I wanted to share that experience with Emily.
Though the inspiring passage I’d treasured mentioned early morning as the time to visit, I’m afraid we arrived a bit too early. French “early” was clearly not the same as the American version. We arrived around nine and the rue wasn’t going to fully come awake, we learned, until ten. Still, we sauntered the region’s cobblestoned streets, most of the shops not yet open. Tea shops and sweetshops and just about every type of food could be found there. At one point I hung back a bit and watched my daughter make her way down this little French passageway. She was just so curious about everything she saw. Emily was absorbed in the world and this treasure it presented to her. As I watched her stroll, Emily kind of took charge, leading the way, enthusiasm in her step. She wore a cute little dress and the hem of it swung side to side as she walked. You could almost call her stride a swagger. She was the Pied Piper, leading Tom and me through the streets of Paris.
Without Stephanie on hand we couldn’t ask her to tell us in detail how she was feeling and what she wanted, still her countenance said it all. She was ecstatic, happy, grinning all the time, and so very easy to be with.
Of course, throughout the trip Tom and I continued to be wary, wondering what might come to pass that we were not expecting. How could we not worry? There is not a day when we do not hold our breath; that’s just our reality. It’s not that we don’t trust Emily to do the right thing, we just know that her disability is still an issue—although increasingly it has not been, or she’s been easier to talk down when it is. We still looked at each other and looked for signs. We still asked each other, “Is Emily okay?” We were always mindful.
Now, though, in this one moment on rue Mouffetard, I took the joyful moment for what it was. A chance for us to be together as a family, to be relatively carefree, to be abroad and to be happy.
Stephanie arrived a few days later and we all went to the Eiffel Tower. There was a lot of confusion around which elevator to take, and we were kind of crammed in the one we’d found when someone announced, “This elevator is not working.”
I was the first person to hear that announcement and the nearest to the elevator door.
“Come on, let’s go.” I tugged at Emily and Stephanie. We tore off across the landing to another elevator, Emily laughing. Tom decided the cramped elevator conditions were not for him, so he stayed behind while Stephanie, Emily, and I boarded another elevator and got the best viewing spots possible.
After, we went across the river to the Right Bank to get a picture of Stephanie and Emily in front of the Eiffel Tower from the perspective of the Trocadero. You have to be that far away if you want the whole tower to show up in the picture. I’d brought the girls red berets and bright red lipstick for this moment. They glowed and laughed and it was all I’d dreamed of.
After the Eiffel Tower, I asked Stephanie to take out the iPad. “Let’s see what Emily has to say.”
Emily let us know that she didn’t want to write in that moment, that she preferred to simply soak up the experiences while they were happening. Later she typed that she was processing everything and wanted to figure it out.
ON ONE OF our last days in Paris, we returned to the Champs de Mars area on the Left Bank, to wander through the lovely tree-lined streets. Stephanie had not yet seen the Champs-Élysées, a must for a first-time visit to Paris. We were aware that the Tour de France was coming through later that afternoon, around four. We’d be out of there in plenty of time to avoid the street closure issues, or so I thought.
We walked across the river and wandered among the crowds lined up on the Champs-Élysées who were excited to watch the last leg of the Tour de France. When we’d had enough and wanted to return to our hotel, which was located on the north side of the Champs-Élysées, we realized all the crosswalks back to the north had been closed in anticipation of the arrival of bikers. We couldn’t figure out how to get to the hotel. First, we tried a taxi that drove every which way but didn’t get us any closer. The taxi driver kept traversing the bridges on the Seine. It was driving us all crazy. After a forty-five-euro fare, we ended his misery and ours by getting out on the Left Bank, at the Pont Neuf. And at that point, Stephanie pulled out her cell phone and she and Emily consulted each other. Then the girls took over and mapped our walk back to the hotel.
“Follow us,” Stephanie said as she and Emily took off like bullets. The only reason we could keep up with them was because Emily’s mane of hair kept bouncing ahead of us, showing us the way. Every time Tom and I thought we knew the direction we should be heading in, it turned out we were completely wrong.
By then, thankfully, the heat wave had broken so we weren’t dripping wet. Together, Emily and Stephanie got us back to the hotel, safe and sound.
LONDON VIA THE Chunnel was next. There were a lot of people on the train and I explained to her where we were.
“Emily, we’re under the water.” Emily was excited about this next step in our adventure and taking it all in.
“No, we’re not,” Tom said. “We’re not there yet.”
The lights were dim and I was pretty sure we were beneath the channel and I said so again, repeating myself.
“We’re not,” he countered.
Then the light in the train suddenly got brighter. “Oh, I guess we were under the water,” he conceded. We all laughed.
Stephanie carried with her a pair of Bose sound-canceling headphones she’d borrowed from her boyfriend. When she saw that the sounds of the train and all the people were agitating Emily, she held them out to her.
“Emily, you’ve got to listen. It’s so quiet.”
