No stuffing please

 

DC has been counting the days waiting for Thanksgiving to arrive and just know that he would never imagine keeping me out of the loop on this…… daily/hourly/every few minutes.

I do have to say that his ‘Thanksgiving’ pronunciation has improved over the past year but “firsday’ is still ‘firsday’

I am not really sure why he looks forward to this holiday so much. He will eat turkey (preferably with bones) but other than that, there is really nothing else “Thanksgivingy” that he will eat.

Turkey and bread. That is about the extent of it and honestly if there are no bones (legs or wings) to be had, the bread is really the main event. He will eat the turkey but he is not very excited about it.

Last year, he skipped the turkey entirely and went with prime rib – a big switch for him!

Stuffing? No! No way!

Funny thing about stuffing, though…. he will not touch it! Every year I tell him that stuffing is made from bread (as the song below tells us). Every year I tell him that when he was little, he would not eat chicken or turkey, but he loved stuffing.

I tell him that he loved stuffing so much that I had to buy stuffing on a regular basis and hide chicken in it to get him to eat chicken or turkey. He loved stuffing and hated chicken.

Now-a-days as we all know, he eats chicken almost every day

or “Chicken with bones and sprinkles”

-although I’m sure the wings will do in a pinch.

It’s all about the bones.

“Sprinkles” being Mrs. Dash Seasoning.

But he will not touch the stuffing.

He does look forward to seeing his aunt and uncle. He enjoys staying in a hotel.

And there’s dessert. We can’t forget the dessert.

Or the bread..

But NO stuffing…

Happy a Happy Holiday!

*****

Reposted with a few additions from Thanksgiving 2017 

 

Party Choices; The choice is not always clear.

This is more about DC’s ability (or inability)  to choose between two or more options than it is about Halloween but Halloween is a factor in this particular story.

DC takes Halloween and the costumes he chooses, pretty seriously. It seems as though we used to have more parties to attend and more costumes to put together than we do now, but this year we knew there would be the basics, Best Buddies, Camp and Halloween night. The camp party was scheduled for Saturday at noon and Best Buddies for Sunday at noon.

Perfect! Right?

No…

A couple of weeks ago it was announced that the Best Buddies party was being rescheduled from Sunday to Saturday at noon; the same day and time as his camp party. I knew this was going to be a battle. Not only would he have to pass on one party and give up on one costume, but he would have to UNDERSTAND that he could not do both.

First of all – it was on the calendar and when something is on the calendar, it is engraved in stone.

Second of all – This was not something getting cancelled, which is usually cause for some trauma, but he gets over it. This is not “Mom” making a mistake on a date, where there is no choice involved – which is not fun either but he gets over it…… eventually.

This is him knowing about and planning on attending both, and now having to make a choice between them.

DC cannot always grasp this concept. He does not always understand, as many times and ways I have tried to explain, that if he chooses one that means he can’t go to or have the other.

It is not that he expects to “have it all’, it is more like he thinks of choices as being what he chooses will now come first and the thing he did not choose will still come later, just not at the originally expected time.

The many years of explanations and the times when he had to make a choice and did not get to do or have whatever he did not choose, does not seem to stick or help him understand any better the next time.

I knew for a fact that DC was not going to be the only one who might have a difficult time understanding that going to one party means not going to the other.

Originally, when I first explained the change and conflict to him – the chose the Best Buddies party, but when it was explained that he would not be able to go to the camp party, he changed his vote and went with camp.

After a week of him yelling at me at random intervals that he wanted to go to the camp party, I stopped explaining that it meant he could not go to Best Buddies. There is always a point where the explanation causes more anxiety than the choosing.

Even though I never want to see that heartbroken look on his face after I was sure he understood the choice only to discover later that he really did not, I stopped mentioning the Best Buddies party.

He continued to randomly yell about wanting to go to the camp party for the next week as well. I continued to tell him that he was going; no worries. There was no more mention of the Best Buddies Party on my part or his.

