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 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…

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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) )

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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

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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.

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Lessons learned on the “Santa Train” – 2014

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(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.

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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…

 

 

 

 

 

 

 

 

That year we weren’t home for Christmas..

 

The holiday season is here and I will admit to having a bit of a Love/Hate relationship with holidays in general. I want to love them, I do, it just does not always work out that way.  I have reached the age where I should be able to place a 2 or 3 foot silver Christmas tree on a table somewhere and have that be the end of it, but I may never achieve that particular rite of passage because of course, DC loves the holidays.

I am glad he does and watching his excitement does help me get more in the spirit of things (that and watching too many Hallmark Christmas movies).

He is excited, so I am excited for him.

A few years ago we decided to move our then regularly scheduled, first week of January vacation to the week of Christmas just to avoid all of the holiday hoopla.

Did we choose a “Christmassy” destination like those found in the Hallmark movies?

No.

We chose Disney because nothing else could take the confusion out of or help soften the blow of a “different” Christmas than another trip to Disney.

I was still worried that this would not be Christmas in DC’s eyes because Florida is really not the place that comes to mind when one thinks Christmas.

And then I worried about the gifts…

From 2014:

The Christmas Vacation Dilemma

A few days before Christmas, I read a post from another favorite blogger of mine, Mother O’ Jim, titled “When Delaying is Enhancing…” . The blog was about her son’s Christmas anxiety over a gift he knew he was going to receive (give it a read if you have a minute) and the steps taken to minimize his anxiety.

While I was reading this post I was thinking about DC. Although he does get very excited and anxious around Christmas-time, reminding me many times everyday that “Christmas is coming soon” – he does not seem to get as anxious as Jim from the blog.

I was a little bit concerned about this Christmas though. Everything about this holiday season seemed to be different. Thanksgiving is normally spent at a restaurant (the same restaurant) with DC, Doug, my brother and sister-in-law and at times, my niece. This year, my niece had moved out of state a few months earlier and Doug was away on a cruise with his sister and his father. The restaurant even seemed to be different, more crowded and much less organized.

DC’s Dad decided to go to Florida for an undetermined amount of time. He left in mid-November. He would not be here around Christmas for DC and for the first time ever, we decided to take our vacation a few weeks earlier than usual and were scheduled to leave Christmas morning. We had to leave the house by 8:30 in the morning.

DC does understand that now that he is an adult, Santa only brings his stocking. The rest of the gifts are from me (Mom). But, would he understand when he woke up on Christmas morning to only a stocking, even if he received the same big pile of gifts the night before? I explained this to him over and over again and he said he understood. This NEVER means that he really understands.

After reading the blog I spoke of earlier, I got a little bit more anxious about it. Jim was happy to get his gift early as would DC, but I know in his head, this would not – even if he agreed that it would – eliminate the expectation of the Christmas morning pile of gifts. I know this from the many, many times I have given him choices to do “this” or have “this” now instead of later or instead of doing or having something different. He agrees but then still expects whatever he traded away.

I realized that I would have to do more than explain it to him over and over again. I thought about showing him pictures, but then I realized that it would make more sense to him and he would not think he’s missing out if he saw the same pile of gifts just being given at a different time.

So I took a photo of our tree and another of the bookcase where Santa usually leaves his stocking and I usually leave his surprise gifts. Then I cut out photos of presents that I could move from one place to the other so he could see that he would be getting the same amount of gifts, just earlier than usual.

(These photos are not of our tree. The originals were terrible. It seems that every time I need to print – the ink just about gone)

Normally after opening gifts at my mother’s, we come home and DC opens the gifts that are already under the tree. There is usually only a few because he knows he’ll be receiving Mom’s hidden gifts in the morning with his stocking from Santa.

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Gifts from Mom on Christmas Eve

More gifts from Mom and Stocking from Santa on Christmas morning

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More Gifts From Mom and a Stocking from Santa

I had him move the gifts himself, from Christmas morning to Christmas Eve.

