I have a LOT to tell you. My Draft box is littered with half-finished posts and tentatively titled reminders. Some are stories to share and some are rants to rave.
I want to tell you about words – specifically the ones that I’ve found stuck smack in my craw this week (hint – they rhyme with bifted and balented).
I want to tell you how desperately I wish that the DSM could just individually label all of the myriad disorders (and dramatically different levels of impairment) that currently fall under the three word diagnostic umbrella of Autism Spectrum Disorders. I want to tell you that since they don’t, this community HAS to figure out how to share the umbrella without either dismissing those who are less disabled by the disorder or God-forbid, ignoring the exigency of addressing the needs of those who are most severely affected.
I want to quote my friend, Judith and tell you that human suffering is not a competitive sport. That when we work TOGETHER, we can help one another. That we have too much heavy lifting to do (both in our own homes and as a community) to spend our time drowning in negative energy.
I want to tell you that I’m sick and tired of the sniping and name calling and discord among our ranks. That I’m tired of hearing from politicians and others who can actually HELP US that they are confused about what we want from them or to whom they should be listening.
I want to tell you about Brooke’s quest for Periwinkle, how I finally gave in and ordered a new one and then how she insisted on checking the mailbox at the moment that I hit ‘enter’ on the computer screen.
I want to tell you that one in eighty-eight military children has autism and that our level of care for them is often nothing short of disgraceful. I want to ask you to support an organization that is trying hard to rectify that and to get those kids and their families the support that they need.
I want to tell you about our conversation in the car on Friday – how Brooke asked me where Staples was and then told me that she needs to go there ‘when she’s nine.’
I want to tell you about Katie’s play yesterday – how I sat in the dark with tears streaming down my cheeks because Brooke loved it, but simply couldn’t handle it in a way that I thought was acceptable and how Luau finally had to take her out in tears. I want to tell you that life with autism so often feels like a high wire act – balancing the need for reasonable public decorum and respect for those around us with a desperate desire to let my kid be who she is and enjoy and experience the world on HER terms. I want to tell you that sometimes I feel like I can’t step on that flippin’ wire even ONE MORE TIME.
I’d be telling you all of that – or at least some of that – today. But you see yesterday, I found out that my friend, Kim Stagliano’s daughter had been (allegedly) repeatedly and apparently systematically abused by the bus driver on her Special Needs bus.
The story is here.
This makes me nauseous. It is one of our community’s greatest fears come to pass.
HOW DO WE PROTECT OUR PRECIOUS CHILDREN FROM MONSTERS WHO WOULD HURT THEM SIMPLY BECAUSE THEY CAN?
As you may know, Kim is a leader in the vaccine crusade. She is an original autism warrior and the managing editor of the activist site, Age of Autism.
I don’t care if you believe that vaccines are the devil incarnate or if you’ve got a shrine to Paul Offit in your bedroom. I couldn’t care less if you think that the autism epidemic is entirely man-made or if you are convinced that autism is as genetic as hair color. I beg you to stand up and support Kim, her husband, Mark and their beautiful girls. Let them know that they are not alone as they face the unthinkable. Let them know that when you wake one Mama Bear, she comes with an army behind her.
Kim’s story is on Huffington Post. If enough of us read it (and comment on it!), we’ll get that damned thing to the front page. In so doing, we’ll shine a light on the desperate need to safeguard these vulnerable kids. We’ll make a public statement that we WILL NOT ABIDE by the abuse of our precious babies – whether our babies are two or forty-two. We will declare this atrocity quite simply INTOLERABLE.
The rest will wait. I’ll get back to the stories and rants and raves another day. For today, PLEASE – stand up, stand together, be heard.
Kim’s daughter deserves better. ALL of our children do.