By Melissa Bean
Everyone has questions about life with a missing arm, finger, or foot. Those of us born with a limb difference want to know if other congenital amputees have similar experiences. Parents whose children are born with limb differences want to know how to care for and encourage their kids. Every time I get online, I see questions in my Amniotic Band Syndrome and Lucky Fin groups from fellow congenital amputees and parents of congenital amputees. I try to share my insight when I can. Here’s what I’ve learned from my experience as a 53-year-old with a left below-elbow limb difference.
When did your child (or you yourself) start to realize/comprehend you had a limb difference? What do those questions look like from the child’s end?
I was probably 4 or 5 when I realized I had a limb difference. I was standing in the kitchen in front of the lower oven and could see my reflection. If I moved to the left, I couldn’t see my limb difference. If I moved to the right, I could see I didn’t have a left hand. I kept going back and forth trying to take it in. I felt confused, but I accepted my difference. I didn’t ask any questions because I was too young to formulate them. What mattered the most for me then was that in general, I was treated like the other kids in my family and at preschool. I was not treated like I was faulty or unequal, so I didn’t look at my arm and think there was something wrong with me – I just understood that I looked different.
When you gather with friends to “meet the baby” for the first time do you explain her limb difference up front or wait for questions? I met with friends recently, and I didn’t say anything, but I could tell they were looking and curious. How do I approach this?
This seems like a matter of preference, but I think the easiest thing to do is mention your baby’s limb difference briefly and move on. Then you can stop wondering if you should and your friends get the message that this is a non-issue because a limb difference is not a tragedy and your baby is not a curiosity. Going forward, you will notice a lot of people with questions watching your child – find a healthy way to handle it, whatever that looks like for you.
My 2-year-old daughter was born with her fingers fused together and is missing the third digit. When we are at the park, kids want to play and then notice her hands and start asking questions. We had one incident where a little girl noticed and then got scared and ran away. How do I handle other kids asking about her disability?
I can’t imagine how hard this is for a parent. People’s reactions and questions have been part of my life for as long as I can remember, but I don’t know how it affected my parents. I wish I could say it changes, but that has not been my experience. A good therapist might have helpful insight on how to manage your feelings in these situations, because it must be heartbreaking, and you deserve support and validation. When people approach you about your daughter’s hands, keep it simple. Have a script. “This is how she was born. Her hands are different. She’s OK, it doesn’t hurt, and you’ll get used to it. I know you’re curious, but we are here to play, so we are going to get back to playing.” For now, your daughter is too little to notice, so address your own concerns, set your boundaries and remember she has different hands, but she is whole, not broken or defective. Don’t let anybody make you feel otherwise, and you will be able to teach her to face this part of limb difference with strength and self compassion.
My 5-year-old is starting kindergarten. She has an above-elbow left limb difference. Is it a good idea to share a book about limb difference to her class and get the questions out of the way at the beginning of the school year?
If this is something you want to do and the school and teacher are amenable, then it’s a good idea. You might even do it in first grade too, but beyond that, I would not set the pattern of pre-emptively singling out your child in front of their peers. Your child needs to learn to speak for herself and handle the extra attention she will receive, but not be labeled as “different” or “special” by her parent and teacher.
My son is going into first grade, and I need to help him respond to repeated questions from the same child. I’ve told him to say “I was born this way,” but he prefers to ignore the question and walk away. Lately, he doesn’t want to go swimming because of questions. How can I help him?
Your son has given you two ideas already. 1. He is allowed to walk away from people who ask intrusive questions. 2. He is allowed to avoid people and places where he is the target of unkindness and intrusion. Having a limb difference can make us vulnerable to people who are selfish, have poor manners, low self-control and low self-worth. Learning to deal with negative or targeting behaviors from others takes time and a huge amount of support. Telling him to answer questions when he doesn’t want to is not standing up for him. I’m not sure if first graders can be bullies, but repeatedly asking personal questions and drawing attention to another person’s difference is bullying. He’s still young enough for you to interfere – ask the child to find something else to do or speak to the child’s parents, but let your son know it’s not his job to make other people comfortable or excuse their rude behavior.
