Bicycle races are coming your way…. (How the times have changed)

Bicycle Long ago (long, long ago) when I was 12 or 13, my friend Sue and I participated in a Bike-A-Thon. We met up with a couple of friends Joe and Ron, who were also participating. I remember it being a lot of fun with the exception of Susan smashing into and ruining Ron’s bike gears. We had so much fun that we went around the route twice (much to the dismay of the people who pledged by the mile – I was young; this did not occur to me at the time).

For years afterwards I tried to remember what this Bike-A-Thon was for. What cause were we supporting? No one I asked could remember either. As an adult, when I think back on it, yes we had fun, but I am horrified that this organization thought it was okay for a bunch of 12 and 13 years olds to ride their bikes down these very busy main roads. It was not like it is today, roads were not closed or even sections roped off. We were on our own on these very busy main roads, most with no sidewalks or shoulders, until we came upon a check point. But this is the way it was. We didn’t think a thing about it back then.

Well, Susan was cleaning out her mother’s attic a week or two ago and found the actual map of the course we took on this Bike-A-Thon and on it was the name of the Bike-A-Thon.

Backing up for just a minute. This morning I read an article that had the R-Word in the title. It was a good article and I wanted to share it (I eventually did), but I was so apprehensive about the R-word in the title. It needed to be there, it really did, but I am so uncomfortable with it that I really thought a lot about it before sharing it.

Having said that, below is the map that my friend found. She was just as apprehensive about sending it to me as I am sharing it here. Bike-A-Thon My heart skipped a few beats when I first saw it. I sat on it for a few weeks, but I thought that if you are as appalled as I was (and still am) at reading the name of the Bike-A-Thon, then let’s look at it as a glowing example of how times really have changed. It is so hard for me to believe that back then, this and a few other words I am guilty of using as a child were just okay. We didn’t know any better back then. Now we certainly should know.

I have gotten into plenty of discussions over the use of this word. Most of the discussions have been with people who really didn’t understand what the problem was as long as they were not using it to disparage someone with a special need – but they ARE! They are using it as slang for “stupid”. They are taking a word that was once used as an actual diagnosis and using it to describe “stupid”. I really don’t get why this is so hard to explain to people.

A version of this article was published on The Mighty – When an Old Flyer Reminded Me How Far We’ve Come With the ‘R’ Word

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All the…. small things

stacking Pizza and writing notes

I was talking to a friend of mine the other night at a Winter Guard Event. She was relating a story about how she had written a note to her daughter’s staff listing the items – the only items, her daughter was allowed to purchase that day. Her daughter added an item to that note and handed it in hoping no one would notice the addition.

Of course she was caught because the handwriting did not match, but my first reaction to the story was “That is SO Cool!”. Another friend agreed that it was fantastic. My friend laughed and of course knew that it was really an accomplishment, but you know…..she had to be the mother. She had to at least pretend to be mortified.

Much like when DC stacks 3 slices of pizza on top of each other thinking I will actually believe that he has only one piece -I have to be impressed. He thought it out and came up with that scam by himself – but on the other hand, I have to be the mother and tell him that it is wrong to be so sneaky and to lie.

I told her that if DC tried something like that, it would definitely be a blog post and even though it was not DC this time, a post it is.

This conversation reminded me of an old web-site my friends and I used to run, many years ago – probably 15 years ago when our children were young. One section of the site was titled:

The milestones WE Celebrate

Some might find our celebrations odd, but they are ours. We celebrate every advancement and every achievement, even if the achievement is something that most parents would frown upon – we do not. To us – it is progress.

Some of the following blurbs are mine (DC was very young at the time) and some are from friends of mine, but they were all very important achievements for us at the time.

So…. here are some of The Milestones WE Celebrated many years ago:

Your son whacks his Little League Coach in the head with a bat.  Both you and the Coach are thrilled because this was the first time he attempted to swing at ANYTHING!

You attend your Parent/Teacher conference: Your son’s teacher jubilantly announces that your son and his friend were cheating from each other’s papers. You are as thrilled as she is, because this means he finally realized (on his own) he was supposed to be doing something other than just sitting there – and also figured out, ON HIS OWN, how and where to find out just what it is he was supposed to be doing.

