1.12.2011

Joe Q. Public

I've received several emails and questions recently about how I handle people in public that have questions about my kids/ stare/ comment, etc.

I thought I'd share what I do.  Of course, this is not set in stone - I always evaluate the situation and the audience.  And, I may totally change how I handle something next week.  I'm always reinventing what I do and say as my kids get older.

I have spoken with many moms of other amputees - I always ask them how they handled people in public. I wanted their advice because they have walked this road before me.  I have also spoken at length with a child psychologist who has worked with kids with limb differences.  She counseled me about what words to use.  I have read books - by Kyle Maynard & Roger Crawford.... Their insight and stories about how their parents (& later they themselves) handled public commenters really helped me develop my own strategies.

By nature, I am not confrontational.  I am also not real social!  (Will, on the other hand, is Mr. Social & usually leaves an airplane sad that he didn't get to meet everyone or high five everyone.  He also has friends at the grocery store and pretty much everywhere we go.) I am content to run in somewhere and never say a word to anyone.

My number one goal is always always always that any conversation I have about my kids' differences show respect and love for my kids and give glory to our God, their Creator (John 9.)  (Actually, I guess that is two goals.)  A long time ago, I realized that the person I am speaking to will walk away from our conversation and may or may not remember it.  But my child beside me will remember how Mommy spoke about them.  My child will have a lasting impression of how I handled the situation.  It is my child I care most about.  That has influenced how I answer people greatly.


In quietness and confidence is your strength.   Isaiah 30:15

... I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious - the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse....Do that, and God, who makes everything work together, will work you into his most excellent harmonies.  Philippians 4:8-9 (MSG)

When I ask God to give me words, when I ask Him to help me answer difficult questions, when I remember to focus on what is true and lovely and pure and good and beautiful, I find that I am better able to handle situations and conversations that otherwise would silence me.  That's not to say that there aren't tears sometimes or that there aren't certain situations that I dread (birthday parties) but I am learning to focus on Him, on His truths, on what He created good, and to quietly let my answers reflect Him.

When Will was a baby, it was actually easiest as I didn't worry about crying in front of him if a conversation upset me.  I also felt like I could "practice" my answers best when he was a baby.  I could try out different words and phrases and see how they felt and how it worked.  And as I practiced, I developed what would work best for me.

With Ellie, I don't get to practice very much as Will is old enough to hear me and understand me.  I also don't cry as much in front of him now.  If I am really upset and can't hide the tears, I explain to him that it  makes Mommy sad when someone is mean to us.  I have found that my shower welcomes my tears and drowns out the noise (& bonus - I get shaved legs out of the deal.)

I think it's critical for a mom (or dad or grandparent or friend) to be cautious with their words especially when an older sibling may be able to hear their responses.  I always want my children to get from my conversations that they are loved and respected.  I believe I am responsible for turning the tone of any conversation to one of respect.

My favorite age groups are teenagers - who are generally too self-involved to notice or care about my kids' differences.  I also love little kids - probably because that is what I have so it comes easy to me to answer their questions.  Also, they don't need a lengthy answer.

My least favorite age group is age 5-11 -ugh.  This group is more demanding of answers, whether or not it is their business!  They also are rarely content with a simple answer but demand more and more information.  And, it is the "whisper" group - they will loudly whisper & point and really aren't so secretive at all.  I've been known to walk up to a group of whisperers and ask them if they would like to ask me any questions.

The elderly are an interesting group.  Some (most) are wonderful and quite helpful, for instance when I am traveling with my kiddos.  However, every now and then, I come across an elderly person who apparently doesn't have a care in the world & will stare the socks off of Will's zanco.  I find that they generally don't care enough to ask any questions and yet feel no shame in staring - & sometimes grimacing... but maybe they are just cranky.

I try to smile when answering questions and put people at ease.  I encourage questions - I would rather a naturally curious child ask a question politely than not understand that God makes everyone different.  I hate it when I see a mother tell someone not to look (which never works.)  I love it when a mom tells their child that they can ask questions.  My kids are awesome and I am enjoy talking about them.  If a child is not allowed to ask questions about something they are curious about, they will conclude that a child with differences is somehow "wrong" or bad.  I absolutely don't want that assumption made.