I still waited a little while before telling his Buddy that he would not be attending just to be sure he did not change his mind.

On Friday morning (the day before), he brought up the Best Buddies party out of the blue but I told him that he chose camp and I already told his buddy that he would not be there.

No reaction….. Phew!

On Saturday morning he mentioned a few friends that would be at the Best Buddies party, not at camp. I again explained that he chose the camp party. He was getting his costume on at the time which distracted him so I did not get a reaction about his party choice.

He went to camp and had a great time. There was no mention of Best Buddies.

He even found a “Captain Hook” to go along with his Peter Pan costume. (bonus theme and he loves babies!)

 

I was sure he would start on the Best Buddies party as soon as the camp party was over, but he mentioned nothing about it when I picked him up.

I haven’t heard anything since.

If he does not mention it by the time Halloween night rolls around, I am home free and I will know that he “got it” – but as long as there is time in his mind for another party before Halloween night, I cannot be sure.

I am thinking positively (with fingers crossed) because it really seems like he understood….

Finally!

Maybe?

We will see.

 

 

 

 

 

 

Supernatural – I wish I was able to hear that Conversation #SPNNJ

 

This week the Finish The Sentence Friday prompt is a Listicle – “Share 10 photos from your phone”. There could not have been more perfect timing.

As you may or may not remember, I lost all of the photos that were stored on my computer a few weeks ago. The computer went to the “computer guy” just before we went away for the weekend. It took much longer to get it back (with some of the photos recovered) than I expected, so all of my photos from that weekend are still on my phone waiting for a computer to download them on to, so I could write about the weekend as I do with every Convention, ComicCon or the like that we attend. They were already cropped and cartoonized (not a word, I know) and ready to go.

So here goes.

As you also may or may not know; DC loves New York City. He also loves Kim Rhodes. He met her last year at the some convention in NJ that we would be attending this weekend and I believe it was the highlight of his year (Let’s Talk About Kim Rhodes #SPNNJ)

As we did last year, we decided to take the weekend to go to New York City on Friday to do “DC-Stuff”, as he puts it, go to the convention on Saturday and back to New York for more “DC-Stuff” on Sunday.

Photo #1 (since this IS Supposed to be a “list)

“DC-stuff” means Times Square, The Disney Store, The M&M or Hershey Store (he chose Hershey this time), The Book Store and Lunch at Hard Rock. We accomplished that on Friday.

The hotel where we were staying was in NJ, within walking distance of the convention center.

Photo # 2

 

He started getting a little bit anxious at the hotel. He was done “of” walking (DC-Speak) but also excited about the next day. But this is normal for him. He “Flapped Furiously” for a while and got it out of his system.

Photo #3

Because I have learned much over the years, we had to go over the rules. Briana Buckmaster has beautiful long flowing blonde hair so he had to promise not to touch it (he would be reminded again the next day, but it never hurts to begin the reminding early) and of course, he is not allowed to “pick up the people” (a lesson I learned the hard way)

Saturday came and DC did a <insert sarcasm font> “little bit” of stimming outside the hotel (I’m sure it is on you-tube somewhere) and once he got himself together we walked over to the convention center.

He had his picture taken with Ruth Connell who had her hair up, luckily – but before he got anywhere near her, he was made to listen to the rules again – just to be on the safe side.

Photo #4

We sat in on the panel with all of the women characters where he got his first glimpse of Kim Rhodes. I had purchased autograph tickets for Kim Rhodes and I thought Briana Buckmaster because DC really wanted to say or hear her say “Okey Dokey” or in DC-speak “Ok-kiddy-Do-key” but #MomFail, I did not buy both. I don’t know what I was thinking. But he got to see Kim Rhodes, so he was sort-of okay with my error.

In line, waiting for the autographs, DC was, for some reason rehearsing “This is my mother, Vickie *LastName”, but when we reached the table and Kim asked him who I was he just said “Vickie” – not his mother – just Vickie.

Onward to the photo ops.

