If people only see my difficulties and my struggles, they miss out on my energy, passion, resilience, and strength.

If people only see my energy, passion, resilience, and strength, they miss out on what is really challenging for me and where I might need help. 

I want to be seen in my wholeness, which includes both my struggles and my strengths. 

If you miss either of those, you miss seeing my authentic self.

Kristin Masters, Certified Nonviolent Communication Trainer

Our creative & resilient children
Prioritizing strengths over struggles
Finding balance
Fostering intrinsic motivation over external validation 
Example 1: the “prove them wrong” trap
Example 2: the silent struggler
Actionable tips for parents & allies
Quick summary
Want to learn more?

Our creative & resilient children

Many children with limb differences are extraordinary, not because of what they have “overcome,” but because of who they are: creative, resilient, resourceful, and whole. As parents, allies, or professionals supporting these amazing children, we naturally want the world to see them for their incredible strengths and capabilities.

Many parents share stories about their children’s accomplishments to celebrate their children’s unique talents and to challenge ableist assumptions about what people with physical differences and disabilities are capable of. These stories can help both the limb different and limb typical communities, by showing the world that children with limb differences can thrive in every area of life.

But there’s more to the story. It’s important to consider how this focus on strengths might impact our children. How can we balance celebrating their triumphs with supporting them during struggles? How do we help them grow into their full, authentic selves — embracing both their strengths and their challenges?

This post explores how we can honor and celebrate children with limb differences while ensuring they feel seen, heard, and supported in every aspect of their lives. Whether you’re a parent, a friend, or a professional, this conversation is for you.

Prioritizing strengths over struggles

The many strengths of children with limb differences deserve recognition. But focusing solely on celebrating achievements may unintentionally send the message to children that they should downplay or hide challenges or difficult emotions. Fearing that their parents or supporters value only their successes, children may hold back from sharing their struggles. So it’s vitally important that they know it’s okay to talk about their struggles, too, and to know that they’re not alone in these struggles.

Finding balance

This doesn’t mean we stop celebrating their accomplishments. In fact, showing excitement and pride when a child masters a new skill or tackles a tough task can be incredibly motivating and validating for them. But children also need space to express what’s hard for them. When they feel safe sharing their challenges, they learn that it’s okay to ask for help and that their worth isn’t tied to their achievements.

As parents, allies, and professionals, we can find a balance with children with limb differences:

• Celebrate their triumphs while also normalizing discussions about struggles
• Show them that all of their feelings — whether about successes or frustrations — are valid and welcome
• Teach them that they don’t need to prove their worth to anyone; their value lies in who they are, not what they can do

Fostering intrinsic motivation over external validation 

As parents, coaches, and allies, we have choice in how we frame our children’s challenges and successes. Instead of encouraging our children to “show them all what you can do,” we can choose to focus on our children’s adaptability, creativity, and problem solving skills. This subtle shift can help foster intrinsic motivation, allowing children to feel pride in their growth for themselves, rather than seek validation from others.

Example 1: the “prove them wrong” trap

A child with a limb difference climbs the monkey bars for the first time. A proud parent snaps a photo and captions it, “Bet you didn’t think they could do that!” While well-meaning, this framing places the focus on proving others wrong, potentially teaching the child that their value lies in defying others’ expectations. Over time, they might start choosing activities not because they enjoy them, but to gain external approval or validation. Read about the “Overachiever Trap.”

Ultimately, the goal is to help children see themselves as whole — strong and capable, but also human, with struggles and vulnerabilities. It’s this balance that will empower them to grow into their authentic selves.

Example 2: the silent struggler

Now consider a different scenario: Imagine a child who has just figured out how to tie their shoelaces using one hand. The family celebrates this big milestone with cheers, high-fives, and maybe even a social media post. While this recognition may feel great in the moment, the child might hesitate to share their feelings about how hard and frustrating the process was for them. Perhaps they felt discouraged after multiple failed attempts or worried they would never succeed. If no one asks about how they felt about the challenges they faced, the child might internalize the belief that their struggles don’t matter. Or even worse, they may conclude that sharing them shows weakness.

Actionable tips for parents & allies

Here are some practical ways to support our children:

• Ask Open-Ended Questions: After celebrating an accomplishment, ask, “What was the hardest part about learning this?” or “How did you keep going when it got tough?” This invites them to share their challenges and reflect on their resilience.
• Validate Their Feelings: If a child says something like, “I hated how long it took to figure this out,” respond with, “That sounds really frustrating. I’m so proud of you for sticking with it.”
• Celebrate the Process, Not Just the Outcome: For example, instead of saying, “You’re amazing for climbing the monkey bars!” try, “I could see how hard you were working to get to the top. How did it feel to make it across?”

Quick summary

• Welcome all their feelings — whether about successes or frustrations
  • If your child says, “It took too long to figure this out!” respond with, “That sounds really frustrating. I’m so proud of you for sticking with it.”

• Teach them that they don’t need to prove their worth to anyone
  • Their value lies in who they are, not what they can do
  • Avoid the “show them all what you can do” or “bet they didn’t think you could do that!” mindset

• Ask open-ended questions
  • After celebrating an accomplishment, ask, “What was the hardest part about learning this?” or “How did you keep going when it got tough?” 
  • These questions invite them to share their challenges and reflect on their resilience

• Celebrate their creavity & problem solving, not just the outcome
  • For example, instead of saying, “You’re amazing for climbing the monkey bars!” try, “I could see how hard you were working to get to the top. How did it feel to make it across?”

Want to learn more?

Read about the “Overachiever Trap.”
Read about Overuse Syndrome.

© 2026. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy. All rights reserved.

The post Seeing the Whole Child with a Limb Difference: appeared first on On The Other Hand.

