Eileen Flood OConnor

@eileenfloodoconnor | contributor
I am a writer and mother of four, the oldest of whom has an autism spectrum disorder. I write often about the joys and challenges of raising a special needs child as well as parenting and life today. I live outside of New York City with my husband, kids and two labs.

Why We Grieve Over Other Family's Tragedies

In early January a tragic accident occurred during a hockey game at my sons’ school. In the midst of a most ordinary play, a 16-year-old player sustained a fatal injury. The incident left teachers, coaches, and parents from two schools and their surrounding communities reeling and wrestling with how to support, speak, grieve, and move through the unimaginable. “How is your son doing?” a friend asks. Her answers are as uncertain as mine: “He seems OK. I don’t know — it’s hard to tell.” My teenage sons don’t share much on a good day. In the hours and days that followed their retreat was swift and palpable. “Stop asking questions,” my husband advised. “They will talk when they are ready.” Will they? I worried. “They won’t say much but they will want you close,” said child and adolescent psychologist, Darby Fox. “Not to gender stereotype but with boys particularly it’s common not to want to speak about it. Talking about it keeps it fresh and they don’t want to dwell on something that is out of their control.” Her words remind me of Lin Manuel Miranda’s meditation on traumatic loss, Quiet Uptown: “There are moments that the words won’t reach, There is a suffering too terrible to name, We push away what we can never understand, We push away the unimaginable.” I see and feel my boys push away. When we learned the extent of the player’s injury, I went to give my son a hug. “This is not about me,” he said, pulling away. A few days later when I told my husband I could not stop thinking about the boy and the family and considered writing about it, he echoed my son’s response: “This is not our tragedy.” I understand what they are saying. We have been at the heart of sudden loss and I know this is not where we stand now. We did not lose a child, but someone just steps away did and it’s impossible not to feel the shock and sadness emanating from the center. My heart is broken for a mom and dad whose son left for school on an ordinary Thursday and never came home. I realize, as a parent, I see this, like everything else, from a different perspective than my kids.  Grief and spiritual counselor, Andrea Raynor, explains how a tragedy like this affects everyone differently: “Parents are grieving on multiple levels. In shared heartbreak, they grieve for the parents who lost the child, for young boys who may feel responsible, and for their own children who may have been traumatized by the accident. They may also be experiencing a new and vivid fear for their children’s safety. The unimaginable has happened. As parents, we feel vulnerable, terrified, and so deeply shaken.” This is true. Part of what haunts me is that this tragedy occurred in the midst of a very routine yet joyous activity: a high school game, a moment of play, an event that draws kids and parents together to compete and cheer on rinks, fields, and courts every day in every town across the country. Parents and participants alike are not naïve, they know that injury is always a risk — but no one can ever anticipate or prepare for this. My sons were visibly shaken when they told me about it. They have friends on the team and friends who were in the stands. Two of them were just outside the rink when it happened. They saw the ambulance pull away. It feels irresponsible not to speak about it in some way. While acknowledging that the boys may be in shock and not ready to talk about it much less process how they feel, Raynor notes: “It is good to check in with your kids occasionally. That’s also our job as parents as annoying as it can be. It shows we recognize they have been through something hard, that we have not forgotten the boy who died, his family, or the other boys involved.” Over the days that followed I asked if they had heard anything from their friends or from school. I asked how the players on the team were doing and if they knew any of the boys who were there. “It doesn’t matter,” my son responded, angry and frustrated. “I know,” I said, realizing he knows it could have been anyone. Any player on either team. Any parent in the stands. It could have been anyone. My sons did not know the boy who died. He played for the visiting team. He had a big and beautiful smile. Social media allowed us all to see that smile, to see his number five emblazoned in tribute on the backs of professional, school and club hockey players, to learn small details about his life and to learn and relearn the details about his death. In a gesture of profound empathy and grace, the boy’s parents requested that the original, widely publicized account of the accident be corrected to more accurately reflect what happened during the game. They wanted to clarify that what occurred was a “tragic accident” and that no one was at fault. In the midst of unspeakable grief, they were thinking of the other boys competing with their son in the moment, the players on both teams, all the coaches, trainers, and parents there that day. This is not our tragedy. This is another family’s tragedy and at a time when they could have closed ranks, focused only on their son, their family, their grief, they did not push away — they made the effort to think of others struggling in the wake of their loss. This made a deep impact on my sons and as it turns out this is what we have talked about most. The boys shared: “The parents wanted us to know it was an accident.” They told us how they all signed a book for the family and that they will wear number five on their team uniforms this winter and spring. They know none of this brings a young boy back to his parents, his teammates, his friends — but it’s what they can do and that’s what they’ve talked about. I know there are no adequate words to address or process this or any tragedy that lies ahead. I know we can’t help our kids avoid loss, pain, and sadness. Maybe all we can do is turn our attention to the good, the beauty, and the light that shines through in the darkest of times. As my boys have been trying to tell me all along: there are no words — only kindness, camaraderie, empathy, and grace.

