On Being an Autism Mom During COVID-19 Lockdown.

I have been a little messy as of late. Not dirty in the car or dirty in the bathroom, but messy in the head. A little chaotic in the brain. I’ve been drinking a little too much wine, not sleeping nearly enough, perseverating on things… just a little chaotic in the head.

My therapist tells me that she can’t understand how I haven’t completely lost my shit. She says I’ve been holding it together and being too strong for way too long. She asks me if I want a script for Xanax during this time — just to get me through. I breath a sigh of relief. Xanax. It’s to middle aged suburban moms what marijuana is to… well, middle aged suburban moms. She reminds me not to take it if I’m going to drink wine. “Of course,” I tell her, “I’m not looking for a CNS shutdown…”

I’m a therapist too. A busy one. And I can hold space for someone so firmly it’s as though I’m clutching a 100 gallon fish tank bursting at the seams. I don’t let people go, I let people explode and fall apart all over me. And I love it. It is my most natural state.

I am used to overfunctioning. Chaos and I are great old friends. My default mode is to scan the room for chaos, find it as quickly as I can and open my arms to receive it and hold it tight and let it know that it’s loved and safe with me. Chaos feels safe with me. Chaos knows that I won’t run away from it. Chaos knows that I love it unconditionally. Chaos doesn’t understand why I continue to hold space for it so fiercely and so lovingly and that I don’t crack under pressure. It keeps coming back for more. But chaos doesn’t know that it’s possible for me to crack.

And I think I’m getting close these days.

And as of late, my messiness is becoming apparent to me. Quarantine has this way of holding a mirror up to us that we can see the mess very clearly and very objectively. I want to pick up that mirror and shatter it. I don’t want to look at my shortcomings, my issues and constant need to escape. Workaholism has been my default “ism” for so long that I wonder if there are any other fun coping mechanisms that I’m forgetting about.

My son S, who was diagnosed with autism four years ago is eight years old. And each year, he becomes more and more profoundly autistic.

He was born different. His eyes were opened wide and he looked around at the world as if he were noticing and seeing everything. “He’s smart,” the pediatrician in the hospital said, “I see a lot of babies… but this one is smart, look at the way he’s noticing the world around him…”

Postpartum was hard for me. I figured that I’d be in and out of the hospital in less than 24 hours. But four days of labor, then a C-section, then 5 days of hospital recovery… being in bed for that long was excruciating. I wasn’t in pain, I was bored. I’ve never been good at not moving and I’ve always believed I was invincible... able to withstand anything. The nurses told me I needed to wait a few days before I could get out of bed. So when I tried to pull my catheter out and walk on my own, a tired and frazzled nurse told my husband “Can you manage that wife of yours? Can you please make sure she follows the rules…”

“No one can,” he told her… “she’s uncontrollable… even on Dilaudid.”

She rolled her eyes and walked out, “if I have a fall on my shift I’m coming after you!” she told me. She was frustrated with me, with my need to control the situation and not follow the protocol. I wanted to be a good patient, to be compliant and helpful. But I couldn’t stop myself. I needed to go back to feeling in control. Being so debilitated and helpless felt interminable, even for what I logically knew was an ever so brief moment in my life.

“Please don’t flush the toilet,” my husband asked the nurse when she came back in to measure what came out of my catheter, “it makes the baby cry…”

She sighed heavily, “First time parents…” she said shaking her head and frowning… “newborns don’t hear the toilet flush, it’s a coincidence, he’s just crying because he’s a baby...”

“No really,” my husband said, “every single time the toilet flushes, he cries…”

“Listen,” she said, “I’ve been a postpartum nurse for 30 years and never in my life have I seen a baby cry when the toilet flushes, trust me, you’re imagining things…”

But that wasn’t the real truth as we later learned. What became apparent as he got older was that his ability to hear sounds, all sounds, even far away sounds was so heightened that certain sounds caused excruciating physical pain to his whole nervous system.

As he grew up, he started meeting his milestones eerily fast. Sleeping through the night, rolling over, crawling, walking, talking, knowing his numbers, letters, colors, body parts, eating with utensils, even chopsticks and … all so fast. Our pediatrician said that we had a profoundly gifted child on our hands.

