What did you do today?

Posted by TakingItAStepAtATime

Recently I was searching the house for something. We have no storage space so “storage” is pretty much anywhere I can stuff something and finding “said something” later often proves to be an all day event. I never did find what I was looking for but I did come across DC’s Journal from way back in elementary school.

The journal was created after many years of me begging for the teacher to write something in his book other than “Fine day overall” (one of my favorites). I wanted to be able to have a conversation, as much of a conversation as possible, with DC about his day. I wanted him to understand the question. If I wasn’t told about specific things that he had done on that particular day, and took his standard responses as fact, or guessed at what he had done and was wrong, he would never be able to understand the question. Other than lunch, the rest of his day is described with standard answers. Some of these answers may have been the truth at some point, but I am sure they are not the list of things he does everyday. Once he comes up with an answer, that is the answer I will get every day.

Even now that he is out of school and working – I get the same response every day: “DC, what did you do today?” “Good” (Some of the time he doesn’t understand the “what” of the question and other times I am sure he is just jumping the gun and giving me an answer to get this over with) “No, DC, what did you do at work today?” The daily reply: “In the Greenhouse, scooping the dirt, clean the cart” Fortunately the staff will sometimes write specific things that he did that day, so I can respond with, “Didn’t you mow the lawn today?” “Yes”

After years of not getting information about his day, we began writing a journal every night. I would type the things that I KNEW first-hand that he had done that day. I left some blanks for him to fill in names, locations or items. I included photos, so that it made more sense to him. I did add a few little jokes that helped me keep the boredom of typing this every night, at bay.

We did this every single night for a good three years. The book went to school with him everyday. I knew people were reading it, but still it took them 3 years to finally begin a journal for him at school. I came across this book a few years back during another search for something I had put away and could not find again. I didn’t have a lot of time to look through it at the time, so I put it away and haven’t thought of it since. I was glad to come across it the other day again. I’m so glad I didn’t get rid of it – so many memories. One day I will sit down with DC and read the whole thing from beginning to end.

Below are a few randomly selected pages (most from the front of the book, early on). They are certainly make-shift and not close to what I could have done today with all of the different software available (or should I say, the different software I have learned to use), but still, it is nice to have the pages and the book.

  (some names or locations have been edited for this post)


And a Few More………

I know that his communication is and always will be a work in progress, but I do think he’s made a bit of progress from way back in the day when we were making this journal every night.

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. 

DC Speaks – Doug’s 153rd Birthday and why Mrs. H is just so jealous.

DC has his own Facebook and Instagram accounts. Instagram is private and I only accept people I absolutely know to follow him. 90% of the photos on this account are photos taken of him by me or someone other than himself. The photos and videos he has taken himself are pages from whatever book he may be reading, food, princesses from either books or the computer screen and videos of YouTube videos of Cinderella dancing (spinning mostly) or other characters spinning. There’s a lot of spinning.

I set up the account for him because he enjoys looking at photos so much. Apparently he enjoys looking at them much more than he enjoys taking them.

His facebook is set for friends only. I thought it would be a good way for his cousins and him to connect. I also thought it would be a good way for some of his father’s family that might feel uncomfortable being “friends” with me, to keep up with what he is doing. A good number of his Dad’s family are friends with me, but he has other cousins (2nd? Once Removed? – I am never clear on that) that are friends with him there.

He is not allowed to write anything unless he asks permission first and then I stand there while he writes whatever it is he wants to write. I hold my breath when I notice a spelling error hoping he does not notice. I know I should correct him and I do if he hasn’t finished the sentence or paragraph and I do always correct him if he is writing anything else. But on a status post, if he notices a typo he will backspace and delete one letter at a time until he reaches the word he wants to correct and then type the whole thing over again. This could take centuries. He is not allowed to accept friend requests until I can figure out who the requester is. He does not post his own photos. I’m sure he could, but his friends will be inundated with photos of Judy Garland, Amy Adams, princesses and Disney characters.

