Wednesday, June 26, 2013

SPECIAL NEEDS ETIQUETTE 101: What're YOU Looking At?

He was despised and rejected by people,
one who experienced pain and was acquainted with illness;
people hid their faces from him;
he was despised, and we considered him insignificant.
~ Isaiah 53:3, NET ~

When I sensed God impressing upon my heart to begin writing this series, I gave a shout out to parents on our Facebook page, asking what they would like to see addressed when discussing proper etiquette with a child who has special needs.  Bar none the most emphatic response was that parents wanted me to confront the issue of staring. 

Think back to grade school for this one.  Remember when you were singled out for some reason, usually a bad one, and all eyes in the classroom were on you?  Recall the weight of your peers glaring at you as you felt their words come without speech, "You are in trouble now!".  Reach back in your memory to feel that guilt and shame of being ostracized, berated, shunned.

That laser-focused pain aptly describes how I felt when greeted by a stranger at a Memorial Day parade we attended back in 2000 with a scantily clad 1 1/2-month-old baby.  An "angry" deep purple hematoma shone on his little bicep.  "He's quite the little bruiser there, isn't he?", the stranger repeatedly commented as he allowed our newborn to grip his weathered finger.  There was an uneasy implication that we had done something to cause our son that injury.  It wrenched my gut at the time, clumsy and speechless in my first of many such experiences.

That wouldn't be the last time I felt such a stare.  When our refrigerator was delivered to our new home 12 years ago, one of the appliance store's workers caught sight of our toddling 1-year-old with nothing on but a diaper and a bruised torso looking like an over-ripe piece of fruit.  He looked at my son, looked at me, and shook his head in disgust.  I can almost feel the sickness in my stomach as I recall wanting to shout out, "But you don't understand!  He has hemophilia!  He bruises for no reason at all!"

Probably the most painful stare I experienced was when our "Houdini" daughter with her "alphabet soup" of diagnoses escaped our house in only a diaper, running through the yards as I dared to use the toilet for a moment.  Notorious for judging me a "bad parent", one neighbor called the other next door exclaiming, "Quick!  Look out your back window at who's running through your yard!"  Never once did these women ever venture to help me, help my daughter, or ask if there was something more going on with our girl.

From accusatory to curious to disdain, stares can be so immensely painful for parents like us.  They say things like, "Why don't you get that kid under control?", or "What is wrong with that kid?", or "Yuck, get me away from that weirdo!", without ever uttering one single syllable.  For mothers and fathers who deeply love their child and only want acceptance and love for that child, those stares seem like a knife to the heart.

So, how do we deal with this most uncomfortable of situations where eyes are inevitably pulled in a certain direction?

For the one who is staring:
  1. Realize how painful your unbroken gaze is.  Try to exert some self-control.
  2. If you are "giving the look" because you don't like what you see, understand that you are only 1 emergency room visit away from being the person you are staring at or their family.
  3. If you are concerned, about the one you are staring at, gently approach the family and say, "I'm sorry.  You look like you could use some help.  Is there anything I can do for you?"  If the person is rude to you in response, that's their problem, not yours.
  4. If you get caught staring at someone because you see something unusual that you can't help but look at, apologize to the person for staring and find something nice to say like, "I'm sorry, but I can't help but notice what a remarkable child you have!"  This breaks down barriers and may start a conversation.
  5. When a room is silent and an individual with special needs breaks that silence, you need not stare.  The family already knows that their loved one is creating a commotion.  Instead ask, "How can I help?", if you have the opportunity.  Otherwise, welcome the noise as part of the vibrant life in the room.
  6. Adults, learn yourselves and teach your children that it's not appropriate to say, "What's wrong with him/her?".  The person you are speaking about with a special need is perfectly made by a loving Creator.  Instead, perhaps you could all learn to courteously humble yourselves and say something like, "I'd love to learn more about your son/daughter.  Would you share his/her story with me?"  We parents of kids with unique abilities will affirm to you that our children are so much more than their diagnosis.
For the one being stared at:
  1. One situation that always makes me laugh when I remember it (although it was certainly unnerving to the family at the time), was when our friends' son with CP was at a private school picnic, and another little boy just wouldn't stop staring.  The dad, a huge ex-football player looked right at the staring kid and said, "Can I help you, Johnny?  You see something interesting, Johnny?  What do you need, Johnny?"  The poor kid finally broke his stare and shrunk away in complete intimidation.  The special needs parents were pretty upset too.  In retrospect, the dad couldn't believe he had, with all his imposing physique, asserted himself like that.  While we chuckle now, I wouldn't exactly recommend coming on that strong with others.  Rather, when dealing with curious people, if you have the strength, ask them if there are any questions you might answer for them.  A response that might work could be something like, "I can't help but notice that you are looking at my son/daughter.  He/she is a pretty remarkable person.  What can I tell you about him/her?"
  2. When my son has times where he must attend school in his wheelchair and classmates are staring, asking, "Why are you in that wheelchair?  What's wrong with you?", I have taught him to reply, "Thanks for your concern, but I really don't feel like talking about it right now," if he's not up to discussing it.  We all have times where we are tired of educating others, tired of explaining, tired of the stares.  That's okay.  But we are most effective with an ignorant world when we are courteous in our response to them.
  3. Anyone who has known me for even 5 minutes knows that humor is one of my favorite coping mechanisms.  If you just can't get past someone staring, ask them if your loved one has something stuck in their teeth, give them your best parade wave or blow a kiss at them, or do a shocked look behind you.  I known people that have had asked if something is wrong with those who are staring, only to receive the response, "Well, your daughter is handicapped."  Their humorous response was, "Really?!  Oh, my gosh!  We'd better get to a doctor!"  Sometimes, all you can do is laugh.
Ultimately, whether you are the starer or the one being stared at, remember how people gawked at Jesus.  He understands the plight of those ostracized by society.  If it was not okay for people to stare at and turn away from the Son of God, then it certainly isn't okay to treat the least of His children that way.  We must learn to treat others with the dignity that God imbued in each precious life He created.  That includes making our best, Spirit-guided efforts to have a gentle, merciful spirit with others when they just can't take their eyes off of us.

