I should probably be writing for my class, but that will happen soon. I might also write my top 10 lists of films and television from last year that my friend, Jordan, is desperately awaiting. But that, too, can wait. A few thoughts have been rattling around in my head for about a week now, and I feel compelled to get them out.
Having subscribed to and read many autism and special needs articles, blogs, and social media pages over the past six months, I am struck by their similarities, but even more so by their differences. For the most part, this community of caregivers is abundantly generous with their time and advice. I have found this to be the case locally, nationally, and within the military special needs community. Not all advice will work for all situations because autism spectrum disorder and other special needs children are, like all human beings, unique individuals who cannot be crammed into a one-size-fits all treatment plan.
I have seen a great many caregivers use their words as a way to vent publicly about the struggles of raising a child with special needs. They spout off about everything from the day-to-day personal battles at home, to the ongoing battle with schools and therapists, to their struggles navigating various local, state and federal programs meant to “help” our special kids, to the heartbreaking public moments of judgement, comment, and perceived condemnation. On my own Facebook page this year, which is as private as I can make it, I have vented about our initial forays into the world of special education and working to get our son the services he needs to be his best self. To watch our own child struggle with daily activities and interactions that come so naturally to the majority of the human race is heartbreaking. To be met with brick walls at nearly every turn as we search for what’s best for Weston and while trying to meet the steepest of learning curves after getting his diagnosis has sapped my body of energy and all but drained my mind of its sanity. To feel the stares and hear the whispers of those who witness Weston’s difficulties during some public outings is stressful and mind-numbingly frustrating.
Naturally, I want to talk about the frustration. I need to vent about it. Anger sometimes reaches a boiling point as I trip over the various hurdles each day presents me (mixed metaphors much?). I wish I could change the hearts and minds of those who cannot and especially those who do not want to understand. I wish I could cut through all the bureaucratic red tape or take all the best doctors, teachers, and therapists and somehow clone them so that they can be available to all special kids no matter their geographical location or financial situation. I wish I could read Weston’s thoughts–or better yet, I wish he could tell me what he thinks and feels so that I could help him through it.
The fact is, however, I cannot do all of those things. I cannot snap my fingers and make these hurdles and brick walls disappear before my very eyes. I simply cannot. I am but one person; I am but one mom. The world can no more bend to my will than it can to any other human being’s. So what can I do?
I have given this considerable thought and, as I see it, the most important thing I can control is my own attitude and approach. I can control how I respond to brick walls and the injustices. I can choose to face those ignorant of ASD or of our situation with kindness and compassion. I can make the decision not to assume the worst of every person who stares or whispers while glancing in our direction. I can observe my son and respond to him lovingly, compassionately, and patiently. I can mindfully understand that he is struggling just as much to communicate with me as I am to help him. I can “kill ’em with kindness,” those bureaucrats, therapists, doctors, and others who seem unwilling or incapable of helping the way that we need or the way we want them to help. I can knock on doors, crawl through windows and duck under the really tall hurdles to get the answers to our questions and find the treatments my son needs and deserves. I can choose to never, ever give up hope on him, on those who are there to try to help us, or on myself.
I will fail sometimes. I will get angry. I will probably get a little snarky and a lot sarcastic when things are particularly trying. There will be really frustrating moments where I lose my patience with someone because, let’s face it, we all have our limits. We are all human. I know it is exceedingly difficult for any human being to be a beacon of sweetness and light at every moment of the day and in every harrowing situation. But I also know this: we are only about seven months into it, and if I move forward with a pessimistic outlook as we walk farther along this scary and ever unfolding journey, I will be of no help to anyone. I will not help myself. I will not help my husband or my youngest child. I will not help those who are genuinely trying to help us. And most importantly, I will not help Weston. That is something I cannot live with.
There’s a quote from Gandhi that has never resonated with me before as much as it does now:
Be the change you wish to see in the world.
Too often, I think we pull out a famous quote and fail to really ruminate on the meaning of the words. As I have battled lupus since the age of fifteen, I have faced horrors, especially as a teenager. I have gained friends, lost friends, and had people look at me with pity. I have been judged, insulted, and made to feel like my disability (if that’s what you want to call it) is not as real as others’ because it is not usually visible. Now Weston, my courageous, charismatic, intelligent, funny child, has an invisible disability that will make him see the world with a uniqueness that will challenge him at every turn. He will be judged. He will probably be insulted. And he will have people look upon him with pity. I cannot magically make these obstacles and heartaches disappear from his future. What I can do, however, is help instill in him (and in his brother) an optimism, an outlook that will allow him to face each day bravely with determination, joy, and hope. I can model for him the type of person I wish we could all be and hope that maybe, by example, my actions and my choices will make a difference. Maybe someone will see me or one of the boys handle some situation with a little more grace and compassion and face their next challenge with the same.
Maybe I can change the world simply by changing myself. Or perhaps that’s just a terribly narcissistic statement, I’m being horribly naive, and I should just shut up and go on about my day. Whatever the case, it’s a nice thought and one with which I will continue. I will attempt to “be the change.”
I know I will sometimes lose the battle. But as long as I keep moving forward and try harder next time, I cannot lose the war. (I realize that metaphor sounds terribly combative when I’m trying to be all sweetness and light, but I hope you get my meaning.)
Blessings to you all.