Community Voices

Running to Believe

I ran this year’s New York City marathon to raise funds and awareness about an incurable, #RareDisease which affects someone I love.  I think the enormity of a marathon made me feel like I could do something more than just sit on the sidelines. The training and planning also provided a distraction from the fact that life is often not ideal and always very much out of our control.

My friend’s daughter, Annie, was diagnosed with #FriedreichsAtaxia, a degenerative muscle condition at the age of nine. Now a high school senior she requires a wheelchair full time.  Despite her parents’ herculean efforts to find a cure, medicine and miracles take time.  Anyone living with a progressive disease, however, knows that time is not a friend and its relentless progression leaves all standing in its wake completely gutted.

There is nothing worse than seeing someone you love suffer with no recourse to prevent it. Two years ago I watched my dad slip away to #Dementia. My daughter, 20, who has autism struggles with the simplest of tasks every day. We are all bombarded by constant reminders that we don’t get to write the script.

Leaving it at that though leaves little motivation to get out of bed – generally not an option when there are kids to feed, dogs to walk, jobs to do and marathons to run. Much has been written about the grit and resilience required to weather tough times, less about the game of smoke and mirrors and the mental strategizing necessary to get up and plow through.

With my daughter I hyper focus on the small details that make the day better (a new skill gained or a joyful mood) because trying to wrap my mind around the larger picture (what she will be doing in ten years) takes my breath away. So I highlight the small moments and victories. And as a host of behavioral therapists have taught me, I break down the big stuff into manageable pieces.

In early June I printed out an 18 week marathon training schedule.  Day by day I checked off the miles. Every now and then I’d glance ahead at the long runs. Landing on a number like “14” I’d quickly retreat back to the day at hand. I learned it’s hard to think about big numbers when you’re focused on breathing, hydrating and stretching, avoiding cars and uneven pavement or studying the sunrise and leaves starting to turn.

Throughout New York’s 26.2 mile course I repeatedly encountered bright yellow Ted Lasso inspired signs emblazoned with the word: BELIEVE.  They appeared in every borough, held high by people of all ages, from all walks willing runners to believe that we could keep going and one mile at a time that we could wrap our hearts and minds around the big stuff.

Maybe it was dehydration but just like that right before the 59th Street Bridge (mile 13) my dad showed up cheering from the sidelines. My daughter was home working on college applications.  And Annie’s biggest concern was making it to a field hockey game on time.  Maybe that’s what they call a runner’s high – the state of euphoria you feel when you’ve pushed yourself to believe that for a few hours on a sunny Sunday in November the world is not spinning out of control, everyone you love is ok and you get to rewrite the script.

Community Voices

My son is 32 non-verbal. Yesterday he had a really bad day. He was grabbing anyone around him and banging his head on the walls and biting himself.

#Autism What can I do to help him?

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What My Daughter With Autism Has Taught Me About Winning

As Simone Biles debates wage on social media and across dinner tables everywhere this summer, I’ve been distracted by another young woman who I know would understand and salute Biles’ decision to give herself a time out. My daughter, Erin, who has autism, does not care about the Olympics or gold medals, but she knows what it takes to practice self-care and to be happy. When Erin was born in London 20 years ago, I imagined that maybe someday she’d win Wimbledon. I grew up playing competitive tennis so it seemed an entertaining speculation. Little did I know how much this child had to teach me about what it means to win. Since she could hold a marker, Erin has been practicing how to write her name. While it’s still a work in progress and I have faith she will get there, over the years Erin has taught me that knowing how to write your name is not as important as knowing your name — and the names of the people you love. When Erin meets someone named Tommy, she lights up and says, “We have a Tommy,” referencing a childhood friend who lives next door. She’s also eager to learn the names of all who cross her path. As she studies the person at the Stop N Shop checkout she never fails to ask, “What’s your name?” Men and women on the other side of counters everywhere look up, somewhat perplexed, smile and reply, “And what’s yours?” Erin knows her name.  She knows what she likes, what she doesn’t and where she wants to be.  If the day is not going in the direction she likes, she has been known to stage a sit-in. As much as this tactic drives me up a wall at times, I have come to admire her resolve and sense of purpose. Erin has taught me if you are not happy with the moment, do whatever it takes to change it.  She understands that when you are feeling sad or overwhelmed, it’s OK to just sit on the stairs — her s ignature move. As much as Erin inspires introspection, she’s also taught me to embrace exuberance and spontaneity.  She’s taught me to celebrate the small things, like hearing your favorite song at CVS.  She’s taught me to track the days by the people we might see and to mark the months by the birthdays and holidays they hold. She’s taught me it’s OK to jump up and down when you are happy and there is no right or wrong time to hug someone you love. At one point, in an entirely pre-COVID exercise in personal space, Erin was given a “hug schedule” at school. This made no sense to her and it did not last long. I imagine much of the world does not make sense to Erin. She doesn’t understand the fuss over anyone taking a step back from loud noise and bright lights. She watches her three younger brothers race to school and practice, their moods measured by wins, losses, scores and GPAs. She’s never won a trophy. She has a few participation medals, which hold no weight to an outing with Grandma or sharing an ice cream with Pablo her service dog. For Erin, a trip to the library is a reason to smile, a win is time with someone you love and the stairs a steady refuge on a down day. Unless the All England Club instates an all-tie-dye rule, Erin won’t know or care about Wimbledon. But my girl knows her stuff and she’s taught me well.

