The End of Summer?

Like clockwork on August first, DC started talking about the last day of camp, which I discovered last year really meant that he THINKS the last day of camp marks the end of summer and in his mind the air conditioners will be coming out.

Until last summer when he must have heard someone at camp call the last day “the end of summer”, DC was resigned to the fact that the air conditioners do not come out until late October or November. Just hearing one person say “Camp is over, Summer is over” has moved his expectations up for “air conditioner – free” living. And like last year, he was not happy to hear that there is some summer left after camp is over. Life was much easier when his expectations went to October (or November).

Is it hot in here or is it just me?

(Originally posted August 2017 on Take Another Step – Life with DC)

It was very early in August and I could not believe that DC seemed to be getting excited about the last day of camp as if he was willing it to be over. He loves camp and I did not understand why he wanted it to end so badly.

He started saying “This week, the last day of camp? Camp is over?” on Thursday the 4th.
I told him he had the following day and next week left.

“Next week, last day of camp? Camp is over?”

Yes, You went today and you will go tomorrow then Thursday and Friday next week. Next Friday is the last day. 

I was confused because he loves camp so I tried to get him to tell me why he wanted camp to be over. Wasn’t he having fun?

“Yes, DC is having fun with my friends”

So I gave him a choice…

DC would you rather to to ARC (work) or Camp?

“DC want to go to Camp, see my friends”

Do you like camp? You don’t have to go if you don’t like it any more.

“Yes, like camp. Fun with friends”

Let me just break here to explain that although DC understands the seasons, he cannot always tell you that July is summer or September or October is fall. Summer is HOT. Winter is COLD – so if we happen to be in Florida in January, it is summer – in his mind. He knows the seasons and the months that go with them by memory, not by understanding. They do not always make sense to him and when he is not concentrating or has something else on his mind he goes by the weather, period.

This week he started asking me about the last day of camp again and added “Summer is over”.
I told him that camp would be over on Friday but summer would not be over for a few more weeks.

He looked very disappointed by that.

It was then, as he stood there staring at the air conditioner and looking forlorn about summer not ending on Friday, that I realized what was going on in his head.

Someone at camp must have mentioned the end of summer. DC got it into his head that summer was over on the last day of camp.

DC hates the air conditioner. He thought he would be getting rid of it earlier this year because he heard and believed that the end of summer THIS year would be the last day of camp.

He must have been excited thinking he would be getting a break earlier than usual. As per the conversation we had before someone mentioned camp being the end of summer – he was looking at October as the end of the air conditioning. No wonder he looked so disappointed when I told him there was still more summer ahead…

<From Facebook Status 8/1/17 (before his end of camp/summer assumption)>

I know the air conditioner bothers DC but I usually don’t hear about it after the first few weeks after it goes in (it went in, in April) – Today is August 1st aka #CalendarFlipDay and after flipping all of the calendars, DC said…
DC: My ‘Hair-dish-on’ out in October
Me: What?
DC: ‘Hair-dish-on’ out at Halloween.
Me: (wondering why he is talking about Halloween)
I don’t know what you mean.
‘DC: ‘Hair-dish-on’ FAN out at Halloween!
Me: Ohhhhhh, the Air Conditioner! October or November, okay?
DC: October
(He’s hoping that the air conditioner is out by Halloween. He knows that removing the A/C is NOT a decision I make lightly or early.) I guess even though he might stop talking about it after the first few weeks after it goes in; it still bothers him.
He’s looking for the light at the end of the tunnel – and even if it’s two months away; he wants to know it’s coming.
#WishfullThinking #IsItHotInHereOrIsItJustMe

———

I really do feel for him but I can’t take them out early. I can’t do it… I just can’t:

<From Facebook Status >

I can’t say “shopping for a bathing suit” is on my list of  “Seven Things I Hate About Summer” because I just don’t do that….. haven’t owned one in years..

Number 1-7 for me THESE DAYS are:
1. IT’S HOT!
2. It’s too hot
3. Why is it this hot?
4. I can’t take this heat!
5. Holy S&%#! I am not going out there!
6. I AM ON FIRE!!
7. IT’S Too #$&%in’ HOT!

#IsItHotInHereOrIsItJustMe
🔥🔥🔥🔥🔥🔥
(you can pretty much count on hearing all of the above year round from me, though)

——–
<Facebook Status >

DC: Mom, Fan, Flapping, whoo, Mom, Flap like bird.
***
(DC pointing out that my “I’m sweating to death” episodes include some of my very own “Flapping” …. Seriously, that’s kind of amazing that he’s made that connection…)
#IsItHotInHereOrIsItJustMe

——–
<Facebook Status>

#IsItHotInHereOrIsItJustMe enough said…

——-
<Facebook Status >

Dc wakes up in the middle of the night (yes, it’s 50 degrees and yes, I have both air conditioners running at the coldest temperatures) –
DC:”Mom! The Fan is Freezing!” – from the boy who never seems affected by heat or cold.
DC: “Mom! Turn it off!”
Me: “DC, I’m sorry but I can not do that. You will have to use another blanket”
I will do just anything for this child, except turn the AC off.
#IsItHotInHereOrIsItJustMe

——-

<Facebook Status>

DC just came home from his Dad’s. It’s 9 bazillion degrees (to me anyway) so yes I have the AC on. He just came down stairs with his long pink and mauve pajama bottoms (the same PJs that he had to have in Niagara Falls), his big Doctor Who Robe, Doctor Who slippers and a stick on mustache. Who says we lack any fashion sense?
#IsItHotInHereOrIsItJustMe
#TheMustacheMustKeepHisFaceWarm
oh…. and the teal Cookie Monster shirt.

