“Everything and anything I could do for this marriage, I have done,” I told him.
Silently, he shook his head, looking down at his hands. “That’s not true, Valerie.” He wasn’t fighting back but acquiescing. That scared me far more than aggressive words would have.
“What do you mean?” I would have preferred a fight to the kind of quietness and ache I felt in his words. “What have I failed to do? I dare you to come up with a single thing.”
He looked up and held my eyes. He wasn’t angry. His eyes and body language were calm and yet deeply sad.
“This is the truth, Valerie: Whenever there was a choice to make, you put Emily first. No matter what it was, no matter my thoughts or feelings on the subject, it didn’t matter. Emily was always number one.” He didn’t look away but held my eyes. He wasn’t threatening or incensed, but clear.
His words stung. I was preparing my ammunition to bombard him when he reached out and took my hand. “Yes, you put Emily first.” He squeezed it and pulled me closer. I wasn’t expecting tenderness in that moment.
“And you know what?” he said. “I understand.”
I looked at him, this man who’d stood by me and Emily all these years. So many mothers of children with special needs had been left by the child’s father at some point, creating fractured homes and lives. Either that, or both parents agreed to have the child spend time away from the family in a specialized residential setting. Though we’d often fought, had not always seen things eye to eye, had struggled with and against each other to get our individual needs met, had seen our hopes and desires as humans greatly limited by our circumstances, Tom and I stayed side by side throughout. We’d both chosen Emily’s needs over our own.
“I understand, Valerie. I know why things needed to be this way. It’s been hard. There’s no question. While I wouldn’t change a single thing, I just need you to know this: it’s been hard on me, too.”
I stood and pulled him up from a seated position, wrapping my arms around him. He was right. I had always put Emily first. He’d stayed on board with me—with us—despite that. He was a great man. There could be no deeper form of love than to prize together with someone the brightest light in your life, even when doing so was painful to both of you.
“I love you, Tom.” I buried my head in his shoulder. “I love you.”
New Year Resolutions
I have so much I aim to accomplish this year. The goals vary a bit from personal to professional. First. I want to write a collection of poems. I already have so many.
A personal goal is to go on a date. That’s top of my personal list. It’s more fantastical than attainable and I have accepted that. To make that happen, I would have to meet some boys who are on the spectrum, then actually find one I can tolerate. Haha.
Other small goals include trying new foods. I always eat the same things. I want to expand my palate. And I’m hoping to start an exercise regimen.
I want to dance with a boy. I think it can be simple. One song, a slow dance. Like in those high school movies.
I maybe want to sing karaoke. I can’t really sing. It’s more about putting myself out there.
I also want to learn more about the law. It’s what both my parents did and I’m so intrigued by it.
I also want to visit the temple more. I don’t really know anything about being Jewish. It’s part of me so I want to learn more.
I like this list a lot. It’s got some challenges and hard-to-attain goals. But it also has items I can achieve and things to enrich my future.
There were two attitudes shared with us early on in this journey that for a long time I was urged to believe to be true. The first was that we could only access educational programs for Emily once her behaviors were under control. Looking back, I can see that reasoning was faulty. We really never bought into that, although it was promoted by the educational system; we continued to demand that she be fully included in school. Clearly, it was the right decision. As we have come to recognize, even when Emily’s behaviors were problematic, she was still learning and growing intellectually. Had we waited until her behaviors were completely in hand, she never would have learned what she did, or had the breakthrough she had.
The second was that of many of the professionals we consulted, that if we pursued any type of augmentative or alternative communication like FC, letter boards, or sign language for Emily, she would never learn to speak. As it turns out, Emily may never “speak” in the traditional sense of the word. However, her use of FC has released her voice, her thoughts, and her opinions, which hitherto had been completely impossible. Do not be afraid to try these modalities.
For all her ability to communicate, though, we still have reason to worry. We don’t know what’s going to happen to her when Tom and I are gone. We’re no closer to a solution than we were before she could type. Yes, communication was key to showing her abilities and breaking down much of her frustration, but it’s not the total solution. She still needs a world that understands her and accepts her means of communication. Navigating daily challenges, even those that are routine to many of us, such as ensuring the drugstore fills a prescription correctly or making an in-the-moment decision when an ingredient for a recipe is not available at the market, may well remain challenging, as they are even for many who are not neurodivergent. She will still require support in some form to navigate life’s daily tasks. Emily’s inability to express herself verbally with the same specificity with which she types will continue to lead to misunderstanding—or not being understood at all.
