On some days I feel like I live in such a lonely world. A world where only a few select people know what it is like to live this life. A life where you are a mom to autism. Although this life has truly taught me a lot about mankind, its an exhausting life. You find out who truly cares and who truly wants to help. Unfortunately, you find out who is only there for you when times are good. The "times are good" people also show a lack of compassion, lack of empathy, and only think of themselves. They are the people we only hear from at certain times of the year. These people act as if we are a normal family. We are far from normal! I was told after Trenton's diagnosis that I will find out who my true family and friends are. Unfortunately, I have heard this same sentence from other people who have had other tragedies such as the death of their child, close friend, and other tragic events who have changed some peoples life.
It is 4:30 AM and I have only been able to sleep for two and a half hours tonight. I have watched Trenton going completely nuts for over 13 hours straight now. He is having a hard time filtering out the world around him. For instance, I went to my aunts today and only stayed one hour. Ever since we came home, he has only stopped moving his body, has only stopped making high pitch shrills for three hours when he was sleeping. He has ran and paced up and down my house. He has climbed on top of our kitchen table, computer stand, and counter tops. There is no stopping him. All the while he is constantly shaking his arms and legs as if he has the "ant feeling" (the ant feeling was described from a girl with autism. She says her body feels like it is on fire with a thousand ants crawling all over it).
Needless to say, I am tired and at my wits end. Trenton has had three nights of very poor sleeping in the last 7 days. Are we heading toward a bad streak of not sleeping? If Trenton is sleeping, Andrew is up in the night. On Saturday I watched Andrew have an episode that was remarkably close to a Trenton night time episode. I feel like every day I am watching my youngest son slip farther away from what is considered neuro typical every day. How would you feel? The feeling can not be put into words on how it feels to have lost one son to autism already and possibly your other son too.
A few people have completely changed their life for my family and two of those people are my parents. Yes they live right next door but they would have done the same if we lived 8 hours away. My mom is the person I can talk to about my life and she completely understands. She has been up in the night with Trenton, she knows what it is like to take care of him on a daily basis, she has put herself in my shoes and has walked the walk thousands of times and I have never heard them complain about helping us. When I was talking to her the other day about my life and how I am sleep deprived she said, " You will never be able to put your head on your pillow again and count on sleep." She is right. That part of my life is over. It is amazing how our bodies depend on sleep in order to survive. If I was able to get even 5 hours of sleep each night, I would feel like I was on top of my game! One needs sleep in order to take care of autism every second of your life.
To all of you who are living this life too....you are not alone! I read your blogs, I read your emails and you are in the same situation I am. Just remember....you are not alone!