Taking a Road Trip With My Daughter on the Autism Spectrum

It’s raining in South Georgia and traffic is backed up for miles. Anxiety mounts as I check to see if our daughter and sole passenger is still napping in the back.  When traveling with Erin, who has autism, moments of peace like this are gold dust, which on a 1200 mile journey, you hate to squander standing still. I’m at the wheel which I stole from Bill at the last pit stop, slipping into the driver’s seat as he waited for a Happy Meal. An earlier music search caused Erin to stir so we’ve settled on silence as we study the tall pine trees that line I-95. Every now and then as the traffic eases and I speed up Bill raises his hands dramatically as if bracing for a crash. Given the silent game, I can’t respond as I’d like.  Instead, I suggest he close his eyes. He pretends to relax but he’s not comfortable with this arrangement. After 22 years, we have our roles and routine. He drives. I play copilot, DJ, sharer of fun facts from random reading material and purveyor of snacks. For a long time, this worked fine. Early in our marriage, we lived in London and spent most weekends exploring the countryside. British accents, idioms and earnest-sounding weathermen were a novelty. We couldn’t get enough of the BBC’s news, interviews, game shows — and “ Babylon” by David Gray. We spent half our time meandering down uncharted paths, slowing down for sheep crossing and the occasional tractor. I’d sprawl colorful maps across the dashboard, reciting the names and history of tiny towns, ancient ruins and rolling terrain from our Fodor’s and Lonely Planet travel guides, all the while reminding him to keep on the right side of the road. “ Turn here. No the second exit off the roundabout. I think we’ve gone too far — but look! This pub is adorable. Let’s stop here.” And we would. We had nowhere to be — and no car seat in the back. So we’d linger over a pint or two and wonder what the rest of our day and days might bring. When Erin and her three younger brothers eventually arrived in surprisingly quick succession, copilot duties expanded to keeping the little people fed, dry and happy. While the boys can now pretty much manage this on their own, Erin, who also has a seizure condition, still requires close surveillance — which adds to the allure of driving.  More in sync with her moods and preferences, I’m frequently in the hot seat, but I find it a welcome and admittedly amusing switch to see Bill take my place. When Erin wakes, he parcels out the contents of the Happy Meal one by one, including a stuffed, unidentifiable object from the movie “Soul.” He contorts to clean ketchup from her face, fingers and chair while she fires off requests for her favorite songs. “Dynamite by BTS, Dad! American Girl! Let it Go!” Bill scans my phone for her selections. Struggling, he tries to distract by pointing out a Target truck. He suggests we switch seats. I decline. Eventually, though, we have to stop, get gas and trade places. I dole out popcorn and Peanut M&Ms as we begin to make up time in the Carolinas. I start to doze off listening to Bill pepper Erin with questions about the Puppy Dog Pals and passing cars. She tugs on my shoulder every few minutes to ensure we are both fully alive and engaged — and the snacks have not run dry. We couldn’t be further from the English countryside and an impromptu pub lunch. I wish we could pay those two kids a visit, pull up a chair and order a pint. I’m not sure where I’d begin or whether any of this should be shared. I guess I’d just tell them to turn up the volume while they can, switch seats every now and then and enjoy the ride.

