Moments of Sweetness while raising a child with a limb difference

All parents experience moments of sweetness while raising their children. As a new parent of a child with a limb difference, you may wonder what moments of sweetness you may experience that specifically relate to raising your child. Your child may not experience all of these moments, but when one occurs, celebrate and treasure them by writing them in a journal, sharing with a family member or close friend, or recording you or your child explaining what happened. Referring to these moments can be helpful when you or your child experience a hard time.

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.

A quick caveat that focusing one’s praise too much on 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

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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