My child has a limb differences. How do I teach her counting?
Eventually counting with fingers makes math harder, but in the beginning, it’s pretty automatic. I have one hand, so I count by spreading out my fingers and tapping on a surface. Starting with my thumb, I tap each finger and count to five, and then start over with each finger representing the next five numbers – my thumb is six, index finger is seven, middle finger is eight, ring finger is nine and pinky is 10.
My 8-year-old is missing digits on both hands. Any tips on teaching him how to tie his shoes?
Limb different children benefit from occupational therapy and can learn to tie their shoes, button their shirts, zip their pants, do their own hair, handle a kitchen knife, ride a bike and play just about any sport or instrument they want. It’s important they get support from a professional, but also understand the expectation from parents is that they can be independent and able to do these everyday things. Yes, there are elastic waist bands and slip-on shoes, but limb different children need to know how to care for themselves with minimal accommodation. This creates essential autonomy and confidence. Watch videos, get in touch with someone who has a similar limb difference and offer patience and encouragement. He can do it.
My daughter is beginning high school and is required to take a typing class. She has one hand. She can already type her school work, so I’m wondering if there’s any point of learning the “proper” way to type, or should I take her out of the class? The school is willing to do whatever we decide.
Keep her in the class. She will develop her own way of typing, but will still benefit from learning about typing strategies, physical ergonomics, and keyboard settings. Speak to the teacher and see if he is willing to spend a little extra time guiding your daughter on best practices for typing with one hand. In addition, an occupational therapist can make suggestions for using a keyboard and protecting the fingers and wrist from overuse injuries.
I have an amputation of the left arm below the elbow. My son and I have been invited to join some family friends on a birthday trip to an amusement park. The last time I went to this particular park, it was a negative experience because of my arm. I don’t care if I’m embarrassed, but I don’t want to ruin this for the kids. Should I go?
This sounds difficult. I’ve been and turned away from a ride at an amusement park because of my limb difference. I felt upset and angry, least of all because I’d waited an hour to get on and hadn’t seen any notice that I would not be allowed to ride. In this situation, I think your feelings are the first priority. If you want to go and your son wants you there, can you tolerate the discomfort? Is it worth it to you to address issues before the trip and others that might come up while you’re at the park? Will missing the trip be disappointing? If you go, your companions will not be seriously affected if you are able to regulate your emotions and responses. Set your expectations on low and your attitude on high self-compassion. It’s not fair, but do you want to miss out? We can’t control how the world sees us or reacts to us, but we can control our own responses and reactions.
Is it just me or does the word “stump” seem a bit derogatory?
If it makes you feel injured or uncomfortable, you are entitled to ask others not to use this term with you. Give them an alternative that feels more respectful – like “residual limb” or “limb different arm.” You get to set the rules on this area.
If you don’t have a right hand, how do you handle handshakes? I used to tell people I’m a hugger, but I’m not anymore. Handshakes always stress me out.
For awhile there, I thought Covid had freed all of us from this irritating, and sometimes gross, social convention. Handshakes are uncomfortable for many reasons. I have a right hand, but often it’s carrying things like a purse, keys, glass, or years ago, a baby. I didn’t know how to react and would sometimes try to shift my belongings (or baby) to shake hands, but it was overwhelming. Now, if I’m carrying something I say “I’m sorry, my hand is full.” You need an easy automatic response that protects your peace of mind such as, “I’m going to skip the handshake, but it’s really nice to see/meet you,” or “I can’t shake with the right, so here’s my left instead.”
I have recently turned 50 and have developed poor circulation in my residual limb (lower left arm). It’s purple and I have started wearing wool socks on it, which helps, but looks odd. Have you experienced this and what helped for you?
Yes, I have experienced this and I know others who have, as well. In fact, my arm has been sensitive to temperature and pressure for most of my life. It’s often purple and I have a neuroma at the tip that is really touchy. What helps me is regular exercise including my entire body and the parts of my residual limb that can be exercised, as well as massage. I am careful not to overwork my nub, and I rest and rub it gently when it is sore or cold. The sock is a great idea. Also, see your doctor and ask if there is anything she can recommend to address this circulation issue.