Family Matters


Family Matters

Letting Edin Go: A Mother Makes a Wrenching Decision

By Diane Solomon

July/August 2022


Edin is my fourth kid, almost 16. For years, worry about him suffused my waking, barely conscious brain. First thing every morning, gauzy threads of memory would lace together: Something dreadful, something that can’t be helped. What is it? Oh, right. I’d sprout up, fully awake. Edin.

He’d smiled late and babbled, just barely, many months later. “You were anxious about the other three,” I’d reassured myself, “and they all turned out fine.” I calculated I’d be 62 before he could drive. I didn’t know it then, but Edin will likely never drive.

And then a year ago, as I turned 60 and he 16, I made the decision I’d avoided for years, out of a mix of denial and discomfort—to place him in a group home.

How could a mother do that to her teenager? What kind of mother? Not me, the midwife, psychiatric nurse practitioner, quintessential and ever-codependent caretaker. But today, I’m over the shame. I’m also over the shame of my child yelling in public. I’m done worrying someone will call the police if I don’t grab him ever so gently as he strides into a busy street. I’ve let go of the guilt of needing a break from his physical outbursts.

It took time, but I’m proud about my decision, and grateful that everyone who loves me offered support. (Except my 20-something daughters; but isn’t it their job to think I make ill-begotten parenting decisions? And even they finally came around.) The support alone astonished and fortified me.

In clinical terms, Edin lives with “moderate to severe autism.” He’s “minimally verbal” or an “unreliable speaker.” But those descriptors conjure a bleak picture, which doesn’t suffice. When he was young, I learned if I seemed sad when using those words to describe him, I’d garner unwanted pity. So I pivoted: “My baby? He’s on the autism spectrum. And how are your kids?” I didn’t have time for the worst-thing-I-could-possibly-imagine-as-a-parent look on others’ faces that only reminded me why I woke each morning with dread.

So now, am I grateful for him? I have incisor scars punctuating my body from him, but I doubt anyone could be more purely affectionate, smile down on me with such love, or touch my hand with so much caring.

- - - -

Yet as a diminutive and older mother, I needed a break. What do I mean by diminutive? One day, my oldest, now 30, came home from high school announcing, “Mommy, Mommy! You have a disability! You should get money from the government. You’re a dwarf!”

“I am not a dwarf!” I barked, affronted.

“You are too! Anyone under 4’10” is a dwarf! You’re a dwarf! Look it up!”

I was 4’9” then, a little less now. I never filed for Disability and just continued climbing counters to fetch dessert plates from top shelves. But Ed, as we call Edin, is still growing. At 16, he’s taller than most of his siblings and towers over me.

From early childhood, he bit, kicked, pinched, tore clothes, and threw electronics when frustrated and unable to express himself. As he grew older and tried to restrain himself, he’d blurt out his wants. But if I didn’t tear down the stairs after hearing him call, “I need a plate!” he’d beat me to the cupboard and hurl dinner dishes to the floor. I understood this smashing released pent-up frustration without hurting his family members, but moments later he’d sob with remorse and calm down only once he fell asleep.

At 60, I’m in pretty good shape but can no longer beat him to the cupboard. I’m also a divorced, single mom doing this all on my own, with an older teen still living at home, who’s coping with his own testosterone-fueled issues and feeling sidelined by a brother with special needs. I can no longer fill everyone’s needs or wake at 5 a.m. and function. I can’t worry on every walk or errand together that Edin will lash out and become violent because of uneven pavement, an overly crowded space, or a food he despises being in the grocery cart.

From the time Ed was six or seven, his caseworker, Jo Ann, a lovely woman, has made an annual home visit. Year after year, I’ve felt increasingly depressed through hours of questions that have reminded me that, no, Ed’s verbal skills hadn’t developed much, nor had his pedestrian safety, or his ability to pay at a cash register, or keep his hands to himself and not hurt himself or others. Every year, the epic Q&A has ended with: “I have to ask this question of every parent or guardian. Are you sure you’d like to keep Edin living with you? Or would you like to explore residential alternatives?”

“Of course he’ll stay here!” I’ve always answered. Until I knew he couldn’t.