Here are some moments of sweetness that parents have shared over the years:

Your child plays with a toy or doll that looks like them
Your child communicates (says, draws, sings, etc.) something positive about their difference
Your child recognizes themselves in a book with a limb different character
Your child chooses how to respond to questions about themselves & their limb difference
Your child bonds with someone with a similar limb difference
Your child accomplishes a challenging task
Your child asks for help or an accommodation when they need it
Another child (or adult!) says something positive about your child’s limb difference
Another child holds your child’s different hand/arm

Your child plays with a toy or doll that looks like them

Unfortunately, there is a lack of extensive research specifically focused on the benefits children with physical differences receive from playing with dolls that mirror their differences. However, greater representation and inclusivity in play have been widely recognized as important contributors to the overall well-being and development of children with physical differences. 

Parents of children with limb differences recognize the importance of having their children represented in the toys they play with. Parent Kimberly Gallagher says:

Having a doll or a toy that looked like my son was so crucial to show him that it’s okay to be different and that he’s not alone. I also think there’s so much value for other kids to see toys/dolls with differences, because it’s not as shocking when they see others with disabilities. My son will almost never see a toy that looks like him, so we are so grateful he has something he can connect to.

The great news is that many organizations, businesses, and craftspeople create dolls and toys with limb differences, most of which can be customized. For more information about these organizations and businesses, look here. Below are just a few of the many options available.

People with limb differences also recognize the value of adapted toys and dolls for themselves. Disability rights activist, educator, and writer Julia Betancourt shared:

When I was a child, my mom would cut and sew my Cabbage Patch dolls so they’d have arms to match mine. I still have these dolls today, as well as other dolls I’ve searched for that look like me. Seeing a doll like me is a form of acceptance that allows me and characters like me to enter my imaginative play. Even as an adult, I get excited every time I see my doll with an arm that matches mine; I think it’s my inner child celebrating being able to see myself represented in a way that I didn’t get much of when I was younger.

Your child communicates (says, draws, sings, etc.) something positive about their difference

I like drawing my self portraits with my little arm because it’s beautiful and it makes me happy. My little arm is my favorite part about me.

Makenzie

This could be when introducing themself to their classmates, meeting peers at a weekend gathering for families of children with limb differences, sharing artwork with grandparents, or hanging out with teammates on the soccer team. Parents have shared that when they hear their child drawing, speaking, or writing proudly about their limb difference, they feel especially elated and proud because they see their child loving and accepting themselves for who they are. 

Your child recognizes themselves in a book with a limb different character 

There are many children’s picture books with characters with upper and lower limb differences (or both!). Some of the books focus on some aspect of living with a limb difference, whereas other books simply feature a character who has a limb difference, but it isn’t integral to the story.

👉 Read Choosing Books for Your Child to learn more about this topic. 

Your child chooses how to respond to questions about themselves 

Many parents have shared their amazement and awe of their children in how they answer – or choose not to answer – questions about their differences. Children with visible differences typically have to learn from a young age how to respond to questions, some of which may be asked in a caring and kind way, but many of which may not. When a child chooses how to respond, they display a remarkable amount of courage, self-awareness, and understanding.

Stay tuned for an upcoming post dedicated to this topic.

Your child bonds with a peer or older person with a similar limb difference

Mom: “What does knowing Jaleesa mean to you?”

Jahzara: “It means it’s ok to have one hand. You have to love yourself. It’s ok not to be like everyone else.”

@che_millz

Opportunities to meet peers and young or older adults with similar differences are most likely to occur at weekends or meetups for families of children with limb differences. According to research,

These events helped to develop a sense of belonging to a group of children with the same diagnosis and challenges.… An understanding of each other’s situation minimized feelings of loneliness [and] promoted a positive image…. Participating in camps or group activities also meant opportunities [for children to] acquire role models.

Sjöberg, 2022

👉 Read my reflections on Lucky Fin Weekend summer 2023 and those of other adults with upper limb differences who attended the weekend. Read highlights on Hands To Love Hand Camp, March-April 2023.

Your child accomplishes a challenging task

For example, your child learns to ride a bicycle with or without training wheels, to tie shoelaces, do their hair, hold a piece of paper while they cut with scissors, string beads to make a bracelet – the list is endless! Of course it is natural and to be expected that parents would feel overjoyed when their child accomplishes a task, particularly one that parents may have feared their child could not do independently.

👉 Learn about how overly praising accomplishments can lead to other issues, such as The Overachiever Trap.

Your child asks for help or an accommodation when they need it

Developing a healthy early habit of asking for help or accommodations when appropriate is a good first step toward avoiding or mitigating future overuse syndrome. Asking for help shows that the child has developed both confidence and self awareness about their difference, and is learning to advocate for themselves. 

Another child (or adult!) says something positive about your child’s limb difference

I still remember when my daughter, aged five at the time, told me how I was so lucky to have a hand difference because “G-d had made me special” – I nearly hit the floor out of shock because I never expected to hear a child frame my difference in such a positive way! I have heard stories of children saying that their friends’ differences are “cool’ or that their prosthetics are “amazing.”

Please share your anecdotes of others’ kind words about your child’s hand difference here to be included in a future post.

Another child holds your child’s different hand/arm

Parents have shared their incredible joy and happiness when a child feels comfortable holding the hand or arm of a child with a limb difference. (In the photo above, it may be hard to see that the child wearing the black t-shirt has a left hand difference). Parent @elainasimeona writes:

Here is a picture of one of Luca’s friends holding his left hand (luckyfin) without a care in the world. Why? Because she learned that everyone has something unique about them, and just because Luca’s hand is different he is just like any kiddo. She holds his hand because she has been educated, she is aware and because she loves him unconditionally. … These are the friends WE all want for our kiddos.

It is important to note that your child needs to have a say in how and when others hold their different hand/arm. Stay tuned for an upcoming post dedicated to the topic of explaining consent to your child in this context.

Links from this article and References

👉 Dolls and toys with limb differences
👉 Choosing Books for Your Child
👉 The Overachiever Trap
👉 Overuse Syndrome

Sjöberg, L., Hermansson, L., Lindner, H., & Fredriksson, C. (2022). Adolescents with congenital limb reduction deficiency: Perceptions of treatment during childhood and its meaning for their current and future situation. Child: Care, Health and Development, 48(4), 613–622. https://doi.org/10.1111/cch.12967

To see the original Instagram post, look here and to follow us here to see more posts!