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Christmas Eve – ALL of Mom’s Gifts

So…..Christmas morning would be just Santa.

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(Santa would surprise him with another stocking at the hotel when we arrived, but he was not aware of this yet)

We did this every day until I was as sure as I could be that he understood that he was getting the same amount of gifts… just earlier.

Still I was a little bit nervous about Christmas morning….

He was up very early as usual – this was fine since we had to leave early.
He saw the stocking filled with everything he’d asked Santa for. He was happy, maybe not as excited as he usually is, but he wasn’t disappointed – that had been my biggest concern.

There was enough time to use and play with everything in the stocking and enough time to watch the entire Peter Pan Live DVD he’d asked for.
He never made it through the 3 hour version when it was live on TV, but without commercials, it was only an hour and a half!
I am still not a fan….but this time around, DC really enjoyed it.

As DC would say, “Phew, I was very nervous about this!”

Fortunately, it worked out well and he had a Merry Christmas!

As for me, I am still in search of that Hallmark-like Christmas Town and that 3 foot silver tree remains a dream.

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This is a Finish the Sentence Friday post:

Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular sentence. This week’s prompt – “The holiday season is coming, and…”

Visit the link at Finding Ninee to read more FTSF posts.

It’s Thanksgiving..

 

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.

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..

Happy a Happy Holiday!

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Happy Thanksgiving!

(November 2015)

Wishing you all a very Happy Thanksgiving…..

Someone I know is looking very forward to a turkey leg –

or “Chicken with bones and sprinkles”

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

It’s all about the bones.

But bones aside,  right now he would just like to wish you all a Happy Thanksgiving!

 

“I Love you, Mom” (Just a little Thanksgiving Quickie)

(November 2013)

DC flashing the I Love you Sign as he does almost anytime he walks by me.

DC flashing the I Love you Sign as he does almost anytime he walks by me.

Who would not be thankful for this wonderful child who will just flash me the “I Love You” sign, just because he happens to be walking by or just randomly peek around the corner to say “I love you, Mom”.

Happy Thanksgiving…….

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Autism in the Old Days: The Spectrum, Cures and Treatments

 

(This post and it’s counterpart “Autism in the Old Days: Diagnosis via St. Elsewhere” are written strictly as a remembrance and as a comparison about how times have changed and how much in the dark we were as parents back when DC was diagnosed. It is about all of the things we did not know and how differently things are handled today. But over and above all of that it is about the slow process to the realization of not necessarily having to follow every direction laid out in front of us, just because the presenters, be it doctors, teachers or therapists,  are supposed to be the ones that knew better. Having to figure out for ourselves that the way things were presented and taught to our children and us, as parents, was not always the best way to go about things.)

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Back in the “Olden Days” (when we were all walking uphill in the snow to AND from school) when DC was diagnosed (the early 90’s) there was no internet to speak of. There was little information about autism readily available to parents. Yes, there were a few books that I’m sure every parent owned, but really not much else. We had to depend on our doctors and the school system.

One of the first books that I read was a book called “Let me hear your voice”. I remember that even though it was a book about “One family’s ‘triumph’ over autism”, it did not offer a lot of hope. Their child was diagnosed early; at one year of age. They had the resources to provide in home intensive behavior training, something that I would never be able to do.

As I mentioned in my last “Autism in the Old Days” post, DC was not officially diagnosed until he was 5, not for lack of trying, so the other theory that was in wide circulation at the time was that before the age of 3, a child’s brain could be retrained. If you missed that window, it was too late. I missed that window, again not for lack of trying.

I remember when DC was about 6 or 7, I was going on vacation – the first in years. He was going to spend the week with his Dad. I was anxious enough about that – not that I did not trust his Dad, but because I had not been away from him for longer than one of his overnight visits to his Dad’s – ever. But I also remembered that book. I remembered how the author went away on a four-day business trip and her child did not know her when she came home. I had to be talked into going by many, many people and still I really did not want to. I went and of course he knew me when I got home and all of that worry was for nothing. But this is what happens when you have to depend on little bits of information and are pretty much on your own trying to figure things out.

