Going to the “Lie-ber-ary”

DC has support staff that comes to our house for a couple of hours each day. He has had this staff since somewhere around the age of 18. One or the other is there when he arrives home from his job and they stay until 5PM – a little bit after I get home from work. His staff is there of course because I am still at work when he gets home from his program but their specific purpose is support in life-skills and community activities.

Tuesday and Friday have been designated as “Lie-ber-ary” (DC-speak = Library) days with his staff. On Tuesdays he goes to the library in town with one aide and on Friday he goes to a library in the next town over with Mrs. H. These trips to the out of town library began a few years ago when our library was closed for renovations. They started going there “temporarily” but it has now become part of his permanent schedule.

Last Sunday he came to me with his library books and asked to go to the “Cole-cot Lie-ber-ary” on Monday with Mrs. H. (He must take out his library books the day before his scheduled library visit and put them on the kitchen table –  always. Even though the spot where he keeps the books are on the desk 3 steps away – they must be placed on the table the day before.) I was a little bit confused by this. He knows that Monday isn’t his library day – it wouldn’t matter to me if he wanted to change that schedule, but I knew that him changing his schedule voluntarily was highly unlikely. I asked him why he wanted to go on Monday, since he just took them out a few days before. He just stood there are stared at me.

“DC, why do you want to go tomorrow?”

” ‘Cole-cot lie-ber-ary’ with Mrs. H on Monday”

“Don’t you want to wait until Friday?”

Now he has starting to look panicked….

“DC, what’s wrong? You can go on Friday with Mrs. H”

“No! ‘Cole-cot lie-ber-ary’ with Mrs. H tomorrow!”

I was thinking that he was trying to get out of cleaning his room (Life-Skills – Monday) or worse… going for a walk, but then I realized that he was a step ahead of me in the planning of his week:

Friday was the 3rd of July. He had the day off from his program and I had the day off from work. This meant no Mrs. H that day and no Friday trip to the library.

I had never mentioned having the day off on Friday. I am not even sure that I had told him at this point that he was off as well. I’m sure he knew a holiday was coming and I suppose he heard or figured out that it was being observed on Friday.  Knowing it was a holiday, he figured out that he would not be going to his program, I would not be going to work, Mrs. H. would not be there that day and as it was a holiday, and it was possible that the library would be closed. He made all of those connections in his head and came up with his own plan to return the books that he had and to take out some new ones.

This may not seem like a big thing to some but I have to say I found it quite impressive…….

The books then took their place on the kitchen table in preparation for Monday.

But, Will There Be Cake?

DC’s father was in Florida for the winter. He left in mid-November. DC did get to see him on the day after Christmas for dinner when DC, Doug and I were in Florida on vacation.

His dad came back from Florida in May for the summer. One of DC’s first visits with his dad was on a Sunday. They went to his Aunt’s house for DC’s belated birthday party. His dad was not here for his birthday and his Aunt was ill at the time, so the party she planned to have for him right around his birthday had to be put on hold. They made up for it that Sunday though. DC was happy, he loves his birthday and nothing could be better than to be still celebrating his birthday two months later and let’s not forget the cake! Cake is very important to DC!

His father asked to take him on the following Wednesday, so DC went to his father’s house and came home in the morning in time for his transportation to take him to work. It was only a few days later on Sunday that DC had his seizure. He was supposed to go to his father’s on the following Wednesday, but we decided to cancel since it had only been a few days since the seizure and I was not comfortable letting him out of my sight.

A week later, his dad took him to his Aunt’s house again, this time to celebrate Father’s Day with the rest of his family. DC came home happily listing everything he had to eat because that is what is important. (He did ask me about “cake” before he left that morning and I told him that there may not always be a cake every time he goes to his Aunt’s house…..but yes, there was a cake :) ).

When his dad returned him on that Sunday he asked if he could take him again on Wednesday. DC got frustrated and said “No! I don’t want to!”. He does this at times – he says no, without meaning to or without really listening to what he is saying “no” to. I told him not to worry, we had nothing scheduled on Wednesday and it would be fine for him to go to Dad’s. After his dad left he continued to go on about not going. I thought that he might be confused so I brought him to the calendar to show him that there was nothing going on that day. I wrote “Dad’s House” on the calendar. DC got angry and yelled “Cross Out! No!”.

From the many years spent crawling around in DC’s head trying desperately to figure things out, I had an idea about what was going on here, but I left it alone for a while. When I talked to him again a few hours later and got the same response, I decided I had to call his dad the next morning. As I said, I had an idea about what was going on but first I wanted to be sure that nothing happened, even something as small as the power going out for a split second, or the dog jumping on him, or a piece of furniture in different place, would be enough to cause this anxiety. There was nothing that he could think of.

I told him what I thought this was all about. DC hadn’t seen him in over 6 months. He was now used to not seeing his dad and only talking to him on the phone. Even before he left for Florida, he had not taken DC twice a week for many years, it was always once a week – every other Sunday and every other Monday. Now he is home and DC, with his own agenda in his head, and also quite used to not seeing Dad, feels as if Dad is “cramping his style” for lack for a better term. That, combined with his seizure and probably not wanting to sleep anywhere but home was making him a bit anxious. He loves to see his dad, don’t get me wrong, but he is used to what he is used to and it will take a little time for him to get used to something else. His dad suggested that I ask DC what day he would like to go to his house.

Later that day I did ask DC if he wanted to pick a day that hewanted to go. There was no fussing and no anxiety, it was his choice. He immediately wrote “Dad’s House” on Sunday. I told him that I would call his father to see if he was available that day. As it turned out, he wasn’t. I told DC that Dad had to work on Sunday (he didn’t, but it was easier than trying to explain “other plans”) I asked him if he wanted to make another choice. He chose Wednesday! The same day he was so adamant about not going!

Wednesday came and he was happy to go and he was still happy when he came home.

What have I taken away from all of this?

~ He needs time to get used to the fact that his father is going to be a part of his schedule again, at least until winter comes.

~ We need to make sure that DC is allowed to have some say in the matter and give him a choice of dates.

And….. you might think I am trying to be funny or making a joke, but I know my child…..

~ I am absolutely 100% certain that when I first gave him a choice and he opted for Sunday right away, it was only because he thought there would be cake……