Once the pandemic began, I had thoughts of Edin living somewhere better for him and for us, but I banished them with self-loathing: I should be able to take care of him myself! I’m his mother! I Imagined him sobbing at the door of some dilapidated, overcrowded foster or group home, or screaming his favorite anguished quote from Chicken Little—“The sky is falling!”—and running after the car as I pulled away.

How Could I?

It was impossible for him to stay at home and for me to make him leave. So I lived the cliché of taking it one day at a time. I told myself, “Today, apparently, isn’t the day to make that decision. When it is, I’ll know.”

From the outset of the pandemic, I had a caregiver stay with Ed for online school while I offered mental healthcare to patients via telehealth. Most days, I was sure Edin could continue to live with us. His behavior was getting so much better, wasn’t it? We’d fine-tuned his meds. He smiled into my eyes with his special combination of whimsy and love. We cuddled. He seemed happy. He showered and brushed his teeth, and independently followed morning and evening clean-up and bathing routines. He even put himself to bed; all I had to do was turn out the light.

And yet, one day, when we went for our regular 30-minute walk and unexpectedly had to step off the path onto irritatingly squishy grass to let a mom with a stroller pass, he bit my shoulder through my jacket and shirt so hard that it left a neat, searing lace of toothmarks on my skin. On days like that, I was slow to pull myself from a morose funk. Even if I did move him out of the house, he’d surely still bite, kick, and hit his way out of his new setting. Then what would become of my boy?

- - - -

Then one morning, it happened. Edin woke before 5 a.m. and began loudly reciting funny quips from Despicable Me and Madagascar, complete with spot-on tone and cadence, but to me, before daylight, they weren’t funny—and I started to weep. I can’t do this anymore, I thought. I’m 60. Don’t I deserve a bit of a life? Doesn’t Edin’s brother deserve a bit of peace, with no violence, no trauma? This can’t be any good for Edin either.

That weekend, I stood at my bedroom window and sobbed. I tried reading the paper in the living room and burst into tears. As I drove Edin to the market, tears burned warm rivulets down my cheeks. He reached over and softly took my hand, saying nothing, his brow furrowed.

I knew this to be anticipatory grief—I had made a decision, which I steered into reality when I shared it with my closest friends. By the end of the weekend, I was prepared. On Monday, I called Jo Ann to say I wanted to move Edin into foster care. It took five months to find a match for him. In that time, I was alternately glad it was taking so long and eager for it to be over. I thought for sure some family would want to love him, but I worried his aggression would put off even the most well-meaning potential helpers.

And it did. Jo Ann would tell me lovely stories of foster couples with a teddy bear of a dad or a retired nurse with great experience fostering. We had to create a “packet” for them about Edin. Yes, Edin was affectionate, smart, and loving. Yes, Edin got aggressive and could destroy property or inflict injury. Yes, Edin could toilet and bathe himself independently. Yes, Edin could walk into traffic if unattended.

The rejections cascaded in. I met a girlfriend for a drink after a long week. As I entered the café, my phone pinged with an email from Jo Ann. Yet another “no, thank you” from a foster parent on whom I’d hung increasingly desperate hopes. No one wanted my boy. I sat down with my friend and just cried.

I spoke to another friend with an adult son who, like Edin, is on the spectrum. “Don’t rule out group homes!” she insisted. “Widen your geographic reach. You never know where the right home is. Don’t lose hope!”

It dawned on me that if I couldn’t handle Edin, how would another single mom or retired nurse or aging teddy bear dad? Group homes, in contrast, were run by professional companies. They worked shifts. If it was a hard day, it wouldn’t be a hard night for them, because they could leave.

I’d made my decision. But would any group home match?

I began talking to Edin about his move. One weekend while practicing letter boarding—a process where those on the autism spectrum point to letters on an alphabet board to “speak” their thoughts—I read a newspaper article about a meteor shower aloud. Ed jerked his arm to stab at me with his pencil. I flinched, pulling away. I began to cry again. “I love you so much, but I just can’t do this anymore,” I told him. “You’re going to have to live somewhere else. I will always love you and be your mom. This isn’t your fault, but I can’t—.”

