“I was walking by a dry cleaner at 3am and there was a sign that said, “Sorry, we’re closed.” You don’t have to be sorry. It’s 3am and you’re a dry cleaner. It would be ridiculous for me to expect you to be open. I’m not gonna come by at 10 and say, “Hey, I was here at 3am and you guys were closed. Someone owes me an apology.”
~ Mitch Hedberg
I got a note from a mom this morning seeking my advice. Her son is going to play soccer in our town’s league and she had some concerns about how to best approach the director about her son’s special needs. I did my best to guide her based on my limited experience with such things.
I advised her to approach him openly and honestly. I suggested that she call him. E-mail, I said, is a great tool but a lot of the nuance can be lost in writing that might have been conveyed by a real conversation. It would allow him to ask questions in real time and hopefully really understand her son’s challenges.
I told her that I thought she should be careful not to hold back. I told her that while we all want to paint our kids in the best light, what will really help him in this situation is an honest appraisal of his challenges. I told her that when I do this sort of thing I write a list of topics and keep it in front of me while I talk on the phone. These things are emotional. It can be easy to get off track and hang up wishing you’d said more.
She wrote a lovely note back to me thanking me for my help. In the middle of the note was the following sentence:
I love your “this is who my kid is with no apologies” approach.
So is that my approach?
Yeah, I guess that it is.
I’ve never named it before but sure, I’ll go with that.
I just don’t know how else to do it. I can’t imagine doing this any other way.
When Brooke was first diagnosed with autism, I was in a tailspin. For a brief time, my life was a cocktail of denial, anger, confusion and fear.
The overwhelming flavor in that cocktail was the fear. Fear that Brooke would be discriminated against. Fear that people would retreat from her. Fear that we wouldn’t know how to help her. Fear that she would be alone. Fear that the asinine doctor was right. Fear that people would limit their expectations of what she could achieve. Fear that we would. Fear that she would be treated differently.
So I didn’t say the word very much. Although it was our private key to a desperately needed understanding of so much of what our baby struggled with – what WE struggled with - I kept it hidden in my pocket.
I actually remember saying things like, “Isn’t it funny that Brooke responds so well to all of these strategies that they use with autistic kids? Cause, you know, she’s so NOT autistic. But hey, ain’t this ABA thing grand? Ain’t that picture schedule really helping her out?” Golly Gee whiz. I really wonder how it was that no one b!tch slapped me back then.
We put her into her wonderful integrated school and we began to watch her blossom in the care of people who KNEW how to approach her. Who GOT IT. And you know what? They WERE treating her differently. My big fear that people might turned into a desperate prayer that people WOULD.
They treated her with respect. They spoke in shorter sentences that she could understand. They went out of their way to include her when she disengaged. They repeated themselves when she needed them to. They gave her ample time to process their words and to respond. They took her out of the room when it became overwhelming. They broke tasks down into manageable pieces. They encouraged her. They lavished her with praise. They found ways to make her feel safe – the toughest thing of all. The thing I couldn’t always do.
I saw that when people learned about Brooke’s challenges, they were more patient and less judgmental. They rejoiced in achievements that they might not have recognized as such before. They helped us lovingly push her to realize her staggering potential. And they helped us find ways to make her feel safe.
Being open about Brooke’s autism freed me. And I believe that it freed her.
I described it to someone recently as a process much like that of coming out of the closet. I remember friends who had hidden their sexual orientation for years. In mixed company, their speech was always devoid of pronouns. They became proficient at saying ‘my friend’ or ‘my roommate’ in place of ‘my boyfriend’ or ‘girlfriend’ lest they give themselves away. I was always frustrated for them. It just looked like so much work.
And so it is with our world. My speech is peppered with the jargon of autism. I don’t typically get through a day without using the words in some manner or other. It would take energy to censor myself. And quite frankly, I don’t have a whole lot of energy left. So, yeah, I guess my approach is ‘this is my kid with no apologies.’
But there’s more to it, isn’t there?
We model behaviors for our kids all the time. Why do you think our little girls worry about their weight? Why do you think boys who grow up in abusive homes tend to abuse? Acorns don’t fall far. So if I go out of my way to maintain this ‘secret’ aren’t I essentially teaching Brooke to be ashamed of a big part of who she is?
I can’t do that. I won’t.
And so, while I do everything in my power to teach my baby girl how to get by, nay to THRIVE in our world, I am also hell bent on changing that world’s perception of autism. One person at a time if that’s what it takes.
Seven weeks ago, Luau and I finally made an agonizing decision. It was a long time in coming and it was one of the hardest triggers we’ve ever had to pull. We put Brooke on the anti-anxiety drug, Celexa.
Someday maybe I’ll laugh at the irony of all of the anxiety caused by the decision about anti-anxiety meds. But not now. It’s not funny now.
All of the SSRIs (Selective Serotonin Reuptake Inhibitors) are prescribed off-label for children her age. The pharmaceutical companies don’t test them on young children. The doctors do.
I kept thinking about how vulnerable Brooke is. I worried about how little we really know about these wonder drugs. I thought of how draconian some of the old drugs seem to us now and I wondered what we will be saying about Celexa in twenty years. I agonized over brain elasticity.
I wondered if we might be making a deal with the devil. Could we be trading in her anxiety for some other developmental disability (you know, because this whole autism thing just ain’t enough) or some other abnormality down the line?
Despite the fears, we finally came to the conclusion (after a LOT of time, a LOT of careful consideration, a LOT of effort to find non pharmaceutical solutions, and a LOT of trusted, thoughtful, insightful professional advice) that the risks of doing nothing were far greater than the risks of the medication.
And we did it.
Slowly. Carefully. With nearly paranoid vigilance.
And her life has changed.
In seven weeks.
She remains on a laughably low dose, though I still find nothing about it laughable. It scares me too much to be funny.
But I could NOT let my baby miss out on her world because she was so desperately afraid of so many things in it. It was heartbreaking. Her entire little body would shake. She would cry. She would scream. She was terrified. And it was constant.
It’s not constant anymore.
From the beginning, Luau was comfortable talking about it. I wasn’t. I kept it quiet. I’m not sure exactly why. I just felt like I was supposed to keep it a secret. That I’d be betraying her somehow if I told people. Perhaps I feared people’s judgments. Maybe I feared my own.
But here’s the thing. I learned today that my approach is “this is who my kid is with no apologies.” So, here it is. The whole story.
And I am so incredibly proud of my kid.
And I’d say that I’m sorry that I didn’t tell you sooner, but nope. No apologies.