Autism and the Structure of Daily Life

Autism, wow, it is hard but it is probably the most beautiful thing I have ever known. Most people cannot understand how difficult the structure is day in and day out. Everyday is the same thing, everything is the same time. You would think that would make life easy, but any time something is off schedule, it can be a mess.

I couldn’t imagine life without the little nuances that Autism brings into our home. The sounds, the compulsive laughing, the almost unrecognizable strings of words that combine to form a language only our family knows. It is all just part of life now. I especially appreciate the fact that my boy has to be tucked in at 8pm every night by me. He throws his arms around me, buries his head in my chest and tells me “what percent good I was today”, how much he “can’t wait to see me tomorrow” or tells me I am “eagle soap”. He has a thing for Angry Birds, it is classic.

I watch and listen how people react to Autism and sometimes I wish I could let them spend just one day in our family. They would see the truth about what Autism really is and how it affects every second of every day. They would also see the beauty of these kids and how being different gives them this glow you can’t explain. They are literal. They tell you your faults but accept you unconditionally. It really is a surreal experience.

Many people take for granted something as small as taking kids out to a restaurant or the grocery store. You are always on guard. You are very much like Matt Damon in The Bourne Identity. You notice every possible thing in the general area that could be a problem or a safety hazard. Sometimes, it is all you think about. It is hard to enjoy the time with family or friends because that guard is always up.

Wonderful people, like my wife, never get the credit they deserve. The sacrifices she makes daily are more than what most people have to do in a lifetime. She doesn’t get a break, we can’t take vacations (without a LOT of effort) and even when we do, it is never about her. She is the most amazing person and most people never really understand why. Autism has become her job. She didn’t ask for it but she kicks it’s ass.

We have our ups and downs. With Autism, it moves in cycles. You will have months of normalcy, or normal for us :), and then like a hurricane, periods of time where you literally fall asleep every night at 8:30. We have been blessed that we don’t have to deal with some of the issues that other parents of autistic kids do. I’ve spoken to some and it is literally heart-breaking. It is the truth, there is always someone who has it worse than you. I live my life everyday, always keeping that perspective.

It is all about love. Our whole family embraces Autism. We keep going, doing what we can to make each day just a little bit better than the last.