Nani | Laughing Until I Cry

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Letting Her No, Mean No

If someone had told me so very many years ago I would never hear Nani speak nor would my words reach her, and any kind of communication system would be limited at best, I would have assumed I would never really know Nani. While the limitations are true, there is a great depth to our communication. Certainly there are gaps and things she can’t tell me, and things I have no way to explain, but we do hear each other.

The hardest part for me is in the listening. It’s in remembering that all behavior is communication. It’s in remembering that Nani has a right to have her communication respected, and when she is telling me “NO!”, in every way she knows how to say it, I need to listen. I need to let her NO!, mean no. Many days I’m the one with the greatest lack of communication skills.

There are memories of times I didn’t listen which still make me catch my breath and tear up. Times she needed me to hear her so badly. The many times I watched her retreat deep inside, as she sadly resigned herself to my hardness of heart and hearing. Then there are the memories that make me smile and laugh with pride at her genius and perseverance. The times Nani found a way to say, “Can you hear me now?”.

One of those times was during her middle school years. I’d developed a bad case of stupid and insisted upon her wearing a pair of denim shorts to school, even though I knew full well she preferred a soft knit. Our conversation went like this: I got the shorts out, put them on the bed. She threw them back into the closet and closed the door. I retrieved the shorts while she chose another pair. She took my choice and threw it down the hall, and began putting on her preferred pair. I again retrieved the shorts and pointed to them emphatically, and begin to try to get the other shorts off of her. She resisted. (I wasn’t kidding when I said it was a bad case of stupid, was I?)

Suddenly she complied. This gave me pause as it was not a typical scenario. Of course, my stupidity caused me to begin trying to pinpoint what amazing communication tool I had used to reach her. Was it the emphatic pointing, was it my holding the line? I’d have to study that later, she needed to get to school. The rest of our time went smoothly and I dropped her at the classroom door.

A few hours later her teacher called to say Nani had done something a bit strange that morning. Kris reported Nani going straight to her locker and getting her extra set of clothes. This seemed unusual since Nani had never initiated changing just for the sake of changing. My vast intuition and insight allowed me to guess correctly that it was only the shorts Nani wanted to change. Laughing, I said that it was fine with me. Nani’s sudden compliance now made sense.

But Kris had not called about Nani changing her shorts, but because she was insisting on throwing the denim shorts into the trash. They retrieved them and showed Nani that the shorts should go into her backpack. But she was not having it. She would get the shorts out of her backpack and put them back in the trash. They tried ignoring the behavior, waiting until she was distracted, and trying again. Nani began periodically checking to make sure the shorts remained trashed. After a few rounds of this, she pulled the trash can close to her chair to make monitoring easier. Kris said Nani was clearly getting frustrated and wanted to know how I preferred she handle this. I confessed I had forced the issue, and told Kris to leave the shorts in the trash. As far as I was concerned, Nani had earned the right to settle this argument once and for all.

Non-verbal? Yes. Non-communicative? NO!

And to think some people question her problem solving skills.

Written on 23 Mar 2015
Did you find everything you needed today, ma’am?

I’m never quite sure how to answer that question. If you looked in my pantry and fridge right now, you would think these people are either fasting or bankrupt. I love cooking, but have always found the shopping tedious. Nani has done her best to make it exciting for me. She is also the reason that question gives me pause, because some times grocery shopping entails more than just finding the groceries.

Grocery shopping with Nani was (and is) a trip, and I mean that in all ways that one can define “trip”. For the most part, she would walk beside me, wait by the cart when it stopped. But most is not always, and that is what made every trip interesting.

I never knew when she would take off and run through the store. Nani runs like Groucho Marx, but she could cover some territory. She’d start running, I’d start chasing. I’m not sure who I look like when I run, and please do not submit any suggestions about that. I do know that I don’t cover nearly as much ground as she does, even when I’m sprinting.

One of her favorite places to dash was the freezer section. At the time, the freezer compartments were long, waist-high, bins. I would come running after her, and reaching the aisle I’d seen her turn down, she would have vanished. Out of sight because she was lying perfectly still on top of the frozen vegetables, grinning from ear to ear! I’d get her out of the bin and walk her cold little fanny back to wherever I’d left the cart.

Often there were not so subtle clues to her whereabouts. All I had to do was follow the line of sight of the most horrified-looking shopper. This is known as joint attention, looking to see what someone else is pointing or looking at. I find it quite ironic that people with autism struggle with joint attention. Lack of it is a hallmark symptom in early diagnosis, and yet Nani was an expert at helping me practice MY joint attention skills.

Take the produce aisle. I’d be giving my attention to picking out the cream of the crop. 15 seconds later, turning to put my selection in the basket, I knew right away if I had a problem. Once I turned to find a woman slack-jawed and wide-eyed, watching Nani run her tongue across the width of the romaine lettuce section. I bought 6 heads of pre-licked lettuce that day, and green smoothies were not yet in vogue.