Emily shook her head. I’d tried for years to get her to use headphones to soften the cacophony of the world. She always turned me away. This time, though she initially protested, she allowed Stephanie to snug the headphones on her. As soon as the sounds were muffled, the noise of daily life softened a bit, and Emily’s face cracked open. Her eyes almost popped out of her head. It was like she was in another world, a world made more comfortable just for her.
LONDON WAS A jewel of an experience for Emily, from start to finish. We saw and did everything she wanted: Big Ben (though it was covered up for restoration), the River Thames, the Tower of London, Westminster Abbey, Buckingham Palace—she was particularly taken with the state rooms there, and surprised by how modern everything was.
Every morning at the hotel buffet breakfast, Emily went to town. Bacon, eggs, croissants, yogurt, you name it. The chefs somehow managed to pile fried eggs one on top of another, so that guests could remove an egg or two to put on their plate. Watching Emily struggle with the slippery eggs, and laughing at herself trying serve them, was delightful. She was having fun, taking things easily, not stressed at all.
WE HAD TICKETS to see a matinee performance of Come from Away at the Phoenix Theatre in the West End. That morning found us at the Churchill War Rooms. After spending considerable time engrossed in the exhibit, I realized we had some time before the theater. Westminster Abbey was nearby. We might just have time to fit it in.
“My young adult daughter is disabled,” I said to the person at the information desk. The admission line was very long. We’d never make it. “Is there any way we could be permitted to go to the front of the line?”
“Do you have proof of disability?” he asked. I don’t usually use Emily’s disability to ask for special treatment and now I felt bad that I couldn’t prove anything.
“No. We’re from California. She has autism.”
“Oh. Okay. No problem. Go over there.” Thanks to that kindness, we got in in record time, which was a good thing because Westminster Abbey was one of Emily’s favorite places on that trip. She later told us she wished we’d had more time there. And more time to eat pub food.
Of all the sights we visited, churches like the Abbey were her favorite. She loved to sit in a church and grow still and quiet. She looked around and took it all in. The coolness, the peacefulness. It’s funny: she
loved churches the way she did not love synagogues. First of all, you can walk freely into a church. These days, you can’t do that with synagogues anymore. They’ve become armed encampments. Whenever we travel, we find Emily drawn to churches. The same was true in London. The art, the vastness of the space—they tend to be very tall. Emily sat in church after church, in awe, in a kind of prayerful or mindful mood, at peace.
Everything about this trip was the opposite of the chaos of Ireland. Communication had changed the experience in the ways I’d long hoped. While Ireland had been my “hoped for” trip to expose Emily to a world I had experienced as a child, it had failed to live up to my dream. This European adventure, by contrast, was everything and more.
We saw in intimate, daily detail how Emily had changed and we appreciated how much better we could now relate to her. She was so thoroughly engaged in every aspect of the trip, albeit cautious in her commentary, waiting to express herself at the right moment. It is impossible to express the gratitude that Tom and I felt at seeing her so absorbed, loving every minute of the experience we had so carefully planned. The failings of the Ireland trip faded into memory, so overwhelmed were we by the sheer joy we experienced in Paris and London.
THE DISTANT SELF
“Doesn’t it all seem so distant? As if a different life lived?”
I ask myself in response to her question.
Her question of something so present,
So grand in my happenings,
But today in this moment which feels so far away.
Perhaps it’s the thousands of miles which span between myself and the mind that writes tirelessly of life and the events that have led to this very second.
It all seems so very distant.
Maybe it’s the oceans and channels and state lines that separate me from myself in a different time and space.
I heard her question, know what she refers to, understand that it’s my turn to speak.
But oh, how distant it all seems.
A life that exists on a different continent, both in truth and in feeling.
I reach for it, but my fingertips fall so short of that for which I try to grasp.
The question rings in my head, unanswered and unattended.
For I fail to see how a life so full, so rich, so pristine can feel and seem
So very distant from me.
I feel her hand at my shoulder, a gentle pull back to reality.
She smiles, patiently awaiting the response that I don’t currently possess.
And all that I can manage,
All I can express,
“Doesn’t it all seem so distant?
As if a different life lived?”
Epilogue
Because I write with such clarity, the world wonders why I cannot speak as such. Where I’m from words are celebrated and shared with one another. A book is read at each days end to experience the power of language together. Their messages are discovered in the imaginations that listen. But they still inquire about how I know the things I know.
If I said that differences are accepted and quirks are what make a person human, that there is no trait too odd or too strange or too difficult, would the world wonder how I have been taught to find beauty in myself? How I have learned to find peace in my own experience?
Where I’m from the smells of a home cooked meal is embedded in my nostril. My plate is always full and overflows with unspoken affection. A full table that surrounds me in the comfort of a shared meal and the comfort of my protectors.
Where I’m from Hebrew is heard in foreign and throaty tones. To me it is mostly unknown but a reminder of my roots. Heritage is an excuse to partake in nostalgic traditions and pass plates from one to the next. My blood tells me to be proud in the memories of generations gone.
Where I’m from it is dire to stand up for yourself and defend those in need. To march and to advocate is not a choice, it is crucial and a responsibility. It is okay to change the narrative. It is okay to rewrite the definition if it is false or loose or misleading.
