People really don't know how best to respond when they meet us as a family. Isaac never tries to hide his...nonconformity. He is exceptionally true to himself which is one of the few positives about his autism.The extent of his challenges is quickly obvious to passersby. Most are somewhat uncomfortable with special needs. Its ok to feel that discomfort. Its a basic and evolutionary feature of who we are as humans. We are genetically designed to look out for what is different. Different in the wild often meant dangerous. We scan, we notice, we evaluate. People used to shy away from this unpleasant social situation by hiding their relatives with special needs. Society is just now seeing families out and about who care for someone with special physical or intellectual challenges. Good people are often overcome. They try to process what they see. They approach the family and say to the caregiver, "I don't know how you do it."
To be clear, I am not a superhero. I never was a super mom. I gave up on the pursuit of perfection a very long time ago. I am oh so very very very human with so many flaws.
Truth is, I don't know how I do it. I'm not sure of what it is that I am doing. I am maintaining I guess. I am treading water.
Want to know a secret? I don't like having a child with autism. I love my son, but I do not like his autism. Not at all. There are those who embrace their martyrdom. Not me. Caring for Isaac and navigating the murky whirly enveloping waters of "service" entities is the most difficult thing I have ever done or could imagine doing. I don't like it. Not one bit.
Another secret...I am not strong except in the strength that comes from weakness. I'm not sure if the quality I possess is strength or just stubbornness. Stubbornness makes much more sense. I endure. Sometimes, moment by moment but I endure. I endure because of the commitment I have to my children and to my husband. Not enduring, not persevering is not an option.
Still, there have been several natural consequences to parenting Isaac. I like thinking of natural consequences. They are the logical result of given circumstances. They are not good or bad and are not drawn from heaven or hell...they merely exist because of the actions that led up to them.
Some of the more negative first (so that we can end with the positive):
I have been meted a fair share of sorrow. I grieve the child that didn't come. I grieve the futures and story lines that could have been but aren't. I also grieve the person that I am not. Its funny. The world sees my strength but I, mistress of my most secret thoughts, am inundated by my fears and failings. I am not the person I would have chosen to parent Isaac, but it wasn't my choice. I grieve the present that sometimes surrounds me. The smell of urine, the look of aggression in my son's eyes, the sound of escalation. They can form a very dark cloud that threatens to overcome me. My spirit stamps its foot. I don't like it. I have cried. Worse yet, I have been drawn to a place of despair and have found that safe spot alone in my bed that I did not want to leave. I have come close to giving up.
I have been showered by anxieties. Is he going to hurt himself or someone else? Does this professional know what they are talking about? Why are they not helping? We have dealt with incredible levels of incompentencies. Agency heads have seated themselves on my sofa and taken attendance. I stared dumbfounded as I have been asked in my own living room across the table from a "professional" if I was present. Really? And you are the one I have called in to help? Really? At that time, Isaac was aggressing, eating non edible things (walls, mattresses, and much worse), attempting to carry large appliances up the stairs and breaking into neighbors homes to watch their televisions which were somehow different from ours....and this supposed helper wants to know (as they look right at me) if I am present as we are meeting in my living room. Oh, God in Heaven please have mercy. That is the most comic of the anxiety provoking situations we have dealt with. Others have dealt with everything from bruises (hand shaped), bites and scratches received at school, to truancy meetings when Isaac had been to the doctor too often (each with excuses from the doctor and some visits at the request/order of an over involved school nurse), to the questioning of my parenting skills by those who thought they could do it better than me. There are fifteen years worth of stories. Too, too many for one post.
There are positive natural consequences too. They are born out of the trials of the negative consequences.
I am grateful. I see and notice kindness and progression and hope. I am able to encourage in a more meaningful way. I can offer hope because I know the darkness.
I am persnickety. Southern word. It means stubborn and willful and crafty and mischievous all rolled into one. I persevere and I am persnickety...two different traits that parenting Isaac have grown in me. These two traits together are what I think people mistake for strength. Perhaps they are unfamiliar with the term persnickety. I am not so much strong as just enduring and I will get my way...eventually. I want what my son needs and I am persnickety enough to get it. That obstinate determination has been born of so many who have endeavored to placate and patronize my son's needs and my own intelligence and instinct. We have endured so much that I am truly frightened of very little. I grieve the situations we are continually pitted against but I will never just give up. I am too persnickety to give anyone the satisfaction of putting my son or me into a conformist box.
I am grateful to be able to see beauty and to know gratitude and grace. I relish my persnickety-ness and spirit. Both my gratitude and my persnickety spirit continue to grow under the weight of the sadness that will not be fully lifted and the pelting rain of the anxiety provoking incompetence that will not go away. The lack of reprieve is not fully bad. The natural responses to the hardships of life prove my sanity. If I were never sad nor worried in the circumstances of caring for Isaac, I would be delusional. I see the reality. I respond with the sanity of grief and worry. I daily attempt to use that grief and worry to procure enough strength to persevere and to grow my persnickety spirit.
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