Wednesday, June 21, 2017

The Sun Will Come Out Tomorrow #Autism #Storms



Over the last few years, one of the newer developments in DC's storm perseveration is having to watch and yell "Storm Go Away".  It used to be he would get in storm position on the couch with his book or his iPad (this is not to say that he actually read or watched anything - he was busy scripting about the storm, over and over and over again, but the intent was there). 

Facebook From Facebook Statuses May 31, 2017
"He's starting to get anxious about the thunder (that I don't even hear yet). He's been to every window and door in the house and then broke into song. 
( I just now heard the first boom of thunder and "Vickie!!! COME HERE!!!) #TheSunWillComeOutTomorrow "



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Yesterday I switched the channel to news after DC left for work for the 10 minutes I had before I had to leave for work. I forgot to switch it back when I shut the TV off.

When we got home, and switched the TV on, DC who wasn't even in the room... started.

"Mom! Change the channel!"
Pointing and staring
"Change the channel"

It just so happened that there was something on that I wanted to see so I told him I would change it in a minute.....


More pointing, staring and standing right in front of it. "No News! Change the Channel!"
And even more pointing and staring....


We had been out at a camp meeting so it was close to 8 pm. I told him he needed to go up and take a shower. He went upstairs. I got the water to the correct temp for him and I was in my room folding clothes (I still stand around close to the bathroom the whole time he is in the shower in case of a seizure).


He took his shower, got out and I heard him "Mom, DC is very nervous" 


I had forgotten about the TV and really could not even hear it upstairs.


What are you nervous about?


"Change the channel! No news! No 'Wea-ver'"


Me: Okay, I am going to change the channel right now.


Those of you that are new here probably do not know that I am not allowed to watch the news without bringing about total anxiety.. In DC's mind, the news means the weather and watching the weather can only bring a storm!


I just got home from work today and it is looking pretty shaky outside. It's been so hot, I am sure whatever is coming will include Thunder and Lightning ......


This will not be any fun at all because last night's anxiety was NOTHING compared to what is coming.
And yes, I do understand now that it will be all my fault for turning on the news yesterday...... Completely my fault...


#ItsAllMyFault #NoStormToday #WhatsMySuperPower


From FB Statuses 6/13/2017

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On Monday night we had a pretty good storm here, complete with wind, torrential rain, thunder and lightning.
DC, in-between yelling for me and telling me he was "Nervous", "Scared" and the many other things he will repeat over and over again, started the standing in the doorway and running to the window routine.
The singing began; "Tomorrow", of course.... but then surprisingly enough, he went into "Here Comes the Sun". 
I was shocked because DC really does not know all that many songs that are not based in Disney. 
Me: DC, how do you know that song?
DC: (stops singing)The Parent Trap (resumes singing)

Even in the midst of a storm, he can still come up with something relating to Disney.

It was nice to switch things up a bit....

That would be the Lindsay Lohan remake for those of you who are not versed in all things Disney.
  

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More about the 'wea-ver' 

The Struggle is Real - More about the 'Wea-ver"





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This blog is used for short posts and for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time

Wednesday, June 14, 2017

Two years ago today..... #Seizures



A not-so-happy memory





Face Book Memory - Two years ago today. 

Three hours after posting the status above, DC had his first seizure in the hotel lobby. 

Thankfully the staff (and Doug) knew what was going on as while he was seizing upright, I did not know what was happening, until he was on the floor and continued seizing for more than 4 minutes.

Four minutes is an eternity when you are helplessly watching as your child seizes.

Seven weeks later he would have another of the same length at camp. 

The only thing worse than witnessing your child having a seizure of this magnitude, is not being there with him when it happens.....

He is on medication now and so far, so good.

Even though I know there is no schedule or rhyme or reason, I am still feeling a bit of anxiety today...

Facebook Statuses 6/14/17

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"He is on medication now and so far, so good."

This is not to say that I still do not stand right outside the bathroom door when he is in the shower just in case.

This is not to say that the padding and corner guards all over the furniture have been removed (some are quite worn in some spots, but they have not been removed.

This is not to say that he does not wear a protective baseball hat to work every day.

This is not to say that I do not remind him NOT to lock the door (after many years of teaching him to lock the door) in a public restroom so I can get in if there is a problem.

This is not to say that I do not panic a bit when he says something odd or not like him or when he is overly happy for any length of time.

This is not to say that I still don't panic when my phone rings when we are not together.

This is not to say that I have not thought about it every . single . day since.

This is not to say that I don't know that medication works until it doesn't.....

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Other Posts:


In an effort not to drive my son off the deep end…..



