a travel ban in effect so there would be no dinner at a restaurant.
  • He was very concerned about going to his friend BB’s on Friday. It was on the calendar, you know.

I told him that I understood why he was a little bit confused. I explained that we were on a “Snow-cation”. We had come to the hotel so we didn’t get stuck in our house. I also explained that the hotel was very close to our house so he did not have to worry about going to BB’s house. We would be home before Friday (I wasn’t ready to mention a specific day for him to obsess over). I did finally have to mention the threat of losing power as another good reason to be “Snow-cationing”. He liked the word “Snow-cation” and the threat of a power-outage seemed to do it for him.  “Confused” became the word of the day. He used it anytime he needed the explanation again. It was comforting for him to have a word to use to explain his feelings and he felt better about expressing his confusion because I had told him that I understood. So, even though I had to explain our “Snow-cation” a few more times, he wasn’t as anxious about it.

He was able to use his computer, he read and edited some books, he went to the gym and went swimming in the pool. It was like a vacation (of sorts) to him. He was much better and a little less confused about everything.

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I’m not sure that he really understood how close to home we were. Even though it was only a 20 minute drive from my job. I think that the mere fact that we were in a hotel, meant distance to him.
He was concerned about his work and going to BB’s house. I did point out a few other places in this town that we visit often as a point of reference as to just how close we were to home, but I’m not quite sure he understood.

When I was relatively sure that all was clear, our street was plowed and we had electricity at home, I told him what day we would be heading home.

“My ‘Powers’ is back” – apparently all of the explanation I had given him only led him to believe that the power was out at home –
“Yes, DC, your ‘powers’ is back”

When all was said and done, we did not get as much snow as they predicted, some parts of the state did, but we ended up with a little more than a foot. Still a foot is a foot, and I would opt for the “Snow-cation” again and now that DC worked through his anxiety, I think he would too.

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.

vacaxmasday

 

(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” 

 

 

 

 

Knock Three Times

knock three times

DC and I attend many events, activities and parties. Many related to his autism or specifically geared to special needs children and adults, many are not. Although I do write about some of these events or trips, I certainly do not write about all of them as, in most cases, there is nothing significantly related to DC and his autism to write about. This event was not going to become the subject of one of my posts; it had nothing to do with Autism, there would be no princesses, no wizard, no costumes, no bookstore – just DC, my mother and I attending a fundraising event hosted by an old friend of mine.

After attending, I do feel the need to write about it, and write about it from the perspective of DC and his autism and how, at times people really do go out of their way to make DC comfortable.

An old friend of mine invited us to his annual fundraising event.  We could not make it last year, I can not remember why, but we were available to attend this year. We invited my mother to go along with us. Knowing full well that a sit-down-dinner at a table with probably 6 to 8 other people would be tough for him (and me), I tried, as I always do, to relate* the event to something of interest to him.

Tony Orlando, The Honorary Chairperson, would in attendance. Now, I am old enough to know who Tony Orlando is, but I didn’t know how to relate him to something in DC’s world. There have been many times where I am surprised by who DC does know. Usually I find out that they are “the voice” of a character  in one of his movies. I checked on-line to see if Tony Orlando might have been the “voice of” anyone DC might relate to. He was not. But then I realized that whenever we hear “Knock three times” on the radio, I make DC sing along with me. We’ve done it enough times that he does now recognize the song. It is also one of the few songs that DC does not say, “Mom, please STOP singing!”

First hurdle, relating this event to something in his world – check!

The event was being held in the midst of our Halloween party season. We had already attended one party and we had a few more on the schedule in the next few days. The event’s description indicated that it would be a 40’s style gala. I did not know what that really meant but I went out and purchased a 40’s style men’s hat to go with DC’s suit.

Second hurdle, turning the event into a “costume party” – check!

My greatest concern was the seating arrangements. As I talked about in an earlier post, there are not many things that we avoid because of DC’s autism, but we do try to avoid situations where we will be seated at a crowded table with strangers.  There are times when it can not be avoided, and we get through it, but if I can avoid it, I will.

I am usually not a big fan of eating in the dining room with DC. The tables are crowded with strangers. I get anxious because DC, although pretty well-behaved in restaurants, can get a little bit loud and chewing with his mouth closed does not come naturally to him, he has to be reminded continuously. When he does remember on his own, he feels the need to point it out to me throughout the entire dinner. He likes to bring a book with him whenever we go out to eat, but at these crowded tables, it is not always possible, there just isn’t enough room.

