P.L. Rohe

@plrohe | contributor
I’m the mother of an obstetric brachial plexus palsy warrior.
P.L. Rohe
P.L. Rohe @plrohe
contributor

Netflix's 'Lucifer' Season 5 Features Character With a Limb Disability

As a loyal “Lucifer” fan, I had been so excited to watch the show’s Season 5 (part 1) on Netflix… until I watched the first few minutes of episode 2, “Lucifer! Lucifer! Lucifer!” As the archangel Michael talks to himself in the mirror, we see his true nature, both physically and morally. Michael, it seems, is a modern-day Richard III, a worn-out caricature of a villain whose scoliosis and other physical differences are supposed to telegraph a corrupted internal nature. I see Michael’s arm hanging carefully to one side. I notice how Michael puts his jacket on with the affected arm first. I hear Lucifer talking about his brother with the “sloped shoulder.” I can’t focus on the plot anymore. All I can do is look for other clues about Michael’s arm in the way he carries himself and moves. Does Michael have what I think he does? Is that really where they are going? You see, I’m the mother of a 4-year-old child with an obstetric brachial plexus palsy (OBPI) — my daughter was permanently injured while she was being delivered. As a result, she has a paralyzed left arm and has undergone two surgeries, weekly therapy, dozens of braces and electronic stimulation therapy. The injury impacts her entire body — her balance, her breathing and her core strength. She carries her unaffected shoulder higher than the other. She started to develop scoliosis because of her condition. She puts on her jackets and shirts by putting the affected arm in its sleeve first. But maybe this isn’t what the showrunners plan. Maybe they have something else in mind for Michael. It’s just that I keep a close watch on arms. Most parents of children with OBPI do too. We know about legendary actor and jacket-flipper extraordinaire Martin Sheen and Super Bowl ring-wearing NFL player Adrian Clayborne. We look out for others who are like our kids, because OBPI is such a rare and stigmatized condition. Imagine explaining to a new acquaintance at a birthday party that your child was injured at birth, and that’s why she uses her mouth to open a gift bag. We were once stopped in a restaurant by another OBPI family because they “couldn’t help but notice…” We shared a lot of hugs and tears over chips and guac that evening. A good friend of mine was pulled aside at her son’s track meet when another OBPI family noticed “how he was carrying his arm.” Our children’s disability is sometimes easy to see, but hard to find in common with others. That’s why many OBPI families often have a sacred and almost immediate bond when they run into each other. That shared experience and support helps us to get through days when we experience overt discrimination, or the smaller, but also painful cuts that come from ignorance or lack of compassion in daily life. Many OBPI parents I know will tell you that it hurts most when our children pick up on how they are different from other kids or when our children are actively excluded from things other children get to do. For example, watching a dance class not adapt choreography so your child can fully participate, or hearing another little girl wouldn’t let Eva on the tire swing with her because Eva had a “bendy arm.” Children often want to know, why them? Whose fault was it? Why didn’t Mommy or Daddy stop the accident? If Mommy and Daddy are angry about the accident, does that mean that they are angry at their child? Mental health therapy can help to answer these questions and help parents deal proactively with the trauma of the birth accident. As parents of children with disabilities, we must therefore be especially careful in what we expose our children to as they grow. We seek out and show them disability-inclusive entertainment like “Llama, Llama” and “Paprika” (also on Netflix and frankly, great shows for any child to watch to encourage inclusiveness, understanding and compassion). We take care to introduce them to positive examples of people with limb differences doing amazing things. While Eva, at “4 and a half,” as she likes to remind me, is too young for “Lucifer” right now, there are many teens with limb differences who might be watching. I wonder what they think of Michael, and how Michael’s disability might make them feel when the whole world already tells teens to look a certain way to fit in. Show writers Ildy Modrovich and Joe Henderson haven’t explained yet why Michael has, in an Entertainment Weekly reporter’s ill-chosen words, “a lazy arm.” They do say they feel Michael will be a hero at the end of the story. I would simply ask that they consider everyone in their audience for their ultimate message. What has made “Lucifer” compelling entertainment from the beginning is the concept that good and evil are not so clearly defined by looks, stereotypes, or old-fashioned ideas. A demon can be a hero. The Devil himself can be a force for justice. I hope that Season 5, Part 2, will speak to all of our better angels, those with disabilities and those without.