Photo #5

First ….. Kim Rhodes. The ‘Boy” is very happy, in case that isn’t 100% obvious.

Photo #6

Even though I failed with the autograph tickets, I did get a photo-op ticket for Kim and Briana Buckmaster together. Briana had her hair up too, so she was safe from DC the Hairdresser. He was thrilled, as you can see. I did not hear if he was able to give her an “Ok-kiddy-Do-key” and if she would even understand what he was saying if he did, but he was one happy guy. He wore his “Jody (Kim Rhodes) and Donna (Briana Buckmaster) shirt very proudly that day.

Once photos are taken, it is a good amount of time before they are printed and put out on a table in the vendor room. We only had one more photo-op to go before we were going to leave, have dinner and go back to the room for a break before we came back for the concert at 930. I try not to schedule anything after 3 or 4 so we have that time to take a break before the concert. It’s a long day for DC. Doug checked the photo table while we were in line for Misha Collins.

The last photo-op of the day and I have to say, my favorite photo of all time.

Photo-ops move quickly and there is not really any time at all to say more than “hello”. I was standing off to the side and saw that Misha Collins was taking to DC and DC was answering. I do not know if he was getting actual answers to the questions he was asking but I could see that DC seemed to be responding to whatever he was saying. It was more than a quick “Hello, what is you name”.

Whatever they were talking about; the conversation led to this photo.

Photo #7

Absolutely the

Best . Photo . Ever.

Let me also point out that DC TOOK HIS GLASSES OFF for the photo! That does not happen.

I did not see the photo until after we left and had dinner. We were able to get the first two photos before we left he convention center. We stopped at Outback on the way back to the hotel. After dinner Doug volunteered to go back to the convention center to check for the photo while DC and I went back to the hotel.

DC and I were sitting at a table outside the hotel when I saw Doug coming down the road with the photo, laughing. I don’t know if he laughed all the way from the convention center (I would have) but he was sure laughing on the way to the table.

Best picture ever.

It makes me really want to know what they were talking about before it was taken.

After our break, we went back for the Saturday Night Special (the concert) where DC got to hear them all sing.

Photo #8

Photo #9

Photo #10

Photo #11 (Bonus)

The concert ended with Justin Guarini. I am not sure why he was there, but……. cool. It was also a bonus for Doug because if you know Doug at all, you know that he has no idea who anyone on TV or in the movies is, but he did know who Justin Guarini was, not from American Idol but from American Idiot – one of the few Broadway shows that I dragged him to that he actually enjoyed.

A few things I noticed, though. We’ve been to a few conventions over the years and this one is one of the most organized conventions around, without a doubt.

DC had a few minor meltdowns while we were there. No one stared, no one made an issue about it. One lady was concerned and asked me if he was all right. I started to explain that he has autism and he gets a little bit anxious and before I got that all out of my mouth, she said “Oh, I know. Does he need anything?”

During another outburst, the woman behind us in line did not even flinch and offered us some granola bars in case he was hungry.

I guess I am not used to people knowing and understanding without me having to explain. It was nice. Maybe the whole “awareness thing” is doing some good in some places. It certainly was not the case when he was stimming outside the hotel that morning.

Sunday consisted of sleeping late; as late as DC would allow and back to the City for the rest of the “DC-stuff” on his list.

Central Park

and the Eloise Store at the Plaza

 

****

This has been a Finish The Sentence Friday Post. This week is a Listicle and the prompt; Share 10 photos from your phone.
Finish The Sentence Friday is hosted by: Kristi at Finding Ninee and  Kenya at Sporadically Yours

 

 

 

 

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)

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

 

 

 

 

I have a blue light

 

I have a blue light. It is one of those energy saving bulbs that lasts what seems like forever. It has been in my outside porch light for a good 4 (maybe more) years now (and yes, I did notice that there are plenty of dead bugs at the bottom in this photo – that’s life.)