Sharing My Daughter With Autism's Joy This Holiday Season

Most years I dread the onslaught of early holiday jubilation. The highly wrought cheer and manufactured frivolity only serves to whip my daughter into a frenzy. Erin, who has autism, has trouble self-regulating on a typical day, so the first sign of Rudolph leads to sleepless nights and days of unbridled energy. But after the curveballs of 2020, preemptive holiday revelry has slipped way down on the list of “things that might throw Erin off.” In fact, this year, I found myself rushing the return of reindeer and the 24-hour holiday station, and it was all I could do not to bear hug the life-size Santa in CVS. Erin, like the rest of us, has had to do a fair amount of processing over the past nine months.  In an effort to self-soothe, she recites the names of teachers and aides, friends and family members we have not seen in too long and asks when she can be with them again. As she sifts through this deep loss of connection, the reassuring rituals and familiar sights and sounds of the Christmas season could not arrive soon enough. It’s been a confusing year for kids everywhere — but particularly challenging for those who rely on a predictable routine to ground and guide them through their days.  We tried remote learning last spring, for about an hour.  When Erin saw her teachers and classmates boxed alongside each other on a computer screen she pressed her face to the glass and screamed: “I want to go there!” She didn’t understand why they were “all together,” while she was stuck home with me. Erin did not understand the cancellations, closures and quarantines any more than the regulations required upon reopening.  When a favorite book store welcomed customers again last summer, we were not allowed inside the building, but invited instead to pick up orders at the door. This made no sense to Erin. She’s not a halfway there person. She wants to look and see and touch. She wants to wander the aisles, to discover old favorites and to study the latest version of the cow jumping over the moon. For her it’s all about the process. Erin’s process entails an up close and tangible investigation of the world around her. She does not adhere to the rules of social distance.  When she sees someone or something she loves, she hugs with abandon — and hug our Christmas decorations she did. After a year that barred her from so many people and places she loves, she held on to every Santa, snowman and angel a little longer than usual as we unwrapped them from last year’s news. Even my three jaded teenage boys got in on the act, helping, unasked, to pull the boxes from the shelves — delighted to see the dancing gingerbread man, the singing Snoopy and St. Nick whose head keeps falling off but we can’t bear to discard. They laughed at each other’s homemade ornaments and framed pictures of smaller, smiling versions of themselves. Like Erin, I found myself holding on and looking a little longer at the faces in the photos. Sitting in sandboxes or at the bottom of a slide, they look as carefree and happy as preschoolers are supposed to be. Adolescents seldom smile like that.  This year the divide seems even more stark. Erin is not the only one left spiraling from the past months. As “PCR” and “rapid results,” “masks” and “temperature checks” entered the lexicon and fabric of every day life, much has been written about the anxiety and isolation teens have experienced at the hands of COVID-19. Aside from commiserating, telling them to buck up and to appreciate all they have, there’s not much parents can do. This thing is larger than we are. We all have to abide by the rules and live with the disappointment of waylaid plans and the threat of impending illness. I guess that explains the compulsion to join Erin — and Santa — on the rooftops and in CVS this year and to proclaim that school and sports, concerts and dances may be canceled but Christmas is very much on. This year it’s all I can do to throw open the door, pull up a chair and welcome the season back like a long traveling old friend who reminds us who we used to be, how we can be again and however unlikely it may feel at times that music and light, love and laughter can never be kept at bay for long.

How My Teen With Autism Processes the Loss of a Loved One

Every time my mother arrives at our house, my daughter asks, “Where’s Pop-pop?” She knows the answer but craves the exchange, and its subject. They both do. “Oh Erin you know. Where is Pop-pop?” my mother replies. “Pop-pop’s in heaven,” Erin answers. I don’t know if Erin knows what the answer means. I am not sure I do either, but it’s something she feels she must ask if only to communicate that she’s thinking about him. Erin,18, has an autism spectrum disorder which involves significant cognitive, speech and language impairments. Very often asking a question is her way of making a statement, expressing a desire or sharing an emotion. Until recently Erin had never seen my mom without my dad, who passed away last summer. No one really ever had. They went together like Ernie and Bert, Anna and Elsa and all the other logical pairs in Erin’s life.  For her, and the rest of us, the singularity of my mother’s presence is striking. Something is missing and Erin notes the absence with a question and their well rehearsed script. Unlike my typically developing children, who feel that mentioning my dad might make my mom sad or remind her that he is no longer here, Erin plows right through. She really knows no other way to be.  As the rest of us wade through grief in our own way, I’ve begun to feel that maybe what has been labeled as an “impaired” way of being is less “a deficit” and more a strength, at least when it comes to processing the death of someone you love. My father was diagnosed with an aggressive form of dementia four years ago. The disease took its toll in progressive stages: hallucinations, irritability, forgetfulness. A lifelong teacher, he often mistook my brothers for bus drivers and delivery men and my sons for former students. While he never forgot the love he felt for my mom, his wife of 51 years, there were moments when my mother, sister and I were interchangeable. He never forgot Erin, and their relationship never missed a beat. She did not know he was losing hold of his world. She only knew that she loved him and that they loved so many of the same things: car rides, country music, comfort food. While my dad always embraced Erin’s difference, as his disease progressed, their connection seemed to intensify.  Erin communicates physically. She is big on hugs and squeezes. She hugged my dad a lot and he, never a big talker, hugged back hard. She never grew impatient with his increasingly quirky behaviors. She did not object to his opening and closing the front door a hundred times a day. She saw no issue in his smothering his pancakes in ketchup. She did not mind that he sometimes walked in circles around our driveway and asked repeatedly to go for a drive. She finds great satisfaction in closing open cabinets, drawers and bottle caps, follows no hard and fast rules when it comes to food consumption and understands that sometimes a walk or a drive to no place in particular is just what you need. Erin visited my dad in hospice care at his home. She crawled up on to the bed beside him and rubbed his arm — two bodies always on the go suddenly joined in an unfamiliar but content stillness. She whispered, “ Pop-Pop is sleeping,” and stared as if in a trance. In the moments Erin has seen me upset about my father’s death, she asks, “Are you sad?” She knows what sadness is; for her I believe it is the absence of his presence and the lack of their so very tangible exchange. She seems to process this by conjuring his memory in the mundane moments she shared with him. “Pop-pop likes this song.” “Pop-pop likes sweet potatoes.” “Pop-pop likes blueberry pie.” Like many who live with neurological and language disorders, Erin does not use the past tense. I start to correct her, “ Yes, he likes — actually, he liked — OK, fine, he likes. ” Erin communicates as she lives only in the present and implores all around her to do the same. Erin did not attend the funeral, because it would have been hard for her to sit in the wooden pew and listen to unfamiliar faces lecture about life and love. She would have wanted to leave with my mom and go to the book store. She would have wanted my undivided attention. My attention would have been divided that day. I had to be there for my mom and the boys. I had to deliver a eulogy in which I talked about Erin and my dad. How he never considered her to be “impaired” or to have a “disability” in any way. He thought she was bright, brilliant and funny. “She doesn’t miss a trick,” he’d often say. I think he’s right.