Please share your anecdotes of others’ kind words about your child’s hand difference here to be included in a future post.

Many thanks to @a_doll_like_me, @astepaheadprosthetics, @che_millz, @crochet_ables, @elainasimeona, @julesbeta, @jaleesagraham, @kaleonahenaheokekai, @lego, @lucky_fin_project, @max.zebedee, @stanfieldmom

©2023. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy

The post Moments of Sweetness while Raising a Child with a Limb Difference appeared first on On The Other Hand.

“Mommy, I want to go see the pink table!” The little girl tugged on her mother’s arm. 

This past weekend, people of all ages with upper limb differences traveled to Troy, Michigan from all over the country (and even Canada and Mexico!) to participate in the Lucky Fin Project annual picnic. As an adult with a congenital hand difference (one full hand and the other with a thumb and 3 “nubbins”) who didn’t have this experience as a child, seeing the Lucky Fin children embracing their true, beautiful selves brings me such joy: watching them laugh, play, run around, and do what children do when they are free from fear of comments, stares, and questions. 

As a pediatric occupational therapist (OT), being able to showcase adaptive products and practical strategies with my limb difference community helps to start conversations and connect with one another. Specifically, OTs encourage using the “lucky fin” side (one or both) during activities to reduce strain to the dominant side, decreasing the likelihood of “overuse syndrome.”

At this year’s picnic, I demonstrated EazyHold‘s stretchy silicone straps (also known as “universal cuffs”), which come in a rainbow of bright colors and sizes. Splayed out across the bright bubblegum pink tablecloth were an assemblage of jump ropes, eating utensils, musical instruments, and self care products – all outfitted with the straps. 

For some children, using the straps enables them not just to use their Lucky Fins to grasp objects, but also to use both hands simultaneously. Although the pink tablecloth might have captivated the little girl, the ability to try jumping rope for the first time and the encouragement from others kept her there. 

Every time I participate in one of these weekends, I am changed forever. A part of me unfreezes and I grow more into the person I am meant to be, internalizing a deeper sense of belonging. I meet extraordinary people who just “get it”, and I feel hopeful about a future inclusive society. Spending a weekend in real life connecting with people who experience life as I do is truly magical. 

The hardest part is always leaving. I watched children and parents who, like me, didn’t want to say goodbye. Finding a place where you are accepted unconditionally, without judgment, is both beautiful and rare. I will never take for granted belonging to a community not in spite of my physical differences, but because of them. 

I am so grateful to everyone who worked so hard to make this incredible weekend possible! Special thanks to Molly Stapelman, Ruth Rathblott, Julie Sanders-Keymer; Jocelyn Hunt, Greg Kuechler, and Matt Trott, who helped with my display table; the families who came from far and wide; and all of the adults – with and without limb differences – who have embraced creating a spirited, welcoming community with such enthusiasm!

To see more photos from the weekend, look here. For additional reflections from adults who attended the weekend, look here.

Learn more about EazyHold assistive grips.

Learn more about overuse syndrome in people with upper limb differences.

© 2023. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy

The post Lucky Fin Weekend Reflections 2023 appeared first on On The Other Hand.

Had I been able to articulate what support I needed as a child, here is what I would have requested of the adults in my life

I have some requests. Please:

Don’t make me prove to you that I’m okay. I need you to trust that I will be okay and will have a great life.

See me as whole and remind me often that I am.

Get whatever help/support you need so you are able to be present when I need you to listen & validate my experiences. When you take care of your own emotions around my limb difference, I get to be a kid rather than a care taker.

Understand that grieving is a process. Grieve the child you didn’t have as often as you need so that you can truly love the one you do.

Realize that you may always question and worry about whether you are doing/have done enough for me. But the most important thing you can do is to love me exactly as I am.

Reaching out to others who have this special situation helps all of us to be able to anticipate what unusual circumstances I may deal with in my life.

Don’t allow anyone decide for me what I can and can’t do.

Support me in the things I want to pursue. But also remind me that I don’t have to do everything everyone else does. Help me to learn the concept of choice.

I am really proud of myself for figuring out how to do so many things for myself. Don’t assume that I will figure out everything independently – please be available when I need you to be there for me.

Appreciate that even though being different can be amazing, it also can be hard and challenging. When I go out into the world, not everyone sees how wonderful my difference is.

Understand that accepting my body is ever changing: one moment I might love my different hand and the next I might think it is ugly. Support me and be patient as I navigate this very confusing process.

Understand that sometimes people may focus on my differences too much. At other times, they may not focus on it enough. Help me to learn how to recognize and advocate for what I need.

Be aware as I grow that asymmetries in the body are cumulative. Things that are easy for me to do with my different or dominant side when I am young may be harder as I get older. If I ever tell you that my body hurts, listen and consult with someone with expertise.

Model asking and accepting help from others. Seeing you do this will make it easier for me to ask and accept help from others. After all, everyone needs help sometimes.

When I’m old enough to do more for myself, be with me rather than do for me. Work with me to problem solve. Even when I no longer ask you for help, continue to let me know you’re here for me. If I refuse your offer, don’t be offended – one day I may accept others’ help.

Recognize that as I get older, you may be tricked by my super creative adaptations into thinking that I have figured it all out. I need you to know that it sometimes it’s not easy but actually really hard. Please remind me how strong and resilient I am – it helps when you remind me how hard I’ve worked and how far I’ve come.

Above all, know that I love you ❤️ even if I don’t always remember to thank you for everything you do for me!

Read the other posts in this series:

• Mother’s Day Letter to my Mother
• Letter from a Parent to their Child with a Limb Difference
• Letter to my Younger Self

© 2026. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy. All rights reserved.

The post Letter to my Parents, Teachers, and Coaches from my Younger Self appeared first on On The Other Hand.