One Halloween about 4 years ago (maybe 5) it was my turn to host the annual Halloween/Trick or Treat party for DC and his friends. We would still be giving out candy so I wanted to find a bulb that would not interfere with the lights and decorations I had put up, as the regular porch light bulb would.

I rummaged around and came across an old bulb from back in the day when I used to Light- it-Up Blue.  The porch light is not easy to change and if the bulb works, I am not changing it. There it sits – four (or maybe 5) years later. Obviously, I do not turn my porch light on all that often for it to last that long.

We did not have Autism Awareness when DC was young. We did not have World Autism Day, so when Autism Awareness started to become a thing, I was all for it. I naively believed that the awareness would encompass all of the spectrum.  If your child happens to fall somewhere on the spectrum other than where the characters that we see on TV fall, you are not allowed to speak about it. Don’t get me wrong – awareness and acceptance is a necessity but some of us need more.

As I get older and DC gets older, I worry more and more about his future and his safety (don’t worry, I am not going to rehash all of my fears for the hundredth time). Awareness is/was necessary though. It brought us more programs into school systems and more understanding and hopefully, acceptance of the students. Awareness has done next to nothing for some of our children as they become adults.

With funding for the disabled being one of the first things to be cut in every budget, even some of those school programs are going away now. I have already said that DC, after all of the people I have put in place as guardians after I am gone are gone, will have to live in a group home. What if there is no funding for that sort of thing when I am gone? What if everything I have put in place falls apart due to these cuts or due to one little miss-step? What would have happened if our whole Social Security debacle happened after I was gone? (A debacle that turned out to be Social Security’s  fault, but they were perfectly willing to take his benefits away, knowing full well that it was their fault – this is a 3 part-er so if you are interested, start here). Who will be there to fix it all for him? Will he be out on the streets or institutionalized? He would not survive. He is in a staffed day/work program right now. He loves it. What happens when their funding gets cut (as it does every year)?

April is a very depressing month for me now-a-days. It really is. Please do not tell me that I am undervaluing my son’s life by saying that. I am not in any way.

He is happy.

You should be so happy.

I love our life.

He loves his life.

I would not change a thing about him, except for his future.

I worry for his future and it is not for you or anyone to judge a parent, any parent who is just worried for their child’s future. His future is not your future, it is not your child’s future, you cannot compare.

I do not disparage those that are celebrating. I do not disparage the associations/charities they choose to support or not support. I do not disparage Autism Awareness at all. I am glad there is push for awareness and acceptance, but it needs to encompass everyone and we need more – much more. 

So I will just continue on my way, writing stories – some with humor and some not, some about progress made and some not. But through-out those stories, it should be apparent to you just how much I love this “boy” and how proud I am of him every day. If it is not in your face apparent in one or two; all I can say is that everybody has a bad day once in a while. I will continue to write about DC and our life  just to raise awareness to another side of the spectrum. I will continue to call and email my representatives whenever the threat of more cuts are in the air. I will continue to plan and research other methods of making sure he is safe and taken care of.

So yes, I have a blue light. It is left over from Halloween, 4 years ago (maybe 5). It may be turned on if someone is stopping by  after dark, but it means nothing other than the fact that I am just too lazy to switch out a perfectly good, working light bulb.

I am glad there is an awareness day and an awareness month. I am glad it has also become an acceptance day and acceptance month.

We need more.

 

 

 

 

‘Twenty-Seventeen’

I wrote this post when DC turned Twenty- Five. I re-posted it when he turned Twenty-Six, or ‘Twenty-Sixteen’ in DC-speak.

Twenty- Five was hard to wrap my head around. ‘Twenty-Seventeen’ (27 in DC-speak) is even harder. We’re moving closer and closer to 30 and I may never get over that.

Many times over the course of a day, DC will tell me that he loves me, complete with the “I Love You” sign. I, of course would say and sign it right back. This has morphed over the years in to our own little thing, where we connect our two “I Love you” signs into one and I love it!

This child is the love of my life. He is my joy.