P.L. Rohe
P.L. Rohe @plrohe
contributor

A Letter of Thanks to the Helpers Who Support My Daughter With a Disab

It’s 7 p.m. and my 4-year-old daughter, Eva, is crying because she is having trouble getting her “Hakuna Matata” shirt off for her bath. I sit on the floor next to her and gently encourage her to keep trying. Eva has only one functioning arm. She bangs her feet on the carpet and starts leaning forward again to try to pull the shirt with her right hand over her head. Almost there… I see Sammy smiling at me from her stuffed animal pile in her room. I realize my shoulders were hunching up from the tension I was holding. I exhale and unclench my hands. Sammy is a very plush, giant monkey wearing a lime green vest with a zipper and big, plastic buttons over his two front pockets. He has a star pattern on the bottom of his feet and a long furry tail. A grandmother I will never meet bought the monkey, measured him and handmade his clothing. Then, she wrapped him like a birthday present and donated him and some other similarly costumed monkeys to the children’s hospital where my daughter receives occupational therapy for her disability. “This monkey can help Eva learn to dress herself one day,” our therapist, Megan, told us as she handed us the gift. Eva was only a year old at the time. As her parents, we weren’t ready to think about how she might be different than other healthy children, even though she had started to miss some developmental milestones. Eva got stuck during her delivery and the maneuvers used to free her, paralyzed her left arm permanently. So, in addition to adjusting to life with a newborn, we had biweekly physical and occupational therapy visits and a whole host of worries and questions about Eva’s future. We also didn’t know anyone with Eva’s condition and there wasn’t much helpful information on the internet. We felt very alone. This open-hearted lady and her thoughtful gift caught us at our lowest, and her memory has since pushed me to focus forward on Eva’s recovery. Sammy was made with the intention that Eva will learn to dress herself one day, and I must believe in that intention to see it happen. But, sometimes, I’ll admit to feeling a little more helpless than hopeful. Fred Rogers, a pioneer in children’s television who created  “Mister Rogers’ Neighborhood,” once said that his mother would console him when bad things happened by telling him to “look for the helpers — you will always find helpers when terrible things are happening.” I see you, grandma, working all afternoon at your sewing machine to bring a smile to a child’s face. I see you, occupational and physical therapists, being patient and kind when Eva has a tantrum — which feels like every session. I know she isn’t the first kid in your day to not want to listen or to overturn that unassuming basket of toys, and yet, you find a way to engage her and make her smile. I see you, teacher, who ensures my child with a disability always is included in activities, even if you have to hoist all 40 pounds of her up so she can do the climbing wall like the other kids. I see you, doctor, standing at the operating table for hours upon hours with no break for food on my apple-cheeked and sassy six-month-old. You know that you are responsible for our baby, our whole world and you take such careful care of her. I see you, friends and family, crying with us on hard days and celebrating in our joys — and bringing all the cheese dip. I see you, lawmakers and law defenders, fighting for justice, sometimes against the tide, so that we can do what’s right for our most vulnerable citizens. I see you all, helpers. And I am deeply thankful. You all are with me tonight when I need to be reminded that I am not cornered by our challenges…I have you in my corner. Eva, though, doesn’t need any of us. Her shirt collar gets stuck on top of her eyes. Her tears stop and she starts to giggle. “Mommy! Look at my new hat!” She is smiling with her shirt half over her face. Then, she pulls, and grunts and pulls some more. She’s gotten free of the shirt. And to the bath we go. Later, as I tuck her into sleep, she snuggles up with Sammy. His shirt is still on, and that’s OK. Maybe we will get it off tomorrow.

