special needs

Sunday afternoon sunlight dances through the curtains, playing across the table.  Riley’s fingers tap against the computer keyboard.  She sits with papers strewn—bubble maps for planning paragraphs, comparison notes, an interview answered via email.  She stops periodically to move her finger across the page beside her, pausing to say, “Mom, I need help over here—with the organizing.”

This afternoon, we slog our way through a writing project, perhaps the hardest bit of work for her, because the words feel like knotted ropes she must untie and lay out flat to make a discernible shape.  We both feel exhausted just from the planning, every idea pulled taut, an effort.  I don’t miss the wild blessing that she can do this at all, that she tries so hard.  Every so often, her tears brim, coming like sweat from so much effort, and she doesn’t understand.

I stand near by, just on the other side of the table, working on a conversation notebook for Adam.

I stop and look up, feeling her crying.

“Are you okay?”

She sits a little straighter in her chair and blinks.  “Yes.  Yes, I’m okay.”

“Are you sure?  Do you need a break?”

“No.  I’m okay.  I’m sure.”

“You look like you’re sad.”

“It’s just—sometimes I feel that way, and I don’t know why.”

I smile at her, waiting.  I understand.  She sniffles and looks pointedly at the computer screen, bending toward it.  Determination is one of her strengths.  Adam gently picks up my hand and moves it toward the container of pictures I am using for his notebook.  He reaches down and takes up a picture I had placed face down on the table, then a small piece of Velcro.  He works at the adhesive on the Velcro rectangle, tugging at it with his finger.

I smile at my son.  “Get back to work, huh?”

“Yes.” He says softly.  “Adam’s pictures.”

“Yes, these are Adam’s pictures.”

He gestures toward the notebooks.  “Adam’s binders.”

“Yes.”

I slice more Velcro with my scissors, making it last.  Adam sits in the chair, flapping his arms, continuing his effort, sticking the adhesive side of the Velcro to the tiny 1-inch by 1-inch squares I have cut, laminated, and cut again.  We sort the squares onto sheets of laminated card stock according to topic—six of his favorites for talking—video games, the beach, music, the weekend, school, his birthday.

It took two afternoons for me to collect a beginning set of pictures and words he can use to make sentences and have conversations about these things he likes.  I took pictures of all of our Xbox games, his favorite CD’s, and pictures of our family to import into the software.  On the inside flap of the notebook, I created structure for turn taking so that he’ll understand:  your turn to ask a question, my turn to answer, my turn to ask a question, your turn to answer.  He desperately wants to have conversations, but he doesn’t know how.

Adam asks everyday about the book.  “Adam’s binder.  I like it.  Adam’s,” he says, pointing at the mess of notebooks, Velcro, scissors, and pages.  It’s part of his routine, in the morning, to pick up the lotion container I’m using to store the pictures that still need Velcro.  He flips it and shakes it, and looks to see how many more I’ve fixed.  Nothing distracts him from my progress.

“Mom, this is what I wrote,” Riley says, pointing to the computer screen.  I’m meant to proofread.  She still mixes pronouns and tenses sometimes, still loses her way from time to time in the middle of composing a sentence.  I put down the scissors and walk around to her side of the table, pausing behind her, resting my hand on her shoulder.

I can feel Adam’s attention, the wrinkle in his brow, his eyes moving back and forth between me and the pile of pictures on the table. “Cut,” he says, impatiently.  He has no time for distractions.

“Well, you need to put a comma here,” I say to Riley, pointing at the screen, “a comma before the and.”

Adam’s chair scrapes against the linoleum, groaning.  He walks behind me and puts his hands on my shoulders.  Since I’m finished reading, I let him move me back to the pile of Velcro and binders and pages and 1-inch square pictures.  “I think you can write the next paragraph,” I say to Riley, as Adam reorients me, his hand on top of mine, moving my fingers back to the container of pictures.

Three times, he has tried to steal all my supplies and take the binders, unfinished, up to his bedroom.  He wants nothing so badly as to see them finished, to have in his hands this thing he needs.  Three times, I have rescued the supplies, pointing out that the pictures and the binders will be for talking, that I have to finish them.  “Yes,” he says, urgently.  “Adam’s pictures.”  I’ll be cooking supper, stirring something steaming, and he’ll stand between me and the food, looking into my eyes, insisting.  “Adam’s.  Adam’s binders.”

