It’s morning or so the clock says. It doesn’t feel much like morning, more as a continuation of the night. When I wrote But its’ Still Dark Outside Billy Ray was having lots of sleep issues. A new behavior medication was added last fall when we were having the most difficult behaviors and his sleep actually improved. I was beginning to think that we had hit on something because it has lasted longer than normal. This is a common thread we have experienced for years. He will have periods where it looks like whatever we were trying for sleep is going to work but a few months later we are right back into being awake a lot at night. Now he is waking up earlier and earlier. We have been up since 4 a.m. today.
We probably have to start over more than many of you because of Billy Ray’s medical issues. Many times in the last couple of years we have had him doing well with a routine only to get sidetracked with some form of health crisis and have to start again when it is over. We are again, where we were when I wrote about seeing a change coming and about regrouping here and here . It may take a while to get back to the elation of getting him back on track but we are headed in that direction.
As we discussed sequence is very important to Billy Ray and many complex children. It is a hard concept to explain to staff and family members. As long as the activities or tasks are done some find it difficult to understand why it matters which order we do them in. It certainly does matter to Billy Ray. He demonstrated that to his staff this morning in that he tried to put coffee cups in the dishwasher before his regular routine.
Last night I experimented with reworking his evening schedule. There were two reasons for this. First, past history demonstrates that the closer to dinner he goes to bed the more likely that he will get to sleep. He gets sleepy soon after dinner but later he gets his second wind and will stay up all night. However, it seems everything I have been reading about GERD (acid reflex) lately talks about the need to separate dinner and bedtime by at least two or three hours. The normal procedure could be contributing to his problems with GERD. Second, he has been giving me static about brushing his teeth and part of his evening routine lately.
Last night he had an early dinner. He went into his room and started putting his sweats on as he normally would do after dinner. He has been showing considerably more independence in this process except for the hooded sweatshirt so I tried not going into his room until he was at that point. He seemed pleased to be allowed more independence and privacy.
His normal routine would be to ready for bed including teeth brushing before he gets his popcorn. We know it’s not great to let him eat after teeth brushing but he had frequently fallen asleep during his popcorn and/or refused to brush his teeth after it pretty regularly so we kept the routine that way. Last night, instead of doing the teeth brushing after he toilets I waited until he had finished his popcorn with his movie. Then I cued him “let’s go brush your teeth and get the popcorn out of them”. It took him a couple of minutes to respond because it was a different sequence but he did respond and let me brush his teeth longer than he does sometimes.
We were able to get the recommended time between dinner and bedtime and he actually did go to sleep. I made notes in the journal (on the computer in his room) and we will see how it goes over the next few days before actually changing his schedule permanently.
Billy Ray is working his morning routine and getting ready to go bowling today with his support staff. I think I’ll take a nap.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group