Dear sweet one,

You were born with a little left hand. I don’t know why. The doctors don’t know why. No one knows why. As you grow up, you will pick up messages from the world that because of your hand, you are defective, deficient, less than, incomplete, and therefore not lovable. G-d willing no one will ever say these cruel things to you directly, but you will absorb them nonetheless. I wish I could protect you from these messages, because they are lies, very convincing but utterly untrue lies. You don’t have to have ten fingers or two full arms to be lovable. The fact that your hand is how it is doesn’t change that you are loved exactly the way you are, exactly the way you were born. I wish I could go into your brain and remove these false beliefs, but all I can do is warn you to watch out for them. To remind you to guard yourself against them, and to be ever vigilant against them.

Of course you know that sometimes life will be incredible and wonderful for you. And at other times, life will be hard for you, and it absolutely sucks that you will go through that. I wish I could stop it from happening, but we both know that I can’t. But I will be here for you. Many people are here for you, including people alive now and people/relatives from the past, and even people whom you’ve not even yet met and won’t meet for many years. So you are/never have been/never will be alone.

Sometimes adults or kids will say stupid or hurtful things for no reason. Maybe they won’t realize that what they said was mean. Other times, they will say mean things to you on purpose. Have you ever heard the phrase “hurt people hurt people”? It’s often true. So when you hear mean things about you or your hand, you must know that they aren’t true. Part of your mind may believe some of these words, and it makes sense that you would feel bad. But it’s not – and never will be – about you.

I want you to know that sometimes even very special, kind, sweet, lovable people experience people being mean or hurtful. Some people may say that your hand is ugly or weird, or that they don’t want to play with you. Or they may avoid you, which in some ways is even harder.

Sometimes, you will cry when someone says something is mean or hurtful.
Sometimes, you will ignore the comments and walk away.
Sometimes, you will believe that what they say is true.
Sometimes, you will put on your suit of armor and pretend that it doesn’t hurt you.
Sometimes, you will explain yourself even when you don’t want to.
Sometimes you will have a great comeback or funny retort.
Sometimes you will think of what you wished you had said several hours or days later.
Sometimes, you will laugh because it’s funny or because you feel embarrassed.
Sometimes you will leave your body by thinking or mentally going somewhere else.

These are all good responses. There isn’t a right or wrong response, just what you want to say or do in the moment. But I urge you not to reply with cruelty because that just brings you down to their level. You don’t owe anyone an explanation for your existence. No matter how you respond, I still love you and cherish you and support you. And if you ever want to practice responses, I will be happy to do this with you.

I want you to know that while you certainly can be if you want to, you don’t have to be some sort of hero or champion or even a limb difference spokesperson. You just need to live as you, to find your authentic self and be true to her. You don’t have to compensate for your hand or overwork yourself to earn recognition. You don’t have to achieve amazing things to be loved and appreciated. You just have to find out what makes your heart sing and what is worth taking a risk for, and what inspires you to get out of bed in the morning.

There are three things I want you to know that will save you a lot of heartache and possibly discomfort and even pain:

1. There is no shame in asking for help, in fact, it’s both a good thing and a sign of wisdom. Those who learn this young get a head start in life because you see, everyone needs help at some time.

2. You will need to learn to take care of all of you, including your hand. That will mean different things at different points in your life. And just like there’s no shame in asking for help, there’s no shame in using tools that help you – actually, that’s just smart! Whether that means exercises to strengthen your arms or a different keyboard or elastic shoelaces, growing a strong body will help you do all of the things you want to do in your lifa.

2. You can do almost anything you set your mind to, and even more – just like most people. You have a strong and resilient body and an even stronger, resilient, fiercely independent mind. You are resourceful and creative.

But also just like most people, you also don’t have to do everything. No one does. And you certainly don’t have to do things better than everyone else to “prove” how fiercely competent and capable you are.

You just need to be you. And that’s more than enough. I promise. ❤️

Read the other posts in this series:

• Mother’s Day Letter to my Mother
• Letter from a Parent to their Child with a Limb Difference
• Letter to my Parents, Teachers, and Coaches from my Younger Self

© 2026. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy. All rights reserved.

The post Letter to my Younger Self appeared first on On The Other Hand.

In my personal statement for my graduate school application to the Boston School of Occupational Therapy at Tufts University, I explained how having OT as a child and later as a teen inspired my desire to pursue becoming an occupational therapist

Alba held out her hand and he squeezed it with his left one. Then she noticed that he was missing several fingers on his right hand, but he explained that he could play guitar anyway, because there is always a way to do what you want to do.

— Isabel Allende, The House of the Spirits, 236

My preparation for a career in occupational therapy began when I received the first splint for my left hand, when I was in the third grade. It relieved the pain at the base of where the fourth metacarpal would be (I was born with a thumb but no digits) so that I could play, build, and grasp like normal nine year olds. I have worn the same kind every night to bed and a version of it to eat for many years now. My orthopedist, who comforted a saddened little girl, was quite a hero — the chief physician of the Boston Red Sox! I still have that tiny splint, lovingly crafted back when splinting materials were porous (so it got smelly really fast!).

I learned strategies early on that enabled me to function by relying primarily on my strong right arm and hand and secondarily on my left hand as a “helper.” I spent hours poring over Fred Sammons and AliMed catalogs, intrigued by products and gadgets that could facilitate one-handed activities like cutting paper, opening twist-off jars, and tying shoe laces.

An automobile accident seven years ago changed all of that. The clavicle fracture and whiplash in my neck healed incompletely; when I started college nine months later, my dominant right arm couldn’t withstand the added strain of college student activities. Just six weeks into my first year of college, I began to awaken with pain surging through my right arm and hand. Getting through each day was an overwhelming challenge, as I struggled with simple tasks like buttoning my shirt or zipping my jacket. Cutting meat and peeling oranges were impossible tasks. Because my lower back was in constant spasm, I couldn’t sit to read my college texts; my friends read aloud to me while I lay on my back. Attending lectures was a torturous experience (so no movies for a few years). I wore splints on my hands night and day; in fact, they were so much a part of my daily attire that I replaced the muted, boring tan industrial velcro straps with ones that matched my clothes!