Community Voices
P.L. Rohe
P.L. Rohe @plrohe
contributor

Explaining Disability to Children With Birth Injuries

My daughter Eva is 3 years old and always seems to be looking for exceptions to the rules. “Why can you stay up and I have to go to bed?” Or “Why don’t men wear shirts when they are running and women do?” But the question I wasn’t prepared for came when we were pulling out of her daycare parking lot one early afternoon. Normally, my daughter is happy to leave “school” and go home and play or go to the park. But she knows these mid-afternoon pickups are different — she knows they take her away from another game of “Frozen” on the playground or music time, or even snack time (yes, snack time is a pretty big deal to a pre-schooler). “Why do my friends get to stay and play outside and I have to go to therapy?” she asked. And my heart fell. I realized that although we had been going to occupational therapy regularly since she was 6 weeks old, we had never told her why . If I’m honest, I was avoiding the conversation. Eva goes to biweekly therapy to help her recover from an injury she experienced as she was being born — it’s called obstetric brachial plexus palsy. Her left arm is paralyzed and two surgeries later, she struggles to wiggle most of “Leftie’s” fingers and hasn’t yet been able to bend her elbow. Her therapies are stressful. There’s time off work for myself or my husband. There’s worrying and wondering what progress, if any, is being seen in her recovery, and there’s the hard slog getting a squirmy, easily distracted kid to cooperate with exercises and activities. She knows we pay a lot of attention to her Leftie, and she knows it functions differently than other children’s arms do. But we hadn’t really shared with her what happened to her. We have tended to gloss over her questions about her birth and babyhood that every toddler her age seems to have. Answering Eva’s questions about why she has to go to therapy or what it was like when she was born means I have to re-surface my own trauma from her delivery. You know that book, “On the Night You Were Born”? It’s beautiful, but I admit, I only read it to her once before I tearfully put it back on the shelf never wanting to open it again. The book was a baby shower gift, after all, one I didn’t want to throw away just because it made me feel sad. And yet, whenever Eva reaches for it, I carefully redirect her to anything else — even if it means reading “Max’s Breakfast” a million times. Despite three years of counseling, I still suffer when I’m reading her a board book with polar bears on the cover because it conveys the emotions of the typical birth she and I deserved and never got. Back to the highway, we were running late to our appointment and had reached a traffic standstill. I didn’t want to wait to answer her until we reached therapy, but I was in the front and she was in her car seat in the back. I couldn’t take her into my arms and cuddle her. And still, Eva’s complaint hung there, like a one-question, pass/fail exam. If I ignored it, Eva might feel dismissed. If I chose the wrong words, their impact might be hard to undo later. Toddlers seem always to find the wrong statement to hang onto like an empty lollipop stick. So, our conversation went something like this: Me: “You know how some kids skin their knees on the playground and other children don’t?” Eva: “Yeah.” Me: “Well, some babies are born healthy and some get hurt when they are born. You got hurt.” Eva: “But why did I have to get hurt?” Me: “I don’t know, honey. But I do know that no one wanted you to get hurt. And Mommy and Daddy and your therapists and doctors and all your family and friends do a lot to help your Leftie feel better.” I’m not sure if I’ve convinced her or said enough to help her feel less frustrated by her situation. I could see her in my rear view window in her Minnie Mouse t-shirt playing with her pink tennis shoes with her right hand only. Eventually, she asked a question about why there is “traffic,” and we moved on. Did I pass or fail? I don’t think I’ll know for a while. For those who may wonder why I don’t point out children with more involved conditions than her — whom she sees at her appointments — it’s because I don’t believe these comparisons are fair to either child. I wouldn’t want a healthy child using Eva as a reason to be grateful for what he or she has. Eva’s self-acceptance and gratitude for who she is and what she has must come from within, not as a result of misplaced pity or uninformed judgement about someone else’s life. We arrive at the room with the gym where she pops bubbles and catches balls to learn to use Leftie. I ask her therapist to talk to her a little more about her condition. “I think mommy and daddy are sad about Leftie. I think they would be happy if it [her injury] didn’t happen.” This is true. I can’t deny any of it. Her therapist tells her that even if we are sad, we still want Leftie to get better. And I tell her that we think she is wonderful just as she is. I make a mental note to tell her this more often. As hard as Eva works on her physical recovery, I am convinced we now must begin work, sooner than I thought, to support her emotional health as well. Perhaps that will involve psychological therapy for her as well. Meanwhile, I’ll keep talking to her about her injury, and about her birth. It is going to be hard, and the words aren’t going to be easy to find, but it will be important for her and for me. This story needs to come off the shelf. And perhaps, in telling it more often, we both will come to accept and embrace these injured parts of ourselves.

