How to respond to difficult questions
Difficult questions can be aggravating.
A physical difference is noticeable… and many cultures around the world struggle with accepting differences. Even if we live in a culture that doesn’t make it easy to live with a physical difference, I focus on helping Jordan grow up with confidence and the knowledge that she can try it all with one hand.
A part of that goal comes with the extra step of helping her learn how to respond to the questions and not taking them too seriously. Some of the questions are appropriate. (We think questions are better than staring.) Some questions are incredibly rude. I sometimes react to the challenging questions with a lot of emotion (that I usually keep to myself) while Jordan will roll her eyes and move on.
I am a member of dozens of support groups on social media that focus on how to parent or live inside the special needs world. There is often an ebb and flow of questions from parents on how to handle questions from children and adults. They range from logical questions (what happened?) to rude questions (aren’t you sad?). Over the summer, I decided I’d try to experiment with brainstorming on ways to react to the questions on the Born Just Right Facebook page. I posted a string of different questions and asked members of the community to share their input.
There were some pretty wonderful responses and I think it’s worth capturing that moment here on the blog so we can come back to these ideas when we need them. (Facebook isn’t known for easy searching.)
Here are some of the questions and the responses from the community… I also embedded the full conversation at the bottom of this post. Thank you to everyone who continues to participate and share on Born Just Right’s page. I really appreciate it.
What do you tell a child who says a limb difference is “scary” or “gross?”
Christine R.:”We try to turn it back around, “How would YOU feel if somebody said you looked “scary” or “gross?” and that seems to work pretty well so far.”
Christine M.: “You know, even as an adult, there is sting when a child says this to me. I know that that probably sounds silly, but those words hurt even when you know that the child is using the limited vocabulary and understanding that they have to process the situation.
That said, especially with younger kids, I try to tee the opportunity to show them my hand and let them touch it. I tell them that it can’t hurt them and it doesn’t hurt me, so it isn’t something that should scare them. With older kids, I ask them how those words would make them feel and say that’s it just something different that makes me who I am.”
Mike S.: “‘It’s not scary but I understand why you think it’s different. Do you have something different about you? He has one hand, I have a funny birthmark, what do you have that’s different or special about you?’ I think especially for kids it’s important to get them to be introspective about the situation vs. concentrating on your child’s difference.”
How do you react when someone asks, “What happened?”
Barbara B.: “I say “Well, we don’t exactly know what happened. Even the medical community is not entirely sure. In my son’s case (symbrachydactyly) it is thought to be a vascular event, like a blood clot, which disrupts blood flow and did not allow the fingers to form.” I just keep my response matter-of-fact.”
Jen (from BJR): “In our case, I say that Jordan was born that way. For others, a limb difference may have happened due to an accident. I usually keep an answer to this question short and sweet unless the person follows it up with a ‘Why?'”
Kathleen W.: “When my daughter was a young teen and someone would ask she would tease and say a shark bit it off. I guess she was tired of the questions.”
Alissa S.: The shark thing, my son did too. My son is a twin And they are in Medical Journals Related to rare tumor . I had lots of questions why only one was missing an arm. As he got older he handled it very well and still does. He would go thru why doctors believe he had different arm he finally said a shark bit it off which made them all go, “Oh, wow” and leave him alone. As he got older in high school he used it as humor to get out of school work.”
I struggle with “I feel sorry for him.” I don’t want to invalidate other people’s feelings, but yeah, sometimes verbalizing your feelings towards my kid isn’t appropriate.
Christine M.: “I truly believe that most people are attempting to express genuine concern/interest and just have absolutely no idea as to how awful the things that they say sound. Children, especially, just don’t know what they are saying.
In my opinion, rather than focusing on educating the people making comments (though there does need to be some of that), the best thing to do is work on teaching your child that those words do not define him/her as a person. The comments will always come and you can’t ever educate enough to stop them, but teaching your child to find his/her personhood and value will deflect the comments in a way that nothing else can. For me, my personhood and value are found primarily in my faith in Christ, as well as in my family, my friends, my interests and my community involvement. While this will be different based on each person, these kinds of things are the root of personhood and I think, no matter what they are, they are the foundation of who each person is.
As an aside, I think it gets better in adulthood, as least it did for me. I do still get questions and comments at times, but because my family, friends and co-workers all know me, it’s not a major topic of conversation in my daily life now like it was in my elementary/middle school days.”
Kathleen W: I would say it’s not sad and she can do far more than most two handed people. She crochets, does macrame, sews custom wedding gowns, works the computer like a pro, etc. etc.”