 It was a “bittersweet” morning when I discovered that almost all my “sled” ornaments from the Christmas tree had been crushed on the floor.  We were surprised to discover that my son was the culprit. While we watched,  he carefully removed a sled, (which are many),..gingerly placed it on the floor and then ever so slowly sat on it! I was dismayed that our collection was reduced to only the few left “on higher ground” but thrilled he finally realized what a sled is for!!

My son began saying “shut up” all of a sudden and quite often. I realized that he picked it up from Princess Diaries. I knew he had no idea what it really meant, but still, he continued to say it.
Last night he was in the car with one of his friends. His friend generally starts talking as soon as he gets in the car and the blue streak continues during the entire ride. On this particular ride my son turned to him and said “Shut Up”.
His friend’s mother called me on the phone immediately, very excited because she knew that it meant my son actually figured out what the word meant.

My son loves bread, more than just about any food. A few days ago, a friend of mine baked bread for Christmas gifts. She delivered two loaves to our house, one Cinnamon and the other was a small ‘personal size’ loaf of plain bread. We immediately had to make toast when he saw the Cinnamon bread.  Later, when he was giving me his breakfast order (which he does every night before bed), he requested the “Elf Bread”. Not really understanding what he meant, he went to the counter to show me the little ‘personal size’ loaf of bread – “Elf Bread!”

 

The forging of notes and the stacking of pizza would certainly have a place in the top 10 if we were ever to compile a new, updated list……

Alison’s “Poppy” – #1000speak

family

My friend Alison and I met in elementary school. We became fast friends and remain friends to this day. I loved everything about her, including her family. I spent so much time there, I’m sure they were afraid I would never go home. Especially in the summer. In the summertime there was more time to get there and home (it was a hike) because it stayed light out longer and the rule of “getting home before the streetlights came on” was not as impossible to adhere to. (Seriously…. how does one know when the streetlights are going to go on until they are on?)

Alison had a stepfather, his name was Tom. I also have a stepfather. This was not as common back then in the late 60’s/early 70’s as it is today. Maybe it was, but in my little world, I thought I was the only one until I met Alison.

I was always so in awe of this family and a little bit envious as well. Okay….. very envious! I wanted to live there…..

Tom would pull up on his motorcycle everyday after work and my friend and her brothers would greet him – they were happy to see him. This was just alien to me. He was happy to see them too, every single day! I was just puzzled, but impressed. From the outside looking in, one could just see how much they loved each other. This was amazing to me. I will say it again – I was in awe.

This man married a woman with three children (she is pretty amazing herself). He raised them. He treated them like his own. He loved them like his own and they loved him right back, just as much.  Now, I am sure this happens  but this certainly was not my experience in having a stepfather, and my experiences were all I had. I didn’t know it was or could be different.

Even as a kid I recognized that he was one of those special people who you’d be lucky to have in your life. I just always thought he was truly amazing and I still do.

Alison and her family moved away when I was 16. We’ve kept in touch over the years and I just went to attend her mother’s birthday party a few weeks ago. Tom has since passed. Each year when I see Alison’s post on the anniversary of his death I take the opportunity to remind her just how lucky she was to have had this man in her life. I know that she knows this, I know… but I just have to tell her, every year.

Just a few days ago I noticed her anniversary post:

Seven years ago today one of the most important men in my life went on to be with the Lord. My Poppy. I miss you every day, remember you and Love you more as the days go by. I will keep your memory alive in me until I see you face to face! Until then rest in peace…all my love!”

I never got back to the post to tell her once again, how lucky she was

-and what a wonderful man he was

-and how much of an impact their whole family had on me

– how they taught me that blood does not make a family and that some families really do care about one another.

So I am now…….

********

1000speak nuturing

#1000speak – 1000 Voices for Compassion

April’s #1000speak topic – #1000speak for Nurturing

Take a look at the many posts already posted at the April link

Cinderfella

shoe

I think this may have been the title of an old Jerry Lewis movie, so if I haven’t dated myself with “Gimme a head with hair”, I am certainly dating myself now….. but on with the story.

We just came home from a weekend trip to Cape Cod. As I mentioned in my last post, I was invited to the birthday party for the mother of a very old friend, Alli. I spent quite a lot of time at their house when I was young so it is always an honor to be invited to these birthday events.