What My Daughter on the Autism Spectrum Taught Me About Empathy

My daughter studies a picture of a boy sitting alone as a group of children play together beside him. The boy looks as if he might be crying. “ How do you think the boy feels,” her teacher asks. “Sad,” Erin replies. Since being diagnosed with an autism spectrum disorder at the age of 2, Erin who is now 18, has consistently reviewed picture boards and social stories to recognize the range of human emotions and how certain words and actions affect others. While autism is a complex neurological disorder, the therapies applied to connect Erin to the world around her are pretty straightforward. Through rigorous repetition she has learned to see beyond herself and to understand the fundamentals  of human relationships: how to share, use your words, treat others the way you want to be treated. These are lessons neurotypical children cover intensely in their early years, but soon fall by the wayside as academic, athletic and social pressures intensify.  They are intangibles — difficult to measure and quantify, challenging to teach and prioritize on a school curriculum. The “results” have no place on a college application or resume. As our country unravels today, it is clear we can not afford to leave the task of teaching children to think beyond themselves solely to kindergarten and special education programs. As parents we need each other to fill the gap. Children are not born knowing how to empathize anymore than they are born knowing how to complete a quadratic equation or hit a backhand crosscourt. As I see on a daily basis, all four of my children need consistently to be reminded how it feels to walk in someone else’s shoes. My daughter’s hard work has taught me that behavior can be modified and empathy learned. The work of raising her three younger brothers, however, has highlighted that a force far stronger than autism comes into play when teaching typically developing children to think and feel outside their own experience. My teenage sons often find it difficult to be with their sister in public. Erin speaks loudly. She does not follow the norms of social etiquette. She is prone to meltdowns if denied a coveted item in a store or if a setting is too loud or crowded. I understand their discomfort. The last thing the boys, and most teens, want is to call attention to themselves in this most unusual fashion. Erin’s lack of impulse control, safety and self-awareness put her and anyone with her in an exceptionally vulnerable position. On a family trip to Florida a few years ago Erin decided she was “done with the plane” mid way through the flight and loudly demanded to get off. As I tried to contain and distract her, a young family in matching outfits looked on in wide-eyed silence. My youngest son later told me he wanted to disappear. As I watch the boys wrestle with embarrassment I know their adolescent self-consciousness is only compounded by a social precedent that expects and applauds strength and conformity — bolstered by a president who employs aggressive and hurtful language and actions to bully anyone he deems “lesser,” different or a threat. While the status quo might see difference as a weakness, I try to help my sons understand that their sister is our greatest strength. Erin has forced them to move outside themselves, to appreciate what it means to struggle through life’s everyday tasks, to understand how it feels to be vulnerable — and to feel empathy. Though they live them every day, these are lessons not easily absorbed. If there is any hope for our children and our nation to ever think and feel from another’s perspective, we must work vigilantly to create a more open minded, accepting and nurturing culture. We must elect leaders who embrace and celebrate diversity, who do not mistake sensitivity for weakness, who see strength in compassion. As parents we must make empathy the topic of dinner and conversations in the car. We must discuss the content of our children’s social media, snap chats, news headlines and books they are assigned in school. We can never stop discerning right from wrong or helping them imagine what it is to live inside someone else’s skin. We can not afford to leave the lessons of Atticus Finch in the courtroom, classroom or playground. I will never pretend to know how it feels to be Black in America today, to be a member of the police or armed forces or to be a parent that has all the answers. But I do know what it is to rely on the kindness of strangers, to look for people and places that welcome difference, to fight for acceptance, inclusion and respect — and I know the fight, the real work  — starts at home and really never ends.

Community Voices

Autism in the Age of Corona

Autism in the Age of Corona

April marks Autism Awareness Month.  As our family enters our third week of quarantine, I’ve never been more aware that I have a child with autism.  This unmitigated time together has magnified our personalities, our quirks, our likes and dislikes, as well as ‘our’ challenges with voice modulation, self regulation and transition.  Above all it holds a glaring spotlight on the powerful role autism plays in our life.

