Hat Day

Posted by TakingItAStepAtATime

Today is DC’s first full day at camp. He has attended this camp since he was 5 years old. He loves it. Before he left the school system at age 21, he was able to attend 9 to 3 every day for 7 weeks each summer. Now that he has a “job”, he normally uses some of his allotted vacation time to attend for two weeks of the season.  He does and has always been able to attend the twice weekly after camp program.

He attended when he was at the camp full time and still attends now after work. Because we took an extra vacation this year, he was not able to take an extra two weeks off to attend camp as he usually does, so I opted for him to go one day a week on Friday in addition to the two “after camp” sessions that do not interfere with his work schedule or his time off. This works out well because I am off from work on Fridays for the summer and I don’t have to figure out and schedule how he will get there each day.

The camp has what they call “Special Days” (more about that in an upcoming ‘Everything is Related’ post) listed on the calendar. Because of DC’s schedule he has missed one of his favorites, Hat Day (or “silly hat day” as DC likes to call it) for the past 3 years. He still has every single construction paper award that he has ever won for his hats on Hat Day and he is very proud of them.
Today happened to be Hat Day. As soon as DC discovered that he would be at camp on Hat Day, it was all that I heard about. We went through his collection of silly hats and he chose the cheeseburger hat.

We arrived at camp and he got himself situated. Although the director and assistant director are aware of his seizure, I wanted to stress again the fact that I really believed it had to do with the heat and the all-around stress of the day we had that day. I also wanted to talk to his group leader personally.
We were a bit early so the staff was still in their morning meeting. DC decided that he had to use the restroom. He came right out and informed me that there was no toilet paper.
(for someone who was so uncomfortable writing a post about toilet paper that I had to use a code word – ‘paper towels’, I do get that it is odd that that I writing a post about it again)
I got him a big handful from the ladies room and he went back in, no problem…. or so I thought.

When he came out, he would not let go of the fact that there was not toilet paper in the men’s room, even though he didn’t need it any longer, it wasn’t there. I told him that I  would let the director know as soon as they were finished with their meeting – but he would just not calm down about it.
When the meeting was over he came with me – still ranting – to talk to the director. First I explained to her that what was going on right then was because there is no toilet paper in the rest room. She immediately called to one of her staff to replenish the supply. This did not do a thing to calm him down. It was too late. This coupled with his normal ‘arrival anxiety’ was too much and even when I showed him the new rolls, it didn’t matter, he was too far into this now. It went on for awhile.
When he finally did calm down about that, he move right into his normal routine of obsessing about me.

“I’m sorry, calm down now. I’m sorry. Not ‘crappy’ anymore “- (DC – speak “crabby”).
As many times that I have told him over the years that he has nothing to be sorry about (and as many times as I told him this morning),  this is what happens. If we are home together, this could and has gone on for hours. If I am dropping him off somewhere, I try to just get him calm enough so that I can leave, because if I am there he will continue to perseverate on me.

I was worried and having seizure flashbacks because it was hot and now he was upset, so I was afraid to leave when I normally would have. He finally did calm down to the point where I felt comfortable leaving – not to say I feel comfortable leaving him anywhere since the seizure, but as comfortable as I can be now-a-days.

As I was leaving he moved on to obsessing about whether I was going to come back and when I was going to pick him up. This is his regular obsession – I do not know why – I have never been so much as a minute late in picking him up anywhere, ever, but it has always been a thing with him.
Now that he had moved on to “Mom is coming back”,  his regular routine, I was sure it was safe to leave.

I hope his anxiety this morning does not ruin “Hat Day” for him. Fingers crossed that he comes home with that construction paper award today, because that will most certainly fix everything.
***********************
and later ……

Arrival Anxiety

(originally post at Taking a Step at a Time)

"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 playscape 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.