I remember the day as if it were yesterday. I had just walked in the door at my mother’s house to pick up my son. As I was finishing up and getting him ready to get in the car my mother said ten words that shattered the wall of denial I had built up for a couple of months “Do you notice he doesn’t respond to his name anymore?” To say that I lost control of my emotions would be an immense understatement. I took out all of the anger I had built up behind that denial on my mother (I have since apologized.) I knew what she was implying and that meant that it was real and it was happening to us. I spent the next couple of hours under the mask of Zoloft, which I am not proud of. We spent the next few weeks researching and waiting on doctors to confirm what we already knew.
When he was first diagnosed, and even before, it was hard for us to really go anywhere. When we did people would look at us funny or comment on his “unique” behavior. When you are first starting your new role of parent nothing hurts worse than people judging your child. It’s not easy to learn how to adapt your way of thinking in order to survive mentally. People can be cruel and put in their “medical” opinion when in fact they have never been to college let alone medical school. Believe it or not, a woman actually told me that if I only loved my child more he wouldn’t have autism.
Lucky for her I was still in the shock stage of the diagnosis and really didn’t have my warrior’s sword hanging from my hip. There are constant roadblocks with autism…you make three strides forward and take fifty giant steps backward. As with any disease, the stress of the diagnosis affects the way the babies heal. We had to stop and think…”Where do we go from here? Do we deal with this by ignoring it until it gets worse? Do we jump in feet first and swim until we run out of breath? ABSOLUTELY! There was no way I was gonna lay down and let this world walk all over my baby. We decided, as a family, to fight and fight hard.
I have had to pull my screaming child out from behind the toilet because a plane passed over and he didn’t know how to process, what we “typical” people would call a simple background noise. You see for most people with autism there is no such thing as background noise. All of it, the water running through the pipes headed to the sink, the swishing of the air surrounding the fan, the dog barking three houses down is all upfront noise.
When my son’s tummy hurts, which is inevitable with children with autism, he has never been able to tell me. Imagine having a headache and not knowing what it was, not having any way to ask someone what was happening and not being given anything to help with the pain.
My son would repeatedly throw himself into the couch tummy first to combat the pain. From our eyes, it was absolute torture and we had no idea how to help him. As cheesy as it sounds it was an episode of Oprah that steered us in the right direction…