Back in the “Olden Days” there was the Lovaas Method. Yes, I had that book as well. Now-a-Days it is known as ABA. Again, this behavior training had not made its way into the school system and, like in “Let me hear your voice”, most folks that used this method had the resources to do this at home, 40 hours per week. I was a little bit leery about the whole thing. I thought a lot of it was harsh and really just cherry-picked a few ideas here and there from the book. (This is in no way an opinion or a judgement about ABA. I know that it has evolved over the years and is probably nothing like the original offering). It was quite a few years after DC left early intervention that the school system trained staff and designated a classroom to ABA.

Back in the “Olden Days” there was no spectrum, that we knew about anyway. Autism was Tommy Westphall, Rain Man and Bernard Rimland and his son (Autism Research Institute)  We knew about no one or nothing else.  These, our only examples of Autism, also did not offer parents much hope.

In my quest for information I remember attending a few seminars early on. One in particular given by a woman who spent many years as a Special Education teacher. A woman who I had met in a sign language class, who worked with autistic children, recommended this particular seminar and attended as well. The seminar was supposed to be about the progress that was made by many of her students over the years.  It certainly was not. I recall one man standing up and saying “You are not offering us very much hope here!” and she was not. It was all just gloom and doom, so much so that the woman who recommended it, apologized profusely to me afterwards.

That was the last seminar that I ever attended.

Now-a-days we are bombarded with “cures” and causes on a daily basis. Back then, if something hit the news, it was a big deal and please remember that we were programmed to believe that there was really no hope and that we were supposed to be looking for a cure.

In 1998 came the “Break through” in the treatment of Autism. One mother brought her son in for gastric/digestive testing. Secretin was administered as part of the test. Internet was now available but still not widely used as it is today. I don’t believe I even had email until 1998, never mind being able to figure out the rest of the internet.

“Media reports of an individual child’s dramatic improvement after a single dose of the hormone secretin administered during a gastrointestinal (GI) procedure (Beck and Beck 1998) appeared on television and the internet.” 

They were touting a cure. I did not even hear about this until I began receiving phone calls from friends, family and almost complete strangers. I have to admit that although we were still being programmed that a cure was the only thing we should be looking for, I was a little bit afraid.

I do not believe I have ever said this to anyone other than Sandy, my boss at the time, who made the mistake of asking about it and then had to listen and watch me bawl my eyes out because I felt guilty that I was afraid of this. What if it was real? How could I not have him treated? What if after he was treated and “cured”, I no longer had the same child? I felt guilty and felt selfish for even thinking those thoughts.

That being said, and I do realize that I have said it to the point where I should just make it my blog header:

My feeling of never wanting to change him has not changed, but he is older now and I worry about the future every single day.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

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Even with all that DC has accomplished over the years, the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings and will long out live all of us. He will at some point have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers.

 

It was a confusing time for many of us. Now-a-Days, when something like that happens and we hardly blink an eye…

DC accomplished far more than I ever anticipated he would, despite the “no hope scenarios” we were offered way back then. Much of his accomplishments came when I got to the point when I stopped reading and listening to the way it is supposed to be done and did what I thought was best. We all hit that point eventually.

I had to learn on my own, to choose my battles and understand that he does not HAVE to learn to do everything that other children his age can do.

If he can not learn to ride a bike (and why the hell was that so important at one time?) then he can not learn to ride a bike. He has an adult trike and he is fine with that.

If he can not learn to tie his shoes, they sell Velcro now.

This is not to say I gave up trying to teach him things. It’s just that I let go of the things that are really not important. I let go of the mindset that he has to be like every one else a long time ago.

Because he doesn’t….

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The therapies and theories written about in this post should in no way be considered as recommendations or as proven theories.  Like today, new theories and treatments come along every day (we had much less of it due to the lack of internet) but this does not mean that any of them are tested of proven. This post is about DC and I and what was going on around us at the time regarding autism.

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Next Installment: Autism in the Old Days: Spinning and Stimming