——–

As you can see, this is not an issue that is new and does not look as if it will be resolved any time soon (unfortunately for the both of us)….

I am very soon off to bed armed with ice pack, my cooling pillow and the A/C set at “ultimate freeze” ~ Happy August. Here’s to looking forward to the “end of summer”.

Summer Reruns: Shore Leave

Four years ago this weekend, we made the ‘Trek’ to Baltimore to attend Shore Leave…… yes, everyone puts up with me and my Star Trek obsession.

The previous October, we made it to New York Comic-Con. I was nervous – it was so crowded, but the hope of meeting Felicia Day, kept DC pretty much on track. He also got to meet William Shatner and the Real Mike Tee Vee. All were very nice to him and he was very, very happy.

A few years back a friend of mine told me about “Shore Leave“,an event held in Baltimore every August. It is smaller than ComicCon and the original plan was to try this first, see how DC managed it and then move on to the bigger ‘Con’ in NY at a later date. Somehow we ended up doing it in reverse. But, since DC did so well at Comic-Con we decided  Shore Leave would be a breeze.

To Boldy Go....

The first “sign” that DC learned when he was very young (for those of you that may not know, DC was non-verbal until he was 7 years old) was the “Live Long and Prosper” sign. If and when he saw a picture of Mr. Spock or heard him mentioned, he used that sign.

Today, he is verbal but will still, at times use his signs in conjunction with his speech – that “Mr. Spock” sign has come to represent Star Trek in general for him and he still uses it.

We left on Thursday afternoon as soon as DC came home from his work program. It took a full 8 hours to get there (traffic). It was late but at least we would be there to spend some time in Baltimore on Friday before Shore Leave opened on Friday night.

Reading the Shore Leave schedule, I noticed that there was a “Rock, Paper, Scissors, Lizard, Spock” tournament at 6pm. DC loves the Big Bang Theory and thinks “Rock, Paper, Scissors, Lizard, Spock” is the most hysterical thing he’s ever heard. He does not really know what it means, the words are  just so funny to him. I thought if we attended the tournament, he would see exactly what it is…. a game.  I didn’t think he would actually understand the game, but at the very least he might understand what they are talking about in the show.

When we first walked in, the moderator was explaining the rules, reading from a very confusing T-shirt, complete with diagrams and pictures of the signs. One of the participants piped up “That boy (DC) has the directions right on his shirt” – I don’t think the moderator appreciated this, he looked up, sighed and went right back to explaining with HIS T-shirt. DC got a kick out of the tournament and asked me more than once “to play“. I knew he really didn’t understand it and thought about asking the moderator if someone could play a quick game with him when they were finished, but during the practice rounds I did with him, I could see he really didn’t get it. He just threw whatever I threw. I told him he could play against me. We played at the table while the tournament was in progress. This seemed to make him happy enough.

After the tournament we were walking down one of the hallways and I noticed the TARDIS in the corner and pointed it out to DC. He recognized it immediately yelling,  “Dr Who” We went to check it out. It was a photo booth. I don’t know what sort of directions the man gave DC when he was in the booth, but I could see from the computer screen outside that every time “Look at the Camera” came up on the screen, DC did something with his hands and his face, when the prompt was not there he sat looking at the screen normally. I’m sure he was following his understanding of the directions the man gave him.

He also happened to find a pair of TARDIS slippers. There were only two pair on the table, but thankfully one pair was his size. He was pretty darn happy to get them. He has a “thing” about slippers lately, I don’t know why. He has a few pair of slippers at home but never wanted to wear them, all of a sudden he loves slippers and wears them all of the time. The Tardis slippers were a nice find for him.

Pictures taken, slippers purchased, now DC was beginning to get antsy. He had enough for one night and as you may or may not know, DC’s favorite thing when on vacation – besides bookstores and restaurants, that is – is the hotel room. He really just LOVES hotel rooms, so he was anxious to get back to “his” desk and all of his “stuff”.

On Saturday morning, we decided to take in the “Fairy Tale Panel” back at Shore Leave. DC must have been much more exhausted from Friday than I realized as he fell asleep and slept (in the front row, mind you) throughout the entire hour. 200lbs of dead weight hanging on me the entire time – just what you want when you are running a panel, someone fast asleep in the front row!  He did also sleep through the Once Upon a Time panel at ComicCon, but at least it was a dark room and we were nowhere close to the front. I suppose it could have been worse, he could have been snoring.
Saturday was much more crowded than Friday night had been. We tried to stay away from the most crowded areas, but refreshed from his “nap”, DC made a bee-line to the Buffy doll that I knew he wanted but refused to buy the day before – I think he was just too overwhelmed on Friday night to know what he wanted until he found the Tardis slippers, that is..
We had purchased tickets for 3 photo ops the night before, but we still had a little time to kill, so we went to the autograph tables, which surprisingly, were not very crowded.

