Day #1

My sons new respite worker sat with me over a table full of paperwork talking about living with autism. She said one of her co workers at her day job stated "Respite workers are just glorified babysitters, and parents of special needs kids should just take care of their children like any parent of any child does"
Because of that conversation I decided to write 365 Days of Autism. Maybe my words on this 8th year of my autism journey with my non-verbal autistic son, will help those who don't understand this life. I will share 365 days of my life with you and it is my hope that you will come to understand our autism, and the lives of so many like us.

So here it begins.... Day #1
"Everyday I hold on for dear life because I have no idea where my day will begin, or when and where it will end."
This has been another night that has carried on into morning, another night without sleep, but still my mind is in overdrive. At 4:57am,I stood in the doorway of the bathroom after my little angels 9th bath of the night, helping him get dressed. I kept thinking, "How can anyone think respite care is glorified babysitting?" Parents of typical kids don't have to stay up all night, or help their kids get dressed 9 times after 9 baths. They don't have to listen to non stop screaming, crying, door slamming until the break of dawn. That is just what we do. The bathtub is the only thing that calms him down these days, it is the only thing we can do to keep him happy and quiet so my older son can get some sleep. I don't get to sleep much. I haven't slept in a bed for 8 years because my little angel wants to sleep on the couch in the living room. I get to sleep on the loveseat, and I adore the few hours a night I get to close my eyes. I have to sleep where he sleeps because I can never be sure if he's going to try to get outside. It is never ending, exhausting and tomorrow I will get to do the same thing.
Finally at 5:39am he falls asleep. Days like this I walk around so numb, my mind in a fog because I just can't get any sleep, day after day after day. It is always my hope that he will finally get a good nights sleep as well, but whether he sleeps 2 hours or 8 hours he is still raring to go. I am always so tired, I can't keep up. Sometimes I'm afraid to sleep. I wonder when my body and mind are just going to give up. How long can someone survive exhaustion? Can you die from it?
I'm a single Mom, so I do this by myself. Everyone says they couldn't do it, I tell them if this was their child they would. We all have our hills we have to climb right? I'm keeping my fingers crossed that tomorrow will be better.