When your child realizes they have a limb difference

This post initially was inspired by parents sharing about the moments that their children discovered or said something about their limb difference for the first time. I hope that this post, which is the combination of reflections from my childhood growing up with a hand difference, lessons I learned raising two children, and expertise gained from practicing as a pediatric occupational therapist, will help parents anticipate what might be coming as well as support your children!

What parents often ask me
By the time your child is a toddler
Before they are able to talk
What you can do to help
What to avoid 
What will they say when they can talk? 
Be prepared for negative sentiments
Important takeaways
Download the free handout
Read more

What parents often ask me

As an adult with a limb difference, parents often inquire what I wish my parents had known and how my thinking about my “difference” has changed over the years. As a pediatric occupational therapist with twenty five years of experience working with children, parents frequently ask how they can support their children with differences.

By the time your child is a toddler

There’s a very strong likelihood that by this age, your child already knows that there’s something different about them because of what they have already picked up from their environment. In many families, parents name their child’s limb difference (lucky fin, nubby, small hand) and frequently refer to it by that name. In addition, already by the toddler years, others have reacted to them, asking some version of “What happened to their hand/arm/foot/leg?”

Before they are able to talk

They hear everything: they listen to what others say about their difference and they understand a lot – not only words. They pick up on body language, gestures, intonation, and much more! They may feel positive and negative emotions about their difference and communicate how they feel through their body language. They also may feel frustrated that they can’t tell you how they feel, whether happy or sad feelings. 

What you can do to help

Narrating what’s happening can help them make sense of their experiences. For example, when you see your child crying, you could say: “Oh sweetie, I see you’re crying. Would you like a hug?” You can surround them with love by modeling talking positively about the limb difference to family/friends and by not allowing anyone to define what your child can or can’t do – both when your child is and isn’t present.

Reading picture books aloud to your child that include characters with limb differences helps them to understand that they are not alone and envision themselves doing the things that are important to them. You can learn how to choose good book options here. Your child also will benefit from connecting with others who have similar differences through support groups, meetups, and family weekends. Check Resources to learn about many of the different groups!

What to avoid 

Your child shouldn’t have to prove themselves to anyone. Focusing on proving themselves teaches kids to care too much about what others think of them. For example: “Bet they didn’t think you could do that!” Children feel more empowered when their motivation to succeed comes from within.

What will they say when they can talk? 

Some parents have reported feeling surprised by what their very young children have said about their limb difference, whether in just a few words or longer phrases. They may make statements, such as “I do that with nub”, repeat others’ comments, such as “Nubby looks funny”, or express any number of feelings, such as “Me love lucky fin!” 

Be prepared for them to say negative things sometimes

You may feel surprised to hear your child say things like, “I sad – no foot, just nubby.” While it is not easy for any parent to hear their child share sadness or anger about their difference, it is totally normal and to be expected that they sometimes will feel these emotions. You can prepare yourself to hear hard things by role playing with a spouse, friend, or family member. Knowing in advance that you occasionally may feel heartbroken can ease the shock and challenge of those moments. Some examples that parents have shared: “Why I have to be born like this? “Will my hands/feet be big when I’m 5?”

Stay tuned for more tips on supporting your child when they are sad about their limb difference!

Important takeaways

  • By the time your child is a toddler, they already know they are different
  • Before they can talk, they hear everything and they understand a lot
  • Surround them with love by modeling talking positively about their limb difference
  • Don’t allow anyone to define what your child can or can’t do
  • Read picture books aloud to your child that include characters with limb differences
  • Many organizations host events where your child can connect with others like them
  • Your child shouldn’t have to prove themselves to anyone
  • Some parents feel surprised by what their very young children say about their difference
  • You can prepare yourself to hear hard things by role playing with a spouse, friend, or family member

Complete the form below to download a free printable copy of the What to do when your child realizes they have a limb difference


Read the other posts in this series:

© 2024. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy

Posted in ,