And before he even turned 2, another baby came along. This second baby, his little brother was born quiet. His eyes stayed closed and he mostly slept for his first two weeks outside of my body, “what’s wrong with him?” I asked my husband, “is he sick?” He wasn’t. He was just a normal, typically developing infant, but it was a stark juxtaposition to the altertness and awakeness of his big brother.

And then, sometime after his younger brother was born, my son’s lightening fast development stopped abruptly. But we didn’t notice until his development began to go backward. He stopped talking, stopped using the bathroom, stopped eating with utensils, stopped playing with other children. He had a few seizures. He panicked when he saw other children and desperately cried for hours over seemingly nothing. And they weren’t temper tantrums or meltdowns, they were hours of deep weeping. Sadness that seemed like the grief of a young widow. It hurt me to watch him. It broke my soul. I would hold him and rock him and try to ask him what was wrong, if he was in pain. But the pain it seemed was more emotional. A deep sadness that a 3-year old couldn’t possibly articulate. And at this point, he lost his ability to use words. I was so scared that he was in pain. We spent months and months trying to figure out what was wrong with him. MRI’s, EEGs, blood tests, neuropysch evaluations, autism evaluations, OT and speech evaluations…

His early development and some very specific aspects of his personality precluded an autism diagnosis for a very long time.

As he got older, his levels of functioning decreased and his hyperactivity increased. It became impossible to leave him alone for any length of time. He was like a very strong 18 month old. He would destroy anything in plain sight. He would open the pantry and spill bags of rice all over the floor, dismantle the kitchen cabinets, take hinges off the doors, urinate all over the house, break windows, cut cable wires, take apart and set off smoke alarms, throw dishes on the floor. He even peed all over my wedding dress. There was no lock that could contain him, no hiding place that he couldn’t find. And this would happen in the wee hours of the morning, while my husband and I were fighting for our final minutes of sleep. His chaos had superseded my ability to contain it. When we’d go out in public, to the store, to the playground, to the beach… anywhere, he’d get nervous. He’d cry, he’d scream, he’d run away, he’d hit me, he’d throw things. I’ve walked through Trader Joe’s with a shopping cart in one hand and holding my son with a full on wrestling grip — my arm wrapped tightly around his chest and arms, restraining him so he didn’t run away or throw things. Either way, I’d get dirty looks and sometimes yelled at for being a horrific mother. People don’t understand. They don’t get that he’s falling apart and scared and that his whole nervous system is activated and that he’s in fight or flight. That the world around him is attacking him. They don’t get that his only escape is to run, is to throw things, to jump out of his skin. People who don’t know me, don’t know my son or our situation have no problem yelling at me or judging me.

I became depressed and felt hopeless.

I didn’t understand and I didn’t know what to do. We followed the advice of the specialists. We put him in five days a week of various therapies (occupational therapy, speech therapy, music therapy) in addition to a special needs private school. I threw myself into work in order to fund the thousands and thousands of dollars a month it took to support him, but work also became my escape, my respite.

I felt trapped and all I wanted was escape. To be done with this life that I created for myself, this marriage, this failed motherhood. My inability to do this thing right. I needed out.

So I worked. And I worked and I worked. I loved to work. I loved that I understood my patients and that they were getting help from me. It was a relief to be able to understand other people. It was a relief to be able to freely give and receive love. It was a relief to know that I was good at something since I felt like I was a failure at being an autism mom. And I felt like I didn’t understand my own son at all.

I was lucky in so many ways though. Being in the San Francisco Bay Area I was able to surround him with so many extremely gifted therapists who loved him and whom he loved back. These people who were able to see into his soul and understand him and his needs in a way that I felt I was supposed to but didn’t. And eventually, this became what I accepted. I gave in to the fact that I couldn’t be exactly what he needed, but I could provide it for him.

I began to understand that his level of sensitivity, his sensory system was so highly attuned that he constantly felt as though the world was attacking him. His inner-chaos was expressed by the chaos he created outside of himself.

And then. Shelter-in-Place.

The thing about this quarantine, as I said earlier, is that it really holds a mirror up to you to show you all your deficits. Although, when my patients look into this mirror, the one that shows only the deficits, the worst parts that they believe they have, I question that mirror. But for me, for my own sense of self, I forget to do that.

My mirror tells me that I’m the worst mom ever.

