What are “finger nubbins”?
What some medical providers tell families
A perspective from adults with upper limb differences
A developmentally respectful approach
Addressing issues of appearance
When finger nubbins become a health or sensory issue
There is no single right answer
Learn more

What are “finger nubbins”?

Some children with congenital upper limb differences are born with small “finger nubbins.” These nubbins vary considerably from child to child. Some are tiny and soft, while others are more finger-like and may contain nerves or other tissue. They may appear near the end of a shortened limb or along an anatomically different hand or arm.

Because every limb difference is unique, it’s important to discuss your child’s specific anatomy with their medical team. Although conversations about finger nubbins may seem routine, the decision about whether to remove them can have lasting implications for your child’s future function.

Parents have shared their experiences with surgeons and medical professionals who recommended removing these finger nubbins. As a result, some parents express confusion about whether to keep or remove them, concerned that they might take away something important from their child.

Time, perspective, and lived experience are often missing from these conversations.

What some medical providers tell families

When children are young, discussions with medical providers may focus primarily on the hand’s or arm’s appearance. Families may hear that finger nubbins:

• Serve no functional purpose and may get in the way
• Could snag on clothing or objects
• May be fragile or fall off
• Can easily be removed, preferably when children are young

These recommendations are usually well-intentioned. Surgeons are typically trained to reduce risk, prevent complications, and sometimes “normalize” appearance. But making a hand or arm look “normal” isn’t the same as considering function, identity, or future use.

A perspective from adults with upper limb differences

Sometimes my nubbins get in the way, but mostly they’re useful. Kind of like an elbow. And like an elbow, they’re part of my body. I can’t quite imagine me without them.
— Adult with an upper limb difference

Adults born with finger nubbins sometimes share a very different perspective: that these small nubs of skin are very useful

• Assisting with fine motor tasks
• Helping secure hair ties
• Offering sensory feedback or grip
• Supporting crafts like crocheting, knitting, or sewing

Not every finger nubbin is functional. But many adults share that it’s not always obvious what will be useful until a person grows into their body. Once nubbins are gone, the option to use them in a creative way goes away.

And, equally importantly, many adults share that they like their nubbins. They may find them cute, or they may remind them that everyone is born different. Or, as for the adult quoted above, they may just feel like part of the body.

A developmentally respectful approach

Rather than framing this as a “right vs. wrong” decision, it may be more helpful to think in terms of timing and choice. When a nubbin is not medically dangerous, painful, or often injured, families may consider:

• Leaving it in place during early childhood
• Observing how (or if) the child uses it over time
• Revisiting the decision when the child is old enough to participate

These options may be preferable because function, creativity, and body awareness can evolve with age and some decisions benefit from patience.

A child who grows up with the ability to make choices about their body learns something powerful: my body is mine and my experiences matter.

Addressing issues of appearance

It’s also important to name the unspoken part of this conversation. Sometimes finger nubbins are removed because they don’t look “typical.”

For families raising a child with a limb difference, acceptance of physical differences is a process that evolves over time. There are emotional layers, and unlearning the idea that difference needs fixing may unfold over years.

Accepting a limb difference may also mean accepting the small, unexpected features that come with it. This may not be easy, and families deserve support, not judgment, as they navigate those feelings.

When finger nubbins become a health or sensory issue

Some families share a different experience, one that deserves equal consideration.

Infants and toddlers have strong oral motor needs and often explore their bodies with their mouths. In some children, this can mean chewing or biting on finger nubbins, leading to irritation, redness, or even bleeding. For families navigating repeated injury, infection risk, or difficulty keeping the area protected, this can become a genuine health concern, not a cosmetic one.

One potentially effective strategy is to cover the shortened arm or partial hand with a glove to reduce chewing.

If that doesn’t work and the child is at risk of or has sustained injury, choosing removal may be a thoughtful response to safety, comfort, and day-to-day well-being. This is an example of responsive decision-making in early development, rather than a failure to “wait it out.”

As with many aspects of raising a child with a limb difference, decisions around nubbins may be complicated. It’s important to explore why a choice is being made and recognize that different stages of development call for different considerations.

There is no single right answer

Some finger nubbins truly do cause problems and some families decide early removal is the best fit for their situation. In other families, the parents wait for their children to reach an age where they can choose for themselves. This is what happened for me, with my partial hand. When I reached my early twenties, I consulted with a hand surgeon, who removed a tiny nail that frequently caught on my clothing. It was my choice, and I asked no one’s permission. I have never regretted my decision. 

Some things that can be helpful for decision-making are:

• Being informed by lived experience, not just appearance
• Involving the child when age appropriate (this will differ from one child to another)
• Revisiting the issue as the child grows
• Focusing on the child’s long-term relationship with their body

Every child is different, and every family makes decisions based on their own experiences and priorities. If you’re navigating questions about congenital upper limb differences, I invite you to explore the additional resources on this website for practical guidance and lived perspectives from the limb difference community.

Learn more

👉 Check out the Free Handouts
👉 What Is Occupational Therapy?
👉 Parenting Series landing page
👉 Start Here: Resources for Families Raising Children with Upper Limb Differences
👉 Contact us for consultation services

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

The post All About Finger Nubbins! appeared first on On The Other Hand.

