The End of a Week: Looking Back at Heartaches and Reasons to Celebrate

This has been a full week in the autism community, a rough month, really, for autistic individuals. Two mothers chose to end their children's lives, an autistic boy drowned, and an autistic man my son's age died from hyperthermia after being locked in a hot van, forgotten about by the staff in charge of his care. A lovely family whose blog I only discovered last month while looking for blogs to add to the directory lost their young daughter this week and will spend tomorrow celebrating her short life. 

It has been a heartbreaking month. And these are just the losses we know about, the ones within our community of autism and the broader disability community. Each day, families are faced with these kinds of tragedies as we live our often insular lives, protected from feeling the enormity of loss that so many people deal with on a daily basis.

Blogging, facebooking, tweeting, and other social media allow us to be a part of a larger community, to be connected to other families in similar situations, facing similar challenges. We are, in so many ways, so very blessed to be able to reach out to others through a keyboard, connect intimately with others, and in doing so find our journey a little easier, the path a little straighter, a little smoother. 

We are not alone. It is a wondrous thing. For all that the internet and these new social media are used to argue, create divides, harass, torment, and bully (and they are), they are also used to create communities whose members support and lift each other, who celebrate our victories, small and large, and who mourn with  us when we suffer inevitable losses.

It is a tremendous thing to be able to connect with people from all over the world, from so many cultures, and so many different kinds of lives, and to see the humanity within each other, to care for each other.

We make choices each and every day when we log onto the internet and cast about for information, for conversation, about how we will conduct ourselves. Some days, well, the snark has to come out. But most days, it doesn't even raise its head. Not even a little. Most of us, I honestly believe, go about our lives trying to do the best we can for our children and our families. Most of us try to make the world a little brighter in our corner of it.

Most of us don't think there's a global conspiracy to depopulate the earth and that they're doing it one young man on a hot van at a time. Most of us don't think that the senseless death of an autistic man by a staff member is anyone's fault other than the staff member's. And most of us don't sit at our computer and read these kinds of comments and think, yes, these are the comments I'll approve. Most of us don't intentionally, deliberately, set out to create sites that foster the kind of rhetoric that has left that site with its credibility in tatters. Most of us don't sic our readers on well-intentioned bloggers who write compassionate heartfelt essays about how they have learned and grown because of their interaction with disabled patients.

Most of us. And aren't we grateful for that? On any given day, I know that I can post a comment on facebook and I will have friends ready to talk, chat, laugh, support, whatever I need. I can write here or at another of my blogs, and I know that support can be found. I can go to any of my friends' blogs, read their posts, celebrate with them or offer support and empathy, whatever is needed and find the companionship and support I need.

Most of us, I think, do that. We look for support, for friendship, for community. We reach out to others because we wish to be of help. We want to make the world a better place. We don't expect easy answers. We're not looking for cures (although we'd do anything we could to make our children's lives better, easier, happier, more successful). We're not looking for pat answers. We have learned to live without certainty. We have learned to breathe, to move, to roll with what life throws at us because we have built our life rafts with each other.

And we work each day to widen our nets, to draw new friends in, to be that port in any storm, that soft and welcoming shoulder. We have been alone. We have known fear and doubt, and we know we will face it again. Some of us face it each day. But having our net, here on blogs, in forums, on twitter, on facebook, in emails, we know we'll still be upright at the end of the day. We may be upright on our knees, praying, hoping, wishing for the strength to wage the battles we must the next day, but we are not alone in this journey, and we know we can go on, one day at a time, with our friends and families beside us.

There is tremendous power in that. We have the ability to reach out and make other people's lives a little bit easier, a little better, by showing that we care about them, that we support them. We can make people smile, we can make them cry in joy at knowing others are with them. And we can receive that back tenfold. 

I am enriched by the community I have found online, made better for it, even if it means that my heart breaks all the more often when my friends are hurting. It also means my joy is increased when things go well, when a child speaks a first word, when an award is won, when a new skill learned. 

I am optimistic, despite the tragedies, because these tragedies no longer occur in a vacuum, because we hear, we listen, we support, and we work for change, real change that will make lives better.


kathleen said...

kick ass kumbaya! Thanks for being in my "net"..I know it has made my world a much happier place. :)

Roger Kulp said...

jGreat post,I couldn't have said it better myself.

The right blogs,combined with finding the right information,can even change your whole worldview about this stuff.

My latest find.

AoA,and their ilk,depend not only on keeping their readers ignorant,but play all sorts of ugly games of exclusion,that become obvios once you learn how to spot them.

Here's to kickass kumbaya.

Niksmom said...

Fabulous! And just what I needed this morning. This parenting gig can get so hard, so lonely sometimes; I'd be lost without the connections I've made and feel.

KWombles said...

Thanks, Roger. :-)

Me, too, Niksmom; those connections have enriched my life, made it so much brighter (and busier, as I wonder out on the blogs to visit!).

Emily said...

I just want to remind commenters and readers that they *can* click above to assign a "start" rating for this post.

Anonymous said...

Thank you for this post. This is what I like to see and be a part of in the autism community. More optimism, awareness and understanding. Less, blaming, hatred and vitriol.

Lyn said...

I'd rather hang out here. There's so much less vitriol here. Vitriol is a tasty word, but I can live without it, the bitterness, the crankiness, the general GRRRRRRRRRRRRR kind of thing.
Warmth is much nicer

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Attila The Mom said...

Lovely post. This has been such a horrifying week.