Monday, July 21, 2014
Long Term Effects
Isaac has had autism all of his life. He will always have autism. He has several wonderful characteristics but the reality is that he is severely impaired.
There was never an easy time with Isaac. I almost bled to death right after he was born. He struggled to learn how to eat and then battled through extreme colic. He cried and cried and cried for hours on end. He would occasionally forget how to eat. He did not speak words. He had to be taught and retaught and retaught.
We have battled through years of identifying the correct services to help Isaac and then figuring out how to integrate them into his life. We have hosted dozens of strangers in our house who all hoped to teach us better strategies to help Isaac. We have been running a therapy center masquerading as a home for the better part of 15 years.
We have researched and prepared for more educational meetings than I can possibly remember. We have engaged in politics with our son's future at stake. We have negotiated a schedule so complicated with therapeutic and medical appointments that we lost track of who was who and put a list of names and occupations on the refrigerator door.
We have dealt with self abusive and aggressive behaviors that I will not describe from Isaac. I love you dear ones but I am not sure you are strong enough to handle the history that we have or the reality that we live.
We live moment by moment and sometimes I wonder how we make it through the day. There are days when I hold my head in my hands and wonder what the long term effects of this life may be for Sam and me. I have heard about post traumatic stress...but I wonder what it is if you are still living it.....traumatic stress, maybe?
On the downside, there are days when one feels rather down and may worry about present circumstances (yes, I know some would say depressed and anxious but let's not go there). There are days and times that I wonder how I will make it through. My present tactic of dealing with my reality isn't exceptionally healthy so I've been told but its the one that makes the most sense. I stuff it when I can...I try to follow the Queen's advice...Keep Calm and Carry On. Its not denial of the situation. I know what's going on but I also know that panic and wallowing won't fix anything. I need to keep going because my family counts on the fact that I will. There isn't another option.
On the upside, I am more compassionate and more resilient than most. I understand the value of kindness and love and celebration. I am much more sensitive to life's beauty because I am very aware of its struggles.