Ramblings of a Sleep Deprived Mom

It’s morning although somehow it doesn’t feel like it. Billy Ray was awake briefly at 11 p.m. and several other points where I was up with him briefly. At 4 a.m. he came into my bed for a while and then went back to sleep for a couple more hours.

It occurs to me that when I write blog posts after nights like this I need to put a warning: “Content written while sleep deprived”. Then in my goofy, sleepy mood I am thinking we need bumper stickers than say “under the influence of a complex child”. However, I am not sure anyone but another parent of a complex special needs child would understand what that means.

Last night while I was waiting for Billy Ray to go to sleep I was composing a letter to a media a person I hope will consider helping bringing to light the life of complex special needs children. In Autism in the News we said that much of the media coverage is about High Functioning Autism and other higher functioning disabilities.

It seems important to help society as a whole get a glimpse into our experience not so that they will feel sorry for us. Understanding will go a long ways to change acceptance in the community and maybe even remove change of the governmental illogics I talked about in yesterday’s post.

Domestic abuse in spouses and child abuse is understood more because we have heard about trials in the media and had movies made about it. Very few people understand what it feels like when your child or sibling beats you up because they are confused or agitated. We hear about parents of disabled persons who murder their children without enough detail to hopefully prevent future occurrences of such cases.

While watching several of the clips from the funeral of Coretta King yesterday it occurred to me we need leaders such as the Kings who will fight to bring to light the needs of our children to the those who can change conditions. Lawmakers have made steps to change laws to benefit our children but they can’t regulate community acceptance.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Sleep Deprivation

Sleep deprivation has a way of affecting every area of life. Many children and adults who experience Autism or Bipolar and other special needs have issues surrounding sleep.

Sometimes when Billy Ray is experiencing a manic phase with his Bipolar he will not sleep for 40 hours or more and is active the entire time. Other times he is up and down most of the night.

Once a case manager wrote in a report that I didn’t want to give Billy Ray additional medications to lived our life sleep deprived. WRONG!! Nothing that works for Billy Ray long term. If he takes a sleep medication longer than a few days or a few weeks, at most he builds up tolerance to it.

Reactions to routine events change when you are tired. You do and say things you would never do if you were well rested. If someone calls on the phone you may sound like a drunk when really you are just catching a nap while your child is napping. For example, yesterday I was trying to take a nap in my recliner before support staff left. I woke up to the sound of the phone ringing. It was my editor. I didn’t really remember calling her and rambled on for a minute totally out of focus.

Then, of course, there are mornings like this morning when you feel “hung over” because of actually sleeping. Billy Ray lost his covers at midnight and 3 a.m. waking up until I covered him up again and went back to sleep. We actually got several hours of sleep. My head is foggy, not being used to so many hours of sleep.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

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,
Peggy

http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/