Casualties of war. That’s what it sometimes feels like. One of the things people don’t think about when it comes to autism is the marriages involved. Raising an autistic child (in our case most likely two) has such an impact on our lives as a whole. Everything gets put on hold in order to wage war on the disorder stealing two of our three children away. Priorities shift and you become tunnel visioned on that one thing you want more then anything, getting your child back.
One of the big things that gets put on an indefinite hold is our marriage. There simply just isn’t enough time and defiantly not enough help. It’s a very painful reality to find yourself in. My wife and I are absolute best friends and we have been for almost 10 years now. We have a very solid relationship and marriage but as the kids needs change and increase (in Gavin’s case almost daily) we find less and less time for each other. Pretty soon you realize that the last time you have had ANY alone time was so long ago that you can’t remember. The very few times we have found ourselves without the kids usually revolves around some type of doctors appointment.
I think most people take the simple things for granted. Going to a movie or out to dinner comes naturally. For us it comes never. By the end of each day we are both so physically and emotionally exhausted that we pass out. We are awoken a few short hours later by Emmett John’s nightly screaming. By the time we go back to sleep it’s time to wake back up and get Gavin off to school. Typically we have been forced to take turns sleeping during the day. It’s never restful.
Autism is a cruel bastard of a disorder. For Gavin it stole him away. One day everything seemed fine and the next he was gone and I mean gone. The Gavin we knew was simply just gone. It honestly feels like someone came in the night and took everything he was away. All that’s there now is a shell. You cannot understand what I mean unless it’s happened to you. The closest thing to relate it to would be Alzheimer’s.
Emmett John has started down the path to an autism diagnosis. My biggest fear is that he has the regressive form also. I constantly fear that every moment I have with him may be the last. I watch him sleep and wonder what he will be like when he wakes up.
These are the kinds of things I have to live with. I know many of you out there are going through something very similar. My hope is that people read these snipits of my life and maybe have a better understand of what we as special needs parents go through. Maybe you can have a better understanding of someone/s in your life that needs help but may not ask for it.