Last night, a reader wrote the following on Diary’s Facebook page:
I am recently new to following you and you are so much like myself. I have to ask , how long did it take for you to face things straight on? I know that we all try to not face facts for awhile and than one day it hits you and its like a light of fire that comes within to just defeat the fight and prove it to be wrong, to fight for our child with everything we got. Your posts have helped on days I thought that it was too hard. Thank you.
In trying to come up with a response, I searched my memory. I thought about denial. I thought about what it meant to come to terms with Brooke’s challenges. I thought about the struggle between me and Luau. I thought of him resisting the idea that we needed help. I thought of him dismissing my concerns, writing them off to what he called an unfair comparison to Katie, who was ludicrously precocious, “So this must just be what normal looks like,” he’d said. I remember screaming inside my head, “This is NOT what normal looks like,” and then screaming some more at myself for not fighting hard enough to be heard.
And then I remember thinking, who wants to fight to be heard when what we are saying feels like, “There’s something WRONG with my child”? Because saying that, especially when someone else is saying, “No, there’s not,” makes a mockery of our most visceral instincts, doesn’t it? To protect and defend our babies against anyone who would dare say they are anything less than perfect. And isn’t saying, “Something doesn’t feel right?” the same as saying “My child isn’t perfect.”? (No, but I didn’t know that yet.) To say that we need help feels tantamount to saying that we don’t know how to parent our babies. That we are failing at the one job that should be so natural.
And because it’s so easy to refocus the camera as we look back on our own history, as the tape rewound, all I saw was Luau. I saw him NOT telling the pediatrician everything that I’d asked him to say. I saw my anger and his simmering, then boiling, then overwhelming guilt for years and years afterward.
This is what I wrote back, thinking that the best I could do was relate her question to Luau’s experience.
@j, it’s a process for everyone. All that matters is where we end up – loving, supporting, and respecting our kids and honoring ourselves and our needs in the process. xo
And then while I slept, a new reader left a comment on an old post. And after reading her beautiful and generous comment this morning, I was compelled to read the post itself. And when I did, I remembered. I remembered my own denial. I remembered wanting to scream, “When I’d said we needed help, I didn’t mean my kid had AUTISM for God’s sake.” I remembered asking the doctor who first uttered the word, “How many kids do you see who you DON’T diagnose with autism?”
I remembered my insistence that everyone around us had clearly lost their minds because, hello? This is my kid. She can’t be autistic.
And I thought of my friend, Carrie, who insists there are no accidents. And I smiled, because for years now the universe has been conspiring with her to make me believe she’s right.
This was the post.
At brunch with family, October, 2005
I find that many of my friends remember the specific date upon which their child was diagnosed with autism. Many dread its anniversary, girding themselves for the PTSD that, to them, feels inevitable.
I often hear those same parents refer to that day as D Day. Or The Day That Changed Everything. And every time I hear it, I bite my tongue. Because I remember.
I remember the cold, industrial tiles of the bathroom floor. I remember heaving over the porcelain toilet, holding tight to its sides to keep myself from – from what? From being swallowed whole by my anger – at Luau, at myself – and my grief – for my girl – and my abject terror – because I didn’t yet know that in years to come when I heard people refer to that day as The Day That Changed Everything, I would have the same thought each and every time.
What about your child?
Because I know now that mine was – and is – exactly the same.
She was – thank God – the same delicious, beautiful, creative, funny, generous, loving, quick-as-a-whip brilliant, and yes, torturously challenged little girl the moment after her diagnosis as she was the moment before.
Nothing – absolutely nothing – about her changed that day.
It wasn’t until years later when Brooke’s initial diagnosis was being changed from Autistic Disorder (also commonly called Classic Autism) to PDD-NOS that our beloved neuropsych, Dr Dreamy would look at me and say, ‘I’m a little surprised that you don’t seem particularly moved by the change in diagnosis. Many parents, whether appropriately or not, tend to think of PDD-NOS as a ‘downgrade’ from Autistic Disorder.”