The oldest of our four children, Erin,18, has an autism spectrum disorder, which causes significant cognitive, speech, and motor impairments, behavioral challenges and epilepsy.  The first week of quarantine I started to write an essay on ‘How my special needs daughter prepared me for this pandemic.’  I’ve stopped writing that one. I take it back. Nothing any of us has ever experienced could prepare us for this particular storm.  A friend whose 16-year-old son with autism is climbing the walls and engaging in self injurious behavior just texted: ‘How are we going to get through this?”  I don’t know what to say to her.

As healthcare workers across the country risk their lives to save lives and groups of local moms band together to equip them with meals and face masks, it’s all I can do to keep my daughter quiet and from acting out all of our frustrations while her brothers ‘attend’ school on line.  When my sons first learned that they would be home schooling for an unforeseeable future, their first and only question was how this could work with Erin at home.  They know well the disruption and uncertainty that life with autism brings to our home and our family.

I feel for them and understand their anxiety as intimately as I understand Erin’s complete and utter confusion at this predicament.

Erin does not understand the word pandemic.  She does not understand why her school is closed.  The first day it was cancelled and we were not sure where this was headed, I explained that her school had to be cleaned to keep everyone healthy.  As that day rolled into two and then more, I explain that people all around New York are getting sick from a virus and her teachers want everyone to stay at home so they won’t get sick and can hopefully go back to school again soon.

“When?” she asks.  I don’t have an answer.

Like parents all over the country tasked with navigating this uncharted terrain, I am getting a crash course on explaining the inexplicable to my children while trying to comfort them at the same time. As foreign as the whole mess is, though I can’t help but feel like I’ve been here before.

As my sons lament the loss of their schedules and spring sports seasons, I find myself repeating the words special needs parents have told themselves and their children many times over: “I know this is not ideal.  This is not what we hoped for, but there are not a lot of alternatives – so let’s get on with it.”   My boys have heard it before.  It helps and it doesn’t.

Like everyone else we scramble to regain our footing, to rewrite routines on which we all so desperately rely. Like everyone else, we want to get back to normal. But our normal is not all that normal.

Erin has always required a written daily schedule to get through her days.  Now we are forced to dig a little deeper and to consider what are the things we look forward to – what keeps us going?  Breakfast, lunch and dinner figure prominently, as do walks to town with her service dog, Pablo. Erin’s greatest joy is the library. In its absence, angel hearted friends have left books and ‘surprises’ on their porches and front steps for her to discover along the way. These are the touchstones and bright lights we live for today.  I could not be more grateful.  Autism has taught me an immense lesson in gratitude and how it sustains.

Following Erin’s lead we celebrate sunny days and are getting a jump start on Easter.  Erin marks the calendar year in holidays. On our last trip to CVS, as customers darted around us in face masks, clutching toilet paper and cleaning supplies, Erin debated the merits of a green or yellow bunny eared head band.  Thrilled by the bright displays of Cadbury Eggs and marshmallow Peeps, she was oblivious to the hysteria swirling around us.  She returned home clutching a blue Easter basket and wearing a most carefully chosen yellow head band, rabbit ears reaching to the sky.  Her brothers could not help but smile.

While having a special needs child could never have prepared me for this pandemic, autism has taught us all to appreciate the people and moments that make you smile, to realize that they do not last forever and to understand that nothing – good or bad- ever does.

COVID-19

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It's OK to Be Sad About 'First World Problems' During COVID-19