The Cape is a good 3 1/2 hour drive (4 1/2 with me in the car) so again, we opted to make a weekend out of it. There was plenty for DC to do at the hotel even if the weather did not cooperate – it did, eventually. We arrived on Friday afternoon and on Friday night, we had dinner with Rhoda who had flown up from Georgia.

Saturday was a busy day. I met Rhoda and Alli for breakfast. DC and Doug went for their breakfast earlier because DC could not wait until 10:00 to eat breakfast, “second breakfast”, maybe but not first breakfast. They went directly to the indoor pool afterwards. It was nice to be able to spend some time with my friends and catch up without interruptions.

After breakfast DC, Doug and I went out for a drive just to see what was around in that area. We came back to the hotel around 1 and I went down to the banquet room to help set up for the party. We finished about 4.

Back in the room, it was almost time for me to start getting ready for the party. DC and Doug were busy making plans to go to the bookstore (yes, DC did spot a Barnes and Noble while we were out earlier) and out to dinner.

Doug is not one for big parties like this and DC, as much as he loves to dance and eat, would not have made it through the whole thing. As I could almost guarantee there would be no wings on the menu he was happy to go to dinner with Doug. So I would be attending the party with Rhoda.

Needless to say, I did not see a lot of DC on Saturday.

At about 11:30, the party-goers were starting to thin out. Under direct orders from the birthday girl, I went back to the room to bring DC down to the party for a visit. There was no doubt that he would be awake. He wouldn’t go to sleep before I came back and I figured that Doug probably needed a break from “Mom is coming back soon?”.

He had a good time. He visited the cupcake mountain and the candy buffet and had a Shirley Temple with Mom. He danced for quite a while, by himself and with two beautiful ladies.

IMG_9130When the party was over and DC and I were walking back to the room, he started reciting a story. This was nothing new, he loves books and stories and knows almost all of his stories by heart. He did spot the “Ballroom” sign on his way into the party, so I knew there would be more than one Cinderella reference on the way back to the room. He started his scripting (or what I thought would be scripting) and I realized that this was different. Speaking very clearly, like a narrator, he said:

Once upon a time –

The best boy in the whole world came to the ball.

and noooooo one knew who he was.

He ate cakes

He ate candy

He ate golden jellybeans

and

danced

and danced

all night.”

After he told this “story” a second time, I said “Oh No! Should we go back to look for your shoe?”

“No”, he laughed and called me silly.

Here’s the thing though…. as many books and stories as I’ve heard him recite over the years, he never veers away from the original stories. They are told as they are – and in his mind, as they should be. As much as he loves his stories, his books and movies and as much as he may relate one to another or to a place or an event, he almost never relates them directly to himself or I should say, he never adds himself into the mix.

He not only altered the original story, but he altered it to include himself….

and………….

he got the shoe joke…..

Still knocking

knock

It has been a busy week and by the time this post publishes, we will be spending a long weekend at the Cape. Normally at this time of year we can expect semi-warm weather, but judging by the week we just had, it is not looking good. Fingers crossed for no rain at least.

This trip was scheduled so that I could attend the birthday party of the mother of one of my oldest friends (grammar school, believe it or not). Another old friend will be coming up from Georgia to attend as well.  I am looking forward to seeing them.

Since we were going to be traveling to Cape Cod for the party, we decided to make a long weekend of it. We are hoping to get to Martha’s Vineyard or Nantucket on one of the days we’re there.

Three years ago we traveled to the Cape for the same reason, but we did not stay long enough to do anything else, so we decided to go back a few months later to visit Nantucket and to pay a quick visit with my friend and her family.

Below is a re-post from that adventure. I am keeping my fingers crossed for some decent weather this weekend and I am still knocking on wood…

From May 2014 …

Knock, Knock, Knock on Wood

Just recently I was reading a blog that I follow – Raising 5 Kids with Disabilities and Remaining Sane Blog. The title; What’s in my Purse. The post was about the many trips the family has made to the emergency room over the years and what the author learned to carry with her at all times. If you have a minute, check it out.

