FTF: "Up and Screaming" by Sarah Hoffman

This year's First Things First series of guest posts is kicking off with a great post from Sarah Hoffman!

Sarah Hoffman is the mother of a pink boy and a girl whose favorite color is yellow. She writes for national magazines, newspapers, and radio, and speaks publicly about raising her gender-non-conforming son. She uses a pseudonym to protect the safety of her family.

If you haven't visited Sarah's blog, you are missing out.  Her humor, insight, and charm make her writing a true joy to read. 

******

"Up and Screaming"

by Sarah Hoffman

At birth, Sam was blue—but the doctor was not worried. He pinked up quickly with oxygen and gave a hearty cry. In the hospital, he seemed normal, with only a few small oddities: he picked up his own head an hour after he was born, and he refused to stay in even the military-crisp swaddle enforced by the three nurses who tried. Within moments, he broke free of the blankets, flailing his arms and crying.

The real crying didn’t start until the ride home from the hospital—Sam howled all the way. After that, there was no car trip when our first-born child didn’t scream from the second he was put in his car seat to the second we removed him. He cried, too, in the stroller, the swing, the bouncy seat, his crib. Most of the means new parents have of soothing their screaming infants were lost to us, and so we held him. And sometimes he cried even then.

Our doctor told us Sam was healthy, merely “sensitive and intense.” The next doctor concurred. The doctor after that told us Sam had a behavioral problem and we needed to set limits with him. He was five months old.

Sam would only sleep at night if we held him on our chests, and even then only in 15 to 30 minute stretches, from which he woke up screaming. My husband Ian and I took turns holding him while the other slept.

Crazed with sleep deprivation, I called my therapist, who told me that I needed to hire a nighttime babysitter. I couldn’t do it—I couldn’t hand my baby to a stranger when something was wrong, when he needed me. Which meant that Ian and I quickly became incapacitated: unsteady on the stairs, unable to work, unsafe to drive.

My therapist said: It’s OK for Sam to be up in the night screaming. He’s a baby, and he will get through this. It’s not OK for you to be up in the night screaming.

I couldn’t, in my sleep-deprived haze, see the reason in this.


Out of desperation and based on a friend’s referral, we took Sam to a cranio-sacral chiropractor, whose treatment involved gentle touch to Sam’s spine. He told us Sam’s poop would turn green for a day, and he would sleep. Ian and I looked at each other with raised eyebrows. But when we put Sam in his car seat to go home, he fell asleep for two hours. His poop was green. And then he began to sleep through the night. Now we understood that pain had been keeping Sam from lying on his back, and felt terrible that he’d lived in pain his whole small life.
That visit to the chiropractor taught us to trust ourselves. Sam was different, and needed special care. It was up to us to help him.

Sleeping through the night, for Sam, meant waking up at five for the day, screaming. We accepted this, because it was so vastly preferable to what we’d had before. We also accepted Sam’s daytime quirks: he still cried hard when he felt wind, when he saw sunlight or fluorescent light, when he smelled perfume, when we put him down or let anyone else hold him. But he slept at night, so we could live with the things other parents didn’t seem to experience with their infants.

When Sam was three, his sleep started to degrade again. Five a.m. wakeups moved to four. He had vivid nightmares and night terrors. Some nights he was up screaming every half hour. Once again we sought help for his sleep disorder, as well as for his increasingly challenging daytime issues: motor delays, acute anxiety, rigidity, crying jags, screaming tantrums—a roller coaster of crazed highs and sobbing lows, all a hair-trigger away. We went to a sleep clinic, a psychologist, an occupational therapist, a developmental pediatrician, a psychiatrist, another psychiatrist. Another.

By the time Sam was five, we had no diagnosis, no treatment plan, and a boy whose nails were chewed down to nubs, who called himself “stupid” and said he wished he’d never been born. His sleep became random—some days up at five, some days at three, some nights sleeping through, some nights up screaming six times. And when Sam woke in the morning he was crazed, bouncing around our room talking urgently about whatever was his current obsession, as we struggled through the fog of not-enough-sleep to get up and tend to this hyper, anxious, quick-to-anger, sleepless child.

By day I sought answers, and by night I sought sleep; both remained elusive. I lived in a constant state of distress, anxiety, and desperation to help Sam. I developed insomnia, and my sleep became fractured. Even when Sam slept I woke up with my heart pounding, anticipating his screaming. Every wakeup felt like an emergency: Sam howling as though his hair was on fire, my motherly instinct amped up to save my son from peril. Though exhausted, the adrenaline and caffeine coursing through my veins prevented me from napping. I began to wake up for the day with intense pain in my back every morning at four, even if Sam slept until five. I began to fear falling asleep at night, knowing that I would soon be woken up, knowing that the night would end too soon in pain. I began to lose my grip on my days, crying more than not crying, unable to function. A phrase looped constantly in my head: I can’t take this. I can’t take this. I can’t take this.