Our first stop was Robert Picardo. I explained to DC that he was once on a Star Trek (Voyager). His sign read “I’m the Doctor”. This confused DC, he knew it wasn’t David Tennant, the only Dr. he is aware of, but the sign did say “I am the Dr.” so he called him Dr. Who.

– just following directions, Doc…….

We moved on to Michael Welch. He was exceptionally nice to DC – really, they all were.

We then headed to THE most confusing Photo Op line ever. We had tickets for 3 Photo Ops which meant we had to get in line 3 times. The lines did move quickly, but it was all very confusing trying to figure out where we were supposed to be.

The woman at the entrance to the photo room just Ooo’d and Ahh’d over DC every time we arrived for a photo. “Oh! Look at him, he is so excited!” – he was, plus there is no one that loves to have their picture taken more than DC does.

His first photo was with Robert Picardo, “Dr. Who” from a half hour earlier. He didn’t call him Dr. Who this time even though he was wearing a Dr. Who shirt (he didn’t have his “I’m the Doctor” sign with him and it wasn’t David Tennant on his shirt).

Next up was Eve Myles. She was a few minutes late getting to the photo room and when I saw her coming down the hallway, I got a little bit anxious. Her hair was much longer than it is on TV and in photos. DC LOVES long hair, LOVES it! Before we were faced with another  ‘Snow White Incident’ I launched into “the rules”.
“DC, you can not touch her hair”
“Okay Mom”
“DC what is the rule? – Tell me”
“Don’t touch your hair” (the usual pronoun confusion,but I knew he understood)
and then….. just for good measure…
“DC, what is the other rule?”
“Don’t pick up the people”
and he didn’t……….

Next and thankfully, last as DC was tired of getting in and out of lines…. Silas Weir Mitchell. I love Grimm. DC has seen it a few times, but I don’t think he really knew who he was. It didn’t faze him because, someone was taking HIS picture and isn’t that really all that matters?

At this point, DC was starting to get edgy. Our last stop was the Eve Myles autograph table. We had a good 1/2 hour wait until she was finished with the Q&A she was leading. We slipped inside to listen and more importantly to move DC out of the hallway.

He didn’t want to sit down.

He didn’t want to stand where we were standing.

He didn’t want to stand in the next place we moved to.

We moved close to the door and he seemed okay with that.

But then a staff person came over and told us we couldn’t stand there so we moved back to the hallway.

We decided to just wait at the table.

There was a wonderful lady sitting at the table who just happened to be a Special Ed teacher (we seem to run into Special Ed teachers everywhere we go, she was the second on this trip), she let DC pick out the photo he wanted autographed early. He picked a photo of Ms. Myles from a Merlin episode. We chatted a bit, she chatted with DC a bit as well. She told him he was doing a good job waiting – he loves compliments….. who doesn’t.

The Dalek from the Tardis photo booth was now roaming the hallway “EXTERMINATE!”,  so that helped to keep him occupied until Ms. Myles was finished with her Q&A. When she arrived at the table, the woman whispered something to her and then introduced her to DC. She told her that he was waiting a long time for her. He was first in line for her autograph, she was lovely to him. He was thrilled…..

but he was also “done”.

I didn’t try to push him to do any more. We arrived that morning at 9 and it was now after 3. That was a long stretch for him, even with the nap. He had a few sketchy moments throughout the day, but I really I think, overall he did a fantastic job!

In the words of DC, “We all had a wonderful time”

except for this guy…………..

this guy....

this guy….

 

*****

(This post was originally posted as “To Boldly Go” in August 2014)

The Couch; Another Round

 

A couple of weeks ago on the 4th, my neighbors decided to blow off “cannons” right under our window………It went on for hours.

Now, DC really does not mind fireworks when he is expecting them. It’s the fireworks that begin two weeks before and continue on for a month after the 4th that bother him. Being a guy who is terrified of storms, hearing these random fireworks does not go over all that well.  Even on the 4th when he should be expecting them, he certainly is not agreeable to the noise when it sounds like a cannon is going off directly under our window.

Due to the my neighbors and a couple of pretty good storms over the last few weeks, we have been sleeping on the couch.

When DC was young, he would come into my room when there was a storm and he was afraid. This did not mean he would calm down but once he tired of repeating the same few phrases over and over again, he would finally fall asleep.

He is  27  now (chronologically) and it is no longer appropriate for him to come and sleep in my room. He does not understand this because in his mind, the storms are just as scary as they were when he was young and quite honestly, developmentally,  he is just as young as he was then. There is no good way to explain this to him.

So……  now during storms or when he hears a loud noise that might be a storm or fireworks or a truck driving by or a plane flying over head…… we sleep on the couch.

I have a sectional.

He sleeps on the chaise lounge (the bottom of the L)  and I sleep on the straight part.

I am old. Everything hurts after sleeping on the couch for more than a few days.