It made me realize how lucky I am to have made only ONE trip to the ER with DC – that is correct, ONLY ONE! (Knocking wood, Knocking Wood, Knocking Wood). The one trip came at age 21 and for the most ridiculous reason.  As you may or may not know, DC is 23 with Autism. Safety is not something he has any awareness of. He IS a little better now that he is older, but he is better because he has been taught not to do this or not to do that, not because he really understands what can happen to him. He doesn’t really understand many things unless/until they actually happen. So not wanting him to get hit by a car in order for him to understand what could happen if he were to be hit by a car….. I have to hope that making rules, and pointing out everything around him, will have some impact on him.

I mean, I have really been lucky (still knocking wood), so much so that we’ve never had to use a Band-Aid. He loves Band-Aids and wants to wear them so much that he just wears them for no reason, or invents a reason the wear them. The one and only time he cut himself when he fell off his bike – yes, he somehow managed to tip over an adult three-wheeled bike – he was so excited to have a big raspberry on his chest, he wasn’t concerned about the fall, he just wanted a Band-Aid. He was so crushed that the raspberry was much too big for a Band-Aid, that I had to make up a reason to apply one to his leg, just to make him happy.
Band-Aids, especially “character-themed Band-Aids” are on his “odd gifts list” along with the rolls of scotch tape, mentioned in an earlier blog.

No Injury - Just wanted to wear a Band-Aid

Rounding out the Collection, we have Mickey Mouse (again, no injury)

A few years ago, we took a weekend trip to Hyannis, MA in Cape Cod. He arrived Friday evening. The plan; have dinner and hang out at the hotel on Friday night. Saturday we would take the ferry, and spend the day in Nantucket. Sunday, we planned to stop in and visit one of my oldest friends  before we headed home.

We arrived on Friday evening. DC was happy to be in the hotel. As far as he was concerned, we could just stay there. He loves hotels. Saturday, as planned, we took the ferry to Nantucket. He loved the ferry. We searched out a few book stores as we must (see “Off to the Book Store We Go”), looked around, had lunch and took the last ferry back to the hotel. It was a nice day.  We had a good time.

Sunday morning was going to be spent just hanging out in the hotel room until it was time to check out. DC was watching a movie on his kindle, Doug was on the deck and I was packing up the bathroom items. I was only in the bathroom for a few minutes. When I came out, DC was sitting at the desk; right where I left him. He yelled “Mom! Tears.” DC, as a rule almost never has tears, his eyes never water – even when he cries, he rarely has tears. When he is really upset and really crying and wants to make certain I know how upset he is, he will use water or spit to create tears, just for effect.  Even as a baby, he did not have tears when he cried. But here I could see he had tears running down his face…… real tears.

“Tears!”

I thought possibly his allergies were hitting him harder than usual – Doug had the deck door open and the deck was right on the golf course. “DC, what’s wrong, do you have something in your eye?”

“Mom! Tears! Ear!” On one hand he was excited about the real tears on his face but his excitement was mixed with a bit of panic.

I had no idea what he was trying to tell me. Then he showed me the ear bud from his Kindle. There were rubber covers on the ear buds and one was missing. Panicking, I yelled out to Doug something that probably made no sense,  and ran DC into the bathroom. I couldn’t see anything in his ear. DC started to panic now that he realized that I couldn’t get it out right away.

This entire exchange above…. Tears, Ear and showing me the ear bud would normally be cause for celebration – DC being able to tell me that something is wrong and what is wrong is a very BIG  deal, but all celebrating had to wait because he was getting more panicky by the second.

I still could not see anything in his ear.  I dumped everything that I had just packed out and could not find the tweezers. I sent Doug down to the front desk to ask for a flashlight and tweezers, while I tried to keep DC’s fingers out of his ears and tried to keep him from flipping out any more than he already was. Doug came back; the desk had no tweezers (?) and no flashlight (?).

We took DC down to the desk. He would be okay for a minute or two and then he would freak out. The man behind the counter did not seem to understand what we were talking about. I am sure he thought we were all crazy. I was somewhere between panic and laughing hysterically at the ridiculousness of the whole situation while DC was making very loud noises, yelling out random words, flapping, stimming and doing everything else that comes with his anxiety.  I’m not sure what the man at the desk thought was going on and why we needed a flashlight and tweezers, but watching DC in the middle of the lobby absolutely loosing it  frightened him a bit, I think and asked his assistant to go check again. She came back with no flashlight and no tweezers. Seriously, what hotel doesn’t have a flashlight?