I always begin the answering by introducing my child by name.  It is important to me that the person know my child is a child - a human being with a name and a personality (definitely a personality).  They are not a diagnosis.  I also try to include in the conversation some positive attributes about my child.  ("Doesn't he have the best curly hair?  Oh she is just the sweetest baby and has the best giggle.  Oh my, you should see how fast he runs!  He is such a brave boy, we are so proud of him. ")  Again, I know who is paying attention to their mommy's words and I want them encouraged from the conversation.

Sometimes people want to know what happened.  I usually remark that it is how God made them and how they were born.  I've come up with short answers as I have found that generally people don't really care to get a whole lot of information.  For Will, I remark that he has limb or hand & feet differences.  For Ellie, I remark that she has a limited range of motion in her joints.  Generally, this satisfies people.  Sometimes they want to know if they hurt (generally - no.)  Usually, people will walk away at this point (& after I've thrown in some attributes about my kids that I love.)  Just tonight, I walked through the living room where R was watching ESPN and saw an interview with Kyle Maynard (celebrity quad congenital amputee whom Will & I met in GA in 2009) and noticed that Kyle told people as a young child that it was "how God made me."  A simple answer is sometimes best and I try to take direction from older people I respect as to how to answer questions.

Sometimes, they want more information.  Depending on what I am doing I may try to answer their questions.  If I don't like where the question is going or I feel like it is none of their business, I may answer a completely different question and redirect the conversation.  (This usually gets me weird looks when they didn't ask at all about what I answered with.)

Sometimes people tell me they feel sorry for me or my child.  That TICKS me off.  I always tell them not to feel sorry for him.  And I remind the person that Will (Or Ellie) can do anything they want to - I tell them that Will does everything they do, just differently.  I address it to the age so, for instance, a 6 year old, I will tell that Will can color and feed himself & what foods he likes, and he can swim and dive and run and play soccer, etc. And then they get excited and amazed and that is fun to watch.
Recently, Santa Claus at the airport asked me what "they suffer from."  I wasn't sure who he was talking about.  He pointed at Will.  I said, "look at him (as he was happily running).  Does he look like he is suffering?"  He is awesome.  He has limb differences and he is just fine."  He is not suffering.

I also think it is important to model for my children how to politely & truthfully respond.  I want them to have confidence  in their bodies.  Now, at age 3, I try to let Will handle his own responses.  But I watch and listen and intervene if necessary.  Sometimes, when someone has been rude, we leave the conversation and pray together for that person (& I pray for my own heart.)  We talk about forgiveness & to be honest, I really struggle with it in this situation.  Sometimes, we get a good laugh together - like we share a funny secret.

Sometimes, I try to use humor in the conversation although I'm not a very funny person so this is a stretch for me.   I did this though when the woman thought my baby was upside down in my carryon (Will was walking beside me in an airport, his prosthetic legs were hanging out of my bag) or the time when he was flirting & "stripped" off his leg & tossed it back in an airplane to some college cheerleaders.  That was hilarious.  Humor relaxes people.  When Will's prosthetics have fallen off in public places (which happens often in the cold), people obviously aren't sure how to respond as they pick up a leg.  When they notice we are laughing (because, honestly, that is funny) they instantly relax.  And hopefully Will is learning that he too can use humor and be relaxed.

Only once have I said it was a shark incident.  And that was only because the little girl wasn't satisfied with any of my answers and I had had enough and was trying to swim with my little boy.  I had already answered her questions and told her I was finished.  She persisted so I said a shark got him.  We were at the ocean and I'm guessing she avoided the water after that.

Sometimes, if I feel like I have answered enough questions and want to get back to life/playing/grocery shopping/ flying/etc , I will tell the child that I am finished answering their questions.  Usually that age group of 5-11 will just keep going ("can he skateboard?  Can he color with black crayons?  Can he color with markers?  Can he color with colored pencils?"  It gets annoying.)  I've learned to tell them I have answered their questions and am done.

