I have always held on to the belief that you can tell a lot about a person by how they respond to adversity. I used to be able to say that I work well under pressure and was able to remain calm when presented with different challenges throughout my life. That was in the past though, before I was met with a far greater challenge and all of that toughness started to go out the window when confronted with autism. Now if you see me, you may notice I tend to walk with my head down or seem to have a distant look in my eyes. These are both sure indications that my thoughts are elsewhere. I often have trouble focusing on something when I know my son is sick or having a hard time adjusting to a change in his schedule.
When I watched my older son struggle through his acid reflux problems and crying fits as a baby, a part of me was affected in a way I didn’t know possible. He just couldn’t get comfortable. That was only the beginning. Then as he grew older we noticed his lack of speech along with the extreme sensory issues. All of this was accompanied by tantrums. I don’t know of a single day the past four and a half years where there wasn’t something to worry over or obsess about. From the illnesses, doctor appointments and evaluations to crying fits, tantrums and frustration for all involved, I now have a hard time imagining a time or a place where autism was not in my life or a part of my everyday thinking.
I’ve discussed this before and I will reiterate the same idea again, what happens when you become so involved with autism and helping your child that you have a hard time connecting with others that are not affected? Is that something that other parents of children on the spectrum are concerned with? Does that make me a bad son, brother or husband if I fail to connect with family because I am too focused on special needs?
As a special needs parent I know there are people out there who think less of my son and feel the need to remind others that they do not approve of certain behaviors associated with autism. They may even label him different, call him slow or see his disability above all else. Seeing and experiencing these type of discriminatory actions is something that causes me a lot of sadness and frustration. When it happens I sometimes feel like I got hit with a sucker punch and the wind has been knocked out of me. I am unable to focus on anything and in that moment I struggle to try and find some way to channel that anger into something positive. I just sit there and wonder why is it so hard for special needs parents and families to find compassion and patience from others.
My experience these past four years as a father of a child on the spectrum has done something rather unexpected. It has completely destroyed the wall I had built around my feelings. I now allow myself to experience as well as show others a full range of emotions and I have moved past the notion that I should show indifference or stoicism. Going forward as we continue to advocate on our son's behalf we will be faced with a whole new set of challenges. We will be prepared for some but not all of life's adventures. I will run through a gauntlet of emotions and for the first time in a very long time it doesn't bother me who knows it.