My wish for my boy is that the rest of his life is 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”

Twenty-Five


6 3rd party_0003

This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).

TWENTY-FIVE!!!!

I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, every day since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.

‘Happy tears’ – I told him. He loved that.

He has come so far in those 25 years….

 

From the boy whose only word until he was almost 7 years old was “”Momma” –

To the boy that eventually moved on to –

“Mommy” – and then –

“Mother” when he’s feeling a bit more formal and/or reciting Disney.

To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

 

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –

To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

 

From the boy with the very limited menu who I thought would never gain any weight –

To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

 

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –

To the man who can still have the random delayed reaction,  but now his Mom can usually recognize it and figure it out much more quickly.

 

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –

To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.

IMG_4131

 

From the boy who, I was told would never speak

To the man who never stops talking.

 

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying,  “If he wasn’t so loveable, I would think he hated to be touched”

To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.

I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.

If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……

IMG_4076

 

 

 

 

 

 

 

Traditions New

 

Three years ago we left for vacation early on Christmas morning.

Two years ago was the very first time in my life I believe, that I did not have to go anywhere on Christmas Day.

Back, many years ago when I was single and working in a convalescent home, I would always volunteer to work on Christmas Day firstly because I absolutely LOVED the clients which turned out to be a big reason why I decided going to school for nursing would not be for me – I just got FAR too attached to the patients/clients.  Secondly because I could avoid the whole Christmas dinner with relatives and just show up later, after work.

Then I became a mother and still, staying home never seemed to be an option. DC had little time to “play” (I use the word, play loosely) or use his gifts before we had to leave and go somewhere for dinner.

We go to my mother’s on Christmas Eve, a tradition she started many years ago for the same reasons – too much to do on Christmas Day. He gets his Grandma fix. We have dinner. We open presents. He gets to see his “Fam-ill-lee”, which he loves. So he is not missing out on any of the regular Christmas festivities.

I believe it may have been the vacation three years ago that finally allowed us to break the Christmas Day tradition for the following year and, this year became the second Christmas that we just stayed home. DC was happy. I was happy. Doug who is not really a “holiday guy” and is really only in it for the food, was also happy.

DC had time to look at and play with all of his loot. He had time to just “chill out” (his latest phrase) and like the year before, we went out for Chinese food at night for dinner. We are lucky that there happens to be a pretty good sit-down Chinese restaurant about 5 minutes away, in the next town.

Chinese Food Is a Newer Development in DC-land: We all know that DC is a picky eater. There are only a handful of items he will eat in a restaurant. You see, eating out is supposed to be fun, so yes, he will eat a salad at home, but don’t ask him to eat one in a restaurant. He will eat vegetables at home, but vegetables are not restaurant foods, so just forget it. He will eat pasta at home (another newer development) but he is not happy about it and will NEVER eat it anywhere else – correction: he did twice but both times he was at a party and there were no other options.

Restaurant food is:

Cheeseburger and french fries

Wings

Pizza

Garlic Bread

Chicken Tenders

BREAD

His limited menu, limits our dining out choices, especially on Christmas night when almost all one can find open are Chinese restaurants.

About a year ago, we ordered takeout and the only thing that DC would eat on a Chinese food menu was the wings, so that is what he ordered. I ordered the sweet and sour shrimp. DC saw it. It was battered and fried, so he wanted to try it. I warned him that there was shrimp inside, but it was battered and fried so he was not going to pass it up.

He liked it.

He came back for more.

We determined that this was not just a fluke when the next time we ordered takeout he ordered the wings and again took half of my ‘Sweet Sire Shimp‘.

So now our new Christmas tradition of Chinese food is something he looks forward to and not something we have to research and figure out what we can talk him into.

We went…..

There was no heat….

It was okay though….

We, along with the 3 other tables of people, ate with our coats on…

DC, in his short sleeve shirt (we just recently transitioned from his fall coat to his heavy winter coat, so the transition from short to long sleeves will have to wait a bit) did not want to wear his coat. One does not wear a coat while eating in a restaurant.

