This is hard to write. It would be easy were this an actual diary, the kind under lock and key for no one’s eyes but my own, and then perhaps, someday, my children’s, long after I’m gone and they find it packed away in a dusty attic. But alas, this is not that kind of diary. This is Diary. Something that has taken on a life of its own. Something in which, when I write, there’s no taking it back, deciding I didn’t mean to share it, re-sacreding it. Yeah, I made that up. The absurdity of the word itself serves to illustrate the absurdity of the idea. Once shared publicly, what was private – sacred – is no longer so and can never be again.
But I have to say this. Because I know that there are parents out there who walk this path behind me and if I don’t say this out loud, if I don’t share the pain of this particular misstep, others will do what I did. If there is a possibility that I can change it for one kid then I have to write this.
But I will not betray my child’s privacy again to do it. Once was bad enough. I can’t do it twice. So forgive me a bit of circumspection, won’t you? It’s the only defense I’ve got left.
I recently read a post called Those Pesky Life Skills That Everyone Keeps Talking About by Cara Liebowitz – a.k.a Spaz Girl on a relatively new site (that’s well worth your time) called We Are Like Your Child. In the post, Cara talked about the necessity of teaching children with disabilities basic life skills and the dangerous misperception that intelligence somehow negates the need for help in this area. Her points are well taken, and it’s clear that these are topics that need to be better addressed for far, far too many people.
In Cara’s post, she asserts that the responsibility for teaching life skills to children with disabilities lies with their schools. She expresses deep gratitude to her mom for picking up where she believes her school let her down.
For me, the responsibility to teach life skills to our children, regardless of disability, unique neurology or physiology or just plain old individual matrix of skills and challenges, is ours. While I don’t disagree that one way or the other, we, as a society, need to ensure that our children – ALL of our children, are taught the skills they need to independently manage every-day life to whatever degree they are able, within our family, I believe the job to be mine and my husband’s. But none of that is really the point of THIS post. Or perhaps it’s the entire point.
As I read Cara’s post, I was transported back to the early part of this school year. We knew we needed help at home. It started with trying and failing to help Brooke overcome her paralyzing fear of the smoke alarm in the kitchen. We couldn’t get our own daughter to be comfortable walking from one end of her own home to the other, no less sitting down at the table to eat. It was heartbreaking on so many levels, but none more than seeing our child hurting and not having the tools to make it better. So we asked – pleaded, really – for help.
And then, once there, inside our house, they asked what else we needed. And I didn’t want to say it out loud.
I didn’t want to admit that I couldn’t teach my own daughter to brush her own teeth well enough to hand over the brush. But that one I could say. It was a lot harder to say that I didn’t know how to teach her to shower herself.
They matter-of-factly broke it all down into manageable bites. A process, a chart, step-by-step visual prompts. The tools that we didn’t have thanks to a lack of emotion and objectivity we could never have.
They came into our home and taught our daughter to shower. I was grateful. And shattered.
Last week, I wrote about a discussion I’d had with a number of Autistic advocates about privacy and how it affects what people are willing to share online about their own (and their children’s) experiences. And I sat with it. And chewed on it. And internalized it. And woke up in the middle of the night wrestling with it.
On Tuesday, as I proofread Brooke’s IEP one last time before sending it on its way, my breath caught in my throat and I choked on a sob as my finger ran across the Home Services grid. I told Luau, with a sense of urgency that was long since passed its expiry, “We %$&!ed this up.”
And I spit out the months-overdue words about how the sacred has to stay sacred and the personal has to stay personal and I asked – I pleaded with him, For the love of God, Luau, isn’t Brooke’s life an open enough book as it is? Do we really need strangers in our home witnessing her most intimate moments? We owe her more than that, damn it, and yes, I know we asked her first, but really? Reeeally? What does that even mean, ‘We asked her’? We are her parents. Asking her the question implies its validity.
And then there were the details that I will not share here and Luau reminding me that everything was “very respectful” and “at a distance” and me countering that there is no respect or distance once you’ve already let them into the sanctuary of your own home. How can there be distance for heaven’s sake?
And as the words tumbled out over the tears, the solution was as clear as day and I didn’t know how I hadn’t seen it before and I was angry at both of us for looking at the clouds and missing the sky because – how? How did we miss this?
So I said to Luau, “Listen, we needed help, and that’s okay. We don’t have all the tools and we will never have all the answers. There can’t be shame in seeking help.”
I couldn’t get the words out fast enough.
“But we didn’t need someone to come and teach HER, we needed them to teach US to teach her.”
That was it. That was the answer. That was what I needed to say, to do.
“And that’s how it has to be going forward, okay? Promise me, babe. That’s how it will be going forward.”
In so many cases and in so many ways, our children grow up with their lives on display. Parents in this world in which we live – the world of Early Intervention and Home Services and specialists and doctors and therapists whom we beg, borrow and steal to get to come and help us navigate a world that we do not have the tools to navigate alone, constantly lament the constant flow of people through their homes. They see their dirty floors, they say, the piles of laundry, the unpaid bills. There’s nowhere to hide – even in our most raw and intimate moments.
But so too, they see our children and our children see them. This is the world they know – one in which their every move is analyzed, scrutinized, extinguished, replaced, redirected, reframed, reinforced.
For God’s sake, what is left that’s private?
There are times when there is no other choice. Times in which it’s impossible to manage even intimate care without help.
But from here on out, whenever possible, WE will ask to be taught to teach our girl.