P.L. Rohe
P.L. Rohe @plrohe
contributor

Explaining Disability to Children With Birth Injuries

My daughter Eva is 3 years old and always seems to be looking for exceptions to the rules. “Why can you stay up and I have to go to bed?” Or “Why don’t men wear shirts when they are running and women do?” But the question I wasn’t prepared for came when we were pulling out of her daycare parking lot one early afternoon. Normally, my daughter is happy to leave “school” and go home and play or go to the park. But she knows these mid-afternoon pickups are different — she knows they take her away from another game of “Frozen” on the playground or music time, or even snack time (yes, snack time is a pretty big deal to a pre-schooler). “Why do my friends get to stay and play outside and I have to go to therapy?” she asked. And my heart fell. I realized that although we had been going to occupational therapy regularly since she was 6 weeks old, we had never told her why . If I’m honest, I was avoiding the conversation. Eva goes to biweekly therapy to help her recover from an injury she experienced as she was being born — it’s called obstetric brachial plexus palsy. Her left arm is paralyzed and two surgeries later, she struggles to wiggle most of “Leftie’s” fingers and hasn’t yet been able to bend her elbow. Her therapies are stressful. There’s time off work for myself or my husband. There’s worrying and wondering what progress, if any, is being seen in her recovery, and there’s the hard slog getting a squirmy, easily distracted kid to cooperate with exercises and activities. She knows we pay a lot of attention to her Leftie, and she knows it functions differently than other children’s arms do. But we hadn’t really shared with her what happened to her. We have tended to gloss over her questions about her birth and babyhood that every toddler her age seems to have. Answering Eva’s questions about why she has to go to therapy or what it was like when she was born means I have to re-surface my own trauma from her delivery. You know that book, “On the Night You Were Born”? It’s beautiful, but I admit, I only read it to her once before I tearfully put it back on the shelf never wanting to open it again. The book was a baby shower gift, after all, one I didn’t want to throw away just because it made me feel sad. And yet, whenever Eva reaches for it, I carefully redirect her to anything else — even if it means reading “Max’s Breakfast” a million times. Despite three years of counseling, I still suffer when I’m reading her a board book with polar bears on the cover because it conveys the emotions of the typical birth she and I deserved and never got. Back to the highway, we were running late to our appointment and had reached a traffic standstill. I didn’t want to wait to answer her until we reached therapy, but I was in the front and she was in her car seat in the back. I couldn’t take her into my arms and cuddle her. And still, Eva’s complaint hung there, like a one-question, pass/fail exam. If I ignored it, Eva might feel dismissed. If I chose the wrong words, their impact might be hard to undo later. Toddlers seem always to find the wrong statement to hang onto like an empty lollipop stick. So, our conversation went something like this: Me: “You know how some kids skin their knees on the playground and other children don’t?” Eva: “Yeah.” Me: “Well, some babies are born healthy and some get hurt when they are born. You got hurt.” Eva: “But why did I have to get hurt?” Me: “I don’t know, honey. But I do know that no one wanted you to get hurt. And Mommy and Daddy and your therapists and doctors and all your family and friends do a lot to help your Leftie feel better.” I’m not sure if I’ve convinced her or said enough to help her feel less frustrated by her situation. I could see her in my rear view window in her Minnie Mouse t-shirt playing with her pink tennis shoes with her right hand only. Eventually, she asked a question about why there is “traffic,” and we moved on. Did I pass or fail? I don’t think I’ll know for a while. For those who may wonder why I don’t point out children with more involved conditions than her — whom she sees at her appointments — it’s because I don’t believe these comparisons are fair to either child. I wouldn’t want a healthy child using Eva as a reason to be grateful for what he or she has. Eva’s self-acceptance and gratitude for who she is and what she has must come from within, not as a result of misplaced pity or uninformed judgement about someone else’s life. We arrive at the room with the gym where she pops bubbles and catches balls to learn to use Leftie. I ask her therapist to talk to her a little more about her condition. “I think mommy and daddy are sad about Leftie. I think they would be happy if it [her injury] didn’t happen.” This is true. I can’t deny any of it. Her therapist tells her that even if we are sad, we still want Leftie to get better. And I tell her that we think she is wonderful just as she is. I make a mental note to tell her this more often. As hard as Eva works on her physical recovery, I am convinced we now must begin work, sooner than I thought, to support her emotional health as well. Perhaps that will involve psychological therapy for her as well. Meanwhile, I’ll keep talking to her about her injury, and about her birth. It is going to be hard, and the words aren’t going to be easy to find, but it will be important for her and for me. This story needs to come off the shelf. And perhaps, in telling it more often, we both will come to accept and embrace these injured parts of ourselves.

