Saturday, August 18, 2018

Funeral





DC and I just returned from a funeral (I have to call it a funeral because "wake" or "calling hours" mean nothing to DC). 

DC's great aunt passed away earlier this week.

In all honesty, I do not attend many wakes or funerals unless it is immediate family or a very close friend because 1. I am not able to go anywhere without DC unless Doug is around to stay with him and 2. DC gets very anxious, more-so now since my step-father's funeral - he was there both days and made it through but now, in his head he thinks that is the way it will be at every funeral (also, I do not really know if he completely understands "death", but he does understand that it is sad).

His Great Aunt was a wonderful woman who was always very good to DC. She always remembered him on his birthday, Christmas and many other random holidays, even though they did not see each other all that often.

She would call me from time to time to thank me for this or that but also just to tell me things. She would call when she had seen DC at a family event with his father, just to tell me what a "good looking, well-mannered young man" he was and how he behaved so well at whatever event they had attended. She would call me when she saw his art work or a card hanging on anyone's refrigerator to tell me just how lovely she thought it was or just how neat his handwriting is.

She paid attention to everything. She really loved him.

So even if by some miracle I would have been able to attend by myself, I thought that DC really needed to attend too.

I told him as soon as I knew the date so we could talk about it before hand; and we did – he brought it up numerous times every day.

Last night, I woke up to him practicing the sign of the cross and saying “I am sorry for loss” (yes, we are still sleeping on the couch).

I had to circle the block twice before we went in because he just could not calm down. Once we were in, I only had to take him outside once.

Once he saw his Aunt, Uncle, Cousin and Grandmother – he calmed down but he was a little loud until we got to the receiving line.

“Please don’t cry”.

We talked about it enough before hand that the crying did not upset him but he just wanted everyone to feel better, so “Please don’t cry” is his way of showing that.

As I said earlier, she was a wonderful woman who was always very good to DC. I am glad we were able to attend to say good-bye. I think DC kind of understood that it was important for him to be there as well.
*****

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



Sunday, August 12, 2018

Camp: A Season in Statuses

DC attended his summer camp on Thursdays and Fridays this season. It has been a long time since he was still in school and able to attend 5 days a week, all summer long. I am glad that he is still allowed to attend a few days at least, now that he is "working" (in a year round Group Supported Employment day program).

He had his "First Day Jitters" or "Arrival Anxiety" but spotted his friend Ron, so his arrival went much more smoothly than it usually does...

So here is DC's  camping season documented in Face Book Statuses:

First Day - Facebook Status

DC's first day of camp this season.....
Camp, Old Friends and a Little Bit of Anxiety





                                       

Hat Day - Facebook Status





HAT DAY! DC’s favorite day at camp - always. This year’s choice; Davy Crockett. Now don’t let him fool you. He has absolutely no interest in Davy Crockett, his one and only reason for choosing this hat was because it, in his mind is like having a ponytail. This guy wants nothing more than to have long hair (unfortunately, his hair grows out instead of down). 
As for me, the Davy Crockett song has been playing in my head all day. 
Just follow the bouncing ball and E V E R Y BODY SING .... 🎵 Born on a mountaintop in Tennessee.... 🎶



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Disney Day - Facebook Status



Disney day at camp. I offered to cut his Woody costume (he hasn’t worn it in years) so he could just wear the top but he said no. I was not sure that he really understood what I meant. I think he thought he’d still have to wear the whole costume. A lot of the time he doesn’t understand until he sees it, but I didn’t want to cut it and then find out he still did not want to wear it.... so here we have a “makeshift” version of Woody. Now we’ll have to come up with something different for Wild West Day.  He was happy with it, so that’s all that matters. #HappyDisneyDay#AllDisneyAllOfTheTime

Until "Cinderella" showed up and then he was angry that he was not "Prince Charming".


