a diary of a mom

Last night, as my dad drove us home from the amusement park, he said, “Brooke, we’re about three minutes away from home now.” In another minute, he said, “Brooke, about two minutes left, okay?” As we got close, he said, “We’re going to go around the river, up the hill, and then around one bend. And then we’ll be home.”

“Around the river and up the hill?’ she asked from the back seat.

“Yup,” he said, “and then around the bend and we’ll be home.”

“Ooooooookay!” she shouted back with a grin.

This has become a thing. Over the past few months, since we’ve been coming down, my dad has narrated the end of every car trip for Brooke, telling her what to expect and when we will reach our destination. Last night, I mentioned it to him. I told him how much I love that he does that, that he thought of it, that he realized how comforting it would be to her.

He shrugged. “I know she likes knowing what’s happening next,” he said. “And I just want her to be able to trust me.”

— from Diary’s Facebook post, Sunday morning.

–

When Brooke was a toddler, we were desperate for help. All that we (thought) we knew was that we didn’t know anything. And that’s a pretty scary place to be. And it made us vulnerable to taking advice that, under any other circumstances, would likely have made us run in the other direction. After all these years and a lot of advice, I’m here to say, if something feels wrong, it probably is. Run in the other direction. Fast. But we didn’t know that yet.

The first professional that we had come to the house for Brooke was a speech therapist. Overall, she was wonderful. She knew within a minute and a half of meeting then three year-old Brooke that she was autistic. She taught us how to engage with her in what she was doing rather than insisting that she engage with us in what we thought she should be doing. It was brilliantly simple and paradigm-shatteringly helpful.

And then she told us what we needed to do to encourage eye contact.

Please don’t do this. For the love of God, don’t do this.

She taught us to take whatever it was that we knew that Brooke wanted – something that she was reaching for or whatever we knew by virtue of pattern recognition that she would be looking for next – and to hold it up next to our eyes.

For the love of God, don’t do this. 

She taught us to force our kid to do something uncomfortable to the point of physical pain to get the thing that she wanted.

Do. Not. Do. This.

We did it. We held hostage the things that I knew my child wanted (long before she had the words to protest) and I made her do something that served no purpose — would serve no purpose — other than to make her appear less like who she is — to get it.

I don’t know how long it took until we stopped. Until we realized the absurdity, the futility, the abuse inherent in what we were doing. But we stopped.

And then we began to work to earn back the trust that we had broken.

–

Yesterday, I wrote about joint attention. About how beautiful it’s been over the years to share in the things that Brooke enjoys. But it’s so important to say that while I find it momentous that her language is becoming so much more powerful as a tool for sharing her thoughts, we have enjoyed joint attention for years.

Sitting on the floor with her watching dust mites dance in the sun through the window. Sitting next to her in the back seat of the car, making shadows in the light on the seat in front of her. Sitting on the floor pulling at ribbon strings or together on the shower floor making mountains out of shaving cream.

There were thousands of ways in which we connected around the things in which she found joy. And slowly, surely, consistently, by doing them together, we built trust.

–

Over the years, I’d ask her, “What do you see, baby?” When she couldn’t yet answer, I’d tell her what I saw. “I see a tree and its green leaves swaying in the wind. I see the water crashing on the rocks. I feel the breeze on my face. I like the way it feels, do you?”

Eventually, she began to answer, in her own ways. “Sky,” she told me one day when I asked what she could see outside the car window.

“Faster,” she said one day when I asked if she liked the breeze. She wanted to run so that we’d feel the wind on our faces. That was joint attention too.

And all of it, every bit, came down to trust.

I trust you to meet me halfway when I try to communicate. 

I trust you to value the things I think are important. 

I trust you to never, ever physically impose your will on me if I am not in danger. 

I trust that if I show you how much this means to me, you won’t take it and ransom it back to me like a trained seal putting a hoop on my nose for a sardine. 

–

Jeneil and the girls came over for dinner the other night. Rhema wasn’t comfortable sitting at the table, so she stayed in the kitchen. I joined her. I did what I always do: I offered my hands to her, palms up. After all these years with my own girl, it’s instinctual. Rhema’s hands speak, just like Brooke’s. They are her conduit, her communicator, her antennae, her first line of defense.

I once wrote an entire post once about my girl’s hands:

Image is a photo of Brooke stopping on the way out of camp to touch the earth. July, 2013

My girl feels her way through the world.

It’s what she does.

It’s the way that she learns.

It’s a big part of who she is.

Sensorial experiences mean far more to her than the words that the rest of us arbitrarily assign to them. And isn’t that the way it should be? The essence of feeling itself more valuable than our suspect attempts to describe it?

Her hands are finely tuned instruments — collecting data, sorting and storing information, registering and cataloging thousands upon thousands of moments in a life lived through touch.

Her fingers are her antennae. Her nails scratch to see what’s just below the surface. Her fingertips rub and poke and push to read texture, temperature, density, elasticity, porosity. The feelings, the senses — they are her memories. They are what matter.

And so it is that THIS is a big deal. A really, really big deal.

It takes a lifetime of trust for my daughter to give you her hand.

It is why it is so incredibly violating to presume the right to try to take it without asking. It is why “hand over hand” instruction is not EVER okay without TRUST and CONSENT. It is why grabbing her hand to pull her into a line or redirect her will invariably result in an ‘unexpected’ yelp. Not really so unexpected if you stop to think about why.

To grab her hands is to strangle her point of connection with the world.

It’s not okay.

I love holding hands. But I’ve come to understand why it’s so hard for Brooke to do.

Now when we walk, I offer her my arm. She takes it by linking hers through mine, as though I’m escorting her to a ball. We are linked, but her hands are free to do what they do. To touch, to discover, to learn,to interact, to FEEL.

And once in a rare while, she offers up a gift.

{image is a photo of Brooke holding my hand}

And I’m lucky enough to know exactly how much it means.

–

I know how much hands matter. So, as I do every time I see her, I offered Rhema mine palms-up – empty, non-threatening, never, ever to be used to touch her without warning, permission, trust.

She was rocking and humming her beautiful Rhema song. I told her how much I love to hear her sing. I swayed with her, foot to foot, side to side. I told her I was really glad she was there.

I offered her a strawberry dipped in cream, her favorite. She swatted my hand away. I said, “I hear you, love. How about if I eat it then?” She pushed my elbow, moving my hand toward my face. I popped it in my mouth just before it smushed my nose. “Okay,” I said, swallowing. “If you want one, you just bring me over there and we’ll get one, okay? There are lots more.”

She grabbed my hand and pulled me in the opposite direction, into a quiet corner on the other side of the wall. She held my hand next to her chest and resumed her song. After a minute, she pulled me back to the original spot. We moved back and forth between the corner and the wall, singing, rocking, being. Eventually, she pulled me into the den where we’d set up dinner.

Jeneil seemed momentary surprised when I told her where I’d been. “We were visiting,” I said. “It was awesome.”

“There are so few people who can do that,” she said. “She trusts you.”

–

People often ask how we’ve been able to help Brooke make the progress that she has. I’m afraid I’ll sound smug if I answer honestly, but the truth is, we learned to get the hell out of her way.

I can’t take any credit for where Brooke is today. That’s all her with the help of some wonderful teachers and therapists. But if there’s one thing to which I would attribute our success as a unit, it’s trust.

We trust that she is capable and aware and present, even when all of the evidence that we see through our neurotypical filters tell us otherwise.

And she knows that she can trust us. To value what she values, to do everything in our power to meet her halfway when she communicates, and to guide her with love, respect, and an abiding honor of who she is.

Hands out, palms up, we’re here.