By the end of my first year of college I could no longer type with my right hand, got incompletes in my courses (even though I was doing A work), and spent eight weeks of the summer with my right arm in a full cast. Unfortunately, the immobilization did not work. By the time I returned for my sophomore year of college, the myofascial pain that had been localized to my right arm had developed into a chronic all-over muscle pain syndrome. After another difficult year running from doctor to doctor and visiting OTs and PTs while simultaneously trying to lead a “normal” undergraduate life, I took a leave of absence from school in order to devote my time and energy to rehabilitation.

I remember thinking often during those difficult college days and the early years in rehabilitation: “How am I going to use this experience to help someone else?” During these years, I was given so much — dining hall staff carried my tray in the cafeteria, friends did my laundry, my mother bathed me when I had casts on my arms. Initially I felt like a burden to others, that I was all take and no give. But I learned from those who helped me that receiving is not the same as taking. Everyone must find a balance between the arm outstretched to give and the arm outstretched to receive. As limited as my circumstances may have been during these years of college, the support that was showered upon me enabled me to reach out to others in their difficulties.

When I returned to school, I expanded the efforts I initiated to meet my own particular needs into advocacy for services to meet the needs of other students with a range of disabilities — students with visual, mobility, and hearing impairments. In collaboration with a close friend, I helped create NETWORKS, an organization that matched community residents and Harvard-Radcliffe undergraduates with disabilities in recreational and non-academic pursuits, such as tandem bicycling, bookstore browsing, and shopping. Becoming increasingly involved in the projects of the University and of the disability community in Boston, I began to attend ADA (the Americans with Disabilities Act) compliance seminars, University access boards, lectures on law and disability, and recreational activities of Partners for Disabled Youth. “You have an interesting perspective on the world,” my friends commented, as I would discuss the minutiae of building codes, curb cuts, and voice-activated computer software. While contemplating graduate work in political philosophy, I discovered a deep and abiding interest in, and excitement about, lever door handles, rocker light switches, and paddle faucets.

I have gained so much in these seven years: coping mechanisms for dealing with the myofascial pain in my right shoulder blade and arm (through muscle relaxation, heat therapy, and massage); techniques for confronting the challenges of living with a chronic illness (through rest/activity cycling, visualization, and aerobic exercise); the ability to ask for help; a support network of wonderfully giving human beings who are delighted to respond to my requests; experiences of having successfully advocated for access to buildings with physical barriers; the ability to maintain an inner strength despite being asked repeatedly about my obvious physical differences; the confidence and courage to appear vulnerable and different from others; the desire and means to reach out to others; the creativity and resourcefulness to adapt to new situations; the passion to live a full, rich life despite disability, pain, and fatigue.

During these years, I have had the opportunity to work closely with peers, assistants, administrators, rehabilitation specialists, and fellow individuals with disabilities and chronic illnesses. These connections not only have enriched my life but also have inspired me to pursue a career that will enable me to work with colleagues and clients in an on-going, care-giving context. Having spent the last several years co-counseling peers in various groups and individual meetings, I eagerly await leading groups and facilitating discussions.

My recovery process has prepared me well for formal training in occupational therapy. At Tufts, I expect to learn the clinical reasoning skills that are vital to working with patients. My goals for the years ahead are clear: to emulate those care providers I have encountered who understand the complex connections between physical rehabilitation and emotional healing; to share the solution-oriented approach that informs my life; and to inspire others to master their physical impediments so that they, too, can know that “there is always a way to do what you want to do.”

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“Mommy, why are you crying?” asked 3-year-old Emily, as I sat with her and her mother in my occupational therapy clinic. Her mother was crying as she watched her only daughter pick up marbles for the first time ever with her left hand, her “little hand.” Emily knew that there was a difference between her right and left hands, that is, her “big hand” and her “little hand.” But she didn’t grasp how or why this difference could drive her mother to tears.

“Mommy’s happy to see you holding those marbles,” Emily’s mother replied carefully, dabbing her eyes with a tissue. But I knew that her explanation was incomplete. I understood why Emily’s mom would cry, both from pleasure at the success of the therapy and from regret that such therapy was needed. Today’s tears of thanks for Emily’s accomplishment were also a continuation of three years of sadness that her beautiful daughter, Emily, had been born with an unusual left hand.

How do you explain to a three year old that the shape of her hand has turned your life upside down? How do you explain this to your daughter without making her feel that it’s her fault? As I watched this interplay between mother and daughter, I found it increasingly difficult to maintain my professional composure because twenty-five years ago, I was the small girl who couldn’t understand why the absence of fingers on my own left hand had turned my family’s world upside down.

Like most small children, I learned by trial and error to use the tools that I was given at birth. Grasping, gripping, pinching, pulling, holding, releasing —these were the activities of an inquisitive little girl busily exploring her world. It just so happened that the tools on my left hand—a palm with a thumb and nubs of the other fingers—were packaged differently than those of my peers, and they came without a “use and care” guide.

As I was growing up, no one taught me preferred grip patterns. No one analyzed my use of thumb and partial index finger to grasp toys. No one worried that this unusual grip pattern might cause strain in overworked tendons. So when I began to experience pain in my left hand at age 8, my doctor explained to me and my parents something about “nerve injury” and referred me to an occupational therapist who crafted me a little girl-sized splint to rest the tendons. At that time, all I wanted from my first exposure to occupational therapy was to resume the life of a normal third grader, pain-free.

As I grew, I recoiled from drawing attention to my difference, preferring, as did my peers, independence in my activities. However, the adaptations that my youthful ingenuity had devised to perform everyday tasks independently—open a jar, tie my shoes, hold a necklace—began to cause me problems. It never occurred to me or to anyone else that the resting hand splints might temporarily diminish the pain, but that they would not eliminate the source of the pain completely. So I became a regular visitor to the occupational therapy treatment room at a local hospital, returning annually for a bigger resting splint for my left hand. At first glance, this room might have seemed like any other 1970s hospital room, impersonal and uninviting. To me, it seemed a magical place. Under my occupational therapist’s expert touch, once-inflexible plastic sheeting dipped in scalding water grew soft and supple, enveloped my hand, and then rehardened, forming a custom-protective cradle. Snug Velcro straps cut to size held the splint in place. I marveled at the splint fabrication process and imagined someday making my own splint, which I then would proudly wear to school, Girl Scouts, and soccer practice.

