Monday, April 16, 2018

#TravelingWithDC First Stop; Arlington and Washington D.C.





At the time of this trip (June 2017), I was bombarding my Face book page with so many pictures; I thought I'd wait awhile before writing about it - just to give everyone a break.

We went on a cruise a while back and after DC asked and I was made to recite the entire schedule for the week probably 153 times, I decided to try something new. I wrote it all out and posted it as wallpaper on his phone so he could read it anytime he felt the need to ask me to recite it. It actually worked. Instead of asking, he looked at his phone and recited it (probably over 152 times) out loud. I still had to listen to it, but I did not have to recite. 




I decided to try it again for this trip after his questions started to get to me; it did not work so well this time...... 

sigh.

Moving on... We arrived at our hotel in Beltsville well after midnight. I was already feeling overwhelmed with trying to schedule everything we wanted to do in the next 7 days and also looking forward to getting some sleep that night and taking our time in the morning before heading to Washington D.C.

Upon checking in to the hotel:


- the hotel that we had made reservations for quite a good long while ahead of time.... - the hotel that could have called us at any time before we arrived...


The hotel (yes THAT one) told us that they would be turning off the water at 9:00 am the following morning for some sort of maintenance! It was after midnight and at that point much too late to find another place.

I was not looking forward to having to get up, showered and out by 9:00 am.

Should we just get up, get ready, have breakfast and go?
Should we just get ready before 9 and hang out (as originally planned) with no water?

If I was not already feeling overwhelmed, it probably would not have been such a big decision, but I was tired and crabby so we just went to bed with no plan for the next morning.

Morning came, DC also pretty crabby, was angry that the razor I packed for him was the "wrong color blue". After the razor fiasco wound down, he went on to yell/order "I want breakfast" over and over again. He has been known to "mention" his wants over and over again, but yelling orders at me is just not him. 

Through it all (did I mention they only gave us two towels and time was running out? Should we make due with the two towels and hand towels or should we wait for someone to bring more towels?) I may or may not have been giving Doug conflicting instructions... 

So Doug, in the screechy voice he only uses in these instances when I expect him to know what I want to do even though I, myself do not know what I want to do said/yelled "I don't know what you want me to do? You're not making any sense."


After all of my hemming and hawing, we managed to get ready by 9, took DC downstairs for breakfast and were on our way.

(BTW, these #$*^ heads decided at some unknown point, not to shut the water off at 9, but I guess decided to keep it a secret. By the time we realized, we had already had breakfast and DC knew we were leaving, so there was no turning back)

Next stop Washington D.C and Arlington.

We visited D.C. around 5/6 years ago (maybe more) so we were only stopping to see the couple of sights that we did not get to see the last time. The Martin Luther King, Jr. Memorial was still under construction at the time and due to Rolling Thunder, we did not get to Arlington. We could have gone after the procession ended,  but it was our last day there and did not want to wait due to the long ride home.

One thing that I did take away from this entire trip was that I am no longer "one with the heat".
It was HOT!

First Stop: Arlington.











It was hot and DC was bored, but we were able to make our way through more of it than I thought we would. I would like to go back again some day in the spring or fall.

Next Stop: The Martin Luther King Jr. Memorial







Quite honestly, after Arlington I did not think DC would last very long here. 

Doug was walking the wall of quotes and DC and I were standing at the entrance/exit because he had already said that he was ready to leave.

While we were standing there waiting for Doug, DC noticed the quotes on the wall. He then proceeded to walk down the walkway to read each and every one of them!







"Darkness cannot drive out darkness, only light can do that. Hate cannot drive out hate, only love can do that"

I get a little bit teary-eyed every time I watch this video.

I am glad we finally got to see the completed Memorial.

We only scheduled the one day in D.C. so after we left the Memorial, we made our way to Virginia.

I promise you that the rest of our trip was not as crabby (but it was certainly HOT!)

To be continued.....

*****
This blog is used for shorter posts, off topic posts, for longer Face book statuses and apparently complaints about dentists and doctors :) . Please visit my official blog site at: Taking it a Step at a Time 
 
 




Friday, April 13, 2018

10 things I hate today

The 10 things I hate more than anything.


This is going to be easy and maybe a little nit-picky. Allergy season has just reared it's ugly head and I am crabby (I have a much better word, but I will try to be nice). 
Ten things I hate more than anything else?  Maybe not. Certainly 10 things I hate more than anything else recently...  some more shallow than others and in no particular order.