Looking back from this place where Emily not only can communicate with us but has found personal agency, creativity, and genuine, abiding happiness, though, it’s hard to remember the struggles it took to get here. Like a woman forgets the pain of childbirth when she holds her beautiful infant in her arms, I cannot recollect with complete immediacy the struggles, frustrations, and anger that composed our lives until August 6, 2016, when our world changed.
When Emily first wrote on the iPad and we took her to be seen by her neurologist, the doctor proclaimed Emily’s typing “a miracle.” We heartily agreed and hoped that it would make a huge difference in her life. It has. Yet we both still hope for another miracle. Dare we be so greedy?
“Am I crazy?” Tom asked me recently. “I still haven’t given up hope.”
WE’D LOVE FOR Emily to be able to express herself verbally. We’re not there yet and we may never get there. For now, though, she keeps moving toward a life of increasing independence. One day, we’d like to see her make decisions on her own about her life, break free from other people guiding her choices, and fully experience her own agency and self-determination.
“Could she ever live independently?” Tom asked rhetorically. “I have to be realistic. I’m concerned about her safety. I don’t want her to be taken advantage of, or put in a situation she can’t handle. She’s not an initiator. That may be why she doesn’t pick up an iPad and start typing on her own. Maybe part of it is just her disability. Whatever our expectations for her, they’re all marked with an asterisk. What does it mean for someone who has her issues?”
We’d both like her to experience the breadth of human interaction, to have life experiences like going to bars with friends, taking trips with girlfriends, falling in love, expanding her relationships, unbridled by and less dependent on others—and on us.
After the iPad breakthrough, we have come to believe in miracles.
Now we fervently hope there are more to come.
If you had asked me ten years ago where I saw myself in five, I probably wouldn’t have answered. If you had asked me five years ago where I saw myself in two, I probably wouldn’t even have a guess. And if you asked me two years ago where I saw my future taking me, I probably couldn’t have anticipated the things I would do. But ask me today where I see myself tomorrow, in two years, even in ten.
Well, let me tell you. Every day is an opportunity for betterment, for growth. Every year is a chance
for bittersweet reflection. Every time that someone imposes the question of a future you don’t know yet is a moment for self-fulfilling prophecies to be birthed and unnecessary baggage shed.
I once dreaded the question, feared the lack of wholeness that the years to come would deliver at my doorstep. But now I know, truly understand, the importance of such a question and the emotions it stirs in the individual who is expected to answer, expected to know. At last, that this the effect of such a question for the person on the receiving end, a not-so-subtle way of asking “What the hell are you doing with your life?”
Nobody knows, none of us can fathom the grand possibilities, the trauma that can so suddenly alter your world in a flashing second, the relationships of family and friends and mentors that can blossom overnight, or die just as quickly. Nobody knows. None of us do.
What I do know is that we are in control of our own destinies, we hold the power to conquer and climb from the holes that someone else dug for us. For some of us, the hole is so deep into the earth that water seeps in, attempting to drown before the surface is even visible, that a climb seems beyond impossible.
I am with you. I have made that slippery ascent, losing my grip at times, falling to a place below at others.
I am with you. I have squinted my eyes in attempt to foresee the end of the struggle.
I am with you. I have begged my body to carry the weight that my mind could not.
I am still climbing myself, but what has changed is my perspective and my mentality, two difficult things to alter. If not for this, my questions for tomorrow and the future beyond would be muddy and dank, just as the climb has potential for being.
So now when asked, although I cannot predict the specifics in fine details, what I can say and know is that I am ready. I am able. I see myself continue the climb, continuing to conquer. I am one to move forward, and in large strides. So that is where I see myself, tomorrow, in five years, in ten. On the move. Constant motion, always progressing.
Poetry by Emily
ODE TO AUTISM
Oh, autism.
You are my bane and my blessing,
The hoop that I must jump through,
The climb that gives me confidence.
My confidante and contender,
Battling constantly for control,
But always giving in to my fight.
You exaggerate everything and
Enhance anything and
I feel the world deeply because of it.
The sensory’s of life
Are unmatched for my system
And it filters close to none.
Your grip on my movements
Cannot stop me though,
From continuing to walk my path.
Our existence is one and not two,
For you are me
And I am you.
TRAPPED
Covered in blanket and sheet
A dream whispers out of head
Leaving as quietly as it arrived
But dreamy residue is left behind.
Just enough to twist the mind
And more than enough to terrify.
No sweet dreams of cloudy visions.
No sweet sites of a sleeper’s eye.
Instead creeps forth a darkness
A chill
A sense of overwhelming doom.