Before your teen starts driving

Here are some important things to keep in mind:

1. Just because your teen has an upper limb difference or limb loss doesn’t mean they need adaptive equipment. Some people drive without adaptations, while others find equipment or other strategies helpful.
   
2. Your teen should have a voice in the process. Safety and function are important. So are comfort, convenience, confidence, and how your teen feels about using a particular device.
   
3. Pay attention to what happens during early practice. Parent-supervised driving can give you useful information about what your teen can do, where they may have difficulty, and whether fatigue or awkward movement patterns show up.
   
4. A recommendation is worth investigating. If a driving instructor, school, or other professional says your teen needs a particular adaptation, find out why. Is it required by the licensing agency? Is the instructor recommending it based on an observation? Or are they simply unfamiliar with your teen’s abilities?
   
5. Consider an evaluation before buying equipment or making licensing decisions. A qualified driver rehabilitation professional can help determine what your teen actually needs and how different equipment may assist them.
   
6. Think beyond the first road test. Adaptive equipment, license restrictions, vehicle changes, moving to another state, renting a car, college, fatigue, and long-term comfort also can be important factors.

Want to know know more?

For many families raising teens with an upper limb difference or limb loss, learning to drive can bring both excitement and anxiety. Driving represents independence, adulthood, and freedom, but the process can become confusing when disability enters the picture.

There is no single, standardized experience for learning to drive with an upper limb difference or limb loss. Driving instructors, adaptive driving programs, and Bureau of Motor Vehicles (BMV) staff may approach disability differently, sometimes even within the same state.

This post is designed to help families recognize the difference between a recommendation and a requirement. It also can be helpful to know what questions to ask before making decisions that could affect a teen’s driving experience or future licensing options.

Upper limb differences and driving: the big picture
Include your teen in the decision-making process
Start with the permit and supervised practice
The vehicle matters
Finding a driving school and instructor
Know that disability rights may apply
Adaptive driving equipment: helpful tool when it’s actually needed
Adaptive equipment and license restrictions
When should you consider a driving evaluation?
Thinking beyond whether an adaptive device works
State laws vary — sometimes significantly
Frequently asked questions
Where to find more information
Have you been through this process?
Explore more resources

Upper limb differences and driving: the big picture

Upper limb differences and limb loss vary widely. A driver may have a unilateral or bilateral limb difference, a difference involving the hand, forearm, or upper arm, or may use a prosthesis. The strategies and equipment that work for one driver may not be appropriate for another.

The important question is not simply what type of limb difference someone has, but how that person’s abilities, strategies, equipment, and vehicle interact. These factors include:

• Which limb is affected (right, left, bilateral)
• Level of limb difference/limb loss
• Range of motion, strength, and endurance
• Compensation patterns already in use
• The type of vehicle
• Whether adaptive equipment is used

Include your teen in the decision-making process

Your teen should have a meaningful role in decisions about how they learn to drive and whether they use adaptive equipment.

Ask your teen what feels comfortable, what they notice in their body while driving, and what they think about the various options. If someone recommends an adaptation, give your teen opportunities to understand and practice with it before making decisions about equipment or licensing.

A device may be functionally helpful but also still raise questions for a teenager about appearance, attention from peers, convenience, or whether they want to use it every time they drive. These concerns deserve to be part of the conversation.

The driver’s experience of using the equipment is as important as safety concerns. The goal is to find a driving approach that is safe, functional, comfortable, and acceptable to the person who will actually be behind the wheel.

Start with the permit and supervised practice

For many teens, the first driving experiences happen with a parent or other supervising adult before formal driving instruction begins. This can be an important opportunity to observe what your teen can do without adaptive equipment.

Pay attention to their abilities to:

• Steer
• Turn
• Signal
• Start and stop
• Park
• Manipulate other vehicle controls

Concerns about safety, comfort, fatigue, or the amount of compensation required may be good reasons to seek a professional driving evaluation rather than simply adding equipment.

Early practice can provide useful information. It does not have to be a commitment to a particular driving strategy.

The vehicle matters

A driving strategy that works in one vehicle may not work in another. Consider whether your teen will learn in the family vehicle, a driving school’s vehicle, or a vehicle they may eventually own. A strategy that works in a driving school’s vehicle may not transfer directly to the family car or a future vehicle.

Features worth considering include transmission type, turn-signal placement, start/stop systems, parking brake, seat and mirror adjustments, seat belt operation, steering wheel design, the location of other controls, and backup camera and safety features.

Finding a driving school and instructor

Families sometimes expect the most difficult part of learning to drive to be the licensing test. In reality, dealing with a driving instructor or school that is unfamiliar with upper limb differences may have a bigger impact on your teen’s experience than the licensing test itself.

Your teen should be treated as the driver, not as a problem to be solved. An instructor should not assume what your teen can or cannot do.

Look for an instructor who is willing to:

• Ask your teen how they already do things before suggesting a different approach
• Give them an opportunity to demonstrate their abilities
• Talk directly with your teen rather than directing every question to the parent
• Focus on learning to drive rather than repeatedly drawing attention to the limb difference
• Be willing to adapt instruction when needed without making the teen feel singled out
• Recognize that there may be more than one safe way to operate the vehicle

Your teen should also feel comfortable speaking up if something is uncomfortable, confusing, or not working. A good driving instructor should be part of the learning process, not another barrier your teen has to navigate.