Where I’m from there are sounds that travel through the body and lights that feel like hot beams on my skin. Words like ‘stimming’ and ‘behavior’ and ‘meltdown’ are tossed around like they aren’t used to define me. But luckily where I’m from a person can separate themselves from stereotypes and common beliefs.
After our joyful European adventure, daily life continued, and though Emily could now communicate via the iPad with us and the people around her, and her world had opened up in a huge way, so much was still as it always had been—the rest of society ready to persecute those who are different, sometimes harshly.
Her creative writing class was getting ready to end and a classmate used the final assignment to ridicule and mock Emily. Each person was to present a story to the class. One young man wrote about an autistic friend and how the narrator of the story decides it’s time to get the autistic boy high via pot brownies. The friend then uses the occasion to tell the autistic boy all the ways he is not normal and not okay, detailing how the traits the narrator doesn’t like are all the boy’s own fault. By the end of the story, the narrator says he hates his friend and calls him “you autistic fuck.” All this, read aloud in class while Emily sat there.
Of course she was upset by this story and she wrote to the professor.
I am trying to understand fully the words I heard in Michael’s story yesterday. The story was blatantly offensive and distasteful and I am disappointed greatly in my peer. I have the desire to advocate for my community where they cannot advocate for themselves . . . I believe that words are powerful, stories can be powerful, and to use them in the way that he did is to contribute to the misconceptions and non-acceptance of autism.
Emily and the professor came up with a way to address the issue via Emily’s own presentation on the power of words. Together, they decided they’d “teach those who are less compassionate.”
I wondered if that presentation changed this young man’s anger and venom toward people who are neurodivergent. I don’t know.
I do know that the experience pained Emily greatly and yet she rose to the occasion with grace and dignity. I wish I could wipe out the stigma associated with autism. In Emily’s lifetime that may come to pass, but not likely in mine.
NOT LONG AGO, Tom and I were arguing about something fairly minor, having a disagreement over a contractor we’d hired whose work I found to be unacceptable. I was planning to fire the person but Tom didn’t want me to. I could not let the issue go, and as with many seemingly minor matters, I continued to press the matter until Tom ultimately had enough and he pushed back. Soon, the sparks started to fly.
This dispute devolved into a critique of our marriage, and suddenly, instead of arguing over the contractor, we were talking about our partnership. Arguing, really, about our relationship.
As a younger couple, we’d both been frustrated when we realized that Emily’s needs and our responsibility to her was putting us on a life trajectory different from almost everyone else we knew. We’d gone into parenthood with certain expectations. Based on our own upbringings, our educational and professional accomplishments, we’d assumed our child would attend a private school, that we would expand our network of friends through her, that she would have friends who came over to play and later hang out with as they grew. Her friends and their families would become our friends, and so our circle would grow and grow. We also expected to have more children.
None of that happened. Our circle did not grow, and we did not have more children. That decision had been agonizing. We’d been waiting for Emily to become verbal to consider a second child. Despite genetic testing, though, we had no way to be sure that lightning wouldn’t strike twice. We knew we didn’t have the bandwidth for a second child with autism. We had been older parents when Emily was born and taking care of her had stretched us to our limits. Adding to that sadness, we found the boundaries of our world had closed in on us. Even those families with special needs c
hildren we came to know were not very social—ourselves included—because the unpredictable behavioral challenges of our kids always had us on edge. We operated in a very small universe, focused on Emily and struggling to sort out her needs. I can’t speak for other families, but that is what happened for us. We each had our work life and connections with colleagues that, fortunately, provided some diversion from the concerns we faced at home.
That we’d had a limited social life was probably the biggest strain on our marriage. With so little feedback from anyone who could understand our challenges, we could only bat our issues around with each other. We did not pursue hobbies and other interests outside of raising Emily. Our lives had become incredibly straightforward: work and Emily, which put a lot of pressure on the relationship. And now, it was all coming to a head.
“I’m very unhappy,” I said to Tom. “I mean, at this point, of course we’re going to stay together, of course we’re in it for the long haul. Still, I’m sad and lonely a lot of the time. This is not the partnership I dreamed of.”
“Believe me, Valerie,” he came back at me, “you’re not the only one who’s unhappy. This hasn’t exactly been what I was signing on for either.”
I was a bit shocked to hear him say that. All these years I was sure I was the only one who’d struggled with these feelings. He seemed happy enough within our marriage, content with so much that life had given him. I’d been so caught up with my own wishes and desires, I thought he didn’t have any of his own. I believed he was satisfied with the status quo. Now, nearly three decades into our marriage, I was learning that he wasn’t.
“You know that I have done everything in my power to make our marriage work,” I said defensively. I felt like I had used all my energy and more to make this life of challenges work for all of us. It was a tough balancing act and I had always done what I could to create a happy family life and a lovely home. I wanted my work acknowledged. Tom had made sacrifices, too, but I wasn’t in the mood to be generous and acknowledge them.
I Have Been Buried Under Years of Dust Page 19