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Birthday Party Day - Facebook Status




No, It’s NOT his birthday. It is Birthday Party Day at Camp which provides an opportunity for him to wear his birthday shirt a second time this year. 
Knowing that he just might take full advantage of everyone thinking it is his birthday, I told him that if anyone asked, he needs to tell them that it is not his birthday.
DC: Okay Mom
We practiced (yes, it would have been easier just not to wear the shirt but he’d been talking about it all week) and practiced. He had it.
This morning I asked: “DC is it your birthday?”
DC: (complete with smirk) YES!
#HappyUnBirthday #NoGiftsPlease

(I was told that all of the practice did NOT stick)

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Imaginary ? Medals - Facebook Status





It was Olympics day at camp (his Special Olympics Running shirt came in handy). When he called from the car he screeched (happily) that he won gold medals. I haven’t gotten anymore information than that (but any time he participates in any kind of sport, he insists that he won - so there’s that). I don’t know what he “won” at and he had no medals when he got home, but he was happy about winning those invisible medals. 
#MysteryGames #Winning



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#MyHatHasBells - Facebook Status



Not that there is ever a wrong day to wear Christmas gear in DC-land, but it is Christmas Week at the Camp After Program. Wearing a holiday shirt and hat all day before After Camp begins..... Not a problem. 
#MyHatHasBells #ChristmasInJuly 
#SummerCamp

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Christmas in July - Facebook Status



Ho Ho Ho! I wonder what’s for dinner?#ChristmasInJuly #Camp

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Text from Camp - Not a Status

There was a bit of "warm snow" (goooood one - I am going to have to remember that one) to make their celebration complete.
Still a "Little Bit" of a distraction for DC





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Carnival Day - Facebook Status





Yeah, okay... it’s a stretch (although I do crack myself up). It’s Carnival Day at Camp. He MUST have wanted to be “in theme” because he agreed to wear white! DC does not like to wear white (unless it’s a dress shirt with a tie) or gray, because apparently gray is just dark white.
#SummerCamp #CarnivalDay #MomIsNotVeryFunny

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No, Not Woody - Facebook Status





Wild West Day at Camp. And make no mistake, this is Wild West Day “Not Disney Woody” (DC-speak).
#Camp #WildWestDay

(We found a different hat in his ever-growing hat collection - Phew!)

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King of the Storm - Facebook Status





There was quite a lot of thunder and rain while DC was at “After Camp” last night. 
Ms. “Giselle” made him King because Kings are not afraid of storms (it didn’t stop him from running to the windows all night). Apparently it made a bit of an impression on him because this morning he declared himself “King of the Storm” and told me how brave he was by showing me his muscles. 😃
King of the Storm ...... I’m going to have to remember that.
I also hear that there was a rainbow and some singing of Somewhere Over The Rainbow after the storm. (Photo stolen from camp) #AllOzAllOfTheTime too . #camp #KingOfTheStorm

Note: The After Camp Program - DC has attended this program for many years. It is a long day 9-3 at camp and then an invited few (those who can handle being at camp for such a long stretch of time) stay for activities and dinner until 8, once or twice a week.

DC was not going to attend the After-Camp program this year because the After-Camp Director, who DC just loved, retired. But then.... we learned that "Ms. Giselle" (DC gives everyone a Disney Character or Princess name - in this case, Amy Adams from Enchanted) who was his group leader for many years when he attended daily and who he ADORES would be taking the position.

Dinner: We all know that DC has a limited menu of items that he will eat. The old director, by some miracle could get him to eat (or at least try) ANYTHING! It was impressive.

Ms. Giselle, not only came up with "Warm Snow" and "King of the Storm" but also incorporated the "No Thank You Bite" - so the tradition of DC eating or at least trying new foods lived on at After-Camp.



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Down to the Wire - Facebook Status



We’re down to the wire.... The last two days of camp. Today; ‘HEARTS and CRAPS’
show.  #ArtsAndCrafts

(DC has never been a big fan of Arts and Crafts so I was curious to see if he had anything at all in the show. I asked him to take a picture. I asked him if he made anything for the show and he gave me a different answer each time - A Heart, a Hat and one other that I do not remember. I do not know if any of his answers were the truth and I did not get a picture)

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Last Day of Camp - Facebook Status 



Last day of Camp. Happy Camper not because Camp is going to be over, but because he thinks - no matter how much I try to explain it it him - that this means that the air conditioners, ‘hair - dish - ons’ in DC-speak, will be coming out. 
. ... No, Nope, Not Even Close..
#IsItHotInHereOrIsItJustMe

The last day of camp is also Camper Awards Day:


I'll have to agree with this one....