If an instructor seems unwilling to learn about your teen’s abilities, repeatedly assumes they cannot perform a task, or makes your teen uncomfortable about their limb difference, it may be worth looking for a different instructor or school.

Know that disability rights may apply

Private driving schools are generally subject to the Americans with Disabilities Act (ADA), although exactly what a school must provide depends on the circumstances. The ADA prohibits discrimination on the basis of disability and may require reasonable modifications or auxiliary aids and services when necessary, subject to applicable limitations. (See U.S. vs. Wold Driving School)

If a driving school tells you that your teen cannot participate, must use a particular adaptation, or must pay additional costs because of their disability, ask the school to explain the basis for that requirement. You may also want to contact an appropriate disability-rights organization or legal resource for guidance specific to your situation and state.

Adaptive driving equipment: helpful tool when it’s actually needed

Adaptive equipment, such as steering knobs or modified controls, can be very useful useful, protective, and sometimes essential for a driver. However, adaptive devices should be introduced intentionally rather than automatically. The question is what this particular driver needs to operate this particular vehicle safely and effectively. The goal is to make informed choices that support safety, comfort, and long-term independence.

A recommendation for adaptive equipment should be based on the driver’s abilities and needs, not simply on the presence of a limb difference.

If a driving school tells you that your teen must use a particular device or work with a specialized instructor, ask:

• What requirement or assessment are they basing that recommendation on?
• Has the teen been observed driving without it?
• Is the equipment required by state licensing rules, or is it a recommendation from the instructor or driving school?
• Is a specialized driver rehabilitation evaluation recommended?
• Could using the equipment during the licensing process result in a restriction?
• If so, what exactly would that restriction require?

Families do not have to accept the first recommendation they’re given, even from a driving instructor. Some recommendations are well-founded. The goal is to understand the reason.

Adaptive equipment and license restrictions

In particular, steering knobs can be very helpful for some drivers, but they are not necessary for every person with an upper limb difference.

One important consideration is what happens when adaptive equipment is used during the licensing process. Depending on the state and the circumstances of the evaluation, equipment used during a driving test may be reflected as a restriction on the driver’s license.

Important questions to ask before using adaptive equipment during a driving test:

• If my teen uses this device during the road test, will it be documented as a license restriction? If so, what exactly will the restriction say?
• Would my teen be permitted to drive a vehicle without an adaptive device?
• What would be required to remove or change the restriction in the future?
• Who makes that determination?

A family should understand the licensing implications before introducing equipment specifically for the purpose of passing the road test.

Before scheduling a driving test, families should consider contacting someone knowledgeable at their local BMV or Department of Motor Vehicles (DMV), ideally someone who works with medical reviews or adaptive driving cases.

Having these conversations ahead of time can prevent surprises and give families more control over the decision-making process.

When should you consider a driving evaluation?

A driving evaluation can be helpful when there are questions about whether adaptive equipment is needed, which equipment would be appropriate, or how a driver’s physical abilities interact with a particular vehicle.

A driver rehabilitation specialist can provide a more comprehensive assessment when there are questions about whether adaptive equipment is needed. The National Highway Traffic Safety Administration (NHTSA) notes that these specialists evaluate factors such as strength, range of motion, coordination, reaction time, judgment, and the ability to drive with adaptive equipment. They also can make recommendations about equipment and restrictions.

For a comprehensive driving evaluation, families may want to look for a Certified Driver Rehabilitation Specialist (CDRS®) or another appropriately qualified professional with experience evaluating drivers with upper limb differences. The Association for Driver Rehabilitation Specialists (ADED) also offers a Driver Rehabilitation Professional (DRP) microcredential for providers of basic and low-tech driver rehabilitation services.

A comprehensive evaluation may include clinical and on-road assessment of strength, range of motion, coordination, reaction time, vision, judgment, vehicle controls, and the ability to operate the vehicle safely with or without adaptive equipment.

When contacting a program, ask:

• What credentials does the evaluator hold?
• What does the evaluation include?
• Will the evaluation be conducted in the vehicle my teen will actually drive?
• Is a physician referral required?
• Does insurance cover any portion of the evaluation?
• What is the expected wait time?

Thinking beyond whether an adaptive device works

A driving strategy can be functional and still become uncomfortable or fatiguing over time.

Families and teens should pay attention to shoulder, neck, arm, or trunk discomfort; fatigue during longer periods of driving; and whether a particular hand position requires sustained effort or awkward positioning.

These factors can be especially important when a teen is considering equipment they may use for years. A driver rehabilitation evaluation can help identify whether a particular adaptation supports efficient, sustainable vehicle operation rather than simply making the task possible.

State laws vary — sometimes significantly

Driving regulations related to adaptive equipment are state-specific. Some states have medical review processes or require additional documentation when a driver has a disability. Requirements can also differ depending on how equipment is used during the licensing process. Check your state’s official licensing agency for current requirements.

Historically, steering knobs were often restricted to drivers with documented disabilities. Today, in some states, any driver may legally use a spinner knob, regardless of disability status. However, some states still have specific requirements, and others allow them broadly but attach conditions when they’re used during a licensing exam. A restriction may mean that the driver is required to use that equipment when driving. The process for changing or removing a restriction also varies by state.

This is one reason families should find out what their state’s rules are before deciding what equipment to use during a road test.