Things I have learned, things I have noticed and things that might just be in my own head


The Accessories


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This blog is used for shorter posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time

Saturday, June 3, 2017

The Phone and The Routine




Memories of the New Phone

Did not think that this would go well in any way, shape or form. I started him out with a Tracfone because I was sure he would lose it or break it.... Once again, he surprised me. He did not lose it, he did not break it and he remembered to take it with him every day (in his pocket - I might add. He hates to have anything in his pockets!) - AND He remembered to call me every day when he was leaving school. Six years later, he still "works from a script" when he calls and the spontaneous phone calls are still not there; but - the bottom line is that HE DID IT! (FB Memories - 6 years ago today)

FB Statuses 6/10/17

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Reporting to Mom
DC attends an after camp program once a week on Tuesday nights. The program also runs on Thursday nights but it's difficult getting him there. 
Both DC and *Salli were invited to attend Thursday night this week. It is Christmas week at the program. They had decorated the tree on Tuesday night and the director wanted them to be there for Christmas dinner on Thursday. 
I had some appointments early in the day and since Thursday is the day I have to leave work early to be home for his transportation, it didn't make sense to go in, so I scheduled the day off. This worked out perfectly because I could go and pick up DC at his "job" and drive him to camp.
DC calls me everyday when his transport arrives to pick him up at work and again when he gets home (Mrs H is already there). He is so programmed to do this that there have been times when he has called me to tell me he was home while I was in the next room.
We were almost at camp when DC pulled out his phone. I didn't think much of it. I thought he was going to look at his friend's pictures on Facebook.
Then my phone rang:
Me: Hello
DC: Hello Mom, I am going to camp nowwwwww.
Me: I know! I'm right here next to you!
DC: Great! (Pause) *Salli's mother *Tonya will pick me up.
Me: Yes, Salli's Mom will pick you up.
DC: Mom will be home. (I'm not allowed to go anywhere in his mind, when he is not home. He likes to make sure I am staying home and will be home when he gets back)
Me: yes I will be home.
DC: Goodbye Mom. See you later.
Me: I'm right here.
DC: see you later!
He hangs up.
#ThereIsNoDetouringFromTheAfterWorkRoutine


FB Statuses 6/29/2016

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Things I should know by now (Ornament Hunting - Clues)




Ornament #2 in the 2015 ornament hunt. The clue: "Oh no! It's time to call the Dr." - After first telling me he was calling 911 (yikes, I really have to think more about the clues I'm giving) - he went to the phone and found the Dr. 911, not necessary...

FB Statuses 12/12/2015

I am home 'again'

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. Don't hang up!
DC: Okay (He hangs up).
and second later the phone rings
DC: Hi Mom, I am home again!



FB Status 4/16/2015  (Before Seizures when he was trained (years and years of training) to be able to be home for 10 minutes before his aide arrived)

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I Sorry Steve.
So DC was having a "moment" for reasons that I just don't really know, when his Best Buddy, Steve called. DC, of course is always happy to hear from Steve but he was just as I said, having a moment.
After I talked to Steve and hung up, I told DC that he had been very rude.
First he went back to the phone picked it up and said "I'm sorry Steve" - I told him that Steve wasn't there anymore.
Next DC presented me with this:
(yes, I did text it to Steve)




FB Statuses 2/26/17

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Other Posts on the Subject:

Don't forget to call Mom!

Hey! That's not in the Script!


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This blog is used for shorter posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time

Sunday, May 28, 2017

Band-Aids: We love our Band-Aids

It occurs to me that people new to my Facebook Page, may not be aware of DC's obsession with band-aids. He loves them and being someone who really never gets hurt, he never has the opportunity to legitimately wear a band-aide, so he began making up reasons.

I wrote about it a few years ago on my "official" blog, but the obsession has grown more since then. Now it is not asking for a band-aide for some phantom injury - now it is asking for one, two, three BOXES of band-aids to cover his arms with - while still using a phantom "itch" as an excuse...

Facebook Statuses:

I cut my finger and thankfully "The Keeper of the Band-aids" had one he could spare. Only one and HE had to put it on. #bandaids  - FB Status


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Apparently Easter was two years ago today - sporting his Easter bandaids, which are not to be confused with his birthday, Christmas or every day bandaids - FB Status



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4 years ago today. We participated in a cycling challenge that helped to support DC's Summer Camp. His camp's designated hour had a Michael Jackson theme. DC (complete with Birthday Band-aids that he received at his party the night before) sported his Michael Jackson hat and TWO glitter gloves - because wearing only one was simply out of the question..   #Bandaids - FB Status



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When he runs out of Characters, he is willing to go old school - basic. #bandaids - FB Status



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Books and band-aids make a successful day trip - FB Status



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Just a boy relaxing with his pile of band-aids after a busy day... - FB Status





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The first wave of "birthday band aids" have been applied.. Not to worry, I have inside information that there may be more on the way.... #autism #bandaids - FB Status



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This is beginning to get almost as expensive as his bookstore obsession. I'm going to have to limit him to one box per week. He is getting pretty creative with them though... #bandaids - FB Status



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And the band-aids from his shopping list - he used every last one - FB Status 




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#TravelingWithDC  jelly beans and a large array of band aids all in one place — at Freak Lunchbox Saint John. - FB Status 



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Second wave of birthday band aids arrived today (two boxes missing - he's already wearing them) - FB Status




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And a Third wave of Birthday Band-aids (People just know what he likes) 



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Two new boxes of Band-aids arrived today with a belated birthday gift. I think he used all of them already. - FB Status




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But then, of course there are the "regular" uses #bandaids #autism #NoInjury #JustLikesBandaids
- FB Status



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#fbmemories 2 years ago today - DC came up with yet another use for his precious band aides - FB Status



Not that I would ever advocate putting a band-aide over anyone's mouth... but the thought process and just the mere fact that he came up with that in his head was pretty funny...

