Accountability is a tough thing. It usually goes two ways. Either you have trouble holding yourself accountable or you accept too much accountability. How much accountability a person will accept into their life is actually one of the biggest driving forces in society.
When something goes wrong, who is to blame? Lawsuits, divorces, reality TV shows, even the criminal system now all evolve and revolve around this question.
When something goes wrong, who has to try to fix it? Government, doctors, parents, employers, and businesses are all scrambling to either cover their asses or cover their losses.
There is so much blood in the water with this issue that a reasonable and well-thought out response isn’t even possible anymore. Either no accountability is accepted and the course of action is to slam the door shut on any further discussion, or complete accountability is accepted and the course of action is to cash out in a serious way.
The shut-out triggers our sense of moral injustice and society rallies behind the underdog until the maximum reparations have been paid. The overly responsive cash-out triggers our own personal desire for a quick launch into “Easy Street.”
This is common in the home as well. If you talk to one person in a fight or divorce, you will believe they are the only victim. If you talk to the other, they are the only victim. To admit fault is to relinquish power to the opposing team. To lose control over the relationship. To admit that maybe you aren’t as equipped or infallible as you want everyone to believe you are.
Let’s face it, most of us are teetering on a very fine line of control over our lives. We don’t feel like we can stop the house of cards from collapsing if our aces are taken away. In our minds, smoke and ruin will be the end result if we let go of just one of those loose ends we are clinging to. We are so busy trying not to fail that we never even consider that maybe we could hold onto the other strings better if there weren’t so many.
When I started apologizing to my husband for the moods swings I have been struggling with over the past couple of years, not only was I able to better recognize when they were occurring, but my husband could start coming to terms with the fact that I wasn’t really mad at him. I was just angry because of the grief cycle having an autistic child causes. By accepting accountability for my actions, I also gave myself the freedom to let go of my illusions of self-justification and to start learning how to more appropriately express all of my internal grief.
Because of Tyler’s autism, instead of panicking and feeling judgement over every aspect of my children’s development, I have had to accept accountability that I cannot do this on my own. He needs doctors that are trained in the physiology behind autism, therapists that know which type of tongue exercises to emphasize to make the actual physical act of talking easier for Tyler, teachers who are trained in alternate teaching styles and how to respond to emotional and sensory overload in a constructive way, and lots and lots of people who have been where we are.
It is frustrating that I can take the difficult journey of accepting accountability over the fact that, as Tyler’s mother, I am still not enough, but I am standing in that place, next to my collapsing house of cards, and my calls for help echo in an empty room as the last cards settle.
Where we live, it is extremely difficult to find qualified professionals in the field of medicine or therapy for autism disorders. It is hard to find schools equipped for the special needs of autism. When you do, the waiting lists are long, and I mean looooooong.
If you do get in, that’s it. If you disagree with how a therapist or doctor is treating your child. Tough. You don’t get to pull another name out of the hat. If they move, quit, change jobs…you get to start over, from the beginning and your child is the one who suffers. If there is no progress in therapy or medical results, there is a real danger of someone cutting their losses and dropping your case instead of risking a failure. We have personally experienced every one of these scenarios.
Autism is for life. It is hard to motivate people to work with and care for something that may improve but will never be resolved. Some days you will succeed but there will also be days that you fail.
The result is an epidemic with no response.
Who can afford to adopt accountability for something that won’t guarantee success? What will happen when you fail? There is no fast track to “Easy Street” here and because of that, what a lot of families end up with is smoke and ruin. So how do you motivate a young generation of college-aged youths to choose disability specialties as a career? How to do you convince an overworked therapist to not give up on your child? How do you convince schools to fund special programs, facilities, and staff to keep autistic children in school when they cannot afford the staff they have now? How do you make the insurance companies change their policies when they can get away with doing nothing?
Right now, 1 in 54 boys and 1 in 252 girls in your neighborhoods, schools, churches, and doctor’s offices are being diagnosed with autism. Right now they are getting the door slammed in their faces. They are being shut out of facilities and schools and programs. These children that are struggling to survive in a world that doesn’t understand them and to survive in bodies that they have difficulty controlling.
I don’t care if you think these children are awkward, socially embarrassing, or a lost cause. 1 in 54 boys and 1 in 252 girls is enough. It is enough for us to do something. To stand up and say that this isn’t an anomaly. These children and adults are a significant part of our society. They are an important part of our society. In a culture of innovation and artistic achievement, these individuals are contenders.
I do not want a fast track to “Easy Street.” Tyler’s autism is not my ticket to paradise. I want what all mothers want. I want Tyler to thrive, and succeed, and laugh, and learn, and improve, and have true friends.
If we can fight for animal rights. If we can get wheelchair ramps placed in all major buildings. If we can watch Sesame Street in multiple languages. If we can hug trees. If we can do all of this, we are capable. We are a society that stands up for injustice and for the underdog.
Stand up with me. This isn’t right. This isn’t good enough. Not for our children. Not for any of us.
Make a donation to Autism Speaks at http://www.walknowforautismspeaks.org/arkansas/rflinchum.
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From my heart,
(c) Rachel Flinchum 7/11/2013