It is not always easy to get him back to his room and into his bed, especially at this time of year when the storms just seem to  keep on coming. It doesn’t even need to be a storm – clouds, dark skies, rain or anything that puts the notion of a storm in his head is enough to send us “to the couches”.

Our last round of couch-sleeping lasted more than 2 years. I am hoping this round does not last anywhere near that long.

It’s only been two weeks but I am tired.

It’s only been two weeks but I am afraid that there are plenty more storms ahead. ‘Tis the season.

It’s only been two weeks but I can already tell that it is going to be a very long summer.

It’s only been two weeks but……….. I miss my bed.

***

Ahhh, but there is always a little bit of a bright side  – FB Status – July 17, 2018)

 

Between looking out the door and repeating “Storm is over soon, Storm go away, I am brave, Storm is over soon……” DC kept coming into the room with his hands in prayer position, bowing and saying “Yay! We Must Stay”. I just assumed it was more drama about the storm but I’d never heard him say this before so I asked him (thinking it must be a movie line) where this was from…..
DC: Yoga Class
(I’ll give you a minute….. 😂😂😂😂😂)

*********

This has been a Finish the Sentence Friday  5-minute stream-of-consciousness post about “My Bed” hosted by Kristi Campbell of  Finding Ninee and Kenya G. Johnson of Sporadically Yours 

 

 

Camp, Old Friends and a Little Bit of Anxiety

Yesterday was the first day of summer camp for DC and Salli. DC has talked about nothing else since I told him he would be going on Thursdays and Fridays for the summer. I did not tell him too early because…….

enough said.

He was excited, to say the least.

Not only would he be going to camp but his his favorite ex-group leader, “Giselle” (everyone is named for a Disney character or Princess) would be taking the head position in the after camp program this year!

What you need to know about DC is that no matter how much he wants to go somewhere or how much he is looking forward to going, there is always an element of anxiety that hits him when he arrives…. I like to call it “Arrival Anxiety”.

This anxiety is not anything new with DC, it just seems to be a little more intense, and dare I say, loud since he has been on his seizure medication. It is as if someone flips a switch and there it is. It can be brought on by anything or nothing at all. It just “is”.  It also takes him a little bit longer to shake it off now-a-days. For camp drop off, this means a big production until the switch gets flipped back and I am able to leave.

My other concern was that DC, as soon as he heard he’d be going back to camp, began asking for his friend Ron (see story below). Ron had moved out of state a few years ago but still came up to visit his aunt (who was the camp director) and volunteer at camp each summer. With his aunt stepping down as director I was not sure that Ron would be volunteering any longer.

I tried to prep DC ahead of time, just in case Ron was not there this year. He seemed to understand, but with DC one never knows if he is “getting it” until he’s faced with whatever I was hoping he was understanding.

I saw that flip switch before we even left the house.

“Please DC, don’t do this today. Try to calm down and breathe before we get there”. Yes, I know that I can’t just talk someone out of anxiety, but still one can hope.

By the time we picked up Salli, he was “roaring and growling”. It wasn’t looking good.

Somewhere between Salli’s house and camp, he turned a corner and he was just the happy, goofy guy he had been before he went ’round the bend earlier at home. It stops and starts just that quickly, with no warning and often no explanation.

I did not know what snapped him out of it in the car but I was relieved for the moment. I knew that this did not necessarily mean it was over as we hadn’t actually “arrived” yet,  but I was hopeful.

Still holding my breath, we pulled into the driveway and got out of the car….. and there was Ron!

ALL HAIL the the Spirit of Chief Gotchabagollie (it’s a camp thing, don’t try to figure it out)!!!!

They hugged each other and DC announced something like “It’s a beautiful day” – that was not exactly what he said, but I knew what he meant and his day was now made.

As DC would say; Phew!

More about Ron and DC (from 2015)

Best Camp Ever!

Yesterday was DC’s last day of camp. The last day is also always “Awards Day”. When DC came home I asked him if he got an award. He said he did. He didn’t have anything with him so I asked him where it was – “At the camp”. (I don’t know if he actually won an award). I asked him what award he won…..
“Best Camp Ever!”

I am sure he did not win an award for “the best camp ever” although he reported it that way to more than one person. I do know that he was really excited about camp that day.

Feeling bad that he had to miss so much of the little bit of time he was scheduled to go to camp this year, I arranged for him to attend on the last two days instead of just his scheduled Friday. It did not make up for the rest of the summer but at least he would be there two days in a row during the last week.

When I called to ask if he could attend the extra day the director let me know that her nephew *Ron would be there volunteering that week. Ron is one of DC’s favorite people at the camp. Ron has been around and volunteering for quite a few years. Like most of the volunteers, he spent a good part of his summers at camp.

DC really, really likes Ron and when DC likes someone – he really LIKES them, to a point that he really needs to be reeled in so as not to frighten the subjects of his admiration. DC really does not understand that not everyone wants to be hugged, not everyone wants him right in their face all of the time. He gets so excited over these chosen few that I really worry that he will end up pushing them away. You have not experienced fear until you see this guy come barreling at you at full speed.  Even though at this point I know he is running to give me a hug and even though I know he will be able to stop before mowing right over me,  as he is coming at me and in the moment, I am still convinced that he is going to knock me into the next town.

