Autism As A Whole

As I meander through everyday life, I am often bewildered by my surroundings. Many times I feel as if life is totally passing me by. Sometimes I cant even remember how I got where I am. I keep hearing the words, "You are on autopilot, but a pilot is in control and I don't feel in control so I guess that doesn't work. I am always struggling to figure out where I belong. Most of time I feel like I am being pulled in several different directions.  The control seems lost, emotions raw and stifling and questions still awaiting answers.



Is there a place in this life where I can be me? When will I figure this craziness called life out? When will I find my space in this planet? What box do I fit in? It seems that I have not only lost my identity but also my placement in the social world. Conversations that are so simple, yet forced and usually meandering back to me talking about the only thing in my life that gets focus, my children. Maybe, I don't need one singular box, maybe I am meant to fit into many different boxes. I am not certain that anyone is supposed to fit entirely into one box. However I am struggling to find any box that fits for me.

For many years I thought the autism community was where I fit, but since My Hero Charlie got sick, I don't feel I belong there. I think for the mere fact of trying to relate with people. Not that I am completely disassociated from it and I certainly don't feel like they shun me but it is me personally, and how I am NOT coping properly with my situation. Autism is a huge part of my life but it doesn't even compare to the torture I am witnessing.

I can't wrap my head around what is going on with my son and it really hurts to see other people's children doing things my son was once able to do. I cry when I drive past a park and see kids playing and every time I have to decline a party or event due to his health.  I feel hurt and anger and an inability to allow anyone to even try to relate to my emotions. It makes me cringe whenever someone says they understand and, he will get better. The voices in my head scream and rage that they have no clue. How do they KNOW? I sure hope this is a natural method of coping with grief cause it gets very lonely when you are barricading yourself in.


Seriously, I think I work with two brains at all times. The sensible brain and then my emotional and most times irrational brain. My sensible brain tells me that there are people that understand and love me. That brain know I shouldn't feel the way I feel but that doesn't make it any better. Unfortunately it can not mute the screaming inside my head or numb the pain of my heart. I find myself trying to force a smile amidst company and pulling away from anyone that will see the deep hurt that seems to have become a squatter in my soul. It steals away moments of peace whenever there is a moment to reflect. I wonder if other people have the same issues.

I know this will get better and I will rise to a happier place again. Tomorrow is another day and, setting aside the daily stress, I will attempt to find a small triumph to smile about! We can do this as a family!

Please comment if you like what you read and if you can "relate".  Thank you so much!

Hello, as a single mom of 4, who has always tried to make everything work without asking for help, I surrender! I was told that in order to receive we have to make it known that we are in need and despite my personal pride and desire to do his on my own I know that I can't right now. Going to work is  impossible right now with Charles being so sick and everything seems to pile up. Charles has many needs and supplies that are not covered by his health insurance. He has lost his ability to maintain his bladder, mostly at night, therefore I need to have chucks handy. This is adds a lot of stress which is starting to affect my parenting skills. I have less patience than I typically have and seem to be crying a lot. I am emotionally spent! Over the Christmas season my family was blessed by some very amazing people who gave my children a Christmas to remember and also helped me get a new washer and dryer because mine was broke. I can never thank everyone enough.

I now need to ask for some community support. Chuck Cheese aka My hero Charlie, needs multiple supplements that are not covered by insurance. This happens to many families with children that suffer with Mitochondrial disease. We have T-shirts and hoodies available for purchase as well as a paypal link in the sidebar. Please consider helping to energize my baby so that maybe we can get him into school more and increase his quality of life. I miss my baby before he got sick!
Please click the image below to join this campaign and purchase your shirt or hoodie. They were designed by Doctor Ivan (DoctorIvan.com). Thanks in advance for all of your support and please share the links and this post.