1. Allergies: Mine have gotten worse over the years and nothing seems to help. I tried Zyrtec last year but after reading Kenya's post, I stopped taking it immediately. Because we had nothing but cold and snow (3 times just last week) I was not ahead of the game and in a preventative frame of mind...
Now I am sure I will die before the Flonase starts to work.

2. The Group Text: The friend that texts you and 28 other people at 7:00 AM just to say "Happy Whatever Holiday" it might be - There is a way to opt out of the 28 replies (or how ever many chose to reply through that text instead of  replying via a NEW text to just the sender) in Facebook messenger, but if it's just a regular text, text - there is no way to do that. 

3. Hot Flashes: I am DONE. This is cruel and inhumane.  12 years of no sleep. 12 years of being drenched in sweat 24/7. Thousands of dollars spent on cooling pillows, blankets, ice packs, portable fans. No Sleep - did I mention that? I NEED Sleep!

4. Volunteers: People that volunteer for the wrong reasons - especially with my son and others like him. I originally gave this particular volunteer the benefit of the doubt and thought that maybe she was shy. But after looking at the whole picture.... no, that wasn't it at all.
I just wrote about this last week, so this is just an excerpt:

A shy person would say hello. A shy person might maybe look in his general direction once in a while. A shy person would at least acknowledge his existence. She does none of those things.... not one. If you were there to see this, you would understand that this is NOT just a case of her wanting to spend time with her friends.She treats him as if he does not exist, as if he is not a person.You have to wonder what motivates her to even volunteer with this team.Common courtesy would motivate a person to at the very least,  say hello. Apparently some people do not see our children as real people. This is a problem.
5. Inspiration Porn: (From that same post)
Doug works as a job coach in a transition program. Like the program that DC attended through our school system (18-21) but located at a local college, the program Doug works for is also through that town's school system and is located in their local college. Doug will also volunteer his time to DJ dances for his students.A little while back, while on our way to one of DC's events, I asked him how the dance went the night before. He said that it went well. Then he began telling me that one of the college's sports teams had to do some community service hours - I thought he was going to say that they volunteered at the dance, but no.They opted to have dinner with some of his students in the cafeteria before the dance. Basically, they took 45 minutes < Insert Sarcasm Font> out of their busy day to have dinner in the cafeteria with these kids <End Sarcasm Font>.So........ having dinner with one of our kids is now considered community service???I wonder if there will be a video?

6. Meatloaf: We talked about this a few weeks ago - Hate it!

7. Weight: Mine! We've talked about this as well. Some of the difficulty in losing any of it may swing back to the whole Hot Flash section, but it is never not on my mind. I am uncomfortable all day, every day. I have gained and lost weight plenty of times over the years but never anything like this. I have not even come close to anything like this since I was pregnant with DC when it was like someone gave me a license to eat. I gained the whole 25 lbs. allowed for the entire pregnancy in the first 4 months. By the time I was through, I had put on 60 (maybe 70/80) pounds. Now, in my defense - when I was pregnant I worked for Baskin-Robbins in the office in the plant where they made and shipped the ice cream. The production guys would actually ask me what flavors I wanted in the lunch room every day (Be nice to the pregnant lady). There is NOTHING like the tubs of ice cream that have just come off the line. Nothing. Trust me.
I have no excuse this time around except "Oldness".


8. Telemarketers:  (I was just reminded about telemarketers so this list item has been edited) The only people who call on my landline are my mother and DC's father, every other call is a telemarketer.
I am being traumatized by my phone. My cell is worse and I feel as if I have to answer because I have a child with autism and a seizure disorder. How could I not answer?
The worst thing about these telemarketers is that they call my son's phone a good twenty times a day (no exaggeration). He barely understands how to use the phone and these people are just proving to confuse him. He gets so many calls and texts that I am sure that his number was on a list that was sold by our provider to these companies. I had to put his phone on Do Not Disturb, which was the last thing I wanted to do because I want to be able to reach him when I need to. There is a setting to allow calls from the people in his contact list but what if something happened and I had to call him from another phone or something? Why does something as simple as a telephone have to be this difficult for him?

9. The Pile: The pile of mail and forms and things that I have to fill out or things that I'm not sure that I should throw away. Fortunately there is only DC and me that have to sit at the kitchen table or we'd have to get a bigger table. (It's not just the table that is cluttered. You can not imagine how much paperwork one has to fill out and save when your disabled child becomes an adult. I don't know where people put all of this stuff.)