P.L. Rohe
P.L. Rohe @plrohe
contributor

Explaining Disability to Children With Birth Injuries

My daughter Eva is 3 years old and always seems to be looking for exceptions to the rules. “Why can you stay up and I have to go to bed?” Or “Why don’t men wear shirts when they are running and women do?” But the question I wasn’t prepared for came when we were pulling out of her daycare parking lot one early afternoon. Normally, my daughter is happy to leave “school” and go home and play or go to the park. But she knows these mid-afternoon pickups are different — she knows they take her away from another game of “Frozen” on the playground or music time, or even snack time (yes, snack time is a pretty big deal to a pre-schooler). “Why do my friends get to stay and play outside and I have to go to therapy?” she asked. And my heart fell. I realized that although we had been going to occupational therapy regularly since she was 6 weeks old, we had never told her why . If I’m honest, I was avoiding the conversation. Eva goes to biweekly therapy to help her recover from an injury she experienced as she was being born — it’s called obstetric brachial plexus palsy. Her left arm is paralyzed and two surgeries later, she struggles to wiggle most of “Leftie’s” fingers and hasn’t yet been able to bend her elbow. Her therapies are stressful. There’s time off work for myself or my husband. There’s worrying and wondering what progress, if any, is being seen in her recovery, and there’s the hard slog getting a squirmy, easily distracted kid to cooperate with exercises and activities. She knows we pay a lot of attention to her Leftie, and she knows it functions differently than other children’s arms do. But we hadn’t really shared with her what happened to her. We have tended to gloss over her questions about her birth and babyhood that every toddler her age seems to have. Answering Eva’s questions about why she has to go to therapy or what it was like when she was born means I have to re-surface my own trauma from her delivery. You know that book, “On the Night You Were Born”? It’s beautiful, but I admit, I only read it to her once before I tearfully put it back on the shelf never wanting to open it again. The book was a baby shower gift, after all, one I didn’t want to throw away just because it made me feel sad. And yet, whenever Eva reaches for it, I carefully redirect her to anything else — even if it means reading “Max’s Breakfast” a million times. Despite three years of counseling, I still suffer when I’m reading her a board book with polar bears on the cover because it conveys the emotions of the typical birth she and I deserved and never got. Back to the highway, we were running late to our appointment and had reached a traffic standstill. I didn’t want to wait to answer her until we reached therapy, but I was in the front and she was in her car seat in the back. I couldn’t take her into my arms and cuddle her. And still, Eva’s complaint hung there, like a one-question, pass/fail exam. If I ignored it, Eva might feel dismissed. If I chose the wrong words, their impact might be hard to undo later. Toddlers seem always to find the wrong statement to hang onto like an empty lollipop stick. So, our conversation went something like this: Me: “You know how some kids skin their knees on the playground and other children don’t?” Eva: “Yeah.” Me: “Well, some babies are born healthy and some get hurt when they are born. You got hurt.” Eva: “But why did I have to get hurt?” Me: “I don’t know, honey. But I do know that no one wanted you to get hurt. And Mommy and Daddy and your therapists and doctors and all your family and friends do a lot to help your Leftie feel better.” I’m not sure if I’ve convinced her or said enough to help her feel less frustrated by her situation. I could see her in my rear view window in her Minnie Mouse t-shirt playing with her pink tennis shoes with her right hand only. Eventually, she asked a question about why there is “traffic,” and we moved on. Did I pass or fail? I don’t think I’ll know for a while. For those who may wonder why I don’t point out children with more involved conditions than her — whom she sees at her appointments — it’s because I don’t believe these comparisons are fair to either child. I wouldn’t want a healthy child using Eva as a reason to be grateful for what he or she has. Eva’s self-acceptance and gratitude for who she is and what she has must come from within, not as a result of misplaced pity or uninformed judgement about someone else’s life. We arrive at the room with the gym where she pops bubbles and catches balls to learn to use Leftie. I ask her therapist to talk to her a little more about her condition. “I think mommy and daddy are sad about Leftie. I think they would be happy if it [her injury] didn’t happen.” This is true. I can’t deny any of it. Her therapist tells her that even if we are sad, we still want Leftie to get better. And I tell her that we think she is wonderful just as she is. I make a mental note to tell her this more often. As hard as Eva works on her physical recovery, I am convinced we now must begin work, sooner than I thought, to support her emotional health as well. Perhaps that will involve psychological therapy for her as well. Meanwhile, I’ll keep talking to her about her injury, and about her birth. It is going to be hard, and the words aren’t going to be easy to find, but it will be important for her and for me. This story needs to come off the shelf. And perhaps, in telling it more often, we both will come to accept and embrace these injured parts of ourselves.