I visited that occupational therapy treatment room frequently for portions of my childhood. I vividly recall images of wooden peg boards; containers of blue, brown, and green putty; and hard plastic sheeting. The different materials in the room fascinated me; I longed to explore the cabinets and play with what I found. The occupational therapist showed me how the putty could help me strengthen my unaffected strong right hand. Indeed, during those years I learned many occupational therapy strategies that enabled me to rely on my strong right arm and hand to do activities, with my left hand assisting.

An automobile accident during my senior year of high school dealt my body a terrible reversal of fortune, as I received a fractured collarbone with whiplash injuries to my neck on my right side. When the injuries healed incompletely, my right hand was too weak and painful to do much of anything, including brushing my teeth, opening doors, and carrying textbooks. When I started college nine months later, my right hand and arm just couldn’t withstand the added strain of undergraduate life. Just six weeks into my first year of college, I began to awaken with pain surging throughout my right arm and hand. Getting through each day was an overwhelming challenge, as I struggled to perform formerly simple tasks like getting dressed and eating. Buttoning my shirt and zipping my jacket were painful. Cutting meat and peeling oranges were fatiguing. Within several months, one-handed typing and ultimately even writing were too strenuous. I initially assumed that the situation would be temporary, that my right hand would heal completely and that I would return to life as it had been before the automobile accident. But 8 weeks of immobilization failed to rest my right arm sufficiently to avoid pain.

When I returned for my second year of college, a pervasive, chronic muscle pain syndrome further limited me from normal college activities like attending lectures and turning pages in my texts. It became clear that because of my earlier over-dependence on my injured but healing right arm and hand, I had not been able to give that side the rest it needed to recuperate fully. Over the next two years, pain from muscles that were wasting away, muscles that were overused, and pressure on multiple nerves became a permanent facet of my increasingly difficult daily life. Gradually, I began to lose hope of ever climbing out of the morass in which I found myself.

This meant that I needed a lot of help. During the long and difficult phase of my recovery, miraculously, family, roommates, friends, peers, and even strangers showered assistance upon me. My mother bathed me, roommates did my laundry, peers shared their lecture notes and typed my term papers, and dining hall staff and friends carried my tray in the cafeteria. (I had no clue at the time, but I was destined to marry one of those helpers many years later.) Although these acts helped me physically, they made me despair of ever being more than a burden to those around me. With each gesture of kindness, I felt an ever-expanding emptiness inside, as I ached to repay the “debt” I was rapidly accumulating.

As I consulted physician after physician during the two years in which my condition worsened, occupational therapy once again was my one mainstay of support. The therapists guided me throughout my difficulties. They fashioned several hand splints that I wore constantly to relieve the burning sensation in my right hand. In fact, the splints were so integral to my daily attire that I replaced the muted, boring, tan industrial Velcro straps with ones that matched my clothes each day.

Suddenly, I was forced to rely upon my left hand for daily tasks, which had never before served as more than a “helper” to my right hand. To break out of the cycle of right hand overuse and weakness, I needed nothing short of a complete lifestyle overhaul. I urgently needed to acquire new skills, so I could depend on my fingerless left hand while restricting my formerly strong right hand to the unaccustomed helper role. Only when my right hand was fully rested would it be ready for restorative strengthening exercises. The recovery process would be long and difficult; I needed information and strategies, and most importantly, someone to guide me. Again I turned to occupational therapy. This time my experiences were much more diverse. In addition to splints, my occupational therapists introduced me to strengthening activities, gadgets that made life easier, and principles of building a balanced body.

The occupational therapists problem-solved with me, helping me to figure out how to pursue the activities that were important to me. They introduced me to catalogs filled with products that could facilitate activities that I could no longer perform. Between OT appointments, I spent hours poring over these catalogs, fascinated by the gadgets that simplified cutting vegetables, opening twist-off jars, stabilizing a dinner plate, and tying shoelaces. When I returned for my next visit, they would discuss the pros and cons of the various items on my list, allowing me to experiment with the ones they kept in the clinic as demonstration aids. They taught me how to incorporate these new tools into my daily routine; simultaneously, they taught me exercises to strengthen my now rested but very weak right side.

As I began to see signs of real improvement, occupational therapy gave me an even greater gift: a potential outlet for repaying my debt of gratitude. My early experiences with occupational therapy, reinforced by my more recent ones, had shown me how one caring therapist could ease another’s suffering, transforming another’s life. Now my fascination with the gadgetry of OT could be put to practical use. When I casually told friends that I was considering a career in occupational therapy, they cheered that I had found a calling that would allow me to channel my life experiences.

Since earning a master’s of science degree from the Boston School of Occupational Therapy at Tufts University, I have been treating children with developmental disabilities in Ohio. This work gives me ample opportunity to make my contribution to society. From my perspective, as I help a child with autism to use the toilet independently, as I assist a schoolteacher to accommodate a child with Down syndrome in her regular third grade class, or as I help a teenage girl with limited hand dexterity to manipulate a hairbrush, I’m whittling away at that debt amassed so many years ago. Sometimes the work is difficult. Sometimes my clients don’t want to do the therapy activities. Sometimes I emerge from a treatment session frustrated by our lack of progress.

All of my work, everything I went through, is made worthwhile when I see the smile of success on a little girl’s face as she picks up marbles for the first time ever with her “little” hand, and we both see her mother’s bittersweet tears of joy.

“A Debt Repaid” was published in the inspirational book, Ordinary Miracles: True Stories About Overcoming Obstacles & Surviving Catastrophes, edited by Deborah R. Labovitz PhD, OTR/L, FAOTA, 2003. Reprinted with permission from the book’s publisher. .

