My Daughter's Speech Therapy Is Breaking My Heart

03/17/2015 12:07 pm ET | Updated May 17, 2015

Pat on the lap + eye rub = I'm sleepy and I'm ready to cuddle.

Mouth open wide + finger inserted = I'm hungry woman. Feed me NOW.

Right fist to left shoulder + pointing = I love you.

This is our language. Our secret language. Our language of love, formed from my daughter's need to communicate with me and my need to understand her. It has been the language we speak for the past five years, with American Sign Language, Spanish and English mixed in. But mostly, it's been our language of love. When she was diagnosed with Bilateral Schizencephaly at 10 months of age, I was told it would impact her production of speech and ability to communicate. I was told she would have some level of mental retardation. I was told this dread and that dread and all I could say was, "Not on my watch." I drove all over town five days a week so that I could one day give those doctors the finger. I refused to let them place limits on her future before she got to live it. She was my child to guide. And thus, we formed our love language.


As these last five years have gone by, I have watched her excel and shatter every limitation doctors once tried to place on her. We've been through just about every therapy under the sun, and if I told you that being dead broke and choosing between diapers and paying a utility bill just so I could have enough gas money to get her to therapy wasn't worth it, my tongue would fall out for lying. It has been five years since her diagnosis, and she is currently learning to walk independently. She is feeding herself, and imitating sounds and word approximations. What they said she would struggle with, she is knocking out of the park. And I couldn't be more proud. At therapy, we continue our love language with fist bumps after every successful pincer grasp, elbow bumps after an extended period of unsupported sitting and strutting like peacocks after a stroll around the clinic. She is a superstar in therapy, rarely complaining, and always ending with a pat on my lap and a rub of the eyes. "Mommy, I'm sleepy and I am ready to cuddle." And of course I oblige -- she's speaking my language.

But I have to tell you, there is a part of me that is unapologetically sad. She is having all of these wonderful, glittering successes, and yet I find myself at the crossroad between being overjoyed and wistful. You see, while she's been making all of these strides, we've managed to hold on to our secret language -- gestures and looks, pointing and lap pats. When no one else knows what she is trying to say, I know. When no one else knows what she is asking for, I know. When no one else can figure out why she's crying, I can. Most of the time, it takes about two seconds, and she knows that if no one else knows her, I know her. But now there's a communication device. It's got pictures that correspond to words, and when she presses one this computerized robot voice tells me what she wants. And if I'm being honest, as much as I love it, it's starting to form the rugged, zig-zag crack at the top of my heart. Now, instead of looking at me and then glancing at the bowl of oranges to tell me she'd like some fruit, there is a button that says "fruit." Instead of patting my lap and rubbing her eyes to tell me that she's sleepy and ready for cuddles and bed, there is a button that says "sleep." This device is granting her so much independence and the ability to speak her mind. It is opening the gateway to conversation for us. It is giving her the skills to one day be able to say "Mom, you're being a real bitch right now and I wish you'd just go away." And as much as I dread that day, I also can't wait for it. I love the fact that my daughter will one day be able to tell a boy he's cute, or a girl she's cute, or a boss he's being a creep, or a teacher that he/she is disproportionately focusing on the role men have played in the civil rights movement. I can't wait to get the note home that says "your daughter is talking too much in class" (actually, yes I can, but I'm going to assume you know what I mean). However, right now, while she's 5 years old and learning the motor planning to tell me she's sleepy or hungry or wants to watch television.

I just want our secret language. I want to hold onto it for all its quirky, silly nuances that only she and I know about. It's selfish, I know. How dare I want us to keep this little gem of communication we've created? How dare I expect her to forgo her own advancement to appease my aching mommy heart? How dare I want my baby to stay my baby forever?

But alas, we didn't go to every therapy under the sun for nothing. So, I'll watch her grow, I'll listen to her punch the buttons and tell me she's hungry/thirsty/sleepy/anything, and I'll applaud her as she gives her graduation speech, 13 years from now, on her communication device. But for now, while she's 5, I'll hold on to any moment I get to share our secret language. Every sparkly-eyed glance. Every wry smile. Every lap pat and eye rub that says, "Mommy I'm sleepy and I'm ready to cuddle." Our language doesn't need a device. It's ours -- glance for glance. And no series of letters strewn together could ever aptly communicate our language of love.

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