Some states have medical review processes or require additional documentation when a driver has a medical condition or disability. Requirements vary, so families should ask their state licensing agency what documentation, if any, will be required.

This is why it’s so important not to rely solely on what one instructor, therapist, or examiner says, but to look up the laws in your state.

Keep copies of relevant evaluations, recommendations, license documentation, and equipment information. Your teen may eventually move for college, purchase a different vehicle, or rent a car while traveling, and licensing requirements or equipment needs may change.

Frequently asked questions

Do you have to use a steering knob if you have an upper limb difference or limb loss?
No. Some drivers with upper limb differences use steering knobs, while others drive safely without them. Whether a steering knob is required, recommended, or results in a license restriction depends on the driver’s needs and the rules and procedures in their state.

What steering knobs do you recommend?
There are many different steering knob designs, and the best choice depends on the person’s vehicle, steering method, hand function, ease of use, installation, and other factors. I don’t recommend choosing a device based solely on an online product description.

When there is uncertainty about whether a steering device is needed or which type would be appropriate, a driver rehabilitation specialist can help evaluate the driver’s needs and recommend appropriate equipment

If I have a steering knob license restriction, can I install one in a rental car?
Rental-car policies regarding adaptive equipment can vary. Before traveling, it’s important to contact the rental company directly and ask whether they permit customer-installed equipment, whether they offer adaptive equipment, and whether there are vehicle-specific requirements. Never assume that a device can be safely or appropriately installed on every steering wheel.

Where to find more information

Association for Driver Rehabilitation Specialists (ADED)

Find information about driver rehabilitation and search for providers, including CDRS® professionals. ADED identifies CDRS® as its highest credential for the field.

National Mobility Equipment Dealers Association (NMEDA)

NMEDA provides consumer resources, equipment information, and a locator for accredited mobility equipment dealers.

National Highway Traffic Safety Administration: Adapted Vehicles

The NHTSA website covers adaptive equipment, licensing, evaluation, vehicle modification, training, and finding qualified professionals.

State licensing information

Find your state’s official driver licensing agency through the USA.gov site above or the Federal Motor Carrier Safety Administration (FMCSA) and look for information about medical review, adaptive equipment, license restrictions, and driving tests.

Have you been through this process?

I’m interested in hearing from teens and adults with upper limb differences, as well as parents who have helped their children learn to drive. You can contact me here. Here are some of my questions about your experiences:

• What did your driving instructor understand well?
• Where did you encounter confusion or unnecessary barriers?
• Were you encouraged to use adaptive equipment that you didn’t actually need?
• Did you encounter unexpected costs or requirements?

Experiences vary by state and individual circumstances, so please include your state and, if you’re comfortable sharing, whether the experience involved a standard driving school, an adaptive driving program, or a driver rehabilitation specialist.

Disclaimer

This is general education, not medical or legal advice. Rules and regulations change, so make sure to verify any information that affects you or your family.

Explore more resources

👉 Check out the Free Handouts
👉 Learn about Seeing the whole child with a limb difference: celebrating strengths & supporting struggles
👉 Read Winter Care for Partial Arms and Hands: Skin, Circulation, and Warmth

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

The post Driving With an Upper Limb Difference: What Families and Teens Need to Know appeared first on On The Other Hand.

Each resource draws from both lived experience and clinical practice, offering practical language, guidance, and perspective that parents often don’t have access to on their own.

You are welcome to explore, download, and use whatever feels helpful for your child and your family.

Want the full collection?

To download the full collection of 15 free handouts please enter your name and email address below. You can save the collection for future reference or share individual pages with your family or care team. Each handout also has a companion article on my website if you’d like to explore the topic in more detail. 

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Or you can browse by topic below and choose what feels most relevant right now.

Understanding physical health & overuse syndrome
Talking about limb difference
Emotional development & identity
Representation & play
Social challenges & bullying
Reflections & connection
Practical strategies & adaptations

Understanding physical health & overuse syndrome 

👉 Five Habits to Reduce Overuse Risk for Children with Upper Limb Differences
Simple daily habits that help protect your child’s body and reduce long-term strain.

👉 How to Talk to Your Child About Overuse Syndrome
Supportive, age-appropriate ways to introduce the idea of body awareness and prevention.

👉 Understanding Upper Limb Difference Overuse Syndrome
A clear overview of what overuse is, why it happens, and what to watch for over time.

👉 How to Think Like an OT
A practical way to help your child notice strain, anticipate fatigue, and tune into their body during everyday activities.

Talking about limb difference

👉 Teaching Children How to Ask About Limb Differences

Simple language and strategies to help children navigate curiosity in social situations.

👉 For strategies to help your child tune into their body during activities, see How to Think Like an OT.

Emotional development & identity

👉 When Your Child Realizes They Have a Limb Difference
What this moment can look like and how to respond with support and steadiness.

👉 Preparing Yourself When Your Child Feels Sad
How to ground yourself so you can show up calmly and supportively during emotional moments.

👉 What Not to Say When Your Child Feels Sad
Common responses that miss the mark—and what helps children feel truly understood instead.

Representation & play

👉 Limb Different Toys and Dolls

A curated look at toys that reflect limb differences and support identity and belonging through play.

Social challenges & bullying

👉 Supporting Your Child Through Social Challenges

A practical guide to recognizing, responding to, and supporting your child through difficult peer interactions.