I was never of the mind that other people should be made to just accept DC’s behavior. Yes, if I am trying to manage the situation I can live without the stares and comments – but letting him do whatever he wants in the name of awareness, is not something I ever subscribed to. I do not believe that every behavior can or should be blamed on his autism – it is never used as an excuse.

 

I was told that I had to e-mail someone for reservations before purchasing tickets. I am not one that ever asks for special treatment or accommodations for DC, but since I had to send an e-mail, I decided I would just mention that DC tends to get a little bit anxious in crowds and if they happened to have a table that was not full; would it be possible to be seated there? I didn’t want them to go out of their way or change anything around, I just thought that if there was already such a table available, I would appreciate it if we could be seated there. It wasn’t a deal-breaker, we were going either way, but since I had someone’s ear I thought it could not hurt to ask.

DC has issues with many types of clothing, more-so now than when he was younger, but there is nothing better, in DC’s eyes, than wearing a suit. I suspect the fact that people tell him how handsome he looks is the number one reason – if you neglect to tell him just how handsome he looks, believe me he will bring it to your attention. Add the hat “costume” to his already handsome apparel and he was over the moon.

The very first thing DC noticed upon arrival was the sign for the “Grand Ballroom”. I had not thought of this aspect when looking for things relatable for DC. Not only was he going to see the ‘voice of’ “Knock Three Times”, while looking handsome in costume, but we were going to the “Ball”! How did I miss that one?

We were in the lobby with quite a few others who had arrived a few minutes early. We were told that we had to wait a few minutes as the staff was still in the process of setting up. DC was having the normal anxiety he has upon arriving anywhere. I always know it is coming, he just needs a little time to shake it off. The woman at the door noticed he was having a difficult time, and shuffled us into the ballroom. We were away from the crowd and he didn’t have to ‘wait”. He would have been alright waiting with everyone else, but it would have taken him longer to shake his ‘arrival anxiety’, so I was very appreciative that she let us in.

We found our table. It was the very last table all the way in the corner. It was perfect.  DC, who generally is not aware of anything around him in terms of pushing his chair out, getting up from the table without looking to see if anyone is coming or putting his coat on, arms flying outward to accidentally hit anyone that might be in range, had room behind him so he would not bump  into anyone else’s’ chair or knock anyone over when he got up from the table. There was no one behind us to bother if he felt the need to get up and dance. We were the only people in the ballroom other than the staff and a few people I assume were with the organization, for quite some time. Not long after, Tony Orlando came down the stairs. I do not like to bother people. DC has had his picture taken with many people over the years but it was almost always as a photo op. I just do not feel right asking people that are not there for that reason, to take a picture. My mother, had other ideas. She reached into her box of ammunition and pulled out the ‘Mom Guilt’….. “Oh you have to!” , “He won’t mind, he’s used to it” (that went on for awhile),  she stared at me for awhile and then resorted to the sideways glance, “Now, Vickie” in a tone I hadn’t heard in years, I finally gave in, only under the condition that SHE had to do the asking.

She went over and asked him and of course he said yes. I don’t know what else she said to him, but he was happy to do it.

First, he told DC that he looked like a movie star. You know that won DC over completely. I told him that his friend BB and Mrs. H will be so jealous. (That is usually DC’s line when we go somewhere that he is excited to be, but I decided to use it just as an added incentive to help move him out of his anxiety).  Mr. Orlando was very good to DC. They had a little chat and he told DC that they would be “friends forever”, and DC certainly believes they will.

I am officially adding Tony Orlando to the list of people I will always hold in high regard  for not only taking the photo with him, but taking the time to actually try to have a conversation with him and making him feel special.

 

When they began letting all of the other attendees into the ballroom we realized that we were the only people that would be sitting at our table. One of the women that I had e-mailed before we purchased the tickets stopped by to be sure we didn’t feel as if we were being isolated. It was a perfect table and we did not feel isolated at all. We didn’t expect them to go that much out of their way to give us our own table, but I was so glad they did. DC had room for his ever-present book, he was able to get up and dance behind the table when he wanted to. There was a window right there that helped to keep him occupied; he loves to stand and just look out the window. When it got dark outside, the window then served as his own personal mirror.  There is no one that loves looking at himself in a mirror or any reflective surface more than DC does, especially that night , while wearing his new hat.

Third hurdle – Not siting at a crowded table – check!

He enjoyed watching the ballroom dancers they had performing. At one point I did take him out closer to the dance floor where he could watch them (and follow along, pretty well, I might add) from the sidelines. He sang along with “Knock Three Times” and they even had pizza bites as one of the appetizers! What could be better!

Forth hurdle – DC’s very limited food list- check!