I was so trying to avoid the Emergency Room. It hadn’t been all that long since DC finally became comfortable with doctors. I didn’t want a long and scary emergency room visit to erase the years of progress he had made. The other issue was it was his EAR! For years, when we went to the doctor, he would get unbelievably upset and totally meltdown if anyone went near his ears. I remember one of the doctor’s assistants, who was either new to the office or had not had to deal with DC getting his ears checked saying, “Oh! I was wondering why we had to bring extra trash cans into the examining room! I get it now!” – Yes, every single time, he would get so worked up, screaming and fighting that he would vomit. This went on for years. The very last thing I wanted to do was to bring him to an emergency room to have someone poke around in his ear.

The desk clerk gave us directions to the nearest pharmacy and we took directions to the ER too, just in case.

I rode in the back seat with DC to keep him from pushing the ear bud in farther. Doug ran in to the pharmacy to buy the tweezers and flashlight. Now we are all in the backseat of the car, armed with a flashlight and tweezers, trying to see inside his ear. I can’t imagine what the other people in the parking lot must have been thinking. DC had enough at this point and was not cooperating at all anymore…and….. I still could not see anything.

I knew we had to suck it up and head for the Emergency Room. I still wasn’t positive that there was anything in his ear at all. Did he just think that it went into his ear and it was really just on the floor somewhere at the hotel? I didn’t know, but he was so upset that I had to assume it was in there somewhere.

We arrived at the emergency room. It was a weekend in a tourist area;  I was expecting hundreds of people waiting. I didn’t know how I was going to keep him calm and keep his hands away from his ear while we waited. We walked through the door and there was only ONE person in the entire waiting room! I wasn’t sure if that was a good or bad sign but I was going with good. I took him to the desk and explained the situation to the clerk. One look at him flailing around and she asked if he needed to be sedated. I told her (with fingers crossed) that he would not.

They took us right in! (I love this place). They put DC in a bed, the doctor came and checked his ear. DC LET him check his ear! He really must have wanted this thing OUT! He told me he could see it but it was in there deep and he would need to use another tool to get at it. All I could think was “No way he is going to let you do that!” but I SAID “Okay, he’ll be fine with it”.

I explained the situation to DC and told him what was going to happen, not really knowing if he would understand what I was telling him, but he said “Yes! Ear!”, so I think he did understand.

The doctor went in with some sort of funnel-looking thing. I was truly amazed that DC was cooperating and keeping still. He was finally able to get the thing out. Of course DC had to examine it completely before they got rid of it, I suppose just to be sure that it was out.

DC calmed down immediately and we made a big deal about how brave he’d been! All of my worrying about the doctor, his ears, traumatizing him with an ER visit was for nothing. He was totally unscathed by the whole thing and was very proud to tell people that he had been in the ‘hos – i – bull”.

We were done and over it in time to get back to the room and finish packing. Now he wanted to put those things right back into his ears!

“NO, NO, NO!” a thousand times, no……. They went directly into the garbage.

We were also able to visit my friend as planned.

I went on a hunt for new ear buds without any rubber or removable parts as soon as we got home.

Coincidentally, as I was writing this story, DC received a belated birthday gift from one of my friends. This gift included two boxes of character Band-Aids that DC is already wearing proudly.
(and yes…….. I am still knocking wood……………)

Gimme a head with hair

Long beautiful hair.. Shining, gleaming, Streaming, flaxen, waxen
Give me down to there  – hair – Shoulder length or longer- Here baby, there mama
Everywhere……. daddy daddy  – HAIR….

We tried. We really did. But we had to admit defeat and throw in the towel……

DC has always had very thick and very curly hair. For most of his life he’s kept it short, very short –  a buzz cut. This style came about only because his Dad would take him for the day and he would come home with a shaved head – I was ever consulted, his Dad just shaved his head. After awhile we just got used to doing it this way I guess and hey, one less appointment for me to make and one less thing for me to do.

The ‘Dad-cuts’ began when DC was little. Getting a haircut was next to impossible – disastrous, so his Dad just started cutting his hair and just continued on through the years from there. DC has been to the barber plenty of times in-between the ‘Dad-cuts’ and he is well over the haircut meltdowns of the past. He actually likes going to the barber when I take him, but still he comes home with a shaved head from his Dad’s house.