Reflections & connection

👉 Mother’s Day Letter to My Mother
A personal reflection on parenting, perspective, and what support can look like over time.

👉 Letter from a Parent to Their Child with a Limb Difference
A meaningful way to express love, understanding, and long-term perspective.

Practical strategies & adaptations

👉 Typing and Keyboarding Options for Upper Limb Difference

An overview of tools and approaches to support efficient and comfortable computer use.

Take what is helpful, and leave what is not. Each child is different, and these tools are meant to support — not replace — your understanding of your own child.

Download the full collection!

Enter your name and email address below to access the full collection of 15 free handoutsK

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

The post Start Here: Free Printable Handouts About Upper Limb Differences and Limb Loss appeared first on On The Other Hand.

This section focuses on the practical, day-to-day aspects of supporting children with upper limb differences so they can move through the world with comfort, confidence, and capability.

The goal is not just participation, but sustainable participation — helping children do what they love while also protecting their long-term physical health.

Here you will find guidance on topics such as:

• Keeping hands and arms comfortable in different environments
• Building strength and endurance
• Supporting movement, exercise, and physical participation
• Adapting everyday routines in simple, effective ways

Each child is different. Take what is helpful, adapt what you need, and let your child’s interests and experiences guide you.

Quick links

👉 Winter Care for Partial Arms and Hands: Skin, Circulation, and Warmth
👉 Upper Body Strengthening Tools for Upper Limb Difference
👉 Exercise: Building a balanced body for children with hand & arm differences
👉 Life Stages

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

The post Start Here: Everyday Living Tips for Children with Upper Limb Differences appeared first on On The Other Hand.

Raising a child with an upper limb difference brings many questions. Parents often want clear information, practical guidance, and reassurance that they are not alone.

This page gathers articles, guides, and tools to support families at different stages of the journey. Some resources focus on early questions after diagnosis. Others explore therapy, daily life, and long term well being.

You do not need to read everything at once. Start with what feels most helpful right now and come back when new questions arise.

Parenting series

This series offers thoughtful guidance for parents raising children with upper limb differences. Each post explores one aspect of the journey, including emotional support, physical health, advocacy, and long term well being.

The goal is not to provide a checklist or a perfect formula for parenting. Instead, these posts share ideas that can help families build strong, resilient foundations over time.

👉 Read the Raising a Child with an Upper Limb Difference parenting series

Understanding limb difference & limb loss language

Words matter. The language used to describe limb differences has changed over time and can vary across communities.

This article explains common terms, why some language feels respectful while other language may not, and how families can talk about limb differences in ways that support dignity and understanding.

👉 Read Understanding Limb Difference Language & Terminology

Navigating medical decisions

Interacting with medical professionals can be an important — but sometimes confusing —part of raising a child with an upper limb difference.

Families are often asked to make decisions without always having clear guidance about what questions to ask, what options to consider, or how to interpret different recommendations.

This section is designed to help you feel more prepared and more confident when navigating medical care. It includes guidance on working with physicians and specialists, understanding the role of occupational therapy, and thinking through decisions related to treatment, therapy, and long term care. Many of these insights reflect both clinical experience and lived experience, offering perspective that families are not typically given in medical settings.

The goal is to help you ask thoughtful questions, understand your options, and advocate for your child in a way that feels informed and grounded, not to tell you what decisions to make.

👉 Delve into What Is Occupational Therapy?
👉 Explore Balanced and Nuanced Medical Advice
👉 Read Questions for the Physician or Specialist

Resource directory

Families often ask where to find trusted organizations, support groups, prosthetic resources, and educational materials.

The directory gathers links to organizations and tools that support people with limb differences and the families who love them.

👉 Explore the Resource Directory

Tools for daily life

Children with upper limb differences often find their own ways of doing things. At times, simple tools or adaptations can make everyday activities easier, more comfortable, or more efficient.

This section highlights practical options that can support participation at home, in school, and during play. These resources are not about “fixing” differences, but about expanding access and reducing unnecessary frustration.

👉 Learn about Limb different toys & dolls matter – here’s why
👉 Explore Typing/Keyboarding with an Upper Limb Difference (or two!)

A note for parents

Every child with a limb difference is unique. Families make different choices about therapy, prosthetics, sports, school support, and many other aspects of life.

The resources here are meant to inform and support you as you make decisions that fit your child and your family.

You do not have to figure everything out all at once.

Explore more resources

👉 Check out the Free Handouts
👉 Learn about Seeing the whole child with a limb difference: celebrating strengths & supporting struggles
👉 Read Winter Care for Partial Arms and Hands: Skin, Circulation, and Warmth

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

The post Start Here: Resources for Families Raising Children with Upper Limb Differences appeared first on On The Other Hand.

Raising a child with an upper limb difference brings joy, questions, and moments that few people prepare parents for.

Over time, families learn to navigate medical appointments, school conversations, social situations, and decisions about therapy or prosthetics. Along the way, parents also carry emotional work that is not always visible to others.

This parenting series offers practical and compassionate guidance for families raising children with upper limb differences.

The ideas shared here come from lived experience growing up with a hand difference, decades of work as a pediatric occupational therapist, and long involvement in the limb difference community.

The goal is not to provide a checklist or a perfect formula for parenting. Every child and every family is different.