Therese H.: When they say ‘sad’, it’s tempting to real off a list of activities that our children can do to prove that they don’t have limitations. Depending on the conversation, I’ve started using sentences like “He’s such a happy kid, nothing really worries him and he is super comfortable with who he is.” “He makes friends easily and is kind and considerate, his little hand really doesn’t hold him back”. I try to keep the conversation centred on my son as a person, rather than just his abilities (though a good brag about his shoelace tying skills usually gets a mention!) Most people have good intentions and just say the first thing that pops into their head. But, as my son gets older, he understands what and why people say these comments. It’s more important than ever now that I don’t allow people to be rude and offend in front of my son. I also need to set an excellent example of how to answer positively, yet firmly to the rudeness. I think we all must have permanent scarring from the bite marks on our tongues!”
TJ W.: “I say “are you kidding? It’s a blessing. He’s no longer in pain and he can finally do everything he wants. Trust me it’s a blessing”
Thank you so much for this post in inspires me and helps me as a parent when I get question about my son:-)
I’m so glad it could help!
An American Mummy friend of mine who also has an amputee child – Leigh Lncln (who connected with me through Camp No Limits) has just shared your wonderful post on Facebook, and I’m so grateful to find your Facebook page and blog – the wonders of modern technology, connecting you from across The Atlantic to us here in London!
Your daughter Jordan is beautiful and obviously very bright – you must be so proud – she clearly doesn’t let anything hold her back! I’ve just been reading all about how her story started and your site – just fantastic!
My six year old son Rio Woolf (he has his own social media pages for our fundraising campaign for his lightweight prosthetic legs: http://www.facebook.com/RioWoolf; http://www.twitter.com/@BladeBoyRio) and a website (www.run-rio-run.co.uk) is a through-knee amputee (congenital limb deficiency – a one-in-a-million condition called Tibial Aplasia – absence of the tibia, knee and ankle joint requiring a through-knee amputation at 14 months) and really lives life to the full – he is an aspiring Paralympian and wants to be a blade runner like his Paralympic heroes – and although he is generally very confident, he does clam up when children ask what happened to his leg and I am trying now that he is older not to jump in with my rehearsed short and simple answer (“he was born with one leg shorter than the other and the blade makes his legs the same length so he can run really fast” – I don’t talk about the amputation as the children asking are too young to understand and we haven’t yet told Rio himself yet about the op as we don’t think he’s ready to handle it yet – he’ll start wanting to know where his leg is and then we’ll need to explain that it’s buried with his Grandfather – but I am going to get some guidance from his Clinical Psychologist about when the right time will be – I don’t want anyone else telling him before we do) as I want him to be able to handle the questions himself as I obviously won’t always be there with him when he gets asked these sometimes offensive and intrusive questions.
One boy (aged around 6) recently said “I can’t believe you didn’t die when the car ran over you and cut your leg off!” This was a total stranger who saw Rio at our local sports club – Rio just stayed silent whilst the boy’s Mother/Child minder was mortified and apologised profusely. I managed to stay very calm and said “There was no car accident….” and then added my usual reply as above. He seemed to accept it but I worry about the impact these intrusive and horrible comments have on Rio and what he’s keeping inside, as he didn’t talk to me about the incident afterwards and I didn’t want to remind him of it by bringing it up again. I really like the shark bite answer though – maybe we’ll start saying that as it’s a real conversation stopper, although maybe it would scare some children, but then is that our problem?!
Sometimes I just want to say “It’s none of your business! You’re a total stranger!”. I would never dream of asking someone I don’t know what happened to their child, especially in front of the child! At the end of the day, Rio is my main priority and I don’t want him to become self-conscious about his “special leg” – he is so proud of all his prostheses (he’s very lucky to have three – a running blade, a water activity leg and a “bendy leg”), but situations like yesterday when a friend’s four year old became terrified when Rio took his leg off as his socket was uncomfortable, make it very difficult to know how to handle it – the little boy was shaking and cowering under a nearby table in the restaurant and wouldn’t come out. And even after we tried explaining that Rio wasn’t hurt and that the leg is nothing to be scare of, he still wouldn’t come and play – and when Rio put it back on and had his track suit bottoms rolled up with his leg on display, the boy wouldn’t come near him until he rolled his track suit bottoms back down to cover his leg – but then why should Rio have to cover up? I don’t ever want him to think he has to hide his leg away!