My son and I were talking yesterday about the amount of trauma and loss the coronavirus (COVID-19) will bring. COVID-19 is the new viral strain in the coronavirus family that affects the lungs and respiratory system, and its quick spread has led to canceled events, school closures and disruption of life as we know it. He is a young adult and is often the one to bring balance to my knee-jerk A or Z reaction to many things. I wondered aloud about the long-term negative emotional impact of this on young folks, as he too was sent home from grad school just months before finishing. We talked about how impossibly hard it must be for so many kids, missing the last months of their senior year, especially because it’s a time where all the reward and fun happens. It was supposed to be when they would say their goodbyes, only to be forced to do so prematurely and in days. We talked about other losses such as a friend’s wedding coming up, and about his sister who works in sports, losing her job. And how in this season of celebration, lots is lost. He is wise, always has been. He offered his perspective that this loss would change a generation, especially a generation to whom nothing like this has ever happened. And he is right. It will. But it will change all of us, even those who lived through 9/11 and other wars. No one is exempt. I am a psychologist who deals with trauma issues daily in the kids I see. Suffice it to say it’s not rocket science to recognize the high-level trauma that will result in this pandemic. On that level, there will be a horrific residual impact and psychic toll for our healthcare workers as they are overworked and faced daily with the existential trolley problem of deciding who lives and dies. The agony for healers who have no miracle drug to throw at this and not enough ventilators for all might haunt them. The impact of exposing themselves to a virus that could kill them could echo for years. Trauma and its slimy insidious smoke will creep into the corners of all of our brains. Many of us will lose loved ones and lose our homes. Children will lose elderly caretakers, and families will face eviction and financial ruin. But that trauma stuff is a story for another day. After this is over. But, where there is trauma, there is the sentinel event of loss. And where there is loss, there is grief. And where there is a sudden shocking loss, there is the ambiguous loss of so many things. I think it’s important for all of us to acknowledge this right now, and spend some of our time while quarantined or distanced talking about it. It will be, as they say, an ounce saved toward a pound of cure. I pointed out to my son the layers upon layers of loss people are experiencing now, and how folks really don’t know what to do with it or how to express it, this floaty/dread/angry/loss/sad/ shock/weepy/pit in your stomach/lonely feeling. People don’t understand that the complex constellation of feelings I just described is grief. Grief for ambiguous losses. We must open some talk about this now. Imagine if you will when a bomb goes off. We hunker, we hide, we deal with the explosion. It is often months later when we come out and start picking up the pieces that we begin realizing all that was lost. This might be what will happen after the crisis of this pandemic is over. Often, it is then we begin to grieve the more intangible losses. This happened to me with cancer treatment, during the crisis I survived. But a year later, as I began tiptoeing around the shards on the ground, I realized all the ambiguous losses I had, and which I needed to grieve. The loss of the sense I would live a long life, the loss of school plays I had not seen, the loss of the sureness that I would see my daughter walk down the aisle. The intangibles. And with each of those very wispy losses, all the stages of grief would have to happen: shock, anger, denial, bargaining and depression. Today, what is happening this moment, as we distance in our homes, as kids scramble to pack up dorm rooms, as workers are told to stay home and as a myriad of joyful and fun and social events are canceled, we are in shock. We are talking about how wild this is, how frustrating this is. We are in the first stage of grieving these ambiguous losses. But many of us don’t recognize it yet. We have lost so, so much already. And no one has really talked about it. An ambiguous loss is a loss we can’t quite get our hands around. The ambiguity speaks to the loss of dreams and futures imagined — the loss of things hoped for and for feelings anticipated. It’s the loss of those wispy, hard to get your hands around yet real beliefs about the metrics of the world. The loss of the steadfast feeling of our safety, and a sense that we live in a world where things are just, people do the right thing and rewards are fairly certain. This loss often happens when bad things happen to good people. And right now, lots of bad things are happening to good people. The grief attached to these things is real, whether you prepared for and anticipated the losses, or if you were blindsided by the enormity of this pandemic this week. I for one had time to prepare mentally, I saw it coming. But admittedly even I, an anxious little information junkie soul, had no idea the immensity of all that I would lose. For others, it was a complete t-bone blindside this week when things ramped up exponentially because they had, for months, avoided consideration of loss, thinking, it’s “just the flu, people are overreacting.” The word ambiguous doesn’t mean it’s confusing or not real, but more so that it’s something you can’t easily get your hands around. It’s a loss that doesn’t have the defined edges and protocols like the loss of a parent or spouse does. It’s likely more like the loss people who miscarry children feel. It’s kind of like walking around with a pit in your stomach, wondering why you feel like crying. It’s under-recognized. A lot of us felt this in our gut the days after 9/11, but for some young adults, it’s a first. With this pandemic, we are experiencing these losses right out of the gates. The loss of things we looked forward to and the loss of things we dreamed about for years, over our lifetime, or even for just months. The pandemic has snatched these dreams away from us. It has stolen events like vacations, weddings and celebrations like graduations. We have lost the experience of human connection that fulfills us found in sports and church, where for some, it was the only human interaction of the week and the connection was greatly anticipated. Here is the rub. These losses are deep and hard but are considered “first world problems.” And that is where we have lost permission to grieve and to talk about it. This is the season of reward for many. The last months of our kids’ senior year, no matter what or where, is the cherry on top of years of hard work. Special ceremonies, senior nights, parties and spring breaks. All “the lasts” have become ones we did not anticipate, they have happened when we didn’t know it. Our kids didn’t know it would be their last dinner at the dining hall together, the last time in the student union or maybe even the last time on campus. It is the season of rewards which won’t likely come, like a sporting event final for a hard-fought-for