The Ugly Side of Autism

There I said it! I said what every parent of a child with autism wants to say but in every way feels guilty about saying it. I know this because I've been there. In no way by saying this am I saying my children have an ugly side but their disorder certainly does.

Friday the 13th our hot water tank broke in the middle of the night pouring well over 50 gallons of water in my finished basement. My children's playroom was located down there. To say the least Sophie was not happy to come home and see that everything had changed! The carpeting and hardwood had to be pulled. All her toy cabinets are now junk along with her toys. I just don't know HOW to explain to her in a manner that she would comprehend, nor can she freely express to me her complete displeasure of what's going on. To boot the kids are now on April school vacation, this couldn't of happened at a worse time!

So now the symptoms of her disability are clearly showing. She is crying and not able to tell me why, she is hyper because she doesn't know how else to get her frustration out and her PICA has kicked in this week with full force due to the stress she is experiencing with all this change. As any parent with a child with autism knows CHANGE is not good. These kids thrive on sameness and schedules. Emme on the other hand is handling it a bit better. She doesn't seem to mind very much but has been a bit whiny.

People might wonder how this affects the parents, well I can tell you how it affects me. I haven't had a moment to myself during waking hours, not even to have some privacy in the bathroom. Forget trying to cook and clean, it's not happening. There are days that I spend in my pajamas all day long. There are countless days that I just throw in a ponytail and rarely ever put make up on. There are days when they go to school and all I want to do is spend the day in my bed under the covers. Of course I would love to have my appearance look perfect but hey this is my reality. I'm exhausted! Many times when I'm alone I find that I talk to myself and sulk, and to be honest ya know what ... I'm allowed. I'm human! It's those pity party days that I have with myself that allow me to pick myself up and say "Chris ... you have no time for this" there's therapies to be done, children to care for, IEP meetings to attend, research and advocating to be done!

So the next time you see a mom, or dad for that matter, struggling with the ugly side of autism, reach out. See if there's anything you might be able to do for them just to give them a small break. It could be taking the kids out to play or making them a simple dinner or just giving them a simple hug. No words need to be exchanged we just need to feel that people "get" our struggles.