The friends that he sees often are used to this and because he sees them often do not always get the in-your-face DC…… not continuously, anyway. There are a chosen few that he does not get to see all that often, that really get the full DC-experience. If I know we may be coming in contact with any of these people ahead of time, I do try to have a conversation with him before we arrive.

He is supposed to ask permission of the person before hugging, unless of course it is someone we have already established does not mind being on the receiving end of that back crushing hug. Normally when I have to make a rule, DC is good about adhering it. This particular rule seems to give him a bit of trouble. He just gets too excited to think about the rules.

He has had a few experiences where someone was absolutely NOT happy with DC’s attention.  In one instance it caused a schoolmate to have meltdown. This upset DC for days. He doesn’t understand. It is not clear to him why he can hug some friends and not others. Some just try to avoid him, a few put up with it because they understand and others do not mind at all and actually are happy to see him. Ron is in the “happy to see him” group.

A few years ago, Ron moved down south with his family. DC continued to look for him at camp and every camp event throughout the year. As soon as he was aware that a winter camp activity was coming the very first question would be about Ron. It took a good long while for him to understand that he had moved far away. I am still not sure that he quite understands ‘moved away’ but he does finally understand that Ron will not be there all the time as he once was.

Ron does come back on vacation to visit his aunt during the summer and comes to volunteer while he is here. In case you missed that…… He spends his vacation volunteering at the camp. Impressed? I certainly am.

DC was so happy to hear that Ron would be there and I am so glad I opted for that extra day. Ron doesn’t seem to mind having DC all over him all day. He is very good with him and I don’t feel as if I have to give DC too many instructions beforehand because I know Ron can handle it.

Halfway through the last day of camp I received a text from the assistant director with this photo.

camp 20151

 

I know that DC did not win “The Best Camp Ever” award. I am sure he was telling me that he had the best day at camp ever  –  and a good part of that due to his friend Ron.

*****

*Name changed

 

 

 

 

Our Kids Are People.

I have read and shared a couple of pieces just this week (here and here) about a subject that many people just do not seem to understand.

Our Kids Are People.

One might think that this would be something that should not have to be explained, but believe it or not, it is. Praising your child for spending time with or eating lunch with the SPED student or someone who is viewed as different is in reality, teaching your child that our kids are not people and that treating them as you would treat anybody else is cause for celebration.

*The TSA agent who decided that because DC is autistic, there was no reason to speak to him or treat him like a human being. He just grabbed him and patted him down. The mere mention of autism led the agent to believe that DC did not have to be treated as a “person”.

People do at times overlook him completely and direct their questions to me instead of talking to him. I do always ask him the question myself and make sure he gives the person the answer himself. I mentioned earlier in the post that I thought that there was no way on earth that the security guards did not understand even before I explained that DC has autism.  Now as I think about it, I wonder if they actually did understand and decided that due to his autism, they did not really need to talk to DC directly at all…… and THAT is a problem.

*The “Volunteer” that we will talk about in the post below.

*The people who refuse to even respond to DC when he attempts to socialize. It happens quite often.

These people have decided that DC has a disability and therefore does not deserve to be treated as a human being – he doesn’t know any better. Well, he does know. He can and does get his feeling hurt.

Along these same lines… if you or your child are going to volunteer for some sport or activity, please be sure you/they are doing it for the right reasons and remember that our kids are people too.

Originally Posted in April 2018 on the other blog:

Attention Awareness, you missed a spot

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 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.

While on our way to one of DC’s events, I asked Doug 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!

******

After hearing the volunteer/dance story in the car, we arrived at DC’s event.

DC is a participant in a few sports teams. 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!

 

 

 

The End of The School Year

DCBarney

DC has been out of school since 2012. He walked with his class at the high school in 2010 and then moved on to the school system’s Transition Program for the two years between 18 and 21 (“school age” in this area is age 3 to 21 for SPED students).

The tiny boy with the bigger than him Barney lunch box seems like forever ago and not that long ago at all.

When, as the parent of a SPED student your life is pretty much all encompassed by the school system; IEP’s, therapies, fighting for everything (oh, the fighting), it is very difficult cutting the cord when it is all over.

Yes, there are still meetings – we call them IP’s now (no E for Education) and there is still the paperwork (which has more than doubled) but it was really a rude awakening. It took a few years for me to stop panicking when winter, spring, Christmas school vacations came around thinking I did not have a plan for DC, only to realize I did not need a plan because he was out of school and his program was year-round.  It was very hard to make a break from the school calendar.

I remember going with *Salli’s mom (and our caseworker) to look at the many Group Supported Programs in the area, trying to find a good fit for DC and *Salli for after they aged out of the school system. We saw many programs, good and bad.  I specifically remember coming home each week feeling drained and depressed. I did not say anything at first because I really just thought it was me being overly emotional until *Salli’s mother said the same thing to me one day. There was no more “school”, no more moving into the next phase in the school system – we were looking at the rest of their lives. This was it. This would be their life.