I may have mentioned before that DC’s Dad left for Florida in mid-November for the winter. This means that DC has not seen him and has not gone to his house one day or evening a week and of course he has not had his head shaved.

IMG_8929

Somewhere in early December I mentioned to DC that it was time for a haircut.  His reaction surprised me.. “No! No, Mom! No haircut! PLEEEEASE!” (complete with begging hands). I’m sure he assumed he’d be getting a ‘Dad-cut’. It never occurred to me that no one had ever asked him if he wanted his head shaved. He is an adult after all and should be allowed to have a say in things like this.

So, okay, we gave it a try.

As I said, DC’s hair is very thick and curly. Once it started growing, I could see we were going to have a problem. It just grew all over the place. I would get it to a point in the morning where it wasn’t sticking out everywhere but he would not leave it alone so that did not last very long – it always looked like a mess.

I had a talk with him and said we really needed to go have it trimmed a bit. I was hoping that they could shape it (especially on the sides) without cutting it too much so it would grow in without looking so unruly. I promised they would not shave his head (or give him a ‘Dad-cut’, which is the way he seemed to understand it). He agreed.

They did a nice job. They shaped it, took a little off the sides so it didn’t stick out. DC was happy because it was still long and curly. Unfortunately, that lasted all of two weeks. It grew so fast and even with all of the shaping they did, it grew back just the same way. I didn’t want to have to take him for a cut every two weeks so we talked about it again. I told him he could keep it long if he really wanted to, but it might be a good idea to get it cut short again. It is going to be summer soon and it would be very hot  having all of that hair. He agreed.

I asked him more than once just to be sure he understood what he was agreeing to – and I do think he was getting a little bit tired of me trying desperately to make it look decent every day. He understood.

Yesterday he went back to get a haircut. It was a longer version of the ‘Dad-cut’ but it is still very short. He was happy with the cut and also happy I think, that this time it was his decision.

IMG_8933

…And just because those of you that may be close to my age now have that song stuck in your head and those of you who are not…. may just want to take a trip into to the 60’s…… Ladies and Gentlemen… the Cowsills:

(the video quality is terrible, but it is the best I could find)

“Arrival Anxiety”

heeeeere

“Arrival Anxiety” – that is what I have always called it. It is, in my mind the best way to describe it.

It does not matter where we are going or how often we have or haven’t been there – it happens. I see the change in his demeanor immediately. It happens so quickly – like walking though a door; on one side he is happy and the other side he is full of anxiety.

I always dreaded the birthday party invitation when he was little. The first half hour, sometimes more, was spent trying to calm him down. No matter how much I tried to prepare him beforehand he would scream, cry, flap and resort to very loud noises. Everyone stared and the other children would huddle with their parents because they were either afraid, nervous or both. He would, most of the time eventually calm down, but how I always dreaded our entrance.

After awhile, I realized that the mention of a party meant “cake” to DC. He was expecting cake – as soon as he arrived. He didn’t understand why he had to bowl or play games, he was only there for the food. Once I realized this, I just stopped calling these events we had to attend, parties. We were going bowling or to the play scape or to someone’s house or a picnic. Believe it or not, this helped a great deal with his “birthday arrival anxiety”, it still happened of course but it was not as severe. Afterwards when we talked about the party and whether he had fun, I would then refer to it as a party in the hopes that he would at some point realize that yes, it was a party, there was no cake at the door, but he had a good time anyway.

I remember being invited to my friend’s house for her daughter’s graduation party. Again, this was not going to be described as a party, I called it a picnic. We were there for a good while before DC saw one of the table cloths (a party table cloth). I saw his eyes widen and he signed “party” with a question on his face as if he were asking “Is THIS a PARTY??” – fortunately by that time, it was time for cake. Eventually he did begin to understand that a party meant more than just cake and our arrivals were not so traumatic.

This “arrival anxiety” continues today, of course not as bad as when he was younger but he still has an immediate change in personality, temperament and expression upon arrival to almost anywhere. You might think he is anxious about places he doesn’t want to go, or places he’s never been and yes, those are some factors, but his highest level of anxiety happens when we are going to places he loves to or has been looking forward to going.

Part of this is just anxiety, plain and simple but as with the earlier birthday issues a lot of it is about the fact that DC always has an agenda in his head. Whether or not I hear about the agenda over and over again, I know it’s there.

