Friday, October 14, 2005

But it's Still Dark Outside, Billy Ray

Sleep is something that evades us a lot of the time. A case manager once wrote in his yearly report that I didn't want to add any more medication for Billy Ray so chose to live our life sleep deprived. I called him laughing "if only there were more medication to help him sleep." We have tried many sleep medications. Some work for a few days and some not at all. Some will work longer but you have to take breaks from them half the year.

Billy Ray tends to wake up about the time I am ready to go to bed many nights. If not then he will often wake up at midnight just as I am really sleeping well. Getting woken up at that time makes it hard to function to take care of him. Thus it is easier to stay up until midnight until after he has awaken, bounced a while and gone back to sleep. It is like a little game at times I wait until I think he is asleep for sure and it is safe to go to bed. He wakes up just as I get into that hard REM sleep that it is hard to wake up and take care of him during.

Many times he just wants to know that I am there. He has a double bed and when I am desperate for sleep I can crawl in beside him. I have learned to put one arm over him and sleep part way while he yells and bounces (depending on how desperate I am for sleep). He may not go back to sleep but he won't get out of bed if I am there. Other times he wants me in his room but he wants his whole bed and will say "puter" which means he wants me to go sit at the computer. He may go back to sleep with me his room; other times he will talk the rest of the night.

We are fortunate in that Billy Ray is not really a run risk. Many complex children will try to get out of the house or get into things that hurt them in the night while his or her parents sleep. Elaborate safety measures are required. Billy Ray either yells until he gets our attention or comes to our room to get me. I haven't had to worry about him trying to get out the door. I am thankful for that.

Amazing changes in life happen when you are sleep deprived. The patience and friendliness you used to have with friends, family and even grocery clerks can be affected. It impacts appearance and many other areas of your life.

There's your glimpse into life with a complex child for today.

Until tomorrow,

1 comment:

Anonymous said...

What therapies would you suggest for a 4 1/2 year old who doesn't sleep well, who is profoundly deaf and has several delays - mental, physical, physiological.