Normally I would try to avoid this argument, but IT WAS TOO COLD not to make him wear it.

He got over it when I told him he could wear it over his shoulders like a cape.

 

We ordered a Pu-Pu Platter, which he thought hilarious.

He ate the wings.

We had the rest.

He ordered his “Sweet Sire Shimp

 

Let’s just say, normally when DC is done eating – and he eats very fast – he is done. Keeping him occupied while Doug and I finish is not always easy. He has his book, but that only lasts so long.

Believe it or not, we stayed, I am guessing close to an hour after he was finished talking to the people in the booth behind us – which is what one does in an almost completely empty restaurant. He was totally included in the conversation and seemed to be enjoying it. He never once asked to leave.

They were visiting from the warmth of Arizona and staying in a hotel so unlike us who planned to be there,  I imagine that this restaurant was one of the very few options open for them.

We had a good time and there were hugs all around when it was time to leave.

It just goes to show that you do not always have to do what you have always done, just because you have always done it or are expected to. You can make your own holiday traditions and have a good time doing it.

 

Merry Christmas and Happy New Year from DC, Me and Doug too!

 

 

 

 

 

 

 

 

 

We are allowed to Vent sometimes…

I wrote this post a few months back but due to the string of crabby posts I had published around that same time, I decided to sit on it for awhile…..

Just a few days ago I was involved in a couple of discussions that were not about this topic exactly,  but sort of around the same areas of frustration, I remembered this post and have updated it to include the other topics of discussion….

I am also realizing that this is what is becoming my annual, before the holidays crabby post.

I do want to be very clear that I am in no way complaining about my child. I love him more than life itself and there is nothing I would not do for him. This has little or nothing to do with him directly, just the people around us (all of us).

(updated portions are in italic)


I was reading a face book status recently written by the mother of an autistic adult son. The post was about a certain event that her son was planning for. He was planning out everything everyone was going to do for him and give him, while never giving a thought about doing one thing for his mother (the poster).

She was venting…. just venting.

Now… parents of Neurotypical children seem to be allowed to, and quite often do vent, and I have read much worse from some of those parents. For some reason, we are not.

When we do, one or more of these things happens:

1. we get a truckload of advice

2. we are made to feel as if we should somehow be above complaining

or

3. we have people feeling the need to explain autism to us.

The comments she was receiving came mostly from group number 3 and I really started to feel bad for her.

“You know he has autism”

“That’s what autism is like”

“Being self-centered can be a trait in (SOME) autistics”

News flash….. we know this. Just because we know this does not mean we do not still have our feelings hurt from time to time. We are still human.

DC is a pretty lovable guy and I do know that he loves me. Not being from a very affectionate family, except when we were forced to hug and kiss every single person who came to visit or we went to visit (children should never be forced to hug and/or kiss ANYONE if they are not comfortable doing so – my opinion only), I am sure I over-compensated for that with DC and some of his “cuddliness” is learned behavior – not all, but some. I also know that in his mind, everything is about him. I am not complaining at all, I know this. This does not mean that I don’t get my feelings hurt when his Dad shows up and it’s like the heavens have opened. Or when I know he is only excited about my birthday (that comes right before his) because HE is going to get to go out to dinner.

Sure, there are times when he goes out of his way to do something nice for me out of the blue, like bringing me coffee (sometimes out of the sink, but he tries) but the reality is that yes, he knows he is doing something nice, but he also knows he is going to be praised for it. He does it for the praise and I am his biggest enabler in that area (She says after buying and just finishing wrapping a gift to myself from DC, so he can be excited and praised for giving me a gift on Christmas. Do not worry, he is a man and practiced at the art of taking credit for anything given or sent with his name attached, whether he knows about it or not.). Being raised in negativity, I do tend to go out of my way to praise him for every little thing and I do love to see him happy. I am thankful that he does want to do nice things for me and others, no matter the motivation behind it. After all of this time and understanding everything I have learned and understand about him over these past 26 years, I still can have my feelings hurt. I know it is not his fault and I am sure that the face book status poster knows that as well, but sometimes we just need to vent – just like everyone else…

Sometimes we get our feelings hurt too – just like everyone else and there should be no shame or guilt in that…

****

I was recently involved in an “All kids do that” discussion. “All kids do that” is a pet peeve of many parents of autistic children and adults. It tells us that you believe we are exaggerating their behaviors or difficulties or worse….. feeding into them or creating them.

