When I meet a new autism family one of my first questions to them is almost always, "Does your child sleep?" I know firsthand what lack of sleep can do to a person and it is my number one concern for new families starting out on their journey.
I've seen numbers as high as fifty percent of individuals on the autism spectrum suffer from sleep problems. If you have been following my blog, you know that my boys are in that percentage that suffer. ...and......that means...I suffer too!
Being tired is WAY different than sleep deprivation. Being exhausted is WAY different too.
Sleep deprivation is a very serious condition and I suffered from it for several years. Now, I'm exhausted not sleep deprived....Let me explain.....
Trenton has never been a good sleeper. He has always had trouble going to sleep and staying asleep. For years he would either stay awake till 2 AM and be up for his day by 5 AM or he would crash and burn around 8 PM at night and be wide awake by 11 PM and go back to sleep around 5 AM till 7 AM. He did this up to around the age of 5. For five years I didn't get much more than two hours of broken sleep a night while handling the challenges that severe autism brings daily to our life.
Also, Andrew didn't sleep. He would often wake up screaming and crying every 45 minutes and need help being soothed back to sleep. My total hours of sleep in a 24 hour period was two hours of broken sleep.
A person can't live like that....not a neurotypical person who has a body that requires more. Slowly over time it damaged me and my body. Sleep deprivation took over because a person can't go on that little of sleep.
This is how I suffered from sleep deprivation....
I had a numb face daily. If it wasn't both sides of my face, then it was one side of my face that often tingled and went numb. It hurt to put one foot in front of the other. Literally it hurt! I suffered from body aches daily. My body and muscles were tired and they needed sleep but I couldn't give it to them so they just ached daily. I can compare it to what a persons body feels like when they have the flu or cold.
Besides the numb and tingling face, I had a lot of muscles spasms in my face. Often when I would open my mouth to eat, my face would have spasms.
I had blurry vision almost daily.
I developed an irregular heartbeat that was brought on by sleep deprivation which landed me in the hospital twice.
Every single day I didn't even feel like I was in my body. This one is hard to explain, I felt like I had out of body experiences daily.
I had no energy. I had no desire to do anything. I wanted to hide from everyone because it hurt to carry on a conversation. It took energy that I didn't have and needed to save to get through the midnight hours.
I cried daily and if I didn't cry, I was on the verge of tears.
I gained 45 pounds. I had no control of my body. When a person is sleep deprived their body doesn't function properly. Therefore, one area where my body stopped working was burning my calorie intake. My metabolism literally shut down and I gained a lot of weight.
I lost chunks of my hair.
I got sick all the time and never have had a history of being sick much until then.
I was sad all the time.
I had no life in my eyes. I look back at pictures of me during Trenton's first five years of life and the look in my eyes makes me cry now. There was no life because I was barely hanging on to life myself.
All the while I was dealing with this effects from sleep deprivation, I was also trying to adjust to the diagnosis of my two sons and a failing marriage. Needless to say, if I could pick one area that I am so passionate about in helping other families it would be sleep deprivation. My heart sinks when I hear a family say that their toddler with autism doesn't sleep....I cry for them because I know what it can do to a person.
So, if you ever hear that random person or random high school teenager who complains that they are so tired and deprived of sleep....just nicely tell them they have no idea what deprived of sleep is really about.
I know and I know many of you know.
I am so thankful that today I can say I am just exhausted. I get four hours of sleep a night and that is like heaven compared to what I went through for five years. So, I will gladly take my four hours of sleep and be thankful!!!
Why am I sharing this? I simply think it is part of the education process of what autism families go through. If their child doesn't sleep, it effects the entire family.
Trenton and Andrew's sleep will never be perfect. It's part of their challenges. I accept that and am just blessed and thankful for sleep when I get the chance to get it:)