IsolationPosted: September 26, 2012
One of the more difficult aspects of having a child on the autism spectrum is how isolating your life is. This isolation is not instantaneous. It creeps up on you slowly.
When I first started having my suspicions that Xander might be autistic, everyone told me I was being paranoid. “He’s so sweet!” “There’s nothing wrong with him” “He’ll talk when he’s ready.” These were things that were said, consistently, whenever I would raise concern. It was the first moment I remember feeling world’s apart from my family and closest friends.
Once Xander was diagnosed, I threw myself into his therapies. I drowned myself in research on every technique, vitamin supplement, and alternative education plan to help my baby. It was a hardcore coping mechanism, that drew me even further away. I was cold, to everyone but my therapy team and my son. It was a dark time, and I wish I had been able to embrace and lean on others, rather than fight so hard to do it alone. A big contributing factor to this, was the overwhelming amount of guilt that I felt. As a mother, there is no explaining how devastating it is to hear that there is something “wrong” with your child. It doesn’t matter what it is, how major or minor, it is your fault. I, to this day, have never felt any emotion as strong as the guilt I feel for Xander having autism. It’s irrational, and unexplainable, unless you’ve been in this type of situation.
In addition to the personal isolation, there was also the joy of being publicly outcast. Taking Xander to the park was a nightmare. Putting him around TD kids was the number one way to showcase just how far behind he was. Kids, and their parents, were cruel. I cannot count the number of times that I saw parents look sideways at my child because he was stimming, or a child ask him “what’s wrong with you?!” because my son could not verbally respond to his question. It hurt in every fiber of my body, god, it hurt.
The turning point in this cruel game of isolation was countless phone calls with a fellow autism momma, and Xander’s social group. The woman whose son I was working with when Xander was diagnosed, has three boys that are all autistic. That woman was a lifesaver. Literally. She is the ultimate warrior mom, and I strive to emulate her strength. She related to everything I was going through, and it was such a comfort. Xander’s social group was the same way. Once a week, for an a hour and a half, I got to feel normal. These women all shared the same struggles. We all had been hurt by the actions of TD people. We all related to the inability to walk down the freezer aisle because no pint of ice cream was worth the mega meltdown the fans in the freezers would cause. There was comfort in our shared pain. It made me realize that I wanted that comfortability with the people who were involved in my everyday life. It’s one of the main reasons that I started this blog. To extend the olive branch of understanding.
It is, and always will be, a struggle to remain open and balanced. The self induced isolation is hard to push away, as many times it would be so much easier to shut everyone out. The tragedy there is what we would miss. So, be patient on those days where I am cold. Those are the days where I need you all the most.