On the first day of shelter in place, my son’s teachers and resource specialists and therapists called to give me his assignments, times, telehealth meetings and schedules. I started crying. It was only 8am and I still had a full workday ahead of me. Ten patients were scheduled for that day, and there was definitely going to be a lot of emotion to hold given the fact that we had all just found out that we were in the midst of a global pandemic. The angst of the world was palpable and my instinct was to run head first into crisis mode.

“I can’t.” I told my husband. “I just can’t. You handle it, okay? You handle his stuff.”

I was embarrassed. They loved my son and wanted to make sure he was getting what he needed, but I didn’t know how to give it to him.

I sunk into work. I sunk into what I understood. I became hyperfunctional. I was interviewed for podcasts, news articles, webinars... I built a freaking website for other therapists to connect with eating disorder patients who were looking to see a specialist online. I started seeing patients every day of the week, including Saturday and Sunday. I became worried about patients who were really sick with their eating disorders, my own and people out in the world whom I’d never met and had never met me. I worried about the single moms, the women who were trapped in abusive relationships, people who were getting sick, nurses who couldn’t get protective gear. I worried and I worried. I made an Instagram page to help people who were stuck in quarantine with an eating disorder. I sent out newsletters, I did interviews, I stayed busy. My husband told me to stop trying to save the fucking world and to get some sleep, tend to my family and to stop working so much. But after fifteen years together, he knows me. He has seen me through birth and death and lots of other crises and he knows what I do when trauma ensues. I run into it.

And so I worked. And I worked. And I worked. I didn’t sleep. Haven’t slept.

And one day as I walked out of my bedroom/office to grab more coffee, my younger son, the six year old said to me, “Mommy, I’m so sad, I never see you anymore…”

“But honey, we’re always home together, all the time, we’re together constantly, I’m only 15 feet away from you..”

But I knew he was right. He never saw me. I was hiding from motherhood. I was hiding from my older son. I was escaping into work.

I took him and hugged him and held him tight, “Mommy’s working a lot, huh?”

“You’re working tooooooo much Mommy. I really need to play with you.” And I realized that I was avoiding so much of the hard parts that I wasn’t getting any of the good parts.

I am restless. It’s 5am and I’ve been laying in bed for what seems like hours trying to stop my brain from moving, trying to let sleep come back to me. It feels useless so I sneak out of bed and go out for a run. It seems naughty to be outside. Noncompliant, defiant, reckless and rebellious. I think back to being in high school, those nights that I’d be up all night cleaning and cleaning and cleaning my room, moving the furniture around to calm my whirring brain, trying to organize the space around me to subdue the chaos in my head, vowing that I’d be perfect from this point on. I think about a patient of mine who tells me about how her mom, who worked from home when she was a kid, was always so dismissive and preoccupied, always working. I think about my six year old, who is always trying to hug me and kiss me and grab me and play with me when he sees me slipping in and out of my room between sessions… and how I have to say, “Mommy’s busy honey, I have to go back in to work,” and how deflated he looks. And I vow to be different, to be more available. I don’t want to miss these days when he always wants to be with me, these days when he loves me so much and passes notes under my door while I’m with patients. . Office memos — “Dear mommy, I love you…” they say. And my heart fills that my kindergartner is writing and passing notes and emoting. And then it sinks because my second grader is still peeing on the floor. One pleasure gets pushed away by a pain. I run through the empty streets and cherish this moment of tired peace — knowing that this moment, that these moments are all so fleeting.

Taking care of people has always come naturally. But I look at my son and I see the most complicated puzzle that ever existed. It confuses my own self-identity, how I understand myself as a human being. I thought I was a kind, compassionate and intuitive person, but not being able to clearly see or understand my own son makes me question my very core, makes me question my being, my purpose on this earth.

And it breaks my heart. And what hurts the most is that he recognizes how incompetent I feel with him. When he sees me, his first reaction is to cry or to break things. He says “Go away Mommy! Mommy go away…” I think he realizes how much pain I’m in and how much I shut down around him. I think he knows how much I sometimes just want to escape. It’s not fair to him. He never asked to feel this way. He’s just trying to escape his own inner turmoil.

