words fail

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Because even the smallest of words can be the ones to hurt you, or save you.

– Natsuki Takaya

I don’t know how to sufficiently explain it. I know that for many parents, the daily grind of school-drop off and pick up is mind-numbing at best and a minefield of combustible social interactions at worst. And I get it. I really do. If I were a stay-at-home parent, I’ve no doubt that the guild would eventually be off the lily and I’d tire of daily smiling and nodding while navigating the clumps of nuclear-powered Mommy-cliques on the schoolyard. And we all thought middle school ended in 8th grade. Ha.

But, you see, thanks to my work schedule, neither drop-off nor pick-up are part of my repertoire. The closest I get is helping to lay out clothes every night for my little one to wear in the morning. And, to be frank, I hate it. I hate missing helping her with her backpack and watching her walk into the building. I hate that I don’t get to say hi to the school secretary, one of my favorite humans on the face of the earth. I hate that I don’t get to see her teachers and remind them by virtue of my presence that I’m invested, that I’m supportive, that I’m there. Because I’m not there. And I hate it.

So on the rare days when I do get to bring Brooke to school, I revel in it. All of it. In the walk, even when it’s just from the car to the door. In the silly scripts and the wave to the crossing guard and hell, even in being the one that’s there to comfort her when she checks to make sure that there won’t be firefighters at school, just as she does every day.

I float into the building, grinning like a court jester at everyone we pass. I wave far too enthusiastically at parents I haven’t seen in a while and teachers .. oh the teachers. It’s all I can do not to hug every dang teacher. I poke my head into the gym, the front office, the janitor’s room. I say hi to everyone … because I can.

And, despite the fact that little Miss can now walk in independently, I join her all the way to her classroom. Because, well .. teachers … and Ms J and the other kids and all the people who care for my girl every single day.  I know .. I know that I’m the one who insisted that Luau leave her at the front door to foster independence. I know that I’m the one who chided him for walking her down even – gasp — after we’d discussed it. I know. But, well .. desperate Mama rationalization alert – rarity trumps hypocrisy. Right? Say right.

So there I was last Friday, walking my girl into school. There I was, grinning and waving and generally embarrassing both of us, as you do. And then finally, there we were at her locker when I said, “Okay, kiddo, let’s put your stuff away and then I’ll walk you to your classroom,” and there we still were when she immediately and firmly responded, “You won’t go.”

And there I was, looking at my girl, thinking that perhaps the time had come for her to draw her own boundaries. For her to say, “You’ve gone far enough, Mama. This is where the journey ends.” So I said, “Okay, sweetie. You don’t want me to walk to your class with you?”

Anxiety is, for my girl, as physical as it is emotional. It curls her fingers and lifts her shoulders. It pulls her face taught and tightens her neck and her back and every muscle in her arms and her legs and her feet. I watched it envelop her like a toxic flame. I’ve studied this child for so long, there was no mistaking it — she wasn’t being understood. I wasn’t hearing her.

“No!” she yelped. “You won’t go!”

I fought to see what I was missing. I searched for clues.

“Baby,” I said, “I don’t understand.”

She yelped again before I could continue. Her clawed fingers moved in and out at lightning speed in front of her body in their own silent scream.

“Brooke,” I said, fighting to sound calm if not cheerful, “it’s okay. If you don’t want me to go with you, I can say goodbye to you right here.”

“No!” she shouted. “YOU WON’T GO!!!”

It’s odd, you know, how falling back into awful, heart-breaking moments can actually make you see how much farther and fewer between those kinds of moments have become. This was my girl’s world for so long. This was it — all she had. This place where words existed but could never be counted upon to reliably express, well, anything. This place where no one, no matter how hard they tried, and God did we try, seemed to understand. This place where anxiety and frustration ran in circles around each other like a dog chasing its tail, leaving Brooke, and all of us, depleted. This place where we now visit, more often than we’d like, but no longer dwell.

“Honey,” I said, “I’ll do whatever it is that you want me to do. We’ll figure it out together, okay?”

“OKAY!” she yelled, her voice straining to make it out of her throat. Her eyes began to water with tears.

“Okay, so, let’s try to find different words, ” I said. “We can do this.”

My knees were starting to scream at me for kneeling for so long, but there was no way I was getting up. This conversation had to happen on as level a field as I was capable of creating.

“You don’t want me to go, right?”

“Right.”

“Okay, where do you not want me to go?”

“Home,” she said. “I don’t want you to go home.”

Oh my God.

“Oh, sweetheart,” I said.

“Not today at all,” she said. “I want you to stay. So that you won’t go ever.”

I often say that words are unreliable for my girl. This is part of what I mean. Sometimes she can’t access them at all. Sometimes she can, but they simply don’t mean what they appear to mean or even remotely what she wants them to mean. Sometimes, like this, what they seem to mean is the exact opposite of what she is trying to convey.

