Everynight just before Billy Ray goes to sleep he asks "where we going". He means what are we going to do tomorrow. Sometimes he needs to plan his clothes out (although he rarely wears the ones he chooses the night before). We need to deal with this pattern of questions over and over again until he feels secure in the answer before he will fall asleep.
Each day there is a series of repetitive questions that will come at various times. Answers must be specific and the same everytime. He has created acceptable answers. If he is given the "wrong" answer he can become agitated, sometimes dropping to the floor and refusing to go on with whatever activity is necessary. For example, his former high school principal, Mr. Koger, has to be "in his office" whether it is 3 a.m. on a Sunday morning or noon on Monday.
It is difficult for support staff to know all the answers to his questions. Sometimes it is difficult for them to even understand his question. In the above example he might say just "Koger". This could be that he wants to wear Koger shirts or pants because he has named his dark western slacks and white western shirts after Mr. Koger too. Finally, I created two notebooks one has two strip of velcro and reads "I want" and "I feel". He can place a velcroed symbol next to the appropriate phrase to complete it on the days he can't get the words out. The other is a picture guide with his questions. He can point to the picture and support staff can read his "answer".
I some photo albums that hold 4 x 6 pictures on a clearance table at the grocery store. They are the perfect size to put in my purse. When we go to a restaurant or wherever I can pull them out. He can look at pictures instead of the constant repetition he makes about what he wants or what are we going to do next. I change the pictures before we leave for whatever activity to have as many of the answers to anticipated questions as possible in that little book. He also has his planner (see Planners on my website for more details) with him most of the time which answer most of the "what are we going to do" next questions.
Is this an Autistic thing or a Down Syndrome thing or just a Billy Ray thing. It doesn't seem to matter, we just keep adapting what works for him.
If you do something different share it in the comments. It might help someone else to adapt to their child.