My reply: (edited because many of my comments written on my phone are strewn with typos and could be said a bit better if in front of a computer with time to think)

I think that much of the problem comes from it being very difficult to explain our children to people (especially when they are not listening due to their own preconceived notions). Saying that he can’t stay alone or he is impulsive does not give the full/true picture. Because we cannot stand there and give 1000 examples to make them understand – they just will not get it. This is a big reason why I continued to blog. Lots of Stories to give a snapshot of how his mind works. Unfortunately the people who might benefit from understanding how his mind works probably do not read Autism blogs. Believe it or not, I get the same response “all kids do that” and I have to remind them that he is 26 and all kids or adults do not do that.

(Please listen to Val’s video that came out of the same conversation: THE BLAME GAME – WHY WE BLAME OURSELVES BUT YOU SHOULDN’T (VIDEO) )

****

Coming in on the heels of  “All kids do that” for me is “All parents have to do that”

I have been doing this parenting thing a long time now and I have come to realize that some events and gatherings are just not worth it. Most times, DC really could not care less if we go or not. There are a few exceptions to this and we do always attend those gatherings. 

When I try to explain that these events are not enjoyable for me (and as I said, he does not care if we go or not) because I have to watch him every minute – not because he will do something horrible but because he is not always aware of his surroundings and I have to make sure he does not bulldoze over a smaller person or child. He gets excited and wants to hug everyone. He does know to ask permission first, but there are times when he just gets too excited to remember to ask. Some people do not like to be hugged. He is a big guy and a bear hug from him can make you feel as if you are being crushed. I have to watch that he does not stick his hands in the food and a hundred other things.

“All parents have to do that”

Really? 

Do all parents get relegated to the basement when it is announced that all of the children have to go downstairs? The other children’s parents could let their children play in the basement without them, but I could not do that. I still could not do that today.

After 2 1/2 hours (I know this due to the number of times we watched the Winnie the Pooh video) in the basement while all of the adults were either upstairs or outside playing football – I had to wonder why we felt we had to attend. I could have been watching Winnie the Pooh in the comfort of my own home. How was this enjoyable?

Do all parents have to make sure their 26 year old child is in their line of sight at all times?

Do all parents have to bring extra gifts for their child to open so while everyone else is opening “just what I wanted” gifts, he does not end up with just an Autism Awareness Bag (just a bag – a shopping bag) or a mini-sharpie on a key chain or one of those little lunch boxes that he knows come filled with candy, without the candy? 

Your child tries numerous times to say hello to a child on the other side of the room. She just stares at him as if she is terrified, and her father, instead of asking her to answer him, puts his arm around her as if he was protecting her from this horribly scary person who is saying hello from across the room. Do all parents have to lie to their child by telling him she answered but he just did not hear her, so he won’t have his feeling hurt?

Don’t get me wrong; DC is not sheltered. He does many things and goes many places, but I have learned over the years that these types of gatherings are just not fun for anyone.

While we are on the subject:

If your child is an adult…..

Do you have to look for a babysitter if or when you want to actually go out without your child? I do.

Can you just run to the store whenever you need to? I can’t. (I could be there and back by the time I round him up and get him out of the house)

Can you just relax at the pool like everyone else while your adult child swims? I can’t.

Do you have to watch your child while he eats so he does not choke? I do.

Do you have to stand outside the rest room while your child is using it because 1. you don’t know who else might be in there and 2. in case he has a seizure? I do.