*****


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

Friday, August 10, 2018

Oy!




If you have been around here long enough, you are surely quite aware of the things I worry about. 90% of my worries are all about DC (the other 10% ? My weight :) )
I did not want to rehash all of that all over again.

After reading the very first couple of lines of Kristi's post (because THAT would be on my list as well and I will go back and finish as soon as I am done here), I remembered this very old post.
I threw a few numbers in there to make it "officially" a list. 
Cheating? Yes, probably....

****

One could (and would) say I am a little bit anxious, just a tad…… especially when it comes to children. I drive myself crazy watching other people’s children. I’ve pulled drowning kids out of pools and lakes while their parents were not watching them, grabbed kids away from traffic, ledges or anything that may cause an injury, again while their own parents were not watching. When we go to a fair or some other type of event where there are a lot of people, there is a good chance I will be bringing a lost child to security or helping him/her find his/her parents. There’s more; but you get the picture. I can’t help this. I have always been like this. I have always said that I am just too anxious to be anyone’s mother.
So why not give me a child with Autism…..
Welcome to a whole new level of anxiety…..
I was talking to my friend, Al at work last week. His son had just been sick; trip to the Emergency Room sick. He’s just fine now, but I can imagine how frightening it must have been at the time. This particular day was the day of his follow-up appointment. From there we moved on to the subject about his own anxiety. He insists on taking his kids to the doctor for everything (in his words).
(1) I get that! It’s always worth a trip to the doctor just to hear everything is all right than to continue to worry that a cold may not be just a cold…..just for the peace of mind. But he was beginning to feel that he was being overly protective.
Now believe me, he has heard plenty of my DC-obsessed stories before but I decided he needed to hear a few more.
(2) I told him that when DC was little I would calculate the time that he would be alone until my ex got home from work if I dropped dead, “right now”.  I’d make sure there was nothing around that could hurt him if something like that were to happen. I had no reason to believe I’d be “dropping dead” at any time, but just in case, I had to be ready. 
(3) I forgot to tell him that I would also force myself to watch Rescue 911 (hosted by William Shatner) when DC was little and then have nightmares about all the horrible things that they showed. His father always asked why I insisted on watching a show that gave me nightmares. I told him that I was afraid that they would show some sort of dangerous situation that I hadn’t considered yet and I might miss something very important to DC’s safety  – There were actually a few accidents that I wouldn’t have come up with in my own head, believe it or not, unless I had seen the show. So there!
(4) I also forgot to tell him about the time I called my poor sister-in-law at her cottage continuously because his father took him camping at the beach, near her cottage and didn’t call for two days! What if something happened to him and DC was in some tent on a beach of all places, by himself? – Fortunately his Dad’s sisters are used to me…..
I’ve been a single mother for 20 years now and I wouldn’t have it any other way, but being alone with a child with special needs can be, for me frightening at times.
(5) Anytime I am sick I wonder again, if I dropped dead “right now”, how long would it be before someone knows he’s alone?
(6) What would he do?
(7) Would he be safe until someone figures this out?
(8) As you can see, it’s not the me “dropping dead” that I worry about, it is DC being by himself for who knows how long.
The final nugget from the “tales from the anxiety-ridden mother” for Al was to tell him that 
(9) when DC was young and we went grocery shopping; he would get in the car, I would unload the groceries and then I would walk the 20 feet to put the cart back, in full view of the car. But I would be sure to leave his door wide open because if I happened to get hit by a car in those 20 feet (or drop dead), no one would know he was sitting in the car and I couldn’t say for sure that he would get out or let anyone know he was there. He could be sitting there for hours before someone notices. At least someone might wonder why there was a car door wide open in the parking lot and take a look inside.
(10)– In any situation, I can come up with at least a dozen disaster scenarios.  I can and do make myself crazy over this child, but he’s worth every second of
my the craziness.
Needless to say, Al went home that day feeling much better about himself.
(11) He’s 22 27 and in case you were wondering.. I do still check to see if he’s breathing at night.
*****
This has been a Finish the Sentence Friday post. This week’s listicle prompt is “10 things I worry about…”  Hosted by Kenya Johnson at Sporadically Yours and Kristi Campbell at Finding Ninee.
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This blog is used for shorter posts, off topic posts and also for longer Facebook statuses. Please visit my official blog site at: Taking it a Step at a Time 

Thursday, July 12, 2018

Fun with Social Security




Those of you that have been here awhile should know just how much I 'enjoy' dealing with Social Security or any of the agencies that I have to deal with for DC.