10: Shredding: Rather; emptying the shredder. This may circle back to the piles of mail on my table. I will go to great lengths not to have to empty the shredder. 


Bonus: I also hate how I can not spot my own typos. When I proofread, I find myself not reading what I typed but "reading" what I know it is supposed to say instead of paying attention to what it does say. I miss a lot. Since I wrote this rather quickly and do not have time to proofread even once, I am apologizing now... 

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This has been a Finish the Sentence Friday Listicle. 10 things I hate more than anything hosted by Kristi Campbell of Finding Ninee and , Kenya G. Johnson of Sporadically Yours.
*****
This blog is used for shorter posts, off topic posts, for longer Facebook statuses and apparently complaints about dentists and doctors :) . Please visit my official blog site at: Taking it a Step at a Time 
 
 



Sunday, April 8, 2018

Attention Awareness, you missed a spot

Two in one weekend




Doug works as a job coach in a transition program. Like the program that DC attended through our school system (18-21) but located at a local college, the program Doug works for is also through that town's school system and is located in their local college. Doug will also volunteer his time to DJ dances for his students.

A little while back, while on our way to one of DC's events, I asked him how the dance went the night before. He said that it went well. Then he began telling me that one of the college's sports teams had to do some community service hours - I thought he was going to say that they volunteered at the dance, but no.

They opted to have dinner with some of his students in the cafeteria before the dance. Basically, they took 45 minutes < Insert Sarcasm Font> out of their busy day to have dinner in the cafeteria with these kids <End Sarcasm Font>.

So........ having dinner with one of our kids is now considered community service???

I wonder if there will be a video?

Awareness....... FAIL!

******


DC is a participant in a few sports teams. He had an event last night. As with most of the teams he participates in, each participant is assigned a "Buddy" who carries their equipment, directs them to what they are supposed to be doing and where they are going and helps them out during the game.

DC has a buddy who does not acknowledge him at all. She doesn't say hello, she really does not even look at him. I thought maybe she was just shy at first, but she has no problem talking to her two friends (who are also ignoring their participants for the entire time we are there).

DC knows he is supposed to stay with his buddy, so he got a little bit nervous when she and her two friends walked through the halls on the way to the gym in the front of the line and DC was way in the back (they are supposed to walk with their buddies). Later in the "holding area" where they were waiting for their turn, she stood with her two friends, back to DC who just stood there alone - the entire time. Twice I had to go and move DC over because she had his equipment over her shoulder and I was sure she was going to hit him in the face with it each time she moved. I thought maybe she would get the hint, but she did not. She never even acknowledged he was there.
This is not the first game where I noticed this and Doug (who notices nothing - his words not mine) actually brought it up to me more than once.

When it was finally their turn to play, they went out to the gym (no, she did not walk with DC), had their turn and then........ she just walked out of the gym leaving DC standing there in the middle of the gym by himself. Fortunately I was close enough to get to him before he ended up in the middle of the crowd at the doors, where if he got that far, I would still be looking for him now.
She did not even turn around to see where he was - she just left.

I did report it via email to the coach (after we left the building because I just did not trust myself to be civil to this girl and just wanted to leave the area).

After I got over the whole safety issue of him getting lost in the crowd (I have nightmares of him getting lost in a crowd - always), I began to realize that this was not about her being shy, this was not about her not knowing what to do - this was about her treating him as if he were not a person.

A shy person would say hello. A shy person might maybe look in his general direction once in a while. A shy person would at least acknowledge his existence. She does none of those things.... not one. If you were there to see this, you would understand that this is NOT just a case of her wanting to spend time with her friends.

She treats him as if he does not exist, as if he is not a person.

You have to wonder what motivates her to even volunteer with this team.

Common courtesy would motivate a person to at the very least,  say hello. Apparently some people do not see our children as real people. This is a problem.

AWARENESS: Fail!

*****
This blog is used for shorter posts, off topic posts, for longer Facebook statuses and apparently complaints about dentists and doctors :) . Please visit my official blog site at: Taking it a Step at a Time 
 
 

Friday, March 30, 2018

Weight, Frosting, Birthdays: You have to be a little bit impressed.





(((off topic; aka - not autism related))))

My birthday just passed. I had the day off from work.

People seem to be under the impression that I do not like my birthday because I always take the day off. I do take the day off to avoid the "forced birthday cake where everyone stands around the staff room uncomfortably", but I also take the day off because I LIKE my birthday and do not want to spend it at work.