Ed scrunched up his forehead, tilting his head back and to the side. He’d never looked at me that way. He understood.

“It’s going to be okay. I promise,” I said, watching his face relax with my words, but knowing I was unsure of any such thing.

Soon after, Jo Ann called. “There’s a home in Milwaukie that’d like to do a screening interview. Two teens live there, both girls. Edin would be the third and only other youth; they max out at three. It’s new.”

Three kids. A new home. Not like the dilapidated, chaotic, nightmare house I’d conjured up in my mind. Edin and I attended the virtual screening interview. The company owned more than 30 residences, and the founder, who was at the interview, had started the business for her own disabled daughter. I liked her. They liked Edin.

I went on a tour with a friend who’d served as a court-appointed special advocate for a foster child. “Don’t expect much,” she’d warned before the tour. As we’d left the group home, she’d exclaimed, “I can’t believe how nice it is!”

We set a date for Edin to move, in one month. I wrote what’s called a social story—a brief explanation of a new scenario that helps people on the spectrum plan and respond: “When you get to be a teenager and you have autism, if you’re really lucky, you get to move to a new home to learn to be more independent. You get to live with other teenagers and have your own room, and all your things will be there too. You’ll get to visit our house and go to your same school.”

Meanwhile, the caregiver who worked with us drove Edin to the new house once a week to eat lunch with his soon-to-be-housemates. “I don’t want to move to Perry House,” Edin began repeating.

I was ready. I didn’t cry. “Yeah, I bet,” I’d nod. “It’s scary to move to a new place. But you’re going to live there. And you’ll do great! I’m so proud of you. What color do you want to paint the walls in your new room?”

“I don’t want to move to Perry House.”

“Yup, I hear you, Ed. But you’ll move, and I think it’s going to be really good.”

I was prepared for a total fail, but I worked hard to stay optimistic. I wrote more social stories: “On Sunday, your caregiver and I will move your big things to Perry House. On Monday, late in the afternoon, we’ll take the rest of your books and toys and clothes. You can keep a little suitcase with your electronics and a change of clothes and anything else you want here for your last night. Then on Tuesday you get to move to Perry House!”

Three nights before his move, Edin came into my room warm and fragrant, smelling of lavender soap. Every night, independently, he plugs the tub, showers, and lies in the bath to relax, calm and quiet in the steam and water—a ritual since childhood.

This night, he cuddled up with me afterward, looked me in the eye, calm but intent, and said, “I need a bath at Perry House.”

“I knew you’d need a bath, Ed,” I told him. “They have the bath all ready for you. You just haven’t seen it yet. I got you. I’m making sure they have everything you need.”

He beamed and snuggled up to hug me, warm and redolent, serene.

- - - -

It’s been a year since Edin’s move, and he’s grown more than he could have if he hadn’t moved. His speech development has accelerated, his aggression has dropped off precipitously, and his independence as a young man has risen sharply. His chest puffs as he tells me about his day, what he can do, or how happy he is.

I look forward to seeing him on FaceTime every night at 8:15 p.m., even if he hasn’t quite mastered the medium. “I see your hair and forehead!” I say. “Your eyelids look good tonight.” He moves his face into view, and then forgets again.

One evening, when he didn’t answer my call, twice, I started to worry he was suddenly too old and teenager-y to speak to his mother. But the next morning, when I rolled over and picked up my phone, I saw that he’d called, twice, at 3:56 a.m. My heart hummed. He still wanted to talk.

“Oh no,” his house manager had insisted when I asked her if he was growing disinterested in us. “He clasps his iPad in his lap after showering every night, waiting for your call. I’ll ask him if he wants to call you—he can—but he doesn’t want to. He just holds it and waits, grinning.”

* * * *

Diane Solomon, PhD, PMHNP-BC, CNM, has a private psychiatry practice in Portland, Oregon. A health policy advocate, she’s an assistant professor at Oregon Health and Science University, the Chair of Nurse Practitioners of Oregon, and recent member of the Oregon governor’s Behavioral Health Advisor Council. Contact: dnsolomon@comcast.net

ILLUSTRATION BY ADAM NIKLEWICZ




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