PRAY:  Lord, no matter how others may stare at us or those we love, help us to remember that we are each precious in Your sight.  You look upon us with lovingkindness, favor, and mercy.  Help us to treat one another the way we would like to be treated.  May we not pass judgment on another until we have walked a mile in their shoes.  And may we gain the wisdom to realize there is always so much more than what can be seen with the naked eye.


~ Barb Dittrich

4 comments:

  1. Love this series, Barb! I'm saving these for Grandson Matt who is working on Disability Awareness merit badge (with my encouragement). O, the stories we could all tell...thanks for DOING it!

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  2. I have had people stare.. because my 2.5 year old son cant walk yet .. he has Mild CP because he was born 4 months premature. people have also stared because he loves to chew on his toys .. he uses his hands , and his mouth as well to play.. and they stare so confused .. " why is a 2.5 year old chewing on his toy"... gah ..I just say .. he likes to chew on things .. I chew on pens .. often. haah.. or " whats wrong with him.. did he get to much oxygen at birth . also people stare when they see his AFO'S (leg braces) or the fact that he has glasses.. he got glasses when he was 1 years old .. we had SOO many people ask us why we " dresses our son up in glasses" if it was for style .. and we shook our heads .. also people give us bad looks .. for him having glasses.. like we just put them on him for no reason..people ARE INSANE!!
    He is super skinny as well because he uses way more energy to do everything and he burns off all the calories very quickly. People ask why he's so skinny don't we feed him. another thing I get is.. people will compare him to other people they know who have a disability .. but they act like all disabilities are the same.. and will say he is going to " be like this" or do this" based on the person they know who has a completely different disability!!

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    1. I am SO sorry to hear all of the comments and judgment you are subject to. I'm praying that knowing who you are as parents and who your child is in Christ will bring you much healing from the stares and words of others. <3

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  3. Enjoy the spirit of laughter & joy in response to others inability to cope, rudeness or ignorance:0)

    My child because the whole alphabet follows her around does not even understand enough to be hurt by others rudeness and her spirit is so bubbly that others often are overwhelmed by her smile. When those occasions arise, and they do and they will, I look at it as an opportunity to educate others so that they can accept the differences and proceed to go about life together.

    I truly enjoy engaging with children and often am delighted by their openness to my daughter once the barrier of her disabilities has been discussed. The children whether it is at school, church, or the park (etc) are curious and want to know what & why. Most accept the answer that she was made this way and that although she may be different she is still the same on the inside with a beautiful soul that has feelings & thoughts just like them. For most children this is enough & they are ready to go full force & 'play' with her but others have more questions. In all my experience with engaging children to educate them about my daughter I have never met one who is then mean & unkind to her. They may not play with her all the time or be her best friend but they are usually aware of her & include her, & then there are those who want to help her & be her friend.

    You may be delightfully surprised by the children's responses; their thoughts are often simply beautiful.

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