Those who know me are well aware that I pull no punches. I am blunt and quick to share "the truth" as I perceive it. My reality is that, for whatever reason (as my husband says, one day God has a lot of explaining to do), unless there is a miracle my son most likely will not become a self sufficient, self supporting adult. In our house we prepare for life's challenges while we pray for miracles. It is true that my son is not the child I anticipated when planning my future. No mother I've ever met asks to give birth to a child with autism or any other added challenge. Life is hard enough. We all mean it when we say we don't care if it is a boy or a girl as long as it is healthy and also when we say we'll love our child no matter what. When my son was first diagnosed with autism I didn't ask "Why Me?" After spending a decade practicing in Family Court I knew better. The question instead was "Why Not Me?" I knew that no matter the challenge life presented, somehow I would find the necessary resources to deal with it. Being a survivor is as much a part of the fiber of my being as sharing my bluntness.
My husband and I describe our son as our greatest blessing and our greatest challenge. More so than most children he currently is a riddle, wrapped in a mystery, inside an enigma. However, everyday we come closer to learning a bit more about the key necessary to unlock his potential and enable him to experience his life opportunities to the fullest extent that may be available to him. Our life may not be easy or fair, but whose life is? Each of us faces our own challenges whatever those may be. My son having autism doesn't change my truth that from conception he is the most wanted and loved child in the world to me and my husband. However, my son having autism does change the resources I need to live the life that has chosen me raising this child I didn't anticipate. One of the most important of those resources for me is to view this experience as a journey and see challenges rather than burdens and crosses to bear.
While my attitude is important, it isn't the only resource needed to help our son reach his fullest potential whatever that may be. In our family we look at our needs, assess our available resources, weigh our options and makes choices as to how we are going to use our resources to best meet our needs. Last night rather than buying new furniture we ordered couch covers. During the week we drive our 2008 Ford Focus with 154K miles on the odometer and 2 years of payments left 30 miles and 50 minutes each way through Phoenix I-10 rush hour traffic so our son can attend school in an office building shared with a colonoscopy center lacking a decent playground and other amenities even though we live a block from a shiny suburban elementary school complete with ample playing fields but lacking the program he so desperately needs. We can't move because our mortgage still is so far underwater we can't afford to sell and our school district pays our son's $36K annual tuition as long as we continue providing his transportation. I spend my days putting our son's current needs first rather than resuming my career and adding a second income to our household so that we could be saving more for our retirement and his future. Please don't misunderstand. I am not whining or complaining. Everyday I choose to do this because it is what our son needs right now. I realize how lucky we are that my husband makes enough income to support our family and that we have available resources with which to make choices. I realize how lucky we are that I have the skills to navigate the public and private education, healthcare and social service delivery systems to secure the best available resources for our son.
However, members of the US House Committee on Oversight and Government Reform and other public policymakers who decide how public resources are allocated need to understand that even with all of our luck and hard work, the currently best available resources aren't sufficient to meet our son's needs.
Because medical science has so few answers about the causes and treatments of autism and co-morbid conditions, our son continues to suffer from pain he tries to relieve by banging his head through concrete floors and walls. For 6 years we followed doctors' orders and unknowingly gave him a medication that exacerbated his headaches. We can't blame the doctors (you name the top relevant board certified pediatric specialist in AZ and we consulted them) as they did their best but were unaware of this possible side effect. Our son also suffers from serious Acid Reflex (he has deep furrows in the bottom of his esophagus) and chronic congestion; the causes of neither of which can be explained by doctors who do their best to treat the symptoms and relieve his pain.
As should be expected, our son's chronic pain further complicates every aspect of his life. Our son has verbal and motor apraxia and learning challenges that can't even be measured using current evaluations. Even though our son is bright and naturally curious, learning from conventional methods is difficult for him. He doesn't learn by group instruction and needs to be taught one on one which is labor intensive and more expensive.
We have no idea what our son's future holds. Every day he makes progress that amazes us. However, reality is that unless there is a miracle in his lifetime he will continue to need intense, expensive treatment and services during his lifetime that currently aren't available and there is no way we will be able to afford what he needs unless public resources are used to provide them. According to the CDC, 1 in 88 children, 1 in 54 boys (the rates are even higher in AZ) living in the US who were born in in 2000, the year before our son, has autism spectrum disorder.
Current medical research tells us that there is no "autism," but autisms. While there is no known cause there is evidence of both a genetic and an environmental causation. We have learned much in the past decade since our son was first diagnosed with autism, but we haven't learned enough to meet his needs or the needs of all of the other 1 in 88 who can't wait. I understand that we in the US are about to go off a fiscal cliff that could plunge us and the world economy back into a serious recession. However, I also understand that this is America where we have a penchant for tackling tough challenges and figuring it out. Now is the time for President Obama to work with the members of the US House Committee on Oversight and Government Reform and all the other public policymakers to look at our needs, assess our available resources, weigh our options and makes choices as to how we are going to use our resources to best meet our needs. We must create and implement a US Autism Policy. I really don't care if they call it a public health crisis or an epidemic. Semantics are only useful when they serve as a call to action and inspire results. We can work together to figure out if autism is caused by vaccines, genetics, burning coal or whatever else it might be.
Our son has waited a decade too long. With 1 in 88 children affected by autism, we can't wait any longer. We need to develop the necessary treatments and services NOW! This is my truth that I want the members of the US House Committee on Oversight and Government Reform and other public policymakers to understand and get to work.
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