Instead, these posts offer thoughtful suggestions that can help parents support their child’s physical development, emotional well being, and long term resilience.

You may find that some ideas resonate right away. Others may become more helpful later as your child grows.

Take what fits your family and leave the rest.

Parenting tips

This series will grow over time as new topics are added.

Tip #1: Take Care of Yourself

Raising a child with an upper limb difference is a long journey that requires energy, patience, and support. This first post focuses on sustainable parenting and why caring for yourself is an important part of caring for your child.

👉 Read Tip #1: Take Care of Yourself First (Yes, Really You)

Tip #2: Find Your People — Support for Families Raising a Child with an Upper Limb Difference

Parents don’t have to navigate this journey alone. This second post explores how families can find meaningful connection, build supportive community, and navigate relationships with clarity and care.

👉 Read Tip #2: Find Your People — Support for Families Raising a Child with an Upper Limb Difference

A note for parents

Many parents feel pressure to do everything perfectly. In reality, parenting a child with a physical difference is a long learning process.

You do not have to figure everything out at once.

This series is meant to support families as they grow alongside their children.

Explore more resources

👉 Access the Free Handouts
👉 Explore Typing/Keyboarding with an Upper Limb Difference (or two!)
👉 Find out about Limb different toys & dolls
👉 Learn “How to think like an OT”

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

The post Start Here: Parenting Series Landing Page appeared first on On The Other Hand.

Parents and caregivers of children with upper limb differences often say that this is one of the hardest truths to hear: You matter just as much as your child.

It’s tempting to dive all in: to become the researcher, advocate, expert, appointment scheduler, and your family’s emotional glue. You want to give your child, family, everything. 

But burnout is real, and nobody thrives when the parent is exhausted and overwhelmed.

Let’s reframe this: Taking care of yourself is part of caring for your child.

Your feelings are valid
Find community
Pace yourself
Choose the supports that fit your life
Honest conversations to have now
Care for your whole self
Final thought
Want more support?

Here’s what that might look like:

Your feelings are valid

They’re all legitimate: guilt, anxiety, fear, sadness, joy, hope, amazement. Having a safe place to process your feelings isn’t selfish. Needing support also doesn’t mean you don’t love your child. Quite the opposite: sharing with a therapist, counselor, or trusted friend can help your child. In fact, research shows that children born with limb differences are harmed by parents’ depression and anxiety (Martens, et al., 2023). So getting help for yourself can help your child.

Find community

You don’t have to do this alone. Whether it’s an online group, a limb difference family weekend, or just one parent who “gets it,” finding someone to walk beside you makes a huge difference. Connecting with a family whose child shares your child’s limb difference (“hand twin” or “limb twin”) can be helpful both for you and your child.

Pace yourself

You don’t have to know everything all at once. Learn a little at a time, staying just a step ahead of what’s coming next. This is a lifelong journey, not a sprint.

Choose the supports that fit your life

Every family builds support in different ways. Some parents have strong extended family networks. Others rely more on community, friends, or professional support.

It can be helpful to think about support as a menu rather than a single solution. Different families choose different combinations depending on their needs and resources.

Examples of support might include:

• assistance from family or friends
• journaling, reflection, or meditation
• movement, sleep, and nutrition that support your own wellbeing
• therapy or counseling

Honest conversations to have now

Another important form of support involves honest conversations about how responsibilities are shared.

For example, proactively discussing questions with the important people in your life can lessen stress:

• Who attends medical appointments?
• Who manages scheduling and logistics?
• Who handles grocery shopping or meals?
• Who organizes school or social activities?

These conversations can help distribute both the physical and emotional load of parenting.

Care for your whole self

It’s okay to prioritize rest, nourishment, exercise, friendships, and joy. It’s also okay, and often even necessary, to say no to extra commitments.

Some permissions you may need: you don’t have to

• get it all right or do it all perfectly
• be on every board
• attend every event
• carry everything alone

Final thought

Your child needs a present parent, not a perfect one. The fact that you are taking the time to read this already says so much about how you’re doing a beautiful job.

Want more support?

👉 Follow the rest of the Raising a Child with an Upper Limb Difference parenting series on Instagram and read the full series here
👉 Read Understanding Limb Difference Language & Terminology
👉 Access the Resource Directory
👉 Learn about Bullying Part 1: Understanding Exclusion and Social Systems
👉 Delve into Upper body strengthening tools for upper limb difference

Reference

Martens, S. A., Tuberty, S., & James, M. A. (2023). Self-concept development in children with limb differences: A scoping review. International Journal of Orthopaedic and Trauma Nursing, 49, Article 100997. https://doi.org/10.1016/j.ijotn.2023.100997

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

The post Tip #1: Take Care of Yourself First (Yes, Really You) appeared first on On The Other Hand.

Find your people
Support for the whole family
What counts as community?
When support feels complicated
Not every group is the right fit
It’s okay to take breaks
Connection can take time
Final thought
Want more support?

Find your people

When your child is born with a limb difference or acquires one later in life, it can feel like your world has shifted. 

In many ways, it has. But you don’t have to figure it all out alone.

One of the most helpful things families share is the moment they connected with others who truly understood their experience. Maybe it was another parent, a mentor, a teen with a similar limb difference, or even a child who looked like their own.