It’s so hard to say, “Please don’t take my daughter’s words at face value,” without feeling as though I am being disrespectful of her – without sounding as though I’m being dismissive of her voice and her right to speak her mind. But, as counterintuitive as it might be for us non-autistic folks, it is precisely by searching beneath and behind and around her words and taking into account the myriad other factors that contribute to her ability to communicate that we are actually being the most respectful of her. And even after all of that work that we are doing to understand her, we are still exerting just the tiniest fraction of the effort that she is making to be understood.

She has made incredible progress. She can now, almost always, work through those moments. She can, with Herculean effort, keep the anxiety at bay just enough to keep at it. To keep searching. To keep rearranging and adding and subtracting and contorting and trying, trying, trying again and again and again to find a way to be understood.

I’m so glad that she can.

And I’m so, so sorry that she has to.

21 thoughts on “words fail

  1. It’s interesting because I assumed that’s what she meant from her words – that she didn’t want you to leave the school.

    • I can see it clearly too now that it’s written out. But in the moment, it seemed just as clearly to mean the opposite, given that she was saying “you won’t go” in direct response to (or at least immediately after) me saying, “and then we’ll go to your classroom.” If only we had the 20/20 hindsight when we really needed it – in the moment! 😉

    • I was thinking the same thing as Natasha! I realized that it’s easy for me to see what she meant because of the way you explained it, but I can only imagine how hard is was to see what she meant with all the other factors going on around you.
      Thank you for sharing this and for being so kind in your reply!

      • thank you for this .. isn’t it amazing how respectufl dialogue is when we all take the time to see one another’s persepctives? 🙂 xo

  2. This. Just this. All of it.

    Even as an adult I sometimes have trouble getting people to understand what I mean because the words just don’t always come to the surface correctly.

    Just know that moments like this don’t just disappear with age. There will be more of them as she continues to grow up and words start taking on even more meanings (because we all know in the adult world there are a lot more double entendres and implied meanings).

    Hang in there though because one day she will lay you out cold with her ability to let you know exactly what she means when it means the most. Just ask my mommy. 🙂

    • lol – my schedule would have been (to a point, as I’d taken the day off in part because I was guest lecturing at a local college later that morning), but there’s only so long that a mom can actually just ‘hang out’ in her kid’s 5th grade classroom. The teachers are WONDERFUL and incredibly open and welcoming, but I left before the last bell rang. (By which time she understood that I would have to go and was back to her silliest, giggliest best).

  3. I spend so much time with you and your family. I rejoice so often in Brooke’s triumphs and interactions that I tend to forget the everyday struggles that “our” girl faces every day. The sharing of the hard times wipes the smile from my face and bring tears of frustration (for her and for you and your family). Know that you all are in my prayers and , though we don’t know each other, you matter to me.

    • thank you, lady. the hard times are part of life – and part of why we are all, brooke included, so blessed to truly FEEL the good stuff. xoxo

  4. This post made me cry. Not sure why this one did and other posts that are equally emotional haven’t. I relate so much to this. My daughter is 8 and semi-verbal and when she does say a word and I can’t figure out what she means I feel like the worst mother on earth and my heart just breaks for her…and for me. Thanks for your blog I love it and it helps me so much through out my day to know I am not alone.

  5. Sometimes your stories cut right to my bones bc it seems to have just happened at my house! It’s so nice to read we’re not alone in this battle we face:) and just like you I have always shared stories about my girl’s sillies, but now I have to ask her permission as she is almost a teenager. A lot of times she tells me NO WAY! And I’m fine with that. I write it down so if I want I can relive it in my memory:) keep up the good work & please keep sharing! It makes me feel normal!

  6. She is doing so incredibly well. I love the self-advocacy, love the immense self-regulation to hang in there with you until you got it.

    What I want to share with you, I share from a place of deep caring for your family. I’m definitely not being Judgy McJudgy at all.

    Last year in June, I was in Santiago, Chile on a work-related trip. My Chilean counterparts and I were bemoaning the incredibly long hours and days we worked for this particular company. One of the Chilean women I work with said (in somewhat broken english, so it came out quite baldly) “How much you work is up to you. You just have to say no”.

    *Gasp*.

    I remember thinking “Of course I would say no if I could. How could she? How could she know what this is like? We have to pay for therapy for 2 special needs kis and I’m the main bread-earner”.

    But she was right. I only have one shot at taking my kiddos to school, and soon it will be over. It took me nearly a yearm and a truck load of courage to accomplish, but by hook and by crook I now work less than 40 hours a week. I drive my kiddos to school at least 2 or 3 days per week. I do pick up once in a while. I LOVE it. I love being there to see the people who love and support them. I love being there for them.

    I couldn’t go back. I just couldn’t. I know Luau is there for your girls, and that is eawesome and enough. But if you could eek out one day a week to work from home, or take time off, or or or… could you? What would it take?

    xo

  7. Maybe a different expression than, “smile like a fool?” I know I’m HYPER sensitive, but any word that points to the fact that only R-word people would behave/smile/do/etc. anything, needs to be eradicated, if you ask me. Thank you!

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