> Current Issues > Society

Wheelchair Envy

June 26, 2016 | by Jane Doeberg

I wish people would realize my child is mentally ill and is not going to grow out of it.

Have you ever wished your child was in a wheelchair?

Probably not. It’s a horrible wish.

But I have.

You’ve probably never felt jealousy when watching a mother pushing a profoundly disabled child, his arms curled inward, his eyes rolling and his head lolling to the side? People turn and look when he squawks because he can’t communicate. And the people look at the mother attending to him, with compassion in their eyes. “Poor mom,” their eyes say. “That’s a lot on her plate.”

I have.

I have six children and they can all run and jump and hug. They look normal on the outside. And yet I wish there was something tangible to signal to others that all isn’t well, so they could see what we are up against.

You wouldn’t know that my eldest daughter is sick by looking at her.

She’s a beautiful girl with a radiant smile and a boisterous laugh, athletic and smart. Sure, she has a piercing too many, and people talk about her going off the religious path. Sometimes, at synagogue, someone will take me aside and comment on what she’s wearing (or not).

I thank them for their concern. Or I amuse myself by saying, “Holy cow! You’re right – I hadn’t noticed.”

They don’t know what goes on behind closed doors – that this beautiful, once sweet girl is drowning in pain, feels worthless and angry, hates limits but craves them even as she pushes against them without relent. That she tries to numb her pain with booze and boys. That she cuts her skin, that she can’t stand her brothers and sisters, that she hates the parents who love her. Hates me.

Most of all, she hates herself.

She’ll grow out of it? Is the child in the wheelchair going to grow out of it? Neither is she.

Instead I get this: “Oh, she’s just a teenager… you’ll see. She’ll grow out of it,” my neighbor told me when I had to explain why the police had been at our house again. (She’d jumped out a window in the middle of the night “to take a walk,” she explained upon her return hours later. It was ridiculous that we’d called the police, she said. Unreasonable.)

She’ll grow out of it? Is the child in the wheelchair, arms curled in, going to grow out of it?

Neither is she.

Her biological mother hasn’t. She’s a relative of my husband’s and we adopted her two children, a boy and a girl, when they were preschoolers after their mother had been arrested. Again.

A brilliant, gifted woman unable to observe social norms or control her temper, she abused her children emotionally and physically and disappeared from their lives once the family banded together to protect the children.

My son and daughter haven’t seen or spoken to her since a year after we attained custody 11 years ago. They both have written to her periodically and either receive no response or lengthy, bizarre ramblings. (Their father passed away before we got custody.)

I sometimes think that the emphasis on “diagnosis” isn’t a medical need, but to give everyone else a label to name the enemy controlling my child.

Their biological mother never consented to treatment and the Court-compelled diagnoses conflict. Maybe it’s bipolar, maybe she’s Borderline, maybe this personality disorder or that. Psychiatry, while gifted with incredible tools, is an inexact science. Often, diagnoses follows what medication or treatment a patient respond to. Their mother never complied, and we haven’t yet found one that works for our daughter. And, warn the doctors, mental illness usually doesn’t fully “crystalize” until the early 20s.

I sometimes think that the emphasis on “diagnosis” isn’t a medical need, but to give everyone else a label to name the enemy controlling my child.

My son – an angry, nasty, manipulative five-year-old who sometimes frightened me when he first came to live with us – has his challenges, but he has been unrelenting in the work he does on himself. He is a brave, good, kind, funny, honorable, happy teenager. He works with his therapists and works with us. And the biology – at this point – seems to be on his side.

Not so for his sister.

Even as a small child, when we would care for her before we got custody, her temper was explosive, she could tolerate no frustration or disappointment, and communicating with her seemed impossible.

For a time, with the help of an excellent team of therapists and advisors and a stable, loving home, she seemed to blossom. Her grades were great and her behavior – which concerned us far more than grades – was wonderful. She stopped picking on the nerdy kids, tore up the soccer field, treated people with respect, tried to be honest, and adored her baby brothers and sister.

We called her a champ for having worked so successfully on herself, for accomplishing the most important thing: growing and being kind. Sure, she tended toward selfishness or manipulation, but it seemed within the bounds of normalcy. And we believed that she could do or be anything.

And then adolescence hit.

Other girls matured and changed, and she didn’t. She couldn’t seem to get the social signaling going on, and didn’t know how to talk and interact like a tween. She wanted to be in the popular clique, but they didn’t want her, and she refused to befriend anyone who did. The same determination that allowed her to accomplish so much became a barrier to us, a wall, a stubbornness that impeded her ability to hear or see the reality others experienced. She heard no one else, could see nothing except her own desires and impulses.

Minor conflicts mushroomed into major ones. All children fight over the use of the bathroom, but she tried to break down the door. Other kids stomp a foot in frustration; she would collapse on the stairs and then accuse us of pushing her down them.

Though he has four inches and 30 pounds on her, she’d attack her brother in a fury, and not understand why he wanted nothing to do with her. Her little brothers and sisters, once the source of so much joy, became annoyances. Though she’s never touched them aggressively, we try never to leave her alone with them.

