Further Comments on Grief

For anyone who has lost anyone significant to them, they know the stages of grief and how they went through them. I ponder whether there are those who think I am likely melodramatic when I discuss that Zach's autism had us go through this process. All I can say is that we certainly did, and it was very real and intense. Having lost people I love, I know that Zach's diagnosis was as intense as those experiences, perhaps not the same as actually losing a child, but painful to a level of pain I had not experienced before.

The problem with this acceptance/grief/autism thing is this: what is too much to hope for? when do you give up trying? You see, unlike death, there is no finality to this, it is endless waves; there is no closure.

Interacting with people these past few years I have come to be aware of the fact that there is another way to classify people: there is gender, race, nationality, religion - but the one I realized that I am more aware of currently is those who have experienced grief and those who have not. When someone doesn't connect with me I realize they have likely experienced little in the way of grief in their life, it has nothing to do with if they have a child on the spectrum or not.

A friend who lost a child was listening to the radio when he heard about a fiction book about a teenager with autism, Unlocked. He sent me a note in facebook about the book. It was a simple gesture from someone who probably realizes more than anyone that reaching out to people can mean a lot when you are in grief; reaching out in genuine and sincere way, not a generic "let me know what I can do to help" that is vague and rarely acted upon. These types of gestures are not genuine and I have offered them in my life, although I have learned to no longer do this.

Fact (at least for me): You can enjoy life, love and appreciate your children, have friends, a nice home and still be struggling in life, especially because of disability and all it ensues. Grief ebbs and weaves. The engineer in me thinks of a sine curve with various forcing functions and filters attenuating the depths and heights of each "wave", all of it varying over time; some of it with time as its only dependent variable. Regarding autism, I have found that grief isn't a one time thing. It comes in waves.

I don't see any end in sight for these struggles. You see, just when you start seeing progression and you begin to get hopeful, something will smack you with reality, say seeing an NT child where you get to reference what normal development should be. Or perhaps there is progress in one area and regression in another. Regression - the terribly nasty word feared by so many of us parents with children on the spectrum, and with good reason. Imagine having a child develop symptoms at age 4 - they were developing typically and boom - eye contact or language is gone.

And then there is behavior - when a child develops new skills, sometimes there is new behavior because they lack the emotional maturity to handle the new skill and you realize you have the competency of a 4 year old with the maturity of a 2 year old. uugghhh For typical children, these things usually coincide to some degree.

When you are met with the reality of the disability, whether it be through the limitations of understanding in the throes of accomplishments, or the realization that this is not a temporary thing, or the cruel ways of some people in this world, a wave a grief will come and slap you down.

I recall when I first realized Zach had autism - prior to diagnosis mind you. I woke up the next morning thinking I was just having a nightmare. Then it hit me, it wasn't a nightmare, it was my life; something was "wrong" with my boy. I know that it is fairly common though after reading and discussing with other parents. I don't experience that anymore. But I do get these moments, you see I live in the land of hope - I feel that he will be conversational one day, that he will do OK in school, that he will have friends, that we will laugh together as we share our lives. then something happens and I think that this might never be, that I am deluding myself, and it cuts like a knife. Grief strikes again.

I have never been one to be described as much more than a skeptic. But I know I would never forgive myself, nor could I be happy in this life, if I did not continue on to try reach him, to try things that have no guarantees. So I have to run contrary to my own self. You see if there is one thing I do know, if you want to touch the sky, you have to reach for the stars.