Today I sat down to complete DC's annual Representative Payee Report, which I must say is one of the easier reports that I have to complete. I like to do it on-line so I get a receipt with the date and time completed, and a summary of what was submitted.

When I went to submit his report, entering all of the codes provided; the website told me that his report had already been submitted (?????).

Thinking I might have entered something wrong, I tried 3 or 4 more times and got the same error message.

I panicked a little bit that someone might have DC's information (but would they bother to submit a report??? 😀) or that his info was mixed up with someone else......


Realizing that this was the same Social Security Administration that tells me I do not exist almost every month when I submit DC's wages - I calmed down and called the number they provided.


Slamming my head on the table listening to an endless "Welcome to Social Security message" (apparently something else had gone wrong so they saw fit to add an entire message about it so people did not have to sit on the phone to find out about this particular error ) - I finally made it to customer service.


"Wait time for a representative is now at 40 minutes. If you would like a call back in an hour and 5 minutes, please press one. If you would like to stay on the line for the next available representative, press pound".

I pressed one.

Two hours later, the phone rang and I explained that I was trying to submit my son's payee report and the website said it had already been submitted. There is no one else that would have submitted the form. I can just as easily mail the payee report if there is a problem with the website, but I want to be sure his information was not being confused with someone else. I submit his payee report on-line every year and there has never been a problem before.

(Please note that I mentioned his payee report three times during this conversation)

He took some information and put me on hold.

A good twenty minutes later he came back to apologize for the delay but he was still researching.

He put me on hold again.

After another 20 to 25 minutes, he came back and informed me that DC's report has already been approved????


Me: "How could have been approved when I haven't submitted it?"

Customer Service: "A law was passed in April that says you do not have to do these reports ..... for the time being. The law says that as a parent/guardian/payee, you should be trusted to know and do what is right for your child."

<Insert: Shocked Silence> I mean, yes we should know what's best, but considering the hoops we are all made to jump through, I was to say the least...... skeptical.

He gave me the date that this law was supposedly passed - April 13, 2018.

I asked for his name and location because I was not going to be held responsible for not submitting this information.

Me: "If this law was passed in April, why did I receive the notice to submit the report in June?"

Customer Service: "I do not know. The reports must have been sent automatically."

Me: "Did Social Security send out a letter about this law to notify us that these reports do not need to be completed?"

(Seriously, I receive 5 pieces of mail from Social Security per month - 3 addressed to me and two duplicates addressed to DC - it is not as if they are not "mail happy." already.)

Customer Service: "No we did not."

Me: "So you are telling me that a law was passed in April, Social Security did not notify anyone that these reports did not have to be submitted AND they sent the reports out anyway in June. Is that what you are telling me?"

Customer Service: "Yes, the reports went out automatically."

So I just wasted 3 hours of my day over something that I really did not have to do.

So...... If this "law" actually passed in April and okay, they neglected to notify anyone that the reports did not need to be completed and okay, sent the reports out automatically -

WHY did it take him almost a full hour to "investigate" this when I mentioned 3 times that my call was about not being able to submit my payee report?

WHY did they not make THAT the message on the website instead of "your information has already been submitted. Please call our office at -------"

And WHY if they missed all of the above did they not put that information on their outgoing message to avoid all of this time wasted????

Call me pessimistic. Call me cynical. Call me skeptical; but I think I may still be mailing the hard copy.

******

Edited to add: I was able to find the law on-line. So the moral of the story is that even when they make a change to make things easier, they still make you jump through hoops to figure it out.




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

Friday, July 6, 2018

Adulthood, Work, Camp and a Little Bit of Mourning His Childhood



This was originally written on DC's first day of camp , during his first summer out of the school system. He was 22 when I wrote this; he is 27 now.

It is a hard adjustment reaching adulthood and leaving the school system behind...

We can’t have it both ways…. but it’s still a little bit sad.