Fortunately, our community is warm and lovely, and my daughter’s peers clearly see that she’s a girl in pain. After all, she takes every small misunderstanding as an intentional slight, and spins fantastic tales that she thinks are impressive but others finds bizarre.

Her teachers – baffled – mostly have responded to her with warmth and love, generosity and effort that touched my family deeply. One administrator has bent over backwards to work with us, accommodating her frequent absences, adjusting her class schedule, coordinating with the innumerable therapists seeking pictures of how she behaves outside their offices.

And she tells me time and again how much she feels for me, that she sees we’re seeking to get help for her, that we’re unconcerned with shame or standing. Which apparently distinguishes us from so many other families in similar situations. Which is sad.

A few years ago, a well-meaning but ignorant teacher who knows our family from synagogue delayed filling out a teacher form we needed for a neuropsychological evaluation. “I just don’t see why you  want to have her evaluated,” she took me aside at a wedding to explain why she’d not filled it out. “She’s fine at school. Maybe you’re expecting too much?”

I burned silently, thinking of how frightened our then-five-year-old had been the night before when she was awoken by her sister throwing a chair across our kitchen when my husband had told her to turn off her phone. Do I expect too much?

The things people say: “Maybe you’re too inflexible?” “Aren’t you being a little harsh? All teenagers are like this.” “Look, I ran away from home once…” “Hey, my son had behavioral problems but he grew out of them.” “She seems so lovely…”

Can’t you listen to me! I want to scream. This is mental illness, not a phase or just being a teenager. I told you that she is mentally ill. Doesn’t that mean anything to you?

And to those who do seem to get it, please, don’t suggest that, perhaps, she should see a therapist. The four weekly appointments aren’t enough – psycho-therapy, occupational therapy, and trauma treatment, all overseen by a psychiatrist?

Or the most wounding of all, from an actual (well-meaning) friend: “Do you think you’d have more compassion for her if you were her real mother?”

Many people feel mental illness is a stigma. The only shame would be if we refused to deal with it.

Her real mother? The one who abused and abandoned her? I’m just the one who cries myself to sleep with worry, who balances her needs against those of my other children, who plans my schedule around her moods, who sleeps on her floor when we suspect she might try to cut herself, who has been spat upon and threatened with violence. Apparently, I’m just the stand-in.

Hence my desire for the wheelchair.

I realize that many people feel a stigma, feel embarrassed by mental illness. Or maybe their need for privacy is greater than mine. Or maybe it’s a luxury I can’t afford since people know that our eldest children are relatives we adopted. And it doesn’t take tremendous insight or wisdom to recognize that a mother who’s uninvolved in her children’s lives probably isn’t the most normal mother around.

So whether anyone asks or not, they already know that something is up. So I’m comparatively open. I don’t feel that it’s a secret and I don’t think that it’s worthy of shame.

But I realize now what it means to constantly walk on eggshells. Even when she’s doing well, we’re always waiting, worrying that her mood or brain chemistry will shift and we’ll be back in a maelstrom. I’m ever vigilant, always watching her like a hawk. It’s awful for me, and it must be awful for her too.

“How is she?” my friends ask after a hospitalization. Even if she’s fine at the moment, we’re all not – we’re waiting.

Everyone has challenges in life – chronic unemployment, leukemia, marital discord, you name it. Apparently this is my family’s. The only shame would be if we refused to deal with it.

If someone wants to stigmatize me or my children, that’s his decision. I probably wouldn’t want to have much to do with such a person anyway since he’s likely neither wise nor generous.

And I recognize that nearly all the people who’ve wounded me with their comments mean well, however much or little they know or understand.

I want you to know that it’s hard, that I’m struggling.

But I just wish that I had something to signal to others that I have it hard. And that this is real.

Not that I want pity, or even necessarily help (because there really is little that anyone can do). But I want you to know that I’m suffering.

I want you to know that it’s hard, that I’m struggling.

And I want you to understand the patience and strength and resilience of my husband and children. To know that my eldest son lives with constant fear that his sister is destined to turn into the woman who hurt them. And yet he goes on, as we all do. So mindful of all of the goodness we have, in spite of my daughter’s illness.

We’re trying. Please be patient with us.

And I want that compassionate smile.

The neighbor who told me that my daughter would grow out of it eventually got it. Her response opened my heart. After one particularly bad public scene, my neighbor said, “Ach, this is so hard for you. I’m so sorry.”

That’s all I wanted.

That’s all there is.

How can I describe what it is to have to hold down your child while your husband runs for the Xanax? To feel like a prison guard, to set limits by threatening to call the police? All I want is a “Wow, is that hard.”

Yes, I’m ashamed to be jealous of the wheelchair. But sometimes I feel hopeless and tired, and drained. And I just wish that you knew.

Related Posts

🤯 ⇐ That's you after reading our weekly email.

Our weekly email is chock full of interesting and relevant insights into Jewish history, food, philosophy, current events, holidays and more.
Sign up now. Impress your friends with how much you know.
We will never share your email address and you can unsubscribe in a single click.
linkedin facebook pinterest youtube rss twitter instagram facebook-blank rss-blank linkedin-blank pinterest youtube twitter instagram