It moves in slowly, gently
Almost as if a welcomed friend.
Cradles a motionless body
Still wrapped in comfort of sleep
And comfort of dream
And just as sun begins to wake,
With it my eyes want to do the same.
But darkness looms, and
Panic. In body, breath and bone.
Trapped. In the vessel of my own.
Wake up. Wash the sleep away.
Trapped. Blackness turns to grey.
Wake up. Dread closing in.
Trapped. Trapped in my own skin.
Panic.
Figures they do form
In the visions of my mind.
Caught between sleep and wake.
Caught between real and fake.
And even if i wanted to,
Paralysis won’t let me move.
Frozen still under sheet,
Nightmarish faces dance towards me.
Heart is racing in my throat
And terror consumes this bedroom now.
Panic.
Scream.
A breath escapes. I gasp for air.
Eyes flash open
Brightness sneaks in.
The darkness creeps away,
Leaving as quietly as it arrived,
Nightmarish residue left behind.
More than enough to tire my mind.
And now the question with which i am left;
When will i be trapped again?
PHOTOGRAPHIC MIND
The place time has frozen
Faces even remain the same
Pictures in my memory playing time the fool.
Forage through the images
Taking me by surprise
Pouring out like water
Imagination is what’s real
Real life stopped, preserved in just glimpses
Hope lingers lasting
Pictures never fading.
Frozen images frozen time.
ARE YOU OKAY?
I know my name, but that wasn’t your question. I can let the syllables slip off my tongue but some may not understand.
Emily. Emily Faith Grodin to be exact.
I know what you want, understand the request. But often as not my body will choose to do what it wants, and not what you do.
I don’t know what’s wrong, why don’t you tell me. Perhaps the political state, or the fact that our planet is dying. I can think of a myriad of things, but if you’re asking of me, you’re asking the wrong thing.
Oh, should I? Should I calm down? You must think I enjoy losing control. Must think I don’t want that peace too.
And oh, is that too loud? Me? Too loud? Try hearing it from inside my own head. Try hearing life from inside my head. The ringing phone, a passing plane, my own pounding heart, beat beat beating away. Then you might truly know loud.
I don’t know what I need, or even if I do, how do I make it known? When I have no way to form the words. Cannot properly plan the steps it would take to get it myself.
And here come the choices. So few choices for such a complex human being.
How very unlikely that one of those three things is actually what I need. Ah, but here come some more, too many more. And soon I am swimming, drowning, in the choices you’ve given me.
Sure, I’ll try again. I’ll try again, and again, and again. Because I want to succeed, and I comprehend the details. But when I cannot do what you’ve asked, you will think that I don’t understand. What a false representation of me.
No, I’m not okay. I am struggling to say the words, fumbling over the movements. What about this is okay?
Tell me, what about this is okay.
HEARD
People on the streets
Who need their messages to carry
Whether peaceful
Or radical
Whether silent
Or screaming.
A voice is a voice
Whether calm
Or desperate
And a message holds no meaning
Unless it is heard.
Do we hear them?
I ask you,
I ask myself.
Because I know what it’s like
To not have a voice.
When I was peaceful
Or radical
If I was silent
Or screaming.
My voice was a voice
Whether calm
Or desperate
And my message held no meaning
Unless I was heard.
People on the streets.
I want their message to carry
Because humans are peaceful
Until we become radical.
When we are silenced
We scream.
Our collective voice is a voice
When we are calm,
When we are desperate.
And our message hold no meaning
Until we are heard.
TALKING SANDWICH.
Make me a sandwich
Yes, with mustard please.
Listen, I’ve been thinking.
Sure a pickle would be good.
Really though
We should talk.
Lettuce?
Fine.
No. No mayo, thanks.
Trying to cut some extra calories.
Please just hear me out,
There’s something I should tell you,
I am going crazy keeping it inside.
I . . . what’s that?
There should be some behind the milk,
Look next to the leftovers,
Yes, I agree it’s not worth eating without cheese.
All sandwiches need cheese.
I’m just going to get this off my chest,
Should only take a moment.
Cut in half is fine.
Chips?
Fine.
Will you stop with the goddamn sandwich already!
I need to tell you something!
You know what?
Forget it.
No.
Lost my appetite for some reason.
Yeah . . . help yourself.
SHOELACES
Life is easy through the eyes of a child
Possibilities are not taken for as expectation
Incredible bounty of curiosity running wild
Moved only by sweet temptation
Learning each day to greet the shining of the sun
With its warmth full of rays do glisten
I Have Been Buried Under Years of Dust Page 20
