Over at the Autism Blogs Directory, we have over 400 blogs and websites representing a diversity of views and opinions on autism and what it means to the individuals who have it and the family members who must cope with the challenges of raising autistic children. We have parents and autistic individuals who are firmly convinced that vaccines cause autism. We have staunchly pro-science bloggers. We have folks who believe in god, that everything happens for a reason, and that autistic individuals are sent by god to teach us; we also have atheists, agnostics, and lukewarm Baptists, I'm sure. We have parents who are deep into biomed, parents who medicate, parents who don't, and all the ranges in between. We have parents who appear to be mired in darker places and parents who choose to focus on the more positive aspects of their lives.
In my own personal pursuits and my graduate course work in psychology, I have had one overarching interest: adaptive coping, which has twinned out to two domains: what traits predict adaptive coping and well-being in chronic pain patients and what traits predict adaptive coping for families dealing with disabilities and adversity.
I try to read as many of the blogs on the directory as possible, to offer comments as time permits, and to be supportive where I can. That often means I read folks with whom I may differ significantly on perspective. I think that's important; if we only read people we agree with, we remove the chance to learn and grow, to find new tools with which to connect with the world and those we interact with. I don't do this to go around and feel like I'm superior to others, but to chart the journeys we are all on and how our paths differ.
Sometimes the blogs I read shatter my heart at the things some families endure; I don't pray, but I take the time to wish that if the accidental cosmos cares, if it is possible, that my concern and my caring for these families will ease their journey. I am humbled by the difficult terrain far too many families must traverse. Often times, though, even as my heart shatters for their losses, I am amazed by the grace they demonstrate as they walk the rocky path, that they continue to move forward. Reading their blogs becomes a testament of my respect for them, my desire to honor them by walking a ways with them.
Sometimes, though, my heart shatters for other reasons. When I see parents who are on difficult journeys who are coping maladaptively and making their journeys harder than they need to be. And I wish that I could ease that. Reading their blogs remind me that while perspective is a choice, most people are not aware that it is. I walk alongside their journeys, hurting for them and wishing that virtual hugs and support would be enough to break that pattern of maladaptive coping.
Other times, I run across blogs where perhaps it's just a temporary blip, a need to vent, or even a differing in meaning of words, and I take the time to comment in more detail.
When my oldest was five and he'd already been through diagnoses of ODD, ADHD, bipolar, and PDD (none of which were given with an actual assessment or battery of tests but rather proclaimed on high by psychiatrists after short appointments where they simply talked to me and watched the boy climb all over me and pound on me), Rick and I were told he'd never live independently and the best we could hope for was a group home. After two years of fighting for a real diagnosis and meaningful help, we got ritalin, clonodine, and zoloft, and later the zoloft replaced with risperdal. It took another three years to get good assessments done and a thorough evaluation and the autism diagnosis firmly in place and accepted. I suppose one could say they were grim times, to borrow an adjective from a blogger I read yesterday. My son's stroke at age nine moved into terrifying territory, though, and we became unfailingly grateful to have him, period, so that our perspective permanently altered.
I don't know what it is to have a "normal' child with no issues, so I cannot speak to how that impacts such children to be raised with siblings with disabilities, but I think, based on my experience as a sister to a brother with mental health issues and disabilities caused by a stroke, that this is a matter of perspective again.
I pondered the idea of perspective, of value, of the future yesterday, thinking of all the posts I've read in the last two years that have saddened me, of the difference that perspective could make, and I responded on that blog thusly:
I have three on the spectrum; over the years and the ups and downs, I have learned that the future is not writ; it does not have to be grim, regardless of the level of independence and functioning achieved. The fact that they have each other is a source of hope because they will never be alone and will always accept each other wholly and completely.
My bright boy turns 21 next month. No, he's not going to live on his own independently; he's going to live with his dad and me indefinitely, but this does not have to be a grim outcome. No, he's not going to work, most likely, but this, too, is not a grim outcome. He volunteers one morning a week at the animal shelter, and he attends the day center for the disabled three days a week. It, too, is not grim. He has a good life, one lived at his capability, one where he is loved and cared for and able to contribute to the degree he is possible. And he is close to his sisters, who understand him completely because they are also on the spectrum but without the accompanying intellectual disability. Perspective matters. If all we value is the idea of independence, then anything short of that can be seen as grim; however, normal functioning doesn't guarantee happy endings. One of my brothers, who was bright and had every opportunity, every chance at a successful life, threw it all away with bad life style choices culminating in a stroke and disability (some chemicals really don't mix).
I don't know what the future holds for my three. Will it be easy? No, probably not (who gets an easy life?), but they have each other, and they have us. And it is not grim, no matter what the future holds because we value different things: are they happy, are they of service? :-)
The future is unwrit and precarious for us all, no matter whether we are on the spectrum or not, and how we see the future is up to us.
I know intimately the lump that exists in one's throat when contemplating the future for our children. I endured the heartbreak of getting guardianship of my son when he turned 18 and we admitted that he would not achieve all that parents hope for their children. I suffered heartache as my students and my boy's ages overlapped, until enough time elapsed and he became older than my freshman, and it became a pain lived with, worn in, comfortable, the way things were. I will not deny that parenting special needs children can be heartbreaking. It is. It hurts so severely, so deeply, that the pain is physical, overt, and overwhelming. That is a reality that should not be dismissed, swept under the carpet, or ignored.
It should not be where all the focus is, though, because it is not even half the story. Because of that ache, that pain, I have known transcendent joys. My children shine brightly and I am overwhelmed by the love that pulses in tandem with my heart beat that I have for them. I feel fiercely, intensely, completely, and I do so because of them.
My son fought his way back from hemiplegia, from loss of speech, from loss of bladder and bowel control. He fought his way back while my husband and I and his dedicated speech, PT, and OT therapists worked with him to regain the ability to talk, walk, write, and all the other skills that had been so hardwon in the first place, all while we waited in worry that the blood clotting disorder that appeared to have caused the stroke in the first place lurked in the shadows, waiting to strike again. It lurks there, still, an ever-present reality that in the blink of an eye, lives change forever. And so I cannot, will not, allow it the ultimate victory over us by letting it take our perspective of the present and the future away from us.
The stroke and the blood clotting disorder changed our perspective permanently and made us rethink wherein the value of a life lays. If, if, if one can die suddenly and without warning, where does one focus attention and perspective? How do you parent such a child? We decided several things over those initial months. One: he would not be subjected to a school system ill-equipped to keep him safe. We would not let him be bullied or harmed, nor let his psyche suffer from such abuses. Two: if our time with him could be so short, then we would work at giving him a life where he knew he was valued, where all eyes on him would reflect back that innate, inherent value. And three: we would teach him that meaning exists, that a life well lived is to be found in being of service, however and wherever that service might lay.
Perspective is, indeed, everything. As time passed (it's been eleven and a half years since his stroke), fear loosened its grip; we got used to this potentiality living over our shoulders, especially since his blood clotting disorder was inherited from his father. I got used to it, this twin fear for both husband and son, breathed it in and out, still do, each day, that it no longer robs me of breath. I can write with absolute conviction that the future is not writ, not for them, not for me, not for any of us. If the future can be taken so abruptly, changed so unequivocally, then our perspective now is the key, is what matters more, what determines how we handle the present, how we prepare ourselves for the future, whatever it may bring.
I accept the heartache that comes with loving others. I choose to breathe through it so that I can focus on the joy, the blessings, that come from having walked through the darkest nights and on into the dawn, knowing that I will walk through darker nights still.
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