I broke down. In desperation and again through a friend’s referral, I found a sleep psychiatrist. He diagnosed me with Post Traumatic Stress Disorder: the years of waking up before dawn to a screaming child locked my fight-or-flight mechanism into “on” mode. He prescribed an incredibly gentle treatment protocol to turn it off: daily walks, omega three oils, relaxation. And when those things weren’t enough, drugs. I went to physical therapy and osteopathy for my back pain, practiced chi gung, began to meditate. My husband took over the nights, and then we hired a babysitter to help him. Slowly, slowly, over two years, then three, my pain began to abate and I started to sleep more normally.

In time, I stopped saying I couldn’t take it, because I had taken it. I was becoming more okay. I made changes: I put down the book I was writing. I took the time, each day, for the self-care that was required to heal. I did as little as possible; I said no to most social plans. I had two priorities—taking care of myself, and taking care of my kids—in that order. I was nothing to them if I could not function.

As I restructured my own life, I began to look at Sam differently. There is no knowing if his sleep disorder and mood issues will be lifelong. In fact, in the last year his sleep has gotten worse—he now wakes as early as two for the day. What has changed is my relationship to Sam’s problems—I’ve learned to keep my wellbeing separate from his. It was easy to let a problem of this magnitude define my life; as sleep deprived as I was, I could not imagine what else life could be. But I made myself imagine it, consciously decided that I wanted to feel better, far better, than I did.

When I’d refused to hire a nighttime babysitter when Sam was tiny, I’d let his problems nearly take me down. And it had happened again. The reality is that Sam may always be a person with a sleep disorder. But if I’m going to parent him well, I can’t have a sleep disorder, too.

Now that Sam is eight, we have trained him to stay in his room until six, reading or playing with Lego. So even if things stay as they are—even if they get worse—I know that we can find ways to manage it. I know that I cannot let myself be dragged down by it. I know that letting myself get ruined does not help my children.

Doctors have told us to give up on healing Sam’s problems; I can’t do that. But I can’t let his problems eat my life, either. I am striving, now, to find a way to accept these challenges we have, even as I continue to seek for help for Sam.

I’m in this for the long haul: helping myself, my marriage, and my children thrive as much as we possibly can.

6 comments:

ada_hoping said...

Hartley, I found you maybe . . . 6 months ago via stark.raving.mad.mommy. I found Sara Hoffman shortly thereafter. All three of these blogs have been tremendously helpful to me. Every time one of you writes, it reassures me that it's not my parenting that "causes" my son's issues (which resemble various aspects of SPD, autism, and yes, even a little pink-boy). Some kids just have to walk a different path. Because of the blogging community, I have stopped beating myself up for things that I now know are beyond my control and have changed my focus on strategies for teaching my son in the way that is most productive for him to learn.

ShesAlwaysWrite said...

This... "And when Sam woke in the morning he was crazed, bouncing around our room talking urgently about whatever was his current obsession, as we struggled through the fog of not-enough-sleep to get up and tend to this hyper, anxious, quick-to-anger, sleepless child. " .... describes our life.

Thankfully our son's sleep problems have improved to the point we can function more or less as thinking adults now, but I wake every single morning with him bouncing on me screaming "Mooommmmy!!!!! Wake up!!!!! Get uuuuup! Open your eyes!!!!" wondering how I'll find the energy to get through the day.

Patty O. said...

This post actually made me cry. All the stuff about not letting your kid's problems define you and become who you are--I needed to hear that today, more than ever before. Thank you, thank you, thank you!

Mrsink said...

This post was perfect for me today. My son does not have a diagnosis, but has global developmental delays and has always had sleep issues. What you said about not letting his issues define you is exactly what I needed to hear. Thanks for posting!

Mel ~ said...

I absolutely know what you are talking about! I have two children, born 18mo apart, who have now BOTH been diagnosed with Bipolar Disorder along with a host of comorbid alphabet soup of dx. In the last ten years I have been through the SAME process (tweaked here and there) and I am still learning to heal, find help, solutions, and progress. We have come a long way and there are miles to go, but lately my mantra is, "one day at a time" yeah, ok sometimes it's one breath at a time!

Kudos to such a beautiful, moving and relatable piece Sarah!

Come visit me too @mytwistedstitch or http://www.lifestwistedstitches.com

Dianne dy said...

I was touched by this post. Our son had a problem with sleeping 2 years ago. I had observed that he always sleeps with his eyes open. That’s why I asked our doctor on how to sleep with your eyes open . We were really afraid that time, and we had no choice but to accompany him to see a doctor.