Community can give hope and perspective. It can remind us that we are not alone, and that our experiences are real, shared, and survivable.

Support for the whole family

Supportive community can benefit more than the child with a limb difference. It can help parents, siblings, and even extended family feel less alone. It can give everyone a sense of belonging and a place to ask honest questions without judgment.

What counts as community?

• Online support groups like Facebook groups or forums
• In-person events or camps like Camp No Limits
• Family weekends like those hosted by Lucky Fin Project
• Social media, curated wisely, can offer connection and representation

You don’t have to attend every event or post online. But if you want support, it’s out there.
👉 Search the Resource Directory for organizations, camps, family weekends, and more!

When support feels complicated

Support can come from many places, including extended family, long-time friends, and new connections within the limb difference community.

Some families report feeling surprised that strangers in limb difference groups offer more understanding than family members or long-time friends. It may seem disappointing that people whom you previously thought were closest to you don’t share your perspective on your child’s limb difference or have different understandings of limb difference. Some may underestimate your child’s abilities, while others may respond with overprotection or uncertainty.

This can be difficult, especially when these perspectives come from relationships you cherished.

It’s okay to be thoughtful about the people and messages that influence your child and who you turn to for support.

Some families find it helpful to:

• limit certain conversations
• set gentle but clear boundaries
• seek out communities that better understand their child’s experience
• take breaks from relationships that feel draining

Not every group is the right fit

Some limb difference events are large and busy, while others are small and intimate. Some groups focus on advocacy, while others center social connections. Try what works for your family, and give yourself permission to leave what doesn’t.

It’s okay to take breaks

While connecting with others can be healing, it can also bring up deep feelings. You might feel tender after an event or overwhelmed by certain stories. This is all normal. You get to engage in ways that feel nourishing, not draining.

Connection can take time

Sometimes families attend an event or join a group expecting instant friendships. While that does happen for some people, it’s not the only way connection develops.

Many meaningful relationships grow slowly, through repeated events, small conversations, or simply recognizing familiar faces over time.

If you attend an event and don’t immediately feel a sense of belonging, that doesn’t mean the community isn’t there for you. Like any relationship, finding your people can take time.

It’s okay to explore at your own pace and allow those connections to develop naturally.

Final thought

Support doesn’t have to come from everyone. It can come from the people who are able to show up in ways that are helpful and respectful. Over time, many families build a circle of support that feels aligned with how they see their child and their future.

Finding supportive community doesn’t solve everything. But it can mean having people to turn to on the hard days and celebrate with on the good days.

Want more support?

👉 Follow the rest of the Raising a Child with an Upper Limb Difference parenting series on Instagram and read the full series here
👉 Access the Resource Directory
👉 Delve into Upper body strengthening tools for upper limb difference
👉 Explore Bullying Part 1: Understanding Exclusion and Social Systems
👉 Read Understanding Limb Difference Language & Terminology

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

The post Tip #2: Find Your People — Support for Families Raising a Child with an Upper Limb Difference appeared first on On The Other Hand.

Introduction

This is where I post my writings about the parts of limb difference that are harder to quantify.

Not the clinical pieces, checklists, or “how-to” strategies, but the emotional undercurrents, emotional adaptations, and things children carry without always having language for their experiences.

Some of these posts are personal. Some are written from imagined perspectives. Some are grounded in professional insight. All of them explore what it means to grow up, parent, or live with a limb difference in a world that often assumes, “They’ll figure it out.”

If you’re new here, this page will help you find a place to start.

Holding the whole experience

Raising a child with an upper limb difference includes moments of deep joy, connection, and pride — as well as moments of frustration, sadness, and uncertainty.

Both can exist at the same time.

This section reflects the fuller picture of the experience, beyond what is often visible or shared publicly. It offers space to acknowledge the challenges while also recognizing the meaningful, often unexpected moments that shape the journey.

👉 Moments of Sweetness While Raising a Child with a Limb Difference
A gentle invitation to notice, remember, and hold onto the meaningful moments that bring connection, joy, and perspective over time.

👉 Seeing the Whole Child with a Limb Difference: Celebrating Strengths & Supporting Struggles
A reflection on moving beyond celebration alone to also acknowledge the real challenges children may face—and how both are essential to truly seeing the whole child.

Independence and support

If you’ve ever wondered whether you’re helping too much, or not enough, begin here. This series explores what independence can mask, why children don’t always ask for help, and how thoughtful anticipation supports long-term well-being.

👉 Part 1: The Hidden Costs of “They’ll Figure It Out”
👉 Part 2: Why Children With Limb Differences Often Don’t Ask for Help
👉 Part 3: Support, Independence, and the Space Between

Big feelings about limb difference

There is a multi-part series on children’s sadness and other big feelings, including reflections on:

• Why sadness shows up
• How parents often respond
• What children need in those moments
• How to prepare yourself emotionally when your child feels sad

(Some of these pieces live in Life Stages and Early Years because they are developmentally focused, but they connect deeply to the themes here.)

If you’re just starting with these issues, I recommend beginning with the post about preparing yourself. It reframes the moment before it arrives.

👉 Preparing yourself for when your child feels SAD about their limb difference
👉 What to say & do when your child feels sad about their limb difference

Bullying and social experiences

These reflections look beyond surface-level advice and explore the emotional and relational layers of bullying, especially when visible difference is involved.

