Living with Autism - Part One

Sam is 4.
Sam is cute, sweet, loving, emotional, curious, intelligent, flirtatious... These are words that just barely scrape the surface of what makes Sam.

Every day my wife and I are faced with the challenge of being his parents. I cannot explain what this is like really. Very few people have been able to understand what we're faced with in any given 24 hour period. Recently my Mother stayed with us for a month and really had a better idea what life was like for us. I think it changed her life to see just what kind of work goes into life for us.

I have been going through an internal process of organizing the things that have been heavy on my mind lately. In doing so, I have become more aware of my feelings in regard to having a child with special needs (as well as in my life in general). With this realization I have unearthed a host of things that have become almost hypersensitive; compassion, empathy, fear, anger, confidence, intolerance of the intolerant, measuring my life against the perceived lives of others...

I am going to share (thoughts) with you over the next few months as well as these observations of myself.



OBSERVATIONS - Part One - (thinking of others: intolerance/empathy/compassion):

With the increase in children with Autism, and really with special needs in general, spanning the entire spectrum (from severe to highly functioning) you might think that people would show signs of pulling their heads out of their asses when in public places.

Sadly, I fear that is not the case. There are plenty of times when my patience is put to the test and only on very very rare occasions to I confront people.


You're the person who seems to forget that at one time you were a child. A snot nosed obnoxious loud misbehaved little human being. You are the one who gives me the annoyed look when my child(ren) are singing in the store. You're the person who looks at me with contempt because I don't stop my son from hooting down the aisles of the grocery store that is shoving some of the worlds worst music into your precious eardrums.

I ask you this... At what point in your life did you make the transition to being so damn sour?

I have come to find solace in people who are the opposite; empathetic, kind hearted, compassionate moms, dads, aunts, uncles and grandparents. Often times there is a knowing glance or a smile that soothes me. I especially enjoy radiating my kindness right back to the folks who are in this supportive group of people.

The biggest challenge that I face with the people that are intolerant is that it has caused a great deal of anxiety for me.

This anxiety has caused a bit of friction between Jen and I. It often leads me to decisions (such as whether to go to 'X' or to 'Y' for dinner, or to get groceries, etc.) based on some level of potential discomfort and anger that I might feel. These things are based on my assumption of what is likely to happen. Built on a foundation of previous experiences, this is a fucked up and stupid thing. I'll put it on the 'to do' list for future therapy.

What I try to do is be as 'real' with folks as I can. I apply this to strangers and friends alike. I think it is a trait that is suiting me well in my night time occupation at the bar. I get a lot of great feedback from people and I am the first to admit that I am always starving for validation. I also am very aware that I am sometimes intolerant too. It's human. I do try to always remember that when encountering someone who just simply rubs me the wrong way.

I don't have advice for adults who are steeped in the foul stench of complete intolerance. I kind of think that once you reach a certain age you're cured like concrete. I suppose there are rare occasions where people do ride the epiphany wave once they have had eye opening experiences (i.e. my Mom staying here for a month).

Feel free to seek me out and spend some time with me and the kids. Just a couple of hours will give you a glimpse into Sam's world and it never hurts to see how powerful Zoë's love for her brother is.