I have never been a fan of cake (frosting is another story) but still we are required to have forced, stand around uncomfortably in the staff room cake - every year. I do not eat the cake, but it doesn't matter - it is all about the cake. Even as a kid, I was never a fan of sitting there, having everyone staring at me while singing "Happy Birthday" - There are many home movies that still exist of me crying - cake in front of me - while people were singing.

Over the years I have, many times asked for no cake. I was told I was depriving the rest of the staff of cake. Since it is all about the cake and not really about my birthday, I started instructing the person in charge of cakes to have the cake on my birthday when I was out of the office.

This tactic worked for a few years. This year, I was scheduled to be off but a Nor Easter hit, so no one made it into the office that day.

Because of the storm, the following Friday was declared "Free Lunch Friday", and lunch was purchased for the staff. My birthday was listed among the reasons for this lunch (St. Patrick's Day, College Basketball, Ides of March were some of the others). Much like my mother making meatloaf every year for my birthday dinner (I HATE meatloaf. And NO, it is not "just like hamburgers"), they ordered barbecue. I hate barbecue. I also hate things that are smoked because to me, if you smoke something, it ends up tasting like ham. I hate ham.

All of this started me thinking about all of the foods that I do not like - and there are plenty.
It also made me realize that it is simply amazing that I have been able to gain as much weight as I have managed to gain when you look at all of the foods that I just will not eat....

You HAVE to be a little bit impressed by that.

Now.......

About THE Frosting........

After having oral surgery I went searching through my refrigerator and cabinets for some more exciting “soft food” when I came across a can of frosting in one of my cabinets.
Why did I have a can of frosting?
Beats me!
My baking skills leave a lot to be desired.
How old was this can of frosting?
Your guess is as good as mine – but in my mind, it fell into the soft food category; so…. okay. Score!
Finding this can of frosting brought me back to when DC was little. I always had a can of frosting in the refrigerator. It was a staple.
I am not a fan of cake, really – but frosting?
“Just the frosting, please.”
Never trust a person who says the cake is delicious but the frosting is just “too sweet”.
Really?
Move away from the cake… just hand it over.
I have it on good authority that THE second best thing for a frosting junkie is access to leftover cake, preferably refrigerated but room temp will do.
Leftover cake in the privacy of your own home gives license to slice (not scrape…. slice) off all of the frosting around the sides and of course the top so there is just a very thin almost just crumb-like layer of cake with the sliced frosting.
Be warned! There will be complaints that you are leaving everyone else with naked cake. What is everyone else supposed to do with a naked cake?
Donate it to the “frosting is TOO sweet” people or throw it away. Who cares?
It’s frosting-less cake.
Nobody wants it, but feel free to let it sit, naked in the refrigerator for a few more days for appearances sake to sort of console yourself into thinking that you left some for somebody else. (You also rendered it useless for those you were so nice to leave it for. But letting it sit there creates the illusion that you do not in any way understand that you have ruined the leftover cake for everyone else)
The frosting that I always had on hand when DC was young and replaced as soon as it was gone, was MY frosting. It was there just for me when I decided a spoonful of frosting was in order. (of course I was much <MUCH> thinner way back then).
Some people keep a stash of chocolate. I kept frosting.
That along with my (MY) own jar of Peanut Butter for those occasions when a spoonful of Peanut Butter was the craving, were always present in my refrigerator. I still hide my own jar of Peanut Butter – because some things do not change.
DC did not know about this frosting that I found in the cabinet, so I declared it, in my head to be mine. My mouth had been ripped to pieces. It had been a week and a half of soup and other foods that I do not like. It had been a week and a half of pain and after all of that time stuck in the house in pain and starving, this is what my life had come to…. total over-the-top excitement about a can of frosting!
But I deserved this frosting.
I only took it out when DC was not in eye shot.
MINE
I felt guilty hiding it from him, but not guilty enough to share it.
It was mine.
Mine, I tell you!
All good things must come to an end….. he caught me.
He wanted some.
Drat!
Not wanting him to pick up the bad habit of eating out of containers or finish the last of it,  I spread some on a few bite size cookies for him.  He was good with that.
It was the tail end of the can so there was just a little bit left for me.
It was the tail end of the can. He knew that, so he would not be looking for more.
It was the tail end of the can and although I thought about it – a lot,  it will not be replaced.
It was the tail end of the can…
I found a can of frosting.
I was excited.
It is gone now.
That is all.    