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From his "movie-themed" summer band aide fashion accessory collection - FB Status





I think you've got the point....




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This blog is used for shorter posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time


Friday, May 26, 2017

"Maybe It's Allergies?"



It is allergy season and as much as I have been suffering, DC does not seem to be (so far, knock wood) all that much. He had a few days (so far, knock wood) of coughing and sneezing but compared to last year at this time - it's been cake ....

Did somebody say "Cake"?

From last year: The boy who will never admit that he is sick, was doing a lot of complaining.







DC was not the only one having a hard time, though. Some were having just as hard of a time understanding it....

Facebook Status from This Time Last year....

DC has really been suffering with allergies for more than a week. 
I have written notes and called to let his program know that the coughing and sneezing is due to ... 
his allergies. 

He was even absent one day last week because he didn't get any sleep and I explained that it was due to.....
his allergies

The following day after he was out due to...... 
his allergies, 

I received this note from his program:

"Dc has been coughing" 

I replied to the note:
Yes, as I said before, he is having a very hard time with.... 
his allergies
The allergy med is helping his nose but hasn't done much for the cough yet"

Yesterday (it had rained) I received this note from his program:
"DC was much better today. Hopefully the rain washed the pollen off the trees" 
(Me (thinking) Pollen=Allergies - I think they've got it!!!!)

I spoke (thought) too soon...

Note from Program Today
"DC has been coughing and sneezing very hard during lunch today"
and wait for it....


"He might have allergies."

sigh.......

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This blog is used for shorter posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time

Wednesday, May 24, 2017

His Dream Job

If DC could choose his dream job, it would be one (or all) of three things; Working in a Bookstore, Working at Disney (or anything having to do with Disney), Working at a Theater (plays and musicals) - 4 Years ago today, DC and his Job Coach headed off to his first day of volunteer work at the theater. My Broadway Baby got his wish....

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4 years ago today - FB Memories 
DC and Mrs H on their way to his first night at the Theater. He's a little anxious . If we can get through tonight he'll be fine for the rest. (He's very excited too!)



3 years ago - Facebook Memories 



I shared a photo from 4 years ago of DC's first day at his volunteer job at the theater. (Poor Mrs. H keeps getting her face blurred because I never get to ask her permission ahead of time :) ) 
Three years ago, Doug, my Mother (Grandma) and I went to see a production of Hair while DC was working the show (with his job coach) and got to see him in action.

Full disclosure; I screwed up when I bought the tickets thinking DC would work the afternoon performance and we would all go see it at night. BUT, I bought tickets for the afternoon show by accident while he was working and really didn't realize it until the day before (after I had been annoyingly belting out "Gimme a Head With Hair" at him all week) - No worries, he did get to see it once the crowd was seated and his "greeter" duties were done until intermission.

DC was very excited to see us at his job, but as excited as he was - first things first and in the correct order - no hugs were given out (even for Grandma) until each of us received our programs and each, an "Enjoy the Show". #autism #AllThingsInOrder #DontMessWithTheSystem


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Although he loves his volunteer job, he does not get to work it very often. It is difficult scheduling around Mrs. H's, mine and DC's schedule. He only had two shows booked this season (Feb-July). Mrs. H called to say she was ill and could not make it for his second and last show of the season. Mrs. H has been with him at the Palace from the beginning and attended all of the training sessions. Being that this was his last show (and only the second) of the season, I did not want him to miss it.

I emailed the coordinator and asked if it would be all right if  Doug accompanied him even though he's not been through the training. She replied that it would be fine and that DC would probably be able to tell him exactly what to do. I was sure he would - exactly and in the proper order.


Doug, the man who dresses better to play golf than to go to work, was pouting about the white dress shirt and the black pants (they were blue - he thought he'd get that by me) and - horrors - dress shoes!


DC was anxious and acting out because Mrs. H was not there and he has been obsessed with Mrs. H being sick since Monday - I've heard about it, I don't know how many times a day.


At one point he crossed his arms and said


 "I" not going!


"Follow me around" (He did not want Doug to follow him around??? This statement was never made clear)


I told him that he would have to teach Doug what to do and that seemed to make him a little bit happier, but not much..



On his way out the door - in a final act of defiance, he grabbed his "Into the Woods" CD, which had been banned from Doug's car quite a while ago because he just could not take listening to it anymore...
And off they went, Doug walking, shoulders slumped, down the sidewalk to the car, with his dress shirt, black blue pants, dress shoes and "Into the Woods" to work at the theater....






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This blog is used for shorter posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time