I’ve also had the “Oh that’s scary!” comment and we’ve just had to tell the child that’s not a nice thing to say, etc. then they feel suitably remorseful about their offensive comment! I like the introspective idea – to turn it back on the child who made the comment! As for the “Oh poor boy!” comments – I just say “No he’s not a poor boy! He’s a very happy boy who’s living out his dreams!” The trouble is it does make you slightly aggressively defensive – in my case, anyway – and yes, I then list all the amazing things he CAN do!
What I find the hardest is the stares – yesterday even when he was in his wheelchair with his leg covered with long trousers (I suppose people can see it’s a straight leg), a woman looked at him as she walked towards him with her children and she continued to look – for quite a few seconds (it’s one thing to glance and then look away, but she just carried right on staring!), and I know I must control my emotions – at least in front of Rio – but I find it so hard – I just shouted at her “Why don’t you just take a photo – it will last longer!” – unfortunately, she turned out not to be English and my sarcasm was wasted on her, but I quickly followed up with “It’s rude to stare!” and then she denied that she was – yeah, right!
Another time we were wheeling Rio through the airport and an elderly woman looked at him, saw his cool running blade, and gave a really loud gasp of horror, putting her hand to her mouth like she’d just seen something horrific! I told my husband to push Rio through to Security whilst I ran up to her and shouted at her “Don’t you EVER do that again! If you can’t look at my son and SMILE, then look the other way!”. Her son was so embarrassed he had to physically turn her head away for her as she seemed frozen in her stare at Rio!
Anyway it’s SO helpful to read your blog and the posts from your other followers about this very difficult subject – I have shared your blog on the LimbPower Junior Amputee Parents’ Facebook page (a charity which supports amputees here in the UK) and am sure our friends will find it very helpful – some of them have lost limbs due to illness (bone cancer and meningitis) or from road traffic accidents, and others from congenital birth deficiencies.
I was wondering if you’ve written a blog/post about how to answer YOUR CHILD’S difficult questions about their “little legs/arms”, etc.? Rio has been asking a lot of challenging questions recently like “Why am I the only one in the family with one leg?”. Obviously I tell him it’s because he’s so special (but then am I implying that able-bodied children are not special?!) but I don’t know how much longer he’ll buy that response as he’s growing up so fast! He has also asked “How does it feel to have two legs and what does it feel like to be able to bend both legs?”.
What’s also been difficult is when he recently met a few other amputee children and one of them (a 16 year old) was a foot amputee – which seemed to confuse Rio into thinking that when he gets his older, his little leg will continue growing until it reaches the same length as his natural/left leg…..it was heart-breaking to have to explain that it will never grow that long. A few months ago we were talking about what kind of prosthesis he’d get next (i.e. the all-important socket design – usually based on the “Rio” movie characters and the “Rio 2016” Paralympics logo!) and he once again pulled on my heart strings when he said “I hope my next leg is like this one!”, pointing to his left/natural leg.
The other week he woke up screaming hysterically and crying in the middle of the night saying that his residual limb (I hate the word “stump” and we don’t use it – although I know it’s a commonly-used term – it just sounds negative to me!) was really hurting him, and screaming “I hate my special leg, I just want to cut it off right now, it hurts so much!”. All we could do was comfort him, telling him once again how special he is and that no one else in the world has a “Rio” running blade with a foot, etc. (to our knowledge – he is lucky enough to be the only child in the UK to have one, at any rate!) and give him painkilling medicine – so hard to handle these situations.
Sorry I have been waffling and rambling on for so long, but this is the first forum I’ve found on this difficult subject and it’s great to talk openly with other parents facing the same ordeals and challenges on behalf of their children and to hear how they’re handling it.
Very interested to hear other parents’ experiences and advice!
Thanks for reading through to the end!
Juliette
Juliette, I’m SO glad you found Born Just Right. Jordan is eight years old and has asked questions and dealt with staring and rude comments for a long time. Here are a few extra links that might help. Also – please feel free to email me anytime at jen [at] bornjustright.org
Jordan has only cried about her little arm once… And I let her cry: http://www.bornjustright.org/2009/09/letting-her-mourn-a-bit/
Yes, having a limb difference isn’t great all of the time. But it also gives us a chance to meet and experience things no one else could imagine.
I’ve focused on staring as an issue for may years:
http://www.bornjustright.org/2007/11/staring/
http://www.bornjustright.org/2012/01/no-whats/
http://www.bornjustright.org/2012/10/flashback-friday-taking-risks/
My favorite realization as a parent of a limb different kid: Instead of getting angry at kids and adults who react poorly to a limb difference, Jordan and I often talk about how sad it is that those people haven’t had enough experiences in their life to know people are different. That shift in our perspective has really taken a lot of the angry away.
I look forward to staying in touch and following Rio’s adventures!
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