Again, I am in no way complaining about my child or our life, but hearing “all parents have to do that” just sends me over the edge. All parents do have to do that…. for a time, not forever. I do not have a problem doing this forever, I just do not want to have to explain myself to anyone anymore.

So, yes by all means invite us. If we can make it, we certainly will. If we do attend, please refrain from the advice, the guilt or the lectures about everything we are doing wrong and how you can do it better.

If we decline; “all kids do that” or “all parents have to do that” is not the road to take to try to change our mind.

Wishing you all a Happy and Anxiety Free Holiday.

 

 

 

 

 

 

 

 

 

Holiday Reruns – Lessons from Santa

train s

December, is the time for reruns. I love reruns, especially holiday reruns. The following is a post from December 2014 about the important lesson DC and BB learned while riding the Santa Train.

******

Lessons learned on the “Santa Train” – 2014

train

(Code word of the day: “Supplement”)

As parents, we all come to the ‘Questioning the Existence of Santa’ crossroad sooner or later. It is a sad milestone. It begins to be difficult for them to understand and believe in something that they can not see. Sure we see Santa and his helpers quite often during the months before Christmas, but never during his Christmas Eve deliveries. This causes our children to question his existence. Why can’t they see him? Why must they be asleep? As I explained to DC, Santa has a job to do. If he took the time to stop and visit with the children in every house he delivered gifts to, even with his magic, he would never be able to finish in time to get back to the North Pole to celebrate Christmas with Mrs. Claus and the elves.

It took DC many years to understand Santa. He knew he would receive gifts, but the whole idea of Santa was not something that could be understood easily. His not understanding, did not stop Santa from leaving him gifts.

When it finally clicked and he did finally get it, he was all in! Now that he does understand, he would never and will never question his existence.

The one problem was, DC ‘s Christmas requests have always been small (in size) gifts. Santa could very well bring him 20 DVD’s, but the pile of gifts (visually) would be very small. DC doesn’t understand cost/size vs. number of gifts. He expects a very big pile of gifts. So, over the years I would always “supplement” the Santa pile with gifts of my own.

Being a single mother for more than 20 years now, I am the sole “supplement-or” (yes, I know that is not a word) of DC’s gifts. Which means I not only “add” to what Santa brings just to make the pile look more exciting for DC, but I also, of course, have to buy additional gifts from ‘Mom’. This gets to be a little bit overwhelming for me, not only in cost, but in trying to come up with other gifts ideas to make that “pile” he needs to see.

Now that DC is an adult, and the items he asks for are smaller still, it is becoming harder and harder to “supplement” Santa’s  gifts, to make that Christmas gift pile”,  I did finally have to confess to him that some parents, with adult children, have to help Santa out a little bit. Santa has so many little children to deliver packages to on Christmas Eve, that it is hard for him to get to everyone. So now that the is an adult, Santa only delivers his stocking and the rest of the gifts in his pile are from Mom. Santa always did a pretty good job with his stocking, by the way. He was fine with this. As long as Santa is coming, even just to bring a stocking, all is well.

Coincidentally, the morning I read the post from Autism-Mom, was the day that DC, his best friend, BB, BB’s Dad, Doug and I were going to take a ride on the Santa train.

Earlier this week, BB had just been told by one of his other friends that he was too old and should not still believe in Santa. He was upset by this, but BB knew better. He knew he was correct in believing.

Both DC and BB were very excited about riding the train. They always have the best time when they are together anyway.

stst2

Santa boarded the train a few minutes into our trip. He received more hugs that he expected, I imagine.

BB mentioned to Santa, what his friend had said to him that week. Santa took a little bit of time to talk about it with BB and DC.

(This video below is very poor quality – it was dark on the Santa train, but you can hear some the conversation and Santa’s advice to BB)

“Those who don’t believe, well they are the one’s that are missing out” ~ Santa Claus

So there you have it, straight from Santa’s mouth. BB felt much better. He knew it before but now he really knows that he was right all along…