I understand his urgency, the depth of the need he feels.  My son has always wanted to make connections.  Motivation has never been the issue for him.  He stands in front of kids he likes and smiles wide and laughs loud and moves from side to side, trying to figure out what to say.  He’ll do anything he can to make them laugh.  I have had to teach him to stand back, not to invade their space.  He tries so hard, but the words just won’t come.  It’s as though something snuffs out the neural pulse before it delivers the words to his lips.

Sometimes I hear him practicing phrases—snippets of song lyrics, things his teachers say at school, greetings to his friends, something he hears on TV.  Low, soft, as he sits down to breakfast, when he doesn’t know I’m listening, he’ll say, “Adam, do your work,” or “How are YOU doing?”  It’s something quite different from scripting, the sing song repetition of memorized scripts—stories, lyrics, TV shows, video game commentary.  This isn’t repetitive or recorded or animated.  It’s more thoughtful, spoken in pensive whispers.  It’s practice, sorting, Adam’s way of trying to beat the challenge.

Adam needs this conversation binder, and he knows it.   And owning the need makes him single-minded, unhindered, desperate, urgent.  He likes the ease with which the pictures remind of the words he just can’t quite reach, all things he likes, things he wants to share.

Once I made Adam a less manipulative communication notebook full of more general terms, with specific pages for going to the dentist’s and the doctor’s offices.  Adam acted out the representative pictures almost obsessively, making a game of it. The day he walked back to his dental exam carrying that notebook was the first day I didn’t have to lay on top of him while the hygienist cleaned his teeth; it was the first day he understood what they wanted to do, the first day he didn’t scream in fear, the first day he didn’t need “the special room.”

So maybe that’s why he wants me to spend every minute putting Velcro rectangles on those pictures, sorting them into pages.  He knows what he needs, and he’s desperate for it the way the hungry long for food and can think of nothing else.

And he teaches me. Because, well,  I have special needs too.

And I know what I need.  And if I really own the needing, it should make me just as desperate and urgently single-minded.  No time, no space in my heart for distractions.

Every day in this weary place, I wake up hungry and blind, and I don’t know how to make sense of what I see here or how to breathe through all the need.  Word says, “If a man remains in me and I in him, he will bear much fruit;  apart from me you can do nothing (John 15:5).”

This is the truth: I know without a doubt that I don’t have enough to do this.  I don’t have enough to do or be or become.  Fruit-bearing requires a holy effort.  It is a God-sized work.  But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us (2 Corinthians 4:7).  

Unless God fills, I am empty.  Unless He multiplies, what I have will never be enough.  Unless He gives me eyes, I can’t see.  Unless He shows me, I don’t know.  Unless He supplies the gifts, I can’t do the lasting things.  Unless the words are His, it’s better I don’t speak. Without Him, I can’t breathe.

I need Him, desperately, urgently, unhindered.

I’ve tried a thousand other things, crying out for meat (Numbers 11:18-20) while He offers me the bread of angels (Psalm 78:25).  I’ve chased the not enough we put in that blank, the I would be happy, or okay, or able if, and consuming it all only leaves me still hungry—maybe filled by never truly satisfied, the need deadly, gnawing.

And so God teaches me to wait on Him the way my son waits for his binders.  He speaks, and the Truth is a seal on me (Ephesians 1:13,14):  Only me.  Nothing and no one else.  Feel the need of me, urgent.

These days, I want to hide Him deep, in all my secret places.  I long for what He’s doing before it’s finished.  I pull myself out of bed early just to be with Him because I know I can’t do anything without Him.

I know it like I know nothing else.

And He has promised me grace sufficient (2 Corinthians 12:9), enough manna for the day, the words from His mouth to nourish me (Deuteronomy 8: 3,16-18).  So, I collect them up, all I need for today, desperately gathering His love in my arms.

I see that this too is yet another wild blessing, another gift from His hand, another grace—this knowing what–whom–I need, the sacred answer to all our longing—for we are certainly not at home here—this treasured satisfaction, safe:

I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do everything through him who gives me strength (Philippians 4:12,13).