© 2023. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy

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Wearing a sharp tweed suit, nails done, and hair coiffed, I am feeling quite good on a sunny April morning as I leave for my job interview. I get into the taxicab, carrying my briefcase. The cabbie turns to the back seat and says, “Where are you going? And what happened to your hand?” His question jolts me out of my blissful confidence. Two hours later, I am sitting in Au Bon Pain, pleased that the interview has gone well. The older woman seated at the table next to me comments on the arrival of spring and then asks, “How did you lose your fingers?” I fight back the tears that well up. The next night I am at a party with some college friends. I am introduced to a young woman who asks: “Were you born that way?”

Social etiquette and curiosity are at issue here. Some people may figure that it is more polite just to get it out in the open that they notice my hand than to feign that they do not. Other people are inquisitive about things that are a little unusual or different. On my end, I don’t like to be asked right away; just because my difference is visibly obvious does not give people permission to ask about it before they know who I am. My response to the cabbie, the Au Bon Pain customer, the woman at the party? “I know you are curious, but how about taking your time before you ask such a sensitive question? Could you maybe try to get to know me for a few minutes before you ask that question? I mean, how about asking me my favorite color, my hometown, my opinion of the President…?”

And how about some sensitivity with the question itself? The language of questions can determine whether the person asked feels hurt or self-respected. Why do people assume that something happened to my hand? There’s something about that particular question that really bothers me. Read the subtext here: “Were you in an accident? Did your mother take birth control pills?” (thanks for the empathy, but please don’t blame my Mom!) ‘What happened to my hand?’ you ask me? What do you mean? Nothing happened. God made me this way. Here in America we value individuality strongly. It’s ironic, though, because the unstated rule is: first, fit the mold perfectly; then, express your individuality by stepping out, stepping off the tread mill, and being truly different. But what about those of us who are born different? Would I need to have ten fingers in order for people to consider me “normal”?

So timing and language are critical. You might think that I would have it easy in this area; after all, shouldn’t I know, given my situation, how to get it right? Ironically, no. You see, because I know how much a question can hurt or make me feel good, I think that it is actually harder for me to ask. One time, I walked into a copy shop and immediately saw that the young man behind the counter had a hand very similar to mine. I was dying to ask him why his hand was like that, how he dealt with it. But I couldn’t. This was the first time that I had laid eyes on him and we hadn’t even exchanged the normal conversation of customer and salesperson. Silently, I role-played how I would start the conversation: “Hit three copies, single sided, please. Oh, and by the way, my hand is like yours! Want to grab coffee?” I knew all too well that in an inappropriate context, even the most sensitive question rubs the wrong way. I got my copies and left without saying anything.

Even when the setting seems appropriate, it can be difficult to ask. Several years ago, the Boston organization, Partners for Disabled Youth, hosted a party where I met a young woman, my age. When I noticed her hand, I felt at a loss for words: “How do I ask?” I thought. What if she doesn’t like to talk about it? What if she starts to cry? I didn’t say anything. I hadn’t yet learned how to use language to make a connection, rather than to pry.

With a new understanding of how hard it is for others to ask, I try to be empathetic if the questions are posed insensitively. I don’t believe that people are purposely hurtful. Once, on a second date, an otherwise intelligent and tactful guy inquired whether my left foot was the same as my left hand. On the flip side, a sensitively-asked question can leave me smiling inside. A distant cousin whom I met on a recent trip to Israel asked me the most beautiful question: “What are three things that you have learned because you were born that way?”

I am finally reaching an equilibrium on the continuum between inquisitiveness and sensitivity. One day, standing in front of one of the Cybex machines at my gym, I spotted a woman with a hand that looked vaguely familiar. This time, I decided to say something. This time I mumbled a silent prayer for the right words, the right amount of sensitivity. “I hope you don’t mind my saying so, but I’ve been watching you use these machines. My hand is quite similar to yours and I have some trouble grasping onto some of the bars. Perhaps you could show me how you manage it.” The words stumbled out, I felt self-conscious. But I said it! And she responded amiably: we began meeting for workouts, and she has taught me some valuable pointers. I have never felt it necessary to ask her what happened to her hand.

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This is the world we live in
And these are the hands we’re given
Use them and let’s start trying
To make it a place worth living in.

Those of us with hand/arm differences wear our strength and our vulnerability visibly – right out there for the whole world to see. I do not distinctly remember when I began to hide my little left hand from view by shoving it in my pocket. But I do recall from a very early age sensing that I was different from other children, and that my hand was what made me different. I must have assumed that if I hid my hand, then others couldn’t see it, and therefore no one would know about it. The big lie. In countless social situations (meeting kids my age in Girl Scouts, youth soccer, and summer camp), not only did my peers often notice my other-ness instantly, they made sure that everyone else saw it as well by “outing” my difference. Looking back, I realize that I was only fooling myself by concealing my hand.

But how can I explain all the times that people did not notice, even though my difference was glaring? My elementary school gym teacher, for example, who taught me in grades one through five, never noticed. My fourth-grade music teacher never noticed. Perhaps they didn’t catch it because, ironically, in those circumstances, I didn’t try to hide my hand. In sports and other activities, I was determined to try everything “normal” kids did. To participate successfully in sailing lessons, horse-back riding, photography, and leather-working class, my hand had to be out of my pocket.

Even with all of these activities, it took me many years of hiding before I could just let my hand be exposed to the world. I felt extremely uncomfortable and completely exposed when my hand was “out there” for everyone to see. Ultimately, I learned that it was the only way for me to grow into accepting myself. So I want to suggest to parents that you encourage your sons and daughters to empty their pockets and stop hiding their different hands/arms since people notice the difference anyway and ask questions. Give your child practice in responding to these awkward, sometimes offensive, and inevitable questions. Sit down with your child and role-play the situations, practicing appropriate and self-protective responses.

But … depending on your child’s age/stage of development, their personality, and the nature of their difference, it may be important – and necessary – for them sometimes to hide their hand. As people often say in matters of parenting, choose your battles wisely. If your child wants to hide their hand sometimes, you can talk about it, but ultimately it is their choice. And you can’t do anything about it when you are not with them anyway, which will be much of the time once they are in school.