season and the Olympics. And yet again we get chided if we feel sadness for our “first world problems.” The most profound ambiguous loss we are experiencing is the loss of safety/security. Some folks are for the first time in their life realizing the boogeyman is real. There is such loss in realizing that he can indeed get under your bed, despite what you felt were certain insulating factors. The loss of jobs, the loss of health, the loss of a home and the loss of sureness that this could never happen to you is profound. I wrestled hard with this when I got cancer. Security being gone is an enormous loss. The loss of your very first world ability to go to a hockey game safely, without possibly dying weeks down the road, is a profound hit to the psyche. Yet we might feel small for admitting it. We have lost beliefs and ideals. Our beliefs about the rewards of working hard will offer us secure housing, financial stability and the ability to retire. That belief that if you work hard and pay your rent, if you are a good employee, you will keep your job. If you diligently put into your IRA all your life, you could retire one day. The belief about who you are is another loss. The belief that you of all people would never be one of those people who defaults on car loans, gets evicted or files bankruptcy, and yet, whelp, here you are. The loss of your belief in the security that hospitals will be equipped to give you all the care you should need when you need it has evaporated as we watch the medical teams in Italy have to make impossible decisions about who gets treatment. The belief that our leaders will protect us mentally, physically and emotionally is shaky right now, and that is core loss stuff right there. The loss of the belief that you of all people don’t have to worry about having toilet paper to wipe your kerdunkerdunk sounds funny and silly but is quite profound. It’s shattering to lose innocence, it’s traumatic to feel things were stolen from us and it is very sad to miss the things we hoped for and anticipated. All ambiguous losses. These losses are not validated, they are often not shared and they are lonely losses. These are the kind of losses people don’t show up with casseroles for. The kind we are sheepish to admit. My point is this. There are a million floaty wispy losses in this pandemic. There is lots to grieve here already. Recognize that, and recognize it is OK to cry and talk about it, even if you think, “Gosh, I feel shallow weeping about not going to the NCAA finals when people are dying.” It’s OK. Often the hardest part about ambiguous losses is the “compare factor.” As if somehow you shouldn’t feel sad because well, it could have been worse, or geez, other people have kids with cancer and have relatives dying, and you missing your kid’s graduation is, well, small potatoes honey. The notion that because “these are first world problems” we shouldn’t be entitled to feel sad about them and grieve them makes the loss complex. We aren’t given permission to cry over them, and at times, are made to feel silly for even saying it out loud. We even admonish ourselves (I know I have), telling ourselves that these things are silly to cry over. Instead, we are quietly crying in the shower over canceling that Disney graduation from college trip cause it seems silly and shallow and first world of us. I will say it. I am sad about not seeing my son walk across the stage, I feel robbed. I am sad about my daughter losing a job she worked her fanny off to get and was thriving at. I am sad that I may not get to retire as soon as I want. And I cry about this nightly. It’s not fair. Right now, the world is telling us, well, the bigger picture is the health of the nation and it is.  But trust me, in the long run, so are these losses, and so is the need for us to be talking about them and about our sadness. This blunting and ignoring of our grief is happening all over social media in the crisis. While keeping perspective is helpful, so is saying, “I know this is hard for you. I am sad. I looked so forward to this and am just beside myself.” In all the memes and jokes on social media, in all the “take a walk” and “distance” and “flatten the curve” posts I have seen, I have yet to see one that has said, “Hey! You out there, missing your senior year of basketball, hey, you out there, missing seeing your kid walk across the stage, you out there, having a meltdown about making rent and facing eviction, you out there, getting yelled at by your boss for not coming to work cause your kids are out of school, you out there, with asthma and over 60 and feeling like a target is on your back, you out there, lonely now because your only socialization was church or sports, you out there, who had to cancel a trip longed dreamed and planned for, you out there, set to retire next year and can’t, you out there, feeling sad and scared and robbed and cheated out of something and in grief. Hey you, it’s OK to cry, it’s OK to feel sad and disappointed and grief.” So I will say it, and we all need to say it. Hey! You out there. It is OK to cry over what others may call first world problems. It is OK to grieve these things and talk about them. You out there, these are not small potatoes at all. I am here to say go ahead and cry and talk about it. The loss and grief are real, and it is a really sad time. Let’s catch each other’s tears in this. And hey, you out there, remember this. Both things can be true! You can be deeply sad and grieving, and simultaneously understand the need for the greater common good. So weep, kvetch, scream and complain. But keep silver linings in mind too. Life-changing losses and events like these almost almost hatch good things later. Forest fires always encourage young things to grow. Not “having” makes you realize the joy and privilege of “having.” It makes it sweeter. And as my wise kiddo noted, empathy emerges when we find ourselves in a place we have never been and walking in shoes we have never worn. Laser clarity comes with loss and illuminates what is important and not. It can be a reset. Especially methinks, when the loss is of the first-world variety. In a pandemic, no one is immune from the loss of things we were excited for and looked forward to. No one is immune to the gutted feeling that the loss of safety and security stirs up. So grieve. Cry. Comfort one another. Discuss the sadness and anger of these first world losses as we quarantine. Recognize the complex intertwining of fear and anger and loss in all this. Cry and do all the things people who lose people to death do, support, listen and drop a note. Teach our young adults it’s OK to cry and go, “Yes. This absolutely sucks and is not fair.” Say for all to hear, “I feel uncomfortable saying this given all that is at stake with this virus, but I am sad about not going to my kid’s graduation, wedding, whatever it is.” And listen for how many echoes your very permission-giving proclamation harkens. Echoes over and over of, “Me too, me too.” Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How Is the New Coronavirus Treated? How to Make Your Own Hand Sanitizer What You Should Know About Social Distancing During COVID-19 8 Soaps You Can Use to Help Prevent the Spread of Illness 10 Face Masks People With Chronic Illness Recommend