While my experiences are directly related to having been born with limb differences, I would pass much of the same suggestions to parents of any special needs child.
1. DO NOT treat us any differently than you would your other children. Instead, DO have patience with us as they learn to do things our own way, even if it might be differently or more slowly. Children are resilient and we don’t miss the things that we never had. Instead, we learn to make due with what we’ve got and figure out how to do things our own way. Too much coddling or doing things for us teaches us to depend on you to do things for us rather than finding creative ways to do things on our own. You won’t always be around to do things for us so encourage us to learn and grow and be independent.
2. DO NOT feel sorry for us or blame yourself for our differences as most of the time it’s nothing that you had any control over. Instead, DO teach us to love ourselves and that we are strong enough to do anything we put our mind to. I know for the longest time my mom blamed herself for my having been born with ABS although there was nothing in the world she could have done to change the outcome. I know sometimes she felt bad for my struggles in doing everyday things, though having to work through them is what has made me strong. She pushed me to be the best that I could be, encouraged me to be involved in sports if I wanted, gave me chores around the house just as my siblings had and taught me that with hard work I could do anything.
3. DO NOT let us feel sorry for ourselves. Instead, DO give us comfort and reassurance when we need it and encourage us to keep trying. There are days even now when I still fall victim to feeling sorry for myself, even as an adult. Growing up and having these days, my mom would give me hugs and kisses, listen to whatever was troubling me and then help me think of ways I could manage whatever it is that was giving me a hard time. I have since found ways to be able to play the guitar in spite of my fingers, conquered driving a manual clutch vehicle with a prosthesis on my right foot and so many other day-to-day tasks that were tough for me. It taught me to be creative and think outside the box in life rather than giving up at the first sign of struggle.
4. DO NOT hide us away or refrain from public outings just because someone might ask questions or look at me strange. Instead, DO socialize us and let us get to know new people. Just as different people have different colors of skin, hair, face shapes, eye color, so people have different arms and legs, hands and feet. Teach us that though we might look different, everyone looks different and that’s what makes us who we are. Don’t be ashamed for our differences or try to hide them in public as we will learn to be ashamed of ourselves and continue to try and hide who we are when we are older. Take us on play dates to the park or the pool and let us interact with others. We might get a few odd glances or questions, but be open to others who might approach and we’ll learn to be open as well. Remember, we learn how to react to others in regards to situations in large by how we’ve seen you react.
5. DO NOT hide away our differences with clothing or by covering them. Instead, DO teach us that it’s okay to be who we are without shame or the need to prove ourselves. I worked with an older lady several years ago who hadn’t been diagnosed with ABS, but her left hand didn’t develop much past the wrist and she had tiny little balls of flesh where her fingers would have been. She always wore a sock over her hand, kept her hand in her pocket or would hide it behind her quite often whenever someone else came around to talk to her. We talked one evening about our differences and I could tell she’d never really accepted herself due to her hand and had poor self-esteem because of it. It showed as well in her attitude. There was a certain amount of entitlement that she had and she would say and do what she could to try and prove herself worthy of respect. In a residential social work facility, this came out as stressing her “superiority” as a staff person, unnecessarily. We tend to develop this kind of attitude when we feel ashamed or feel as though we are lacking as an individual and need to try and make up for it. Remember, if you show shame in our differences, we’ll learn to be ashamed ourselves.
6. DO NOT be overprotective and always do our bidding for us. Instead, DO teach us to be able to express and explain ourselves. This one can be very tough, but it’s definitely important. As a parent, you want to jump to your kid’s aid when people stare or kids say mean things. But it’s important that your kid doesn’t shatter into pieces when this kind of thing happens. Teach us to speak up for ourselves, to have a voice. Explain to us what happened to make us different so we can explain it to others. Up until about 5th grade, I was teased and bullied daily, called names like “Pirate” or “Peg-leg Joe” in school. I’d come home crying regularly and not wanting to go back. But when I found my voice to speak up, all that changed. After talking to my teachers and expressing my desire to have a little assembly where I could “show and tell”, we agreed. I took in anything that had to do with my prosthesis and showed and explained everything. I even took my prosthesis and the socks off and showed everyone how it worked. From then on the bullying and teasing stopped and if anyone said anything, those who had teased me the worst stood up for me as well. Bullying tends to stem from ignorance and you can help your child combat it by teaching them to have a voice for themselves. Again, you won’t always be there in every situation so equip them us best as you can so we can fend for ourselves.
7. DO NOT feel like you owe an explanation to anyone. Instead, DO keep any explanations simple and polite. Although I said above to teach us to explain our situation when questions come up, don’t feel like you owe an explanation to everyone who ever asks. You don’t owe anyone an explanation of anything, nor do we. Just as people are born with different colors of hair or eyes, people are born with differences in limbs. Just as your neighbor doesn’t owe you an explanation of why she died her hair bright purple, you don’t owe her an explanation as to why your son or daughter is missing digits on her hand or walking with a prosthesis. It’s really not her business. Offering explanations, however, can lead to new relationships, friends, and support. It can often also add a bit of information to be kept in the back of someone’s mind for when they themselves face something similar. It offers the opportunity to share a unique experience with someone who would never have known that such things even medically happen. I always welcome the opportunity to tell others about my situation, but you and I don’t owe anyone an explanation just as we aren’t owed one when something new is presented to us.
8. DO NOT always take things so seriously. Instead, DO learn to make the best of whatever situation you’re given and we’ll learn to do the same. We’re only given one life to live, so learn to make the best of the hand you’re dealt and we’ll do the same. It can definitely be exhausting making thirty-five trips to sixteen different doctor’s offices four times a week, so learn to relax and enjoy the small blessings as they happen. Don’t always take things seriously and learn to have fun. I love to camp and one weekend when we were out, the campground was packed! Every camping spot was filled and people were everywhere. Barefoot and in shorts, I walked from our tent over to the restrooms and there must have been twenty tents in between with people sitting around fires at each of them. Many of them had kids running around, so you can imagine the looks I got as I walked by. I could see the whispers and nods of the head in my direction and feel the burn of eyes watching me as I went. On the way back, I decided I would give them something to really talk about. In the bathrooms, I turned my prosthetic leg around backwards and walked back to my tent with it that way (because I found it amusing one day and learned I could make it work). I’m sure you can imagine how the whispering and stares and “What the…”s increased with that. But I laughed about it. There’s too many hard times in life to take things too seriously. Learn to joke and have fun. BTW… there’s many other creative ways I’ve found to really get people going.. and you can’t do THAT with normal legs ?