*****
The beginning of this post was written a few weeks ago but never finished. Instead of finishing it the way I had intended, I decided to use it as an opener for an old post - That counts, right?

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This is a Throwback Friday post. It's the fifth Friday prompt, of the Finish the Sentence writing community, Co-hosted by: Kenya G. Johnson of Sporadically Yours and Kristi Campbell of Finding Ninee. This week we're sharing something previously written. 

*****
This blog is used for shorter posts, off topic posts, for longer Facebook statuses and apparently complaints about dentists and doctors :) . Please visit my official blog site at: Taking it a Step at a Time 
 
 

Friday, March 23, 2018

Connecting to 'I love you"



Yesterday was DC's 27th birthday.

‘Twenty-Seventeen’ (27 in DC-speak) is so difficult to wrap my head around. We’re moving closer and closer to 30 and I may never get over that.
Many times over the years and the course of a day, DC will tell me that he loves me, complete with the “I Love You” sign.
I, of course will say and sign it right back.
This has morphed over the years into our own little thing, where we connect our two “I Love you” signs into one and I love it! It was DC who first came up with the connecting.

That "I love you" connect just makes me happy every day, but especially on his birthday. Who would have ever thought he would come up with that himself?
This child is the love of my life. He is my joy.
My wish for my boy on his birthday is that the rest of his life will be filled with the love and happiness he brings to me every day.
Happy Birthday to the guy who will always be my baby. 

I love him “Magly”. 
(This is a small excerpt from DC's annual birthday post)

*****
This was a Share a Photo/Tell the Story Friday post. It's the Week 4 old school blogging prompt for the Finish the Sentence Friday writing community hosted by Kenya G. Johnson of Sporadically Yours and Kristi Campbell of Finding Ninee
Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular prompt (different formats each week of the month). 
*****
This blog is used for shorter posts, off topic posts, for longer Facebook statuses and apparently complaints about dentists and doctors :) . Please visit my official blog site at: Taking it a Step at a Time 
 
 


Friday, March 16, 2018

Fortune Cookies, Coffee and Laughter



I was not prepared to write anything this week, until Kenya visited my facebook page and mentioned that I should post the video of my son that was there today. So that is pretty much what I did and all I really could do here at (shhh) work (shhh).

There is nothing like the sound of my son's laughter. Especially his "can't stop belly-laugh". It is highly contagious and you cannot be in anything but a good mood after you hear it.

There will never be anything like my son's laughter.


Facebook Status 3/16/18
Reading fortunes at the Chinese Restaurant (we had snow on my birthday so we chose the close-by option for dinner) - Video includes pauses for eating - he had to finish one before opening another - and for laughing - some of the laughing is in his the fake over the top, breath-out laugh that makes me nervous that he will pass out.... #FortuneCookies


*******

Facebook Status - One year ago

He's finding my day long - looking for my coffee, finding it cold in the microwave, reheating, looking for my coffee, finding it cold in the microwave, reheating, looking for my coffee, finding it cold in the microwave, reheating debacle highly entertaining. #WhereDidILeaveMyCoffee




Nothing like it!

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Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular prompt (different formats each week of the month).
this week's Finish the Sentence Stream of Consciousness post! Write 5 minutes on the prompt word "Laughter." 

Hosted by Finding Ninee and Sporadically Yours

*****
This blog is used for shorter posts, off topic posts, for longer Facebook statuses and apparently complaints about dentists and doctors :) . Please visit my official blog site at: Taking it a Step at a Time 
 
 

Thursday, March 15, 2018

Here I go again...Safety and Danger






(Apparently, I have not gotten this topic all out of my system. Also, for the record, I do not focus on the downside, but I do write about it from time to time. I have, in fact at times been accused of being too lighthearted on both of my blogs - so I just cannot win.)

I have told you anauseam that DC does not understand safety or danger. I have told you that I tell stories; individual stories, to show you how his mind works - so that it is clear to you that every autistic individual is NOT the same. 


We keep hearing and reading:
If you've met one person with autism, you've met one person with autism,” ~ Dr. Stephen Shore
but it does not seem to carry over into our real life views and assumptions.

So I tell stories, about my child and about his autism. 

I tell stories about his inability to communicate even though he is verbal.
I tell stories about the things he has come to figure out and learn and things that are still works in progress.
I tell you that he is unaware of danger and safety issues, no matter how often these things are explained to him.

Just telling you that, does not seem to make you believe or understand, so I try to tell specific stories.