He had a wonderful (oops) ‘terrific’** time. Fortunately the ‘drop the chocolate, frosted, cupcake strategically down the opening of his jacket’ incident occurred toward the end of the evening; the smeared chocolate all over his shirt, tie and the inside of his jacket did not ruin the entire evening.

I did contact my friend, Joe the following day to thank him and to let him know how much his people went out of their way to make DC comfortable. I appreciated everything they had done.

They have also been added to my list.

 

*(That “Everything is Related” post I keep threatening to write IS now in progress and will be posted at a later date)

** “terrific” DC’s latest word, replacing “wonderful”.

“PLEEEEEEEEESE”

Please

(code word of the day – ‘Paper Towels’ = Toilet paper)

A few weeks ago, DC and I were on our way to a dance. I was planning on grocery shopping the following day but decided to stop at a convenience store to pick up a roll of paper towels – just as a little bit of back-up until I went shopping the next day.

I intended to pick up only one roll as I did not see any need to pay convenience store prices when I would be going to a grocery store the following day. It was no emergency, but I do know how quickly they seem to disappear in our house.

DC came into the store with me, hoping to pick out a treat. He went to the ‘treat’ aisle and grabbed his bag of  Combos – no surprise there. I went to the next aisle. We met in line at the register.

There was one person in front of us and another behind us. DC looked at the single roll of paper towels and said,

“No! Two! Please!”

He was very loud and adamant about it. Alright,  so he was nervous about running out of paper towels.  I did think that it was a  bit odd that he was so worried about paper towels, but not a big deal. We still had the one customer in front of us so I said “Okay, if you want two, go over and get ONE more, but you have to hurry”

DC went running over to the other side of the store.

This child, has THE best sense of direction of anyone I have ever met. He remembers how to get anywhere we’ve ever been. He always seems to know right where he is. He does NOT get this from me. I still get lost in the mall. For someone who has this type of directional sense, he just could not take direction to the paper towel aisle, even though there were only 3 aisles in the store and he had seen me go to the aisle only a few seconds before.

He was walking around, looking up in the air, trying to follow the instructions I was giving him from the line. At this point, the woman ahead of me had finished her transaction and not wanting to hold up the woman behind me, I called to DC and said “Never mind, we will get more tomorrow”.

The man behind the counter said, “It’s okay, I will just ring up an extra one if he really wants two” . He was ringing and helping to give directions to DC –  it was beginning to get ridiculous –  there were only 3 aisles, but I knew if he did not find the aisle soon he would become very upset and frustrated (he was already beginning to)  and this agitated  mood would carry itself over to the dance we were headed to. Just as I was going to leave the line to help him, the clerk said “I think he’s found them”.

Around the corner comes DC with not one, but an armload of at least 7 rolls of paper towels! I tried not to laugh and told him that we did not need that many, and to please put them back.

DC stood in the middle of the store, with his arms full of paper towels and yelled “PLEEEEEASE” “PLEEEEEASE” as if his life depended on it. He does not beg this much or this loudly when he wants me to buy him a book or movie. I told him to put them back but he just stood there, arms full yelling “PLEEEEEEASE!”

The clerk was now laughing, not at DC, but at the sight of him standing there with so many paper towel rolls.  The poor woman waiting patiently behind me said “He sure loves his paper towels, doesn’t he?”

“Yes, apparently, he does today.”

I had no idea what was in his head or why he HAD to have them right then, but for some reason they were very important to him in that moment. I promised him that we would get more the following day at the grocery store (and we did), so he finally put them all back except for the additional roll I had agreed to earlier.

He was still out of sorts when we arrived at his friend’s house, but fortunately, over it by the time we got to the dance.

I suppose, still, after all this time,  I do not always know just what is important to him or why it is important at any given time.  Just when I thought I’d be adding paper towels to his “Odd Gift List” ; the following day, in the grocery store,  he didn’t seem concerned whether we bought more or not, but for some reason, the day before, it was very important.

 (After thinking about it – a lot – because that is what I do;  and writing about it, because at times it helps me to figure things out* and after just writing that very last paragraph, the light went off in my head – I am wondering if it wasn’t the paper towels at all, just the fact that I was only buying one at the time and at the grocery store, we always buy a package? “Buying more tomorrow”, doesn’t make a lot of  sense in his world – at that moment in time, we were just buying one and this had never happened before)

**I was told long ago by one of DC’s first teachers, Mrs. T, that, with Autism, not all things can be explained and I might just drive myself crazy trying to figure everything out. This is true, very true, but it does not stop me from trying…..