It just hits you in the face.

We have adjusted though, it was a long adjustment period but we have made the adjustment. Now I find myself oblivious to the last day of school and anything related to school.

I remember getting a message from one of DC’s friends and explaining, when I answered him later that day, that I did not want to reply while he was still in class.

DC’s friend: “It’s July. It’s summer vacation”

Yes, I am now officially oblivious to it all….

Except for the bus. I do, at times still call DC’s work transportation  – the bus.

Me: (Answering DC’s daily “I’m going home Nowwwww” phone call to me) “Are you on the bus?”

DC: No!

Me: (panicking a little) Where are you? Aren’t you on the bus?

DC: No!

Me: (panicking more) Where ARE YOU!

DC: In the car.

His adjustment is complete.

*****

Finish the Sentence Friday is a link-up where writers and bloggers come together to share themselves with a particular prompt (different formats each week of the month). Hosted by:  Kristi Campbell of Finding Ninee and Kenya G. Johnson of Sporadically Yours this week we are finishing the sentence, “It’s the end of the school year, and…”

#SilentCoffee

Once again I am using my “Other Blog” format over here on this site. It’s Mother’s Day, so I can do what I want. Right?

Silent coffee. That is all I wanted today. I am sure we all have that dream. I tried. I really did, but as in all of these other attempts; I failed.

Facebook Status – June 2017 

Silent Coffee on Vacation

Second attempt at 5 minutes of alone time. First attempt aborted when DC forced Doug to bring him to find me.

*******

Sleeping in and #SilentCoffee – March 2018

DC , on a regular basis feels the need to announce that he is  “Not tired yet” at different intervals during the evening. There have been times when Doug was over and I am just too tired to stay awake and since he was here finishing his laundry or doing something on the computer, I will tell DC, who just announced he was “Not tired yet” that he can stay up until Doug leaves.

Of course I know that Doug would not leave until DC was in bed and of course he would lock the doors on his way out.

Nope….. As soon as I say I am going to bed, even if he had just made his “Not tired yet” announcement, he begins packing up his princess papers, books and markers and goes up to his room.

If I am going to bed, he is going to bed.

If I am awake, he is going to be awake.

That is just the way it is.

I was already scheduled off from work today but due to the impending storm, I was almost 100% certain that I would be keeping DC home as well – whether his program was cancelled or not. I did not tell him last night just in case there was a drastic change in the forecast by the time morning came. Because I already knew that only one of us would possibly be getting ready for work this morning, I let him sleep about a half hour longer than usual (normally we are both up and dressed by the time we find everything is cancelled so there is no going back to bed – ever).


Unless everything is called off the night before, today may possibly be the very first time, ever that he hasn’t been up, showered and dressed before we found out that his work (or school, back in the day) was cancelled.

What you have to understand here is that every single time I have to get up during the night, every night (I am old, so me getting up during the night happens QUITE often), I have to first stop in his room to tell him that it is not time to get up yet and he needs to go back to sleep. He hears me, every.single.time and is ready to bound out of his bed, no matter what time it is.

This morning when I got up for good, I went into his room as always and said. “I am going downstairs now, if you want to sleep longer you can” – (This never works but still, I try)

I was shocked when he said “Okay” and rolled over to go back to sleep. I was thinking “Wow! I actually get to have silent coffee, this morning”.

I hardly finished making the coffee when I heard him yelling “Mom, want to get up!”

His face when he came downstairs made me laugh out loud!

He was angry with me because apparently he thinks I told him to stay in bed while I had the nerve to get up and come downstairs without him!

Silent Coffee, cancelled….

******

Mother’s Day – May 2018

Hiding in the Laundry room

It is Mother’s Day. In a desperate attempt to just have 5 minutes alone and silent coffee, I took my coffee down to the laundry room/garage.

I barely had time to put my cup down when I heard DC knocking on the door at the top of the stairs.

This was very odd indeed because trust me, he rarely knock on any door.

I yelled up the stairs.

“What’s wrong?”

DC: “What you doing?”

“I will be up in a minute”

Knocking continues.

DC: “I want a hug”

“I will be up in a minute.”

DC: “I want a hug”

(He did not mention wanting a hug when I was upstairs with him)

“Okay, I’m coming”

So #SilentCoffee was a failure once again, but I did get a hug and he did share his M&M’s from the M&M store yesterday with me, so I really can’t complain.

Happy Mother’s Day, everyone.

I wish you all  5 minutes of #SilentCoffee and if that did not/does not happen, I hope you get a big HUG (M&M’s are optional)

Happy Mother’s Day!

Telling Time in DC-Land

 

I usually use my “Other Blog” (Take Another Step: Life With DC) for posts involving Face Book Statuses, but this was big for DC (and me) so I decided to post it here. It may not seem a big deal to you, but believe me it is a big deal here in DC-land!

(How much of a big deal, you ask? I just washed my hair to get all of the “gray stripe concealer ” spray out so I can dye said gray stripe but I chose to sit here and write this right away, while hoping that no one comes to the door or nothing happens that will force me to leave the house. No, there will not be photos.)