He has big outbursts. He screams, he breaks things, he bites me, he bites himself until he bleeds, he attacks his little brother and hurts him. He has the amazing ability to tear my house apart like a rock-band destroys a hotel room. In moments. In seconds. He’s a full rock band unto himself.

I’m tired. I’m so fucking tired.

And it’s in the hopelessness, the no end in sight that depression rolls in. It’s that way for everyone. Depression is steeped in the belief that this moment will never end.

I always wanted children. I was born a mother. I took care of everyone, my friends, my dogs and cats, my baby brother… I love to love. I love to nurture. I love to pour myself and my intense love into people. I am in love with love and loving people. It’s the way I feel full. When I finally got pregnant with S, I just sat there every night filling a notebook with letters to him, about how much I couldn’t wait to meet him, about how I was going to do everything I could to give him the childhood I never had. A house in the country instead of an apartment in the city, two happy and mellow parents instead of one- single angry and violent one… I wanted him to know that he was loved and wanted, revered. Special and perfect no matter what.

But for me, that baby, that precious little human who I grew in my body for nine months and fed with my body for two more years — is a complete stranger.

And at times, that makes me hate myself.

We talk about mom guilt a lot. All of us moms out there. And with special needs moms, it’s even more difficult. We’re not able to homeschool our kiddos the way some other moms are, we’re not able to have normal playdates with our friends or meet other moms, we can’t take our kid to a movie, we have to work too much to be able to appropriately care for our special needs kids… and then the job, the mom job becomes thankless. Momming isn’t a job that is there for the fun. That I have come to understand. But for most people, the fun comes.

Most of us autism Moms are watching our houses be torn apart, watching our kids totally decompensate because they are so thrown by being off their routines and away from their people, the therapists and teachers who know how to work with them.

Some of us are working from home and some of us are full time Momming but all of us are going fucking crazy. We’re not getting a break. We’re not leaving the house. Our stressed out kids are up at all hours of the night which means so are we.

We’re not getting enough sleep. Our sanity is at the breaking point. And we are somehow all holding space. We are holding together a giant house made of a deck of cards that’s threatening to fall. And if we so much as exhale, it will all come crashing down. And then we’ll have to pick it up and rebuild it. Again.

Because that’s what we have to do. Because we’re fucking autism Moms.

It’s in the non-stop chaos that I can’t contain when I feel lost, trapped and so fucking lonely. I’ve felt trapped in this life for so long. Being locked in my house just exemplifies it.

It’s in the times that I’m tired, when I’m hopeless and I forget that this is life, which isn’t what any of us expected. But in the days when I have my brief moments of space, I can let myself sit and go deep into a meditative state and escape in that way. And that’s comforting. That’s when I remember that this isn’t permanent, that this will change, that I’ll be okay, that he’ll be okay… that I don’t have to be anyone different, that none of this is permanent, that this is not significant, it’s just a minutia of a human family in a world of billions of people in a tiny moment, a slice in time, and then I can find some peace. Some solace in the fact that this is just my story right now. I remember that I am resilient and that most of the time I can roll with this whole thing, that I know how to be strong and I know how to do this.

There is a serenity that comes with surrender, with letting go of control and letting the Universe take the lead. When we start allowing as a practice and start rolling with chaos and stop trying so hard to control a situation, then, that’s when the grace, the fluidity and an opening happens. That’s when our lives get easier, when we stop expecting them to be different, when we stop hoping for them to be something else.

Yesterday morning, when I heard S destroying my kitchen, I rolled over for some more minutes of sleep and thought to myself, “let him do it… it’s fine…”

And then when I got out of bed and walked into a kitchen — I found a jar of pasta sauce spilled on the floor mixed with a jar of apple sauce with handfuls of cat litter interspersed throughout. He smiled and me and gleefully said, “Mama! I made a mess!” He looked so proud of himself and so thoroughly delighted. “Should we clean it up?” I asked him? He smiled, so excited and screeched “YES!!!!!” He grabbed a broom and handed it to me. Actually he threw it across the room and hit a lamp and laughed some more. But the giggle, that sweet, sweet infectious sound of his laughter and joy came because he knew that I had made the decision that morning to love and accept him completely. To surrender control. To let go of having a “normal” family with “normal” playdates and “normal” trips to the grocery.

Because that, in the end, is what we really have to do, because we are fucking autism Moms.