He does go on Facebook on his phone to look at pictures of his friends. He is allowed to do that. So far and it had been 4 years, he has followed all of these rules. I check his phone and his account daily. Lately he is starting to lose interest in typing a status. He does not like to type to begin with, I thought this would help him get used to typing. He still, every once in a while will ask to write something or I will sometimes take a photo and ask him to write what we are doing, but not as often as before. He still does go on everyday to look at pictures though and as I said, he will still post a status or two.

I was thinking about DC’s past status updates and decided to go through and pull out some of my favorites.

(Translations and/or explanations are in parentheses – a few names have been edited – other than that, nothing has been changed or corrected)

So, in no particular order, DC speaks…….

-We Going to Anthony.s for Thanksgiving Dinner i want Tuckey Legs

- i Hate Snow

- i hate Snow . i like going to Work with Mom

- i Hate Snow

(I think he might not like snow very much)

- The Lights is On

- we Had Fun at Halloween Party. i am Happy. Be Brave For No Storm

(worrying about losing power)

- i am so Happy is Halloween

- we going to sleepy Hollow with ‘BB’ and and mom and doug i am so exciting

- i Like the Movies Trouble with The Curves

- i going to Dad.s wedding I am looking handsome

- going to grandmother. s and have some muffins

(“grandmother’s” – from Disney and other books)

- Happt collation

(Graduation)

- luau day like lilo

(Luau day at camp – the only thing he can relate it to is Lilo and Stitch, because Everything is related)

- last day of camp was yestrday. i had a fun. i am going to grandmother.s today. a very merry unBirthday
- I went to hospital todat 

(See post about first time in Emergency Room)

 - i am tired. i went to grandmas i went to winter guard show i did a good job i went to dinner with mom and doug and mom; s freind suzanne and her frien. i dance to wing it i am going to sleep now where has the time gone

- i ate alligator in new Orleans

- We having fun in Florida mrs h will be so jealos

(“Mrs. H. will be so Jealous” – there are quite a few of these. I did not include them all only because I could not find them all. Mrs. H. being jealous began 3 years ago when DC was in his last season of Challengers baseball and DC’s team was invited to Fenway Park for Challengers Day – All Kids Can. Mrs. H. had mentioned that her husband, Mr. H. was so jealous because he would have loved to go to Fenway. I don’t think DC really understood what “jealous” meant at the time, but he did know that he was doing something that Mr. H. wanted to do (I’ve since explained it to him many times in many different ways). Somewhere along the way Mr. H. being jealous evolved into Mrs. H. and it just went from there. I know as does she that he thinks jealousy is a good thing.

- I had turkey leg and turkey wing and bread. with mom and uncle smap and aunt lisa.
I like pie.
we going to lunch with uncle ted later after that.

- I want a turkey leg today

- phew.
I work at theater.
we went to the ball.
we ate dinner with uncle scamp and aunt lisa.
we went to camp Halloween party….

- We going to mountain of oz on Saturday.
We taking the airplane tomorrow have to get some rest.
I will see my family.
We going to dilly wood tomorrow if it does not rain have some fun

- I had fun time. Not New York City. Next week we going to New York City. Lots of food and book store

- Thank you thank you mrs .H happy happy Easter
I love jelly beans too

- I am happy to have my birthday
Today is my birthday,

- Mrs  H  will Be Jelous

(I don’t recall what she was so jealous about this time. That was all there was to the post)

- I love jellybeans too

- Have a Thanksgiving day. I don.t have work. i will have dinner With My Family. me and mom doug uncle scamp Aunt Lisa Erica I want turkey Leg

-  Mom fell down blood over her I did not take picture she is ok (we were out walking our CharityMiles)

- I did good work at the theater to day I liked the dream girls show. I m not tired

- Happy Birthday to all
and to all a Good Wishes
Happy birthday DC
Tha;ts me

(It was his birthday. I think he was actually thanking people for the Birthday posts on his page)

- I am a ogre

- I am brave

(also storm related)

and my favorite…

- Happy 153 birthday doug

This ‘boy’ puts a smile on my face every single day…..

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.

(Excuse the quality. 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.

Gifts from Mom – Christmas Eve

More gifts from Mom and Santa's Stocking

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

Christmas Eve. All of Mom’s gifts

So…..Christmas morning would be just Santa.



(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!