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…..

If wishes were horses……

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

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

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

"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.......

#TheseAreThePeopleInChargeOfMyKid

Be sure to read the next chapter in #TheseAreThePeopleInChargeOfMyKid about  sunscreen and bug spray "There is extra Sunscreen in His Back Pack"

Tales from the Day Program – ALL

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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

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

#TravelingWithDC: The Way Home, Easter, Mystic and a Severed Arm

Our annual trip to the Cape fell on Easter weekend this year. My friend's, mother's birthday bash was on Saturday night so we were still at the hotel on Easter morning.

Fortunately, the Easter Bunny knew that we were away and delivered to the hotel instead of at home.

Other than any gift he might receive, a holiday in DC's mind means "out to eat" so this would be the mission for the ride home.

The plan was to stop off in Mystic, one of DC's favorite places on the way home. We've spend a few Easters in Mystic, so we knew that there would be some restaurants open even on the holiday.

I have a favorite place for dinner (S&P Oyster) but DC has an entirely different favorite restaurant (Steak Loft). DC, as always won won the battle for Easter dinner.

As I said in my previous post, this weekend was not an official "Looking Around Trip" but Doug, when he knows we will be driving through a particular area, researches Road Side America for odd stuff to stop and see. We've seen some pretty odd and some unique things during our "Looking Around Trips".

Listed in Mystic was the severed arm of some Saint. My question of why did someone keep the severed arm of this Saint, never really got answered, but okay, we're here. Why not?

The listing said that the arm was located on one of the islands off Mystic at or near a Yacht Club. In my mind, like the island we had to drive through to get to the second island, this would be a residential area with houses and the Chapel. It wasn't. We did not read far enough into the description:

"On Ender's Island, off the coast of Mystic (accessible by car), there's a religious retreat run by a Catholic order known as the Brothers of St. Edmund, founded in France in the 19th century The order takes responsibility for the relics of St. Edmund Rich, a 13th century archbishop of Canterbury whose body has been a pilgrimage site in France for centuries."

I, even though I am not religious at all, felt really weird walking around this island looking for a severed arm, but it was listed on Road Side America, so everyone must do it, right?

It really is a pretty place and I assume that later in the spring and summer when every thing is in bloom, will be even more beautiful.

We looked all over the island and could not find it. Doug, who really does NOT have a fascination with the morbid, was intent on finding this thing, just because it was listed and if it was listed, it should be there.

We were not the only people looking around at everything on the island, so Doug went over a woman who looked like she may have been a Grandmother showing her family around the island.

At this point, I stepped away and pretended I did not even know him because there is really no tactful way to ask where a severed arm might be found. In my head I was imaging him saying "Excuse me, we are only here to see the severed arm. Do you know where it is?" (of course, he didn't ask that way, but I could not imagine any other way of asking that could make that question sound good).

She was very nice and did not seem put off by his question at all. She said that she hadn't been to see it herself recently but told him where it had always been (in the chapel that we had already been inside twice, but did not realize that there was a separate alcove in the back).

We found it. DC was busy looking around and was not really paying attention to the arm, which at first, second and third glance was not really recognizable as an arm at all.

Yes, I did feel weird taking a photo of it, but apparently that is what one does when one happens upon a severed arm.

So anyway, severed arm or not.... the island itself is worth a visit. It's really pretty and different. It's not a very big island, so it does not take long to look around the entire place.

Worth the stop.

And, no... there was no "sleeping picture" taken.

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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