At the times when we are going to places he really loves, like Disney or New York City, I do hear about his agenda for quite awhile before we arrive. He’s excited all the way there and the anxiety kicks in the moment we arrive. His face changes and he begins spewing random words or phrases – “Another one, Another one” or “Froggy, Froggy, Froggy” or whatever the random word of the day might be. He gets himself so wrapped up in his head about what he wants to do and is in such a hurry to do all of it that he just can’t control himself.

Last week we went to New York City for his birthday. We park in the same parking garage every time we’re there because it is pretty much centrally located and walking distance to all of the places he wants to go. Each time, as soon as he gets out of the car he begins yelling out his random words, clenching his fists and making his loud noises. An observer would really think that he hated being there. He does this all along the route to Times Square or whatever our first stop might be. I was impressed that on our trip that weekend the “arrival anxiety” was quite minimal and he was over it by the time we left the garage. One step forward…

Yesterday afternoon I told DC that we would be going out to eat for dinner. I never mentioned where and he never asked. When we arrived at a place in town that after 21 years living here we’ve never been before (I was always under the impression that it was a bar until we received a gift certificate for dinner), DC was upset and the whole routine began and continued for an extended period of time – even after he discovered they had all of his favorites on the menu. Doug could not understand why he was reacting this way, we’ve been to new places before – often. Again, I think that when he heard we were going out, he had a few ideas in his head about where we would be going. He often has ideas about where we will be eating, usually more than one. If by chance we do not go to one of the places he had in his head, but it turns out to be a place he knows, there is no problem. Or…. if I tell him the name of a new place, there is no problem. This was not one of those times. It was not a place in his “mind file”  and it was not an alternate restaurant that he knows he likes but just didn’t think of. It was new.

He did order all of his favorites (all of them) and eventually had a ‘wonderful time’ (DC-speak). I am sure he would be happy to go back again sometime.

Because I neglected to tell him that this was a place he’d never been before (my fault) , I will rate last night as only 1/2 a step back.

***** A version of this post was also posted on the Mighty – The ‘Arrival Anxiety’ That Comes With Having Autism

In Honor of April Fools’ Day….

Today is April Fools’ Day and as I do every year, I try to explain to DC that others might be playing pranks on him at work or elsewhere. He does not understand pranks or jokes really, and I always worry that he will be upset if anyone tries to play a joke on him. I usually do this by yelling “Oh My, What is that on your head?” – when he checks his head, I say “I am only kidding, it was a joke” and he laughs. I do also say “April Fools”. The reason being that I will tell him it is a joke, others will just say April Fools which means nothing to him. I did this a few times this morning and he fell for it every time. He did also laugh every time when I told him it was a joke. I explained to him that if anyone today said “April Fools!” that he should just laugh because whatever they said or did was a joke.  I think he “got it” by the time he left for work, but I know I will be explaining it again next year.

He came home unscathed and happy.

In honor of April Fools’ Day, I decided to re-post a blog from this past summer. It really doesn’t have much to do with DC except for the fact that he had no idea what was going on. We laughed a lot about it when it was over.

If someone could have planned this they would have the distinct honor of pulling off the ultimate April Fools prank. Unfortunately for me and my bruised ego, the debacle detailed below was not a joke, it was real, and true – every last word of it.

“The Alarm went off and Mom has lost her mind”

What day is it

Have you ever come across a meme online that has you convinced that the creator must be following you, or spying on you – because obviously this meme was created just for you?

Today my friend, Audrey shared this meme on Facebook, I don’t know where it originated but I laughed out loud because this just happened to me.

Wait....Wait.... What Day is it?

First,  a few back story notes that I have to make before telling the story:

As a rule, I don’t get very much sleep on Sunday nights. No matter what I do, the utter excitement of having to go to work the next day keeps me awake… This also happens to a few co-workers – so it’s become somewhat of a “thing” on Monday morning to discuss who had the least amount of sleep the night before. Usually *Cracker wins the contest, but I believe this week, I was the winner. Unfortunately, there is no prize for winning.

By the time I got home from work Monday evening, I felt like I could fall asleep standing up. I do have to add that historically I am not a “good sleeper”, but once I am out, I AM OUT!