I do not allow kids to grab Will and examine his arms or feet.  I will tell them no and to let go when this occurs.  We have given Will permission to own his own body and to tell people no.  They can hold his hand and play with him but grabbing and studying his hands or feet is not acceptable with us.  (Just like he can't grab and study someone else's body.)

On the rare occasion that I encounter a very rude child, I will remove us from the situation or environment.  I try to avoid this though as I don't want to give that person power or make my child feel like we are leaving due to their differences.  But, if I can steer us away without letting on that it was because of that person, than I will.

If someone is staring and it is inappropriate for me to go ask them if they have questions, then sometimes I stare back with a smile.  Sometimes this doesn't work and I haven't figured out what to do when it doesn't work & I can't remove us (ie:  at church.)  Again - it's typically little girls ages 6ish.  Once, we told Will he could stare back and smile when he was uncomfortable with someone staring and pointing.  We also told him to wave.  We don't hide his body.  We don't hide him.  He is precious and perfectly made for us.

Usually I find that it takes about 30 seconds for someone to see past his differences and admire the child. I love watching people's eyes and faces when they see my child with limb differences run.  A friend recently told me that with Ellie, she believes her spirit will shine through past her differences.  I pray that God will empower her (& me) as I know questions will continue to arise about her.  He has given Will a personality that people often seem to notice more than they do his differences.  I pray the same for Ellie.

Perhaps the best advice I was ever given came from another mom a little ahead of me in this journey.  When Will was just an infant, I remember rocking him in his nursery while talking to her on the phone and crying and praying together.  She instructed me to lavish him with attention whenever I found myself in a situation where someone might be staring or whispering or whatever.  Oh my, this has been the best excuse every to just completely focus on my child.  I can't tell you how often I have been in line at the grocery store, noticed the lady one checkout lane over is staring, & so I began to do whatever it takes to get laughs from my kid.  This accomplishes several things - it makes me happy to kiss and tickle my child and distracts me from the rude lady.  And, it draws attention away from my child's differences and towards his great laugh or cute face or whatever.  Usually, I notice the starer is smiling - how could they not at the sounds of laughter coming from my grocery cart.  I hope they notice too how much this mama adores her babies.

I have learned that I don't owe explanations or lots of information.  I do believe it is important to spread awareness and to educate, in a sense, about limb differences (& now range of motion & AMC).  I am honored to be in a position to do that.  But, most importantly, I want my conversations with others and how I react to potentially difficult or awkward situations to reflect my love for my children, and my gratefulness to the God who created them perfectly for me.

9 thoughts:

Mike and Christie said...

You are a great mommy! :)

JJC said...

katie,
i love the way you beautifully talk with perfect strangers about your perfectly beautiful children. :) i have thought about you so many times. could you either email me or leave me your email address? i have a question for you. (i don't think it will require a lengthy response!)

jeffandjillcrownover at hotmail dot com

jill (walkinshaw) crownover

Mrs. Jenk said...

You are amazing and I love reading this post so that we, Joe Q Public, know how to respond to you. I will make a point when I see a child with differences to compliment them on something unrelated to make their Momma feel better. Thank you for giving us a way to encourage!

Lindsay said...

Love this post - you are an amazing mother and so inspiring. Thanks for your blog.

Amanda said...

Thanks for sharing this. You are a great mom!

Lisa said...

Amen, classy lady!

Lisa said...

Amen, classy lady!

tory said...

I'm telling you, girly~~~~you need to get working on that book of yours! :o) I am serious! You write and express yourself so wonderfully and where one can really relate to us readers....think about it, ok? God's Blessings to you and your beautiful family from your MT. blog stocker~~~love your blog! Keep the faith...((HUGS)) to Will and Ellie! Love~Tory

Cindy said...

Hi Katie,

I'm the mom of a 9 month old who was born with an arm difference(she is also a Texas Scottish Rite patient).

Your advice is so helpful and appreciated :) Thanks!

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