Today was my son’s first day going to day camp this summer. He has attended this camp since he was 5 – he’s 22 now.

Every summer he would go to camp all summer long, even staying after until 8pm for a special after camp program they hold twice a week. He loves it there.

Now that he’s 22 and aged out of the school system, he is in a work program, year round. I was shocked when I started looking at programs for him that they don’t have the summers off!

Of course they don’t, they are adults and have to do their job every day, just like we do. But it was a rude awakening for me at the time.

Everything changes after “school-age”.
He has aged out of Challengers baseball. Seventeen years of baseball….over.
No more February vacations, Spring Vacations or Summer vacations.
He is “working” now, with 3 weeks’ vacation, holidays and some sick time, just like everyone else.

This was probably the hardest transition for me so far. I have to think to call work, “work” and not “school”.
It takes a minute, when I panic that I haven’t set up anything for February vacation to realize that there is no February vacation any more.

Him becoming an Adult may actually be harder on me that it is on him. It is just such a huge change.

Yes, I know we are moving into adulthood and working toward independence; as much independence as his capabilities will allow.

Yes, I know this was the goal all along, but on the other hand, he’s still so much a child.

He’s still watching “Barney” (22 years of Barney! That’s a Support Group I need to form, anybody?) - he is still reading and watching Disney and is not embarrassed to hug and kiss his Mom.
On some level, for me, as much as I always work and hope for more progress, I love it,  it is nice.

This should be a happy time, and of course it is. He is an adult. He is in a program that he loves, but when summer comes around and it is time for camp to start, it’s a little bit sad that he doesn’t get to spend a fun filled, happy-go-lucky summer at camp as he used to. He only gets his two weeks.

Because…..

he’s an adult now………

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Originally Posted - We can’t have it both ways…. but it’s still a little bit sad.  at Taking it a Step at a Time

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

Friday, June 8, 2018

#NobodyListensToMe






There are more examples than I can list ... this is only the most recent example.

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Most of you know that DC works in a group supported employment program.

During the spring and summer he works in their greenhouse and also helps to take care of the grounds/lawn.

You may also know that every morning I have to load him up with bug spray and sunscreen (which he <insert sarcasm font> thoroughly enjoys <end sarcasm font>). 

Adding to the sheer annoyance of having me spray this stuff all over him every morning, there is also the issue of him not really understanding how to hold his breath so he is not breathing it all in. I do try to cover his nose and mouth AND we usually go out on the porch but he just can’t seem to move out of the cloud before he takes a deep breath.

I grabbed a few of these masks the other day from work to use temporally until I had a chance to pick up some not-so-cumbersome masks somewhere else.


The day I brought them home, DC and Doug were going to walk the trail with his ARC friends.  I told Doug to be sure to put some bug spray on DC before they walked. I gave him a mask and explained what it was for.


I wondered why Doug was taking the mask with him but I saw he was also carrying the can of bug spray so I just figured he was going to put it on DC when they arrived at the trail.


When they arrived home after walking Doug reported that DC hated the mask. His glasses were fogging up and he just couldn’t stand it.


Me: (confused by this)”How long could it have taken to put bug spray on him?”
Doug:
Me: “How could his glasses fog up in that small amount of time?”
Doug: “We only made it half way down the trail before he insisted on taking it off.”
Me: “Wait! You made him walk with the mask on?”
Doug: “Yes, you said it was for his allergies!”
Me: “No..... I said it was so he didn’t breathe in all of the bug spray”
(I mean, seriously.... what he heard wasn’t even close to what I said)
Doug:
Me: So did you at least put the mask on him while you were spraying him?
Doug: No, I put it on him when we started walking.


#NobodyListensToMe #YouCantMakeThisStuffUp


From: Facebook Status May 31, 2018

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After the initial Shaking Of My Head and "Wow! How did he get that so wrong" faded away, the next realization was:

I am sure that more than one person in the ARC Group must have wondered and asked why DC was walking wearing this industrial-style, cumbersome mask. I don't have to even ask; I can hear and see it, clear as day - Doug's explanation:

"His mother <insert head shake and eye roll>. You know how she is."

No matter what he tells me, I know there was some amount of eye-rolls and "over-protective mother" insinuations on his part.

#GuiltyButNotThisTime

*****

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