“My son’s friends accept him exactly the way he is,” you say? “Everyone loves our Joey, no matter what his hand, arm, leg … looks like.” Others’ acceptance towards your son or daughter is the crux of my next suggestion. Encourage him or her to share with others. There comes a time for every kid when it gets too difficult and painful to run home crying to mom or dad after being asked or teased about their difference. When I was little, my mother always salved my hurt feelings and bruised self-confidence with love, kisses, and cuddly stuffed animals (I still have many of them). When someone would bring up my hand early in the school day, I sometimes would hold in feelings of shame and embarrassment for hours, until I saw my mom later. Or when someone would make a big deal about my hand the first night of a three day school trip, I would hold in the hurt for days.

As I got a bit older, I began to withhold from my mom how much it hurt when people asked me about my hand; I guess I thought that I was supposed to know how to handle the discomfort by myself. Instead of sharing with my closest friend, a trusted teacher, or my older brother, I withheld my feelings from others. I thought that “being strong” meant holding it all together. “I’ll just be tough,” I would tell myself, “They won’t see me cry. I’m a big girl; I can handle this myself.” Unfortunately, by not sharing, I buried many wounds inside, cutting words that went deep within.

Often, questions about my hand come completely out of the blue, and there’s no time to anticipate or plan a response. I’m standing at the counter at a convenience store, when the cashier casually asks (in the same tone of voice as if she were inquiring the time), “What happened to your hand?” Or, while I’m walking in the park, a stranger asks the same question. I’m asked a couple of times one month, then not for a year. It’s strange. And after all of these years, I’m still often caught completely off-guard.

I have found that there are a number of ways to respond to questions, depending on the circumstance, my relationship to the asker, the asker’s intention, and my confidence level at the moment. When I’ve felt really exposed and vulnerable, I have considered (but never actually dared) an angry or vindictive response, such as asking back, “What happened to your face?” Unfortunately, such answers rarely empower. A less retaliatory alternative employs humor to tactfully make light of the situation: “My hand? OH MY … where did my fingers go?? I just had them! Can you please help me find them?” When I’m standing in a group, my inclination often is to avoid a focus on my hand by changing the subject. I recognize, however, that for me, it can be more helpful to answer directly and move on.

Sometimes I would ask back, “What do you mean by ‘happened’?” To the quizzical looks, I share my spiritual outlook that G-d made me this way. When it seems appropriate, I take the opportunity to educate the inquirer with the most probable medical explanation of symbrachydactyly. Sometimes a stranger will preface “the question” with: “I hope you don’t mind, but can I ask you a question?” If I think that he merely wants to know where I bought my shoes, I may answer “yes.” But, in twenty-six years, only one question has ever followed that opener: you know, “the question.” I have learned that sometimes I prefer not to share extremely personal information with people whom I do not know very well. In this context, for example, I might offer this stranger the opportunity to reconsider the propriety of his inquiry: “Well, that depends. Will it hurt?” Or just simply, “No thanks.”

Just to reiterate, the important issues to address the issue with your child are discussing strategies and choosing responses that they tolerate. The issue won’t go away by itself, but you have a wonderful opportunity to help your child feel empowered. I’m certain that many of you have probably figured out a better response than any of these. I’d love to hear how you and your child have dealt with “the question.”

At one of the weekend sessions for parents with children with hand differences, one mother recounted overhearing her four year old daughter’s explanation of her missing hand to another young child. To this day, it is still the most beautiful response I have heard:

When I was an angel in heaven, I had two hands, and another little girl had no hands. So I gave her one of mine.

©2023. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy.

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I return to the cafe at school to retrieve my daily planner (I can’t live without it!). A friend enters the cafe, and as we are talking, I spot, out of the corner of my eye, a woman who has a stump where her right hand should be. Suddenly I am not hearing my friend, but filling with an excitement and trepidation that come only when I see someone who is like me.

Walking over to her, I blurt out as apologetically as I can: “I hope you aren’t offended by my noticing your hand, but I was born without fingers on my hand, and I …”

This stranger, perhaps fifteen years older than I, doesn’t know that she is my role model – just by her very existence. She doesn’t know that l am convinced that the reason I left my daily calendar in the cafe was that a power beyond me wanted me to meet this woman. I didn’t say all of these things; I don’t usually choose to expose myself to someone I don’t know. But she had to know from my demeanor, enthusiasm, and energy that her presence meant something very special to me.

She doesn’t know how many opportunities to talk to someone with a hand difference I have let slip by out of fear. I want to ask her a million questions:

• Do you get overuse pain in your dominant side? (“Incredible: shoulder, neck, back, leg even!”)
• Do people ask you about your hand? (“Adults, some times; kids, oh yes!”)
• Do you use adaptive equipment? (“No, I just make do”)
• Do you go to support groups? (“Yes: the project on Women and Disability.” Worlds of connections unfold, become revealed, shared.
• “Did you go to that conference last month? … Please say hello to Sarah for me sometime…”)

We have lived parallel lives, shared similar experiences, all without knowing that the other existed: “It’s hard some days, really hard.” “I stay really active: bike ride, ski, swim, etc.” “I carry my bag on my underused shoulder to balance things out.” “Massages are a must- go to the Muscular Therapy Institute – they’re only $20!”

There are many questions I don’t ask her: “Do you type with one hand? Do you want to have kids? Do you think they’ll understand? Are you sad about what you’ve been through? Do you get manicures at the ‘one hand discount’ rate? Do you feel beautiful?” (She is, strikingly.)

I don’t want to intrude on her privacy or come across as needy. I just want to know her story, how she lives, her successes and failures. She used to be a drummer, part of a jazz quartet (cool!). Now she teaches part time at two New England colleges. “Can I call you or just see you again? Share my writing with you?” I think to myself.

You see, it’s just not such a common thing to meet another person with one hand, whether from birth or burns (her house caught on fire when she was four).

As I look at this stranger, my own reflection, surprisingly, stares back. I suddenly realize that I, too, am a role model.

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