Last weekend was one of those weekends where DC was just all over me, all of the time. I could not make a move without hearing “Mom! Come here please.” or “Vickie, where are you going?”.
Every step I took, he was calling me, most of the time for no reason at all.
I was upstairs plunging the bathroom sink. I really do not know what the deal is with that sink, but I seem to spend a lot of time plunging it. DC had already checked in to see what I was doing more than once and had gone back to his computer. I had already been up and down the stairs a good 6 times because he always waits until I get to where I am going before he asks me to “Come here, please” so I decided that I would call him for a change.
We had just been grocery shopping and I left the bag that held the drain-o on the kitchen table.
For someone who was so concerned about where I was all day long, it took me six (very loud) tries to get him to answer me.
“DC, please bring me the white bag that’s on the kitchen table.”
He came to the bottom of the stairs with a shipping envelope.
I would understand the confusion if I had asked him for an envelope from the table. The table holds, I can’t even tell you how many envelopes and other papers that I think maybe I need to keep, or that I have to find a spot for, or mail that I don’t really have to keep but has to be shredded or junk mail that has to be shredded before throwing away (Chase, Capital One and AARP – I’m talking to you!). Getting rid of all of it would mean that I would have to empty the shredder – so there it all sits.
(You will be happy to know that I did get rid of about 50% of the envelopes and paper this week while watching an episode of Star Trek Discovery on the computer in the kitchen. All of the shred-able items went into the sink to be mashed up into clumps and thrown away while the shredder sits there, still full… Oh, the lengths I will go not to have to empty the shredder.)
He knows what a bag is, but for some reason the request threw him off. I asked again for the white bag that was on the table. After the second request he brought me the bag, but now I had to worry about what he did with the shipping envelope because it contained part of his Halloween costume.
When I got back downstairs I asked him where he put the envelope. He pointed upstairs – which is where he brought the bag when I asked for it. I tried to explain:
“DC, before you brought me the bag, you had an envelope in your hand. Where did you put it when you came back to get the bag?”
He just began pointing to random places. Places in the living room, in the kitchen, outside, and upstairs.
I even tried to re-enact the whole thing by getting an envelope, bringing it to the bottom of the stairs and saying “No DC, I need the bag on the table” going back to the kitchen and asking “Where did you put the envelope that you had?”
He just could not understand what I wanted.
I did not want to give up because at this point I wanted him to understand the question.
As we were going through the reenactment, I noticed that the envelope was in a box, which was probably right where he found it originally, but I did not let on that I saw it. So I went through the whole thing again, this time pointing to the table where it clearly wasn’t, asking “Did you put the envelope here?”
Pointing to the empty chair – “Did you put it here?”
Pointing to the box, where I had spotted it – “Did you put it here?”
“There it is! Thank you for telling me where you put it.”
He was glad that we found it and was no longer anxious about what I was asking for and I hoped that after all of the looking, reenacting, and explaining he finally understood what I had been asking him.
But this, right here is my point. This is why I write these stories. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works.
He has speech – yes. He can communicate – yes. But communication is difficult, he cannot always tell me anything other than his standard scripted answers. He cannot always follow directions. He might understand something one day but the next day he just cannot get it.
A simple question about where he put something took a good half hour to get him to understand. I am not positive that in the end he actually DID understand but we had to play it out all the way so he was not anxious about it anymore. He had to be the one to say “yes, it was there” or he would not feel better about it.
This is DC.
This is how he communicates or at times does not communicate. This is how he follows directions and at times cannot follow directions. This is how he processes questions and sometimes cannot process questions. This is how he processes information and sometimes just cannot process information.
Because he gives standard answers, people do not always realize right away that he is not giving the correct answer to their question. People who know that he may just be giving a standard scripted answer may not realize it when he DOES understand the question and gives the correct reply. Other people he meets along the way in life are not going to take the time to reenact the whole scenario to get to the answer to that question. It is a constant struggle for him and for me, but we do not give up.
I know at 26 years of age there is not a lot of progress that will be made. I know that we will never get to a point where I don’t fear the future when he no longer has me to help him, but we do not stop trying. There is always a little bit of progress made – there is always something…..