P.L. Rohe
P.L. Rohe @plrohe
contributor

Learning to Let Go of My Child Who Has a Physical Disability

Not too long ago at a playground, my daughter, Eva, gave me a mischievous smile as she approached a low, raised wall. Her friend, Teddy, also 3 years old, already was walking along the wall with his arms out to balance him. I had discouraged Eva in the past from climbing on things like other children do. I told her to balance on a smaller raised area first and see how she did, but the bigger challenge still attracted her. She ran over to the area and looked back at me and laughed and then would go somewhere else for a few moments — only to turn around and run right back. I am afraid. Her left arm is permanently paralyzed due to an injury she had while she was being delivered — a brachial plexus birth palsy. If she climbed on that wall and fell, what would happen if she got injured? What would happen if she broke her right arm, the one that has learned to do everything her left arm can’t? This fear follows me every time we are at the playground, or when she runs in our backyard, or when she slides on her socks in our living room. We tried a cast on her right, functioning arm once, to try to encourage her brain to learn to use Lefty however she could. Eva became a different child during those sessions understandably — her reaction had me in tears after only a few moments. It’s one thing to watch your child struggle with the daily setbacks of a disability, but I found it was a whole other ballgame for me to watch my usually cheerful and determined little girl crumble under the constraints of the cast. Eva has been through two surgeries to repair the damage caused by her injury, and has been in occupational therapy since she was 6 weeks old. We do electric stimulation, stretches and aquatic therapy. We’ve consulted some of the leading surgeons in the world on her condition — which is rare because it is so severe, and her prognosis for recovery of function is uncertain. One of the surgeons we spoke with told me not to be too overprotective at the park. “Don’t stop her from trying the monkey bars,” he said as Eva played with Mr. Potato Head and Lefty hung at her side. At the time, I was furious with the doctor. Didn’t he understand the trauma we had all experienced with her injury? He didn’t know me. I wasn’t some helicopter parent; I was fighting for my little girl’s future! As Eva grows up, her injured arm may experience disfigurement and chronic pain. But, after a lot of counseling and a community of wonderful people supporting us, I have started to reframe how I look at Eva’s world. I have stopped mourning the things I think she can’t do, and started to ask myself and others, how she can adapt to a new activity or confront a new challenge. She may not be able to bend her elbow, but she will learn to drive with adaptations. She may learn to put on jackets like actor Martin Sheen does, which isn’t a bad thing (he has the same kind of injury as Eva). There are still plenty of frustrations for her — and feelings my husband and I wrestle with about what happened to her. But that afternoon at the park, as I watched Eva balance on the small wall, I thought of that doctor and the advice I hadn’t wanted to take. I realized he might just have been right. I can’t organize her life around my own fears and my perception of her condition. She has to learn to tackle challenges and opportunities on her own. So, I made a decision. I told her to try the bigger wall. Off she ran and up she climbed, and around she went — one arm out to balance her. And when she made it the whole way, she looked at me and smiled with such pride and happiness. I made a silent promise to her that afternoon. I can’t always be there to catch her when she falls, and she will fall one day. But, perhaps, sooner than I would like, she will want to take on a new part of the playground. I hope to teach her how to do it safely, and then, I’ll let go and watch her rock those monkey bars.