If your child is experiencing peer challenges, or you are still carrying memories of your own, this may resonate.

👉 Bullying Part 1: Understanding Exclusion and Social Systems
👉 Bullying Part 2: Practical Guidance for Parents
👉 Bullying Part 3: Is It Bullying, Curiosity, or Something Else?

Identity and self-acceptance

I traced the emotional work of growing into comfort with difference, not as a single turning point, but as an ongoing process in:

👉 Embracing Vulnerability: Journeying Toward Self-Acceptance
👉 Seeing the Whole Child with a Limb Difference: Celebrating Strengths & Supporting Struggles

Letters and personal reflections

Sometimes it’s easier to understand something when it’s written as if it were spoken directly.

You’ll find several letters here, including:

👉 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
👉 Letter to my Younger Self

These pieces explore perspective, gratitude, grief, and love in a more intimate format.

My professional path

Here you’ll find my Graduate School Personal Statement.

It offers context for why I approach limb difference the way I do, where clinical training and lived experience intersect.

Community and event reflections

Connecting with others in the limb difference community can be a powerful and meaningful part of the journey — for both children and families.

These reflections share experiences from community events, gatherings, and conferences. While each event is unique, they offer a glimpse into the connection, learning, and sense of belonging that can emerge when families come together.

These posts may also help families consider whether community events feel like a good fit for their child or family.

👉 Lucky Fin Weekend Reflections 2023
👉 Lucky Fin Project Weekend – July 26–28, 2024
👉 Upper Limb Difference Day – June 15, 2024
👉 Hands to Love Hand Camp – April 12–14, 2024
👉 Highlights from Hands to Love Hand Camp
👉 Other Voices: LFP Weekend 2023 Reflections

What this section is (and isn’t)

If you are looking for meaning, perspective, and emotional nuance, you are in the right place. Reflections invite you to: 

• Slow down and notice what might otherwise be overlooked
• Consider what children experience internally, not just externally.

These writings won’t offer scripts for what to say in every moment. 

👉 If you are looking for practical strategies, visit Everyday Living.
👉 If you are looking for developmental guidance, visit Life Stages.

Wherever you begin, I hope something here helps you feel less alone, or helps you see your child more clearly.

Quick Links

Part 1: The Hidden Costs of “They’ll Figure It Out”
Part 2: Why Children With Limb Differences Often Don’t Ask for Help
Part 3: Support, Independence, and the Space Between
Bullying Part 1: Understanding Exclusion and Social Systems
Bullying Part 2: Practical Guidance for Parents
Preparing yourself for when your child feels SAD about their limb difference
What to say & do when your child feels sad about their limb difference
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
Letter to my Younger Self
Embracing Vulnerability: Journeying Toward Self-Acceptance
Graduate School Personal Statement
Everyday Living
Life Stages

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

The post Start Here: Reflections about Growing Up and Living with an Upper Limb Difference appeared first on On The Other Hand.

Why partial arms and hands are more affected in winter
Preventing cracked skin
Handwashing and skin health
Managing cold extremities
Teaching children to protect their bodies
A lifelong skill
Learn more

Many families assume these issues are unavoidable, but fortunately they are not.

Why partial arms and hands are more affected in winter

ULD can be associated with circulation differences. Reduced circulation may contribute to colder extremities, slower skin healing, and increased sensitivity to temperature changes.

Body parts with reduced circulation often require proactive protection.

Preventing cracked skin

Consistent moisture is the foundation of winter skin care.

• Apply a thick lotion or ointment nightly to the partial arm or hand
• Use cotton gloves or soft sleeves overnight to seal in moisture
• Use liquid bandage to close painful skin cracks and reduce reopening during use

Many adults with ULD recall improvising solutions before products like liquid bandage existed. Thankfully, today we have safer and more effective options.

Handwashing and skin health

Winter often brings increased handwashing to prevent illness. While necessary, frequent washing strips natural oils from the skin.

A simple strategy helps: dermatologists recommend applying lotion immediately after washing while the skin is still slightly damp.

This single habit can significantly reduce cracking.

Managing cold extremities

Cold sensitivity is common in partial arms and hands.

Helpful strategies include:

• Microwavable stuffed animals or heat packs
• Warm layers that do not restrict movement
• Pre-warming before outdoor transitions

Always monitor temperature carefully, especially if sensation is reduced.

Teaching children to protect their bodies

As children grow, they may resist warm clothing for social reasons. This is a normal developmental stage.

Parents can help by explaining:

• The partial arm or hand may get colder faster
• It may be more vulnerable to frostbite
• Protection supports comfort and long-term health

When children understand the reason behind self care routines, their willingness to protect their skin may improve and they may even carry these habits into adulthood.

A lifelong skill

Winter care for upper limb differences is not just a childhood concern. Many adults report learning these strategies only after years of discomfort.

Early education supports comfort, participation, and long-term skin health across the lifespan.

Learn more

👉 How to Talk to Your Child about Limb Difference Overuse Syndrome
👉 Understanding Upper Limb Difference Overuse Syndrome
👉 The Overachiever Trap
👉 Typing/Keyboarding with an Upper Limb Difference (or two!)

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

The post Winter Care for Partial Arms and Hands: Skin, Circulation, and Warmth appeared first on On The Other Hand.