Another thing I have to mention is that DC has refused to sleep in his room at night since Christmas Eve. Once he gets nervous about a storm or a cloud because that could mean a storm or if the power should go out for a minute, or a truck going by because it sounds like thunder….. (you get the picture)….that’s it. He’s on the couch! I just can’t wait for the 4th of July fireworks that usually start going off about now. This also means I must sleep on the couch. We have a sectional so he sleeps on the chaise lounge end and I sleep on the other side.

no power

So back to Monday.

By 6:00 pm I knew if I didn’t take a quick nap I would never make it until DC went to bed. I told DC I was, to use his words, “going to get some rest”. He was sitting on the couch watching YouTube videos on his phone. I laid down in my spot. I even set the alarm because I didn’t want to sleep too long. In the meantime, DC went upstairs to put his pajamas on and gather his pillow, sheet and blankets. When he puts his pajamas on that early it is his way of telling me  that he doesn’t want to go anywhere else that day. He’s done.  I was done too, so he did not have to worry about that. I must have been really over the top tired and really ‘out like a light’, as they say, because I really don’t even remember if it was the alarm that woke me up or not….

but…..

I woke up, looked at the clock – it was 8:00! Panicked, I jumped up, and yelled “Oh my God!”. Of course DC has no idea why I’m yelling “Oh My God!”, so he’s just looking at me, confused.

Now this was not your typical “wake up on a Saturday thinking you are late for work and you figure it out within a few seconds” kind of panic. This was a full on “I can’t figure out what is going on” kind of panic.

I ran to the door thinking that DC’s transportation to work would for some reason still be sitting in the driveway a half hour after they usually arrive. The car wasn’t there. I still couldn’t figure out what was going on. If they arrived to pick him up and no one came out, they would first beep the horn and then have dispatch call on the phone. How did I not hear the phone? How did I not hear the horn beep? Why didn’t DC wake me up? He hates the sound of my alarm, he hates the sound of the phone. Why wasn’t there a message or a missed call showing on the house phone or my cell?
I turned from the door and yelled to DC – who was right where he would have been in the morning, “What day is it?” – DC answered “Monday”. I yelled back “No! It’s Tuesday!” (good going, let’s just totally confuse him).

If there was ever a look that said “This woman has lost her mind”, DC had it! He would never have the words to say that or really understand what loosing one’s mind means,  but he had that look.
I went back to the door to stare at the empty driveway. I looked at the clock again, thinking I had just misread it being half asleep and panicked, but no, it still said 8:00. DC is still looking at me as if to say “What is wrong with this woman?”

At this point I am even starting to second guess what time his transportation comes in the morning, as if I would forget that or get it wrong, but I was half asleep, so who knows. I mean at the time I didn’t think I’d taken a nap and slept through the night, I may have been able to figure it all out sooner if I thought that but I didn’t even remember taking a nap! I just thought it was a regular morning and I had over slept!

Now I am trying to figure out what to do. Should I drive DC to work? If I did that I would be hours late for work myself. Should I just call him in sick and take him to work with me? Fortunately before I made the call and left a message at his job, I happened to look over at the TV….

Channel “Two-Five” – in DC-speak, TNT to the rest of us, was on. I’ve probably mentioned more than once that TNT is our default channel. DC always likes it on, even if he’s not watching. He likes to watch Smallville also known in our house as “Somebody Save Me” in the morning (not his first choice of shows, but they took Angel out of their line-up – Boo!). I noticed that a show was on that usually only plays at night – I think it was Major Crimes. It took a second but I finally remembered that I had taken a nap and it was 8:00 at night and it was still Monday, just as DC told me while I insisted it was Tuesday.

Now I had to make a joke out of the whole thing because he was still looking at me like I had really lost my mind. “Ha Ha, DC! Mom was confused! You were right, it is Monday! Mom made a mistake, I must have been very tired!”

He laughed. I don’t know if he really understood how funny it was, all that he knew was that Mom made a mistake, and he always thinks that is funny!

Looking back though –
Did I notice that I still had my work clothes on? – No
Did I notice it was 8:00 pm when I checked my phone for missed calls? – No
Did it occur to me that DC would never be sitting quietly at 8:00 in the morning? – No

So the conclusion I have come to is –

NAPS……

BAD, Very BAD!