11/28/2010

Wherein Lies Value? Perspective Is Everything

Over at the Autism Blogs Directory, we have over 400 blogs and websites representing a diversity of views and opinions. 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.

13 comments:

Elise said...

Not fair to make me cry so early on a Sunday morning. Beautiful words...

kathleen said...

perspective is everything...lovely as always ((()))

Kitaiska Sandwich said...

Beautifully written. This reminds me of the Lao Tzu Good Luck/Bad Luck parable, but your story is told in a way that's much more relevant to my life. Thanks for the reminder.

TherExtras said...

In my broader perspective of the meaning of the word 'pray', I think you do.

Barbara

farmwifetwo said...

I tell people I don't notice the stress any longer... yet, my Dr was right a month ago... my body does. I have genetically high blood pressure that is tripping into too high.

Which reminds us, that even though we haven't a clue what "normal" is - NLD and Autistic disorder are my dx's - that we are living with, and not for autism, that we are no longer losing sleep at night worrying about tomorrow... We are still dealing with the stress, the worries, the system, even as we tuck little boys into bed at night just like "normal" parents.

What will be, will be. All I can do is parent them the best I can.

Velvet Over Steel said...

Absolutely and true & beautiful words!!!! Your son & daughters are so very, very lucky to have you as their mother!!!

My youngest son too had all those earlier diagnosis. He was 11 and had had over a dozen peds and specialist before getting the Asperger Syndrome diagnosis. I thought at the time that if only we know what was really wrong, then he would get better and getter the education he needed. I was so wrong!! It was only the beginning!! 4 schools later and having to get divorced and move to a different state to get my son the services he needed for the education that he deserved! 5 years later.. things are much better. However we both know that nothing will change the learning disabilities, let alone the perceptions and acceptance of other people. Still so much to do for both our very, very special and amazing children... but also for the awareness, understanding and acceptance of those they meet.

Wonderful, wonderful post!!! I so needed to read this tonight. It gave me the 'fire' I needed to get ready for yet another 'IEP' on Tuesday, where I'm pretty sure they want to 'ease' him out of his education goals. Not going to happen as long as I'm alive! :-)

Blessings & Many Hugs,
Coreen

Evil Possum said...

"a `normal' child with no issues"
In all likelihood an oxymoron!

An additional thought on "independent living": from the broadest historical/ cultural perspective, it's NORMAL to have a number of adults sharing a house. It's modern America that got "weird", and the state of the economy seems to be keeping a lot of people beside the disabled out of the "dream".

KWombles said...

Thank you for your comments. :)

FW2, hope that your bp goes down soon. I'm always happy when you drop by and hope you'll comment again soon. Are you on facebook? If you are, I hope you'll consider friending.

Elise, thanks and sorry about the tears.

Kathleen, thanks. :-) And thanks for helping me keep a positive perspective and lots to laugh about.

Thank you, Kitaiska Sandwich.

Barbara, thank you for the comment and the thought. Perhaps, yes, pray is a good word, even if I expect it is heard only by my heart.

Coreen, sending positive vibes for the IEP meeting!

David, yup, probably, although most children do not have disabilities, we all have issues and challenges.

katethepoet said...

Kim, this is absolutely wonderful.

Your last lines apply to so many situations, and you've expressed it all perfectly.

I cried from 1/3 of the way through until the end ... I'm sure you know that's meant as a compliment :)

Science Mom said...

I can only hope that your words find their way to those that need them so much. You rock Wombles.

KWombles said...

Kate, thanks, I do. :-)

Science Mom, thank you. That means a lot. :-)

Eric said...

This is confusing to me since it would seem that you are saying that those that are headed down a darker path are doing so because they didn't "choose" the right perspective but then you counter this point with your illustration of how acceptance of having an autistic child and later, much stronger, his suffering of a stroke is what changed your perspective.

Wouldn't it be correct to assume that you had little choice after the stroke, that it changed? If the stroke is what brought on the change then difficult circumstances that others undergo, which you may or may not be aware of from reading other's blogs, do that for them, not allowing them to choose. After that the person's character, issues and upbringing will also play a part in how they perceive things. Not easy to alter that and not everyone has the same level of introspection.

I hope i am being clear here, this is not meant as criticism, I just believe perspective, while all important, is barely within the grasp of conscious manipulation.

KWombles said...

Eric,

We are born with innate temperaments, and there's limits to what we can do to alter those temperaments, but perspective is absolutely within our ability to alter. It may not come easy, it may be a battle at times, but how we choose to look at a situation is up to us. Otherwise, cognitive therapy would be worthless. So would any traditional form of therapy, for that matter.

Do I think most people most of the time realize that they can change their outlook and then work to do so? Perhaps not. But it is possible. And it's the entire point and one of the main differences between adaptive and maladaptive coping.

To be fair, frustrated as I got in the early days, as depressed as I got (and I did, and I got treatment), I never went down the dark roads that many of the folks at Age of Autism are on. A few steps in that direction were more than enough for me to realize change was necessary.

What altered after the stroke was the way we viewed the challenges and how they should be faced, how we defined success, and what we considered a good life for our son. Instead of working within the school system from the belief that we had to because he had to learn how to be in the world and deal with all that entailed (not something he was equipped with, mind you, but one we were trying to force), we brought him home and worked with him one-on-one. His happiness and well-being (not at the expense of his growth and development--I'm not talking about overindulgement and the creation of a spoiled brat) became more important than him being in a mainstream classroom. Appreciation for the skills he had and the person he was replaced the perspective of looking at all the skills he didn't have. And removed from the constant daily comparison of him with his non-autistic, non-intellectually impaired peers, it become possible to see him without comparing him. Most of the time we have lived in a world where he is who is and he has not been made to feel less than because of his different abilities.

I hope that clarifies. We may be wired to be more pessimistic than optimistic, but we can choose to change. The choice, though, is key, and not all do so. The situation may not change, the circumstances may not alter, but our perspective on it changes everything.