Telling time is not something that is easy for DC. I remember one of his teachers telling me that telling time might be something he will just have to memorize and I do believe that to be true for the most part. This is something like balance (on a bike) that is really difficult to teach. You get it or you don’t.

He understands that there is morning, afternoon and night, but the actual “clock” times that correspond to particular times of day are very often confusing to him. Adding to the confusion is the fact that there are TWO of every hour in a day (sometimes I think Military time would make more sense to him).

For example; he eats breakfast in the morning and lunch in the afternoon and he sort of has an internal clock for that. But when there was early dismissal at school back in the day or he has to come home early from work, he expects dinner to come not too long after he gets home, because dinner usually comes not too long after he gets home.

You are now going to suggest a digital clock or watch…..

Done that.

He has a watch and although he really does not like to wear anything on his wrist, every once in a while he will put it on. It is helpful only at times when he is asking me when we can go somewhere or do something – I can tell him the numbers to watch for but then instead of continuing to ask me about whatever he was asking about, I get this…

I didn’t realize that DC had packed his watch and was wearing it in the car. I only did realize when we started getting minute by minute updates from the back seat:

“Mom, it is Eight-‘Firty’- Seven, we have to find Uncle ‘Liar’ –

“Mom, it is Eight-‘Firty’ – eight, we have to find Uncle ‘Liar’ –

and so on………. 

~ From:  Because, Because, Because, Because….BEEEE CAUSE

(Uncle ‘Liar’ = DC-speak for Uncle Lyle)

The numbers really do not mean a whole lot to him in correlation to time of day.

When he was younger, he started asking for “5 minutes” when he arrived at school everyday. He did not know how long 5 minutes was or even that it was a length of time, he must have heard it somewhere.  But he did figure out that they would leave him alone for a little while so he milked it for all it was worth.

Over the years he has gotten a little bit better about reading the clock but really only hours and sometimes half hours so I was pretty impressed with this last year:

Facebook Status – June 5, 2017

DC: Mom! It’s Seven Fifty (fifteen) o’clock! 
Telling time is not something that comes easy to DC. Often he can get the hour (but more often he gets the hands confused so it’s 12 o’clock a lot) and once in a while he can get the half hour. 
7:15 with no prompting what-so-ever is HUGE!

 

Later that same week:

Facebook Status – June 7, 2018

So that happened Monday morning and after a few times asking him what time it was, and not getting the correct answer, I began to think that 7:15 was just a fluke. 
He did randomly announce 7:00 correctly on Monday night (hours are easier for him) but this morning he announced 7:25, when it was actually 7:25 (o’clock – we can’t skip the “o’clock”)! 
What I am taking from all of this is that he seems to get it right when he’s not asked – when he just decides to tell me what time it is…
and… he seems to be partial to the 7’s.

I’ll take it. It’s progress… but there is still that disconnect to the time of day and the passing of time (if I say “in two hours” or “in an hour”, it generally does not make sense to him, even when I explain and tell him what time it will be in two hours. He understands what time, because I am telling him the actual time. I do also count the numbers on the clock hoping that he will understand that two hours from 12 o’clock would be two o’clock. It just never seems to carry over to the next time.

I said earlier that he seems to have an internal clock for meals, but that clock only works on weekdays. Weekends he starts asking for lunch at about 10 am (sometimes earlier). I have told him many times that 10 am or when ever he is asking is still “morning” and afternoon does not begin until 12 o”clock.

This morning I heard:

“Mom! Lunch is in one hour?”

I looked at the clock and it was 11:00 am and lunch was indeed in one hour!!!!!!

I was shocked (so shocked that I think I scared him at first) and thrilled.

I asked him to repeat it and he did.

He knows he has done something GREAT – I am not quite sure he understands just what he did, even though I’ve told him over and over again – but he knows that I am “Impressed” (he loves that word).

I am not going to count my chickens but maybe it is beginning to make some sense to him.

 

It is well past noon now and he asked for and made his lunch at 12 on the dot.

 

And now I am off to take care of the gray stripe…

 

 

 

 

 

 

 

 

Please Translate – “Mom’s Office”

This post is yet another in a long line of posts about the way DC communicates or is not able to communicate.  Let me first say, in case you are new here; although he was non-verbal until he was seven years old – DC is now what you would call verbal.

Since is is the last day of Autism Awareness Month, I decided we could talk about communication one. more. time.

Verbal does not always equal communication.

He can recite lines from movies. He can usually tell me what he wants. He cannot always tell me when there is something wrong or if something has happened. Even when he has the words, he cannot always use them to communicate what he is trying to tell me or anyone else.

There are times when he will still use his sign language to help in his communication when something is important enough to him. In most cases if I do not get what he is trying to tell me right away, he gives up and just says “Nothing wrong”. Once we get to “Nothing Wrong” the conversation and whatever he was trying to tell me is lost.

As I have written before; one of the hardest things for DC to convey to me is when he is not feeling well or if something hurts.

Over and above the fact that he DOES NOT want to go to the doctor or “rest” at home, he does not often have the words to tell me when he does not feel well.  Or he DOES have the words, but cannot put them together or figure out how to use them in certain situations.