And it would be all those years later that I would hear myself say by way of a response, “I don’t really give a crap what you call it, Dreamy. Call it Henry for all I care. I’m still going to call my precious girl Brooke when we go home tonight.”
But I’d be lying if I said that nothing changes on the day that you are told that your child has autism. Things DO change. And you want to know what changes most profoundly? You.
You change because on that day, you are handed a key.
A key to understanding, compassion, community (for you and more importantly, for your child). A key to becoming a better parent, a better friend, a better citizen – a better person.
And, most important in that moment, you are handed the key to the tool box containing the tools you will need to help your child.
Years ago, when I was still walking around in the shocking pink haze of denial, I remember saying something particularly absurd to a friend. Actually, I think I said it to a lot of friends, because my version of denial – the shocking pink hazy kind – requires lots and lots of loud, enthusiastic repetition.
But one friend in particular brought it up to me recently. She even told me that her husband had asked her at the time, “Um, do you think we should tell her?” and that she had said, “No, she needs to get there on her own.” She knew me well enough to know that I would.
What I had said was something along the lines of the following:
“You know, it’s just the darndest thing. You see, we got this totally outlandish preliminary diagnosis of autism. Gawd, that woman was an ass. I mean, it couldn’t be any more obvious that my kiddo does NOT have autism.”
I’m pretty sure this was the point at which I rolled my eyes like a teenager telling her friends that she can’t go to Key West because her mom is making her spend spring break with her grandparents. Can you Uh-Maj-In?
“But,” I went on, bright and sharp and chipper in my happy little pink bubble, ‘they DID give us some strategies that are used to teach people who DO have autism (read – anyone but my kid who clearly doesn’t have autism. Oh, and don’t mind her stimming over there in the corner, she’s just, well, ya know, obsessively looking for spider webs cause that’s what she does everywhere we go and I have no idea what the hell to do about it or how to even get her to look up when I call her name and Oh My God, I feel so %@#&ing helpless and I don’t know what this is; I just know that isn’t the way that it’s supposed to be and we’re both drowning) and man, those strategies they gave us are WORKING like nobody’s business!
So, to recap: Not touching the word with a ten foot pole, but Golly Gee Whiz, I sure am happy to have found the key to the tool box.
Nearly a year later when we finally managed to get in to Children’s Hospital for the ‘second opinion’ I had already accepted what I now knew was true.
If you’ve gotten to the point of having your child (or yourself) evaluated, there’s a reason. You might not be willing to face what that reason might be yet, but it’s there. Mine sure was, stimming softly in the corner, searching for cobwebs.
Autism is a word. And a word does not – can not – define nor predetermine a life, nor should anyone ever give it the power to limit one.
So when people say that on the day that they received their child’s diagnosis ‘everything changed,’ I say, “God I hope not.”
If we are parenting our children – any children – from a place of respect, over time our dreams for them will evolve as we find out who they are.
The father who wants nothing more for his infant son than to be a star quarterback might just find himself converting the attic into an art studio for the teenager who can’t throw a ball to save his life but paints like Monet. The mother who dreams of picking out China with a daughter-in-law may just find herself planning a wedding for her son and soon to be son-in-law. The mother who assumes her daughter will follow in her footsteps and attend her ivy covered alma mater may just find herself visiting her girl in her tiny flat in Paris where she’s chasing her passion for French cooking. Dreams evolve. They must.
But please – I’m begging you – don’t let your dreams for your children change the instant you hear the words, “Your child has autism.”
Let them evolve as you find out if he’s a quarterback, a painter, a poet, an inventor or a chemical engineer.
Watch her. Follow her lead. Be patient. She will show you her strengths. More slowly than you might have thought, but they will begin to unfold. Because EVERYONE has strengths. And when they emerge, encourage them. Foster them. Build new dreams around them. Together.
And if you’re facing that day – the day when it’s not unlikely that someone in a white coat will say those words that will send you reeling, please remember this – As much as things may feel different, they’re not.
Walk with the word for a while. Worry it in your hands, let it sink slowly into your heart. And know that as hard as it may be to take hold of it, do.
Because it holds the key.