The wine aisle was obviously a minefield, and not just because I might be tempted to break open a bottle right then and there. My goal was no broken bottles so I kept her especially close to me on that aisle. Yet one day she still managed to plunge her head into the whirlpool wine chiller and take a long slurp from it. Panicked, I sought out the store manager to find out if the solution was just water, or would my shopping be interrupted by a trip to the ER.

I ran up to Juan (yeah, we were on first name basis), and this was our conversation.

Me: (frantically) Juan, Juan what’s in the wine chiller?

Juan: (running over to look in the swirling water) I don’t see anything!

Me: No! What’s IN there?

Juan: (sounding confused) Water??

Me: (Still frantic) Only water? No chemicals?

Juan: Only water, why?

In a nano-second I switch out of crisis mode. It’s a gift.

Me: (now nonchalant) Oh, because my daughter just drank from it.

Juan: “WHY?”

Oh Juan, that has long been the question.

Middle school age brought the corny dog ritual. In an effort to make Nani’s trip to the store more rewarding, we would begin by purchasing a corn dog at the deli, placing the package in the basket to be eaten at home. The minute she entered the store she broke out in a run for the deli. She would stand extremely close to any other customers in front of the counter, giving them what we refer to as the “raptor eye”. Turning her head to the side, she’d lift her chin and fix one crazy eye on her competition. This was sometimes accompanied by a snort and slight bellow. (OK-so she’s not ever going into sales!) I’d intervene, sign “wait”, pray a lot, smile a lot, sweat a lot. Finally, we’d get the goods and be on our way.

But here’s the trouble, Nani doesn’t understand yours, mine and ours. She just understands “MINE”. In her world, even if all the corn dogs weren’t coming home with us, they were hers. That meant that periodically she would dash back to the deli to inventory them through the glass case. Which explains why one day when we were on the opposite side of the store from the dogs, she felt the need to check her stock.

From where we stood it was a straight shot down a central aisle. As though a starting gun had fired, she was off! In the distance I could see an elderly woman standing RIGHT IN FRONT OF THE CORN DOGS. Nani in the lead, me following, praying, “please God, please God, please God, let me get there before she knocks that lady down.” I watch horrified as Nani sidled up to the woman, shoulder to shoulder, leaned her head in and fixed her raptor eye on the trespasser. I reached the scene moments later, as I approach I hear this gentle soul saying primly, “personal space, please young lady, personal space!” I almost stopped in my tracks laughing. Lady, if you only knew! Nani’s personal space is as big as the universe. The way she sees it, you’re the one with boundary issues. Crisis averted, I was truly grateful for this woman’s kind and respectful manner towards Nani in spite of her odd and very intimidating behavior.

Couple of years ago, HEB decided to drop corn dogs from their hot deli menu.

I have no idea why.

Written on 9 Nov 2012
The Angel in the Marble

Nani at four years of age

My MIL showed me this picture the other night, she said when she looks at it she feels like she can see Nani’s soul. I’d agree. Don’t go theologic on me, I know only God can really see her soul, but comments about her ethereal beauty will be approved.

I don’t remember seeing this picture before now, and initially it undid me. I miss those beautiful blue eyes which now carry opaque scars. I miss her being small enough to hold on my lap. I don’t miss how fresh our grief was at that time.

It really captures Nani at that age. She often looked statue-like, her features frozen, her eyes staring off, as though she was carved from stone. But we began to see the angel in the marble and she began to see us.

We’ve made peace with all those diagnoses for the most part. We have embraced her Nani-ness, although it still drives us crazy at times.

I know that most people don’t see the angel in the marble when they look at Nani. They can’t see past the quirky sometimes irrational behaviors, the awkward gait, the strange posturing, the lack of eye contact, the strangely shaped forehead after years of head banging.

That’s OK.

I see her, and she is so beautiful. I hear her, though she has never spoken a word and she hears me. And it’s all pretty wonderful. In some ways it’s all I ever wanted.

Reeve Lindberg captures it all so well in an article she wrote about her mother’s loss of language near the end of her life-

(My paraphrase)

I have come to understand… that human relationships can exist beyond interpersonal interaction, beyond eloquence, beyond the written & spoken word. She has taught me that there is something more important, something I can only call presence, & even then I’m not sure I have named it correctly. It is possible to love someone just by being with them, whatever their condition or mood; that it is possible to love someone without expecting an expression of love in return; that it is possible to love someone without the confirmation of her familiar identity, & even without the confirmation of mine. Some things cannot be expressed through speech or in writing, & some things are so close to the very bones of individual human experience that they cannot be expressed at all. They simply are. In some inexpressible way, I know, without her words or mine, that we are intimately connected.

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Written on 11 Jul 2012

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Tag: Nani

Letting Her No, Mean No

Written on 23 Mar 2015

Did you find everything you needed today, ma’am?

Written on 9 Nov 2012

The Angel in the Marble

Written on 11 Jul 2012