This is an example of a conversation we had just the other day…

DC came running into the room stimming wildly and it was apparent that he was upset about something.

I asked him what was wrong.

DC: “My heart is beating, beating, beating”

Me: Does your chest hurt?

DC: “No! My heart is beating – boom boom”

I do understand after all of these years that his “Heart Beating” means that he is upset about something or something scared him. It does not have anything to do with his heart but I always ask (just in case) if his chest hurts.

Me: Can you tell me what happened?

DC: (pointing to his mouth) Sink!

I went into the kitchen and he pointed to the sink – which was relatively clean.

Me: What happened?

DC: (annoyed that I did not understand) MOM’S OFFICE!!!!

Now, knowing DC as I do, I had to search my brain and think of something that happened to him at some point over the years when he was at work with me.

Fortunately, I remembered.

He was in Middle-School. MIDDLE SCHOOL!

When he was younger, he would “tell” everyone that he was sick; actually he would just sign “sick” with no other details. Most of the time he was not sick at all, but he knew the school nurse had jellybeans in her office so that is where he wanted to be! Then he discovered when he was finished with the jellybeans that they would call Mom to pick him up. Most of the time, knowing that he really wasn’t sick, I would pick him up and bring him to work with me – which he loves, so I wasn’t really winning any battles there, but I had to work. (We’ll forget about the ONE time, he threw up all over my office, the ONE time he really was sick and no one believed him. I guess he showed us!) ~ From:   Look in the Mirror and Spit Cookies, September 2013

Me: Did you throw up in the sink?

DC: Yes!

Obviously, not very much and he must have run the water before coming to get me. He has been jumping and dancing around the kitchen so I suspect that all of that activity was the cause of the situation as he did not seem sick otherwise.

Since the “Spitting Cookies” incident (linked above and here) he has learned and does know the word. He has used it before, but just could not figure out how to use it to tell me what was wrong.

The plus side of it all is that he tried to tell me and did not give up (although one would have to be me in order to figure it out). He does that sort of thing often. He brings up an example of something that happened at an earlier time to try to get his point across. This often works with me, but everyone else that he deals with in his day to day life do not have all of this information stockpiled in their memory and often do know know what is important enough for him to remember. What is important to him is not always what others would even give a second thought to.

Verbal and Communication?

Two very different things.

 

 

 

Speaking of Love

There are many words and phrases spoken by DC that he does not pronounce properly. Most of the time I will help him to try to pronounce them correctly or at least a little closer to correctly so others are able to understand what he is saying.

There are also a few other words that are not pronounced correctly that I happen to adore his version far too much to correct him. That list is growing shorter and shorter because someone always comes along and decides that they just HAVE to teach him how to say it the “right” way.  It kind of takes a little chip out of my heart each time it happens.

Below is one of my favorite posts about one of my favorite words….

So far, no one has taken it upon them self to try to change it and should not even think about doing so.

Just don’t.

“Mom, do you love meeee?”

 

I love you Magly

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself.

DC can and does tell me that he loves me many times a day – complete with and accompanied by the “I love you sign”. I know that he understands in his own way, what that means. This is not to say that I believe it is always all about me. Much of the time it is but there are times when he just needs to have something to say. It’s kind of a comfort thing for him. He says it over and over again when he is in an uncomfortable situation or a place that is new to him.

But, back to me….

I especially love it when he, at 25 reverts back to “I love you Mommy” instead of Mom, Mother or Vickie.  He is probably one of the most lovable people around and I am willing to take complete credit for that.

Is it just learned behavior and not real emotion?

Is it comparable to the times that I have to make a rule because I know he does not understand something?

Is he just, in his mind, following another rule?

Is he just going through the motions because that is what he thinks he should be doing or how he should be acting?

I used to wonder about that when he was younger but now I am convinced that although I am sure that some of that lovability was originally something that he learned, it IS also very full of emotion.

All of the above does not mean that he does not hear his fair share of yelling because let’s face it, every behavior can not be blamed on his autism.

When these situations arise and he is “in trouble” and after I start finding his apology notes everywhere – we always sit down and have a talk.

“No matter how upset Mom might get when you do something you are not supposed to… I always love you. When you are in trouble, I always love you. You never ever have to worry about that.”

When he is “in trouble” and we have not had the talk in what he thinks is a timely manner, he will come to me and say “Always ‘loves’ you.” He knows it, but he needs to have the talk. It’s a ritual and it is comforting to him.

DC’s ongoing “I Love you” campaign has evolved recently. While all of the above still holds true, he has added, ” Mom, do you love me?” (in his high pitched squeaky voice with the emphasis on the “me”).  I know he is not questioning the fact. I know he knows this and I know that he just wants to hear it again. I also know that this line must be something he picked up from a book or a movie because he is using the correct pronouns.

Just to change it up a bit, my response to this question is: “I love you madly”.

Just to change it up a bit more, I will ask: “DC, do you love me?”

His response is another in the long list of words/phrases that he uses that I know I should correct speech-wise, but I do not because I love the way he says them. I hope that this response never changes.

Mom, I love you ‘Magly’.

No corrections necessary……….