Attitude Makes All the Difference

On Sunday, at the zoo and at the McDonald's playground I found myself experiencing feelings I had not felt since walking in public in Poland.  The feeling that people were looking at us with horror and revulsion. A minority, of course, but the minority tends to set you on guard. We had more negative comments than we have had the entire year and a half Lukasz has been with us.  

While the comments themselves from children were more hurtful than usual (although still innocent because they were just responding with a visceral reaction, not intentional meanness), it was the response of their parents that hurt and reinforced the comments. 

When walking into the play area, we passed a 13 year oldish boy sitting with is family.  He said, "Oh, gross, look at his face!"  And his mother in an embarrassed tone said, "SHHHHHH! We don't say that."

At the zoo, a child said, "Yuck, his face, Mommy."  In a worried tone, his mom said, "Don't say that!"  Another child, "That boy only has one eye, Mom." A hurried, "SHHHHH!" and the mom steered her son away.

And from one parent walking with his children, "Oh, my God, that poor kid."

The attitude and tone these parents had when they made their comments were hurtful because I know what it will teach these kids --"Yes, his face is Yuck, but we don't talk about it, we don't say it, and we will get away from it as quickly as possible."

At the least, being summarily hushed with a tone that implies embarrassment, fear or worry, make children feel guilty for asking their guides in life (their parents) about something they've never seen before. They need their parents to tell them in a non-chalant way that "he was just born that way" or some other such explanation so they understand that Lukasz and other people who are different are normal, just different. If you are scared, repulsed, etc., your children will pick up on it no matter what your words.  Please don't silence your child, even if you are just trying to save my or Lukasz' feelings. It just makes him a subject not to be spoken of or to and reinforces their fear of him.

Children are concrete thinkers.  That means they understand better when they can see the subject in front of them.  Waiting to talk to a child later or "when we get home" will lose the well-intentioned affect of whatever you tell him or her. Not to mention they will hardly remember who you are talking about.  All they will remember is that you told them (without words) that my son is something not normal; that is not to be discussed and probably something they should avoid.  And children ridicule what they think is not normal.  Making my son a subject to be spoken of only out of his ear shot teaches your children to whisper to each other about him or other different children rather than approaching them.  He will hear the whispers and that is hurtful.

Does Lukasz' Age Make a Difference?

In the past 1.5 years that we have had Lukasz, we have rarely had a negative comment about his appearance.  Plenty of curious questions and stares. Those don't bother us at all.  I don't mind that people want to know why he only has one eye and one ear.  I don't mind that they look at him as long as it does not continue for an uncomfortable length of time or if they are playing with him and being kind while they look.  He's different.  We get that.

I have noticed that as Lukasz gets older, more active, more social, more eager to initiate interaction, the comments, stares and questions have increased and the fear/reluctance in other children has increased. Likewise, the responses from parents have taken on a new negativity in tone and manner even if they are the same in the words they choose.  I think it was easier for parents to see Lukasz as a little baby they hardly had to look at, who would just walk around and play by himself; they could just glance and look away.  It was easy to quickly say, "Oh, honey, he was just born that way, he's just made different."  But when a toddler is running up to them, looking them right in the face, asking them to play and he looks SO different, they feel a little bit of that "Oh, my God" feeling their kids feel and they just want to quickly look away and quiet the comments that remind them of their own feelings.  They don't want to hurt feelings and they know they shouldn't feel the way they do but they can't muster up the courage to do what they should be telling their kids to do--talk to Lukasz like the normal kid he is.

Lean Into It

Lean into Lukasz and you will love him.  Look at him for a couple minutes and you won't even see his differences anymore.  Do it and your kids will see and they will do it, too.

Ever Consider Adopting A Child with Craniofacial Issues? Or, If Not, Maybe Pass this Info On?

If any of you have been caught up in Lukasz' charm and been inspired or if you have always thought about adopting a child with a craniofacial differences and/or hearing issues, here is a child you may want to consider;  Bode.  The agency that advocated for Lukasz and found us is now advocating for Bode. I wish we could adopt him but as my husband says "no more room in the car".  So, I will advocate instead.

But, first, "Advocate" is Not the Right Word

Everyone talks about "adovcating" for a child but I really don't think that is the correct word. "To advocate" means "to speak or write in favor of; support or urge by argument; recommend publicly".  I don't believe that is what any of us are doing. When we tell people about a particular child who has been passed over for adoption for any reason we are not arguing for them or recommending them because none of us would say "this child will fit in your family" or argue a family into adoption. Nor would we say that this child is right for every family. Every individual and family must decide for themselves whether adoption and any particular child is right for them.

Really, I think we are just spreading the word about these children.  Trying to let a broader audience know that this child is still waiting so that his/her family (the right one for him; the one that can handle and love his issues) will hear about him/her.  And when that family hears about him or her; sees that face for the first time, they will start a journey of consideration that will ultimately lead to him coming home; being claimed by the ones who belong to him.

If you know Bode is not the child for you, then pass on his information so more people will hear about him and he will get closer to his family finding him.  And spread the word about any waiting child.  It may be your voice that leads a family to their child.

So, here is the info on Bode (pass it on):

Bode is in Bulgaria and just turned two.  He has hearing loss and craniofacial differences (just like Lukasz, he got both) but is reportedly on track developmentally with his peers. It looks like a particular craniofacial syndrome that I ran across while researching Lukasz' issues, but I am not a doctor so won't guess. However, that syndrome wouldn't make me hesitate to adopt this guy if our car had more seats. Below is a video of him.  It appears he has both eyes so he's a little ahead of Lukasz in that respect and he sure looks like he has the same spunk.

If you or someone you know might be interested, email me; I'll get you to the people with more information. And I am always willing to answer any questions anyone may have about living with/managing craniofacial differences and/or adoption.  Plus, I am always open to conversations with adults. :-)

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Babyface: A Story of Heart and Bones

by Jeanne McDermott

There are so many things I could say about this book.  I read it soon after we started the initial steps to learn more about Luka before we committed to adopting him.  And I wish I had read it during my first pregnancy (which resulted in a miscarriage).  Pregnancy was always such a time of worry for me--what could go wrong with my baby, how could he/she be "different" and how could I handle that?

The first and most important thing I can say about this book is that every parent should read it--preferably before their child is born or adopted but in any event anytime they first hear of it.  The author is a scientist.  Her pregnancy was normal.  All prenatal tests were normal.  Her son was born with Apert Syndrome.  Apert Syndrome is a syndrome that is manifested with severe craniofacial and hand differences.  And she learns that there is nothing "wrong" with her son.

What is so beautiful is the way she comes to understand the world through the way she sees the world "seeing" her son.  She learns to not resent the stares or comments.  She learns that scientifically and neurologically the human brain naturally must take a moment to understand what it is seeing  (ie., resulting in the "stare").  In the moment that the stranger stares at her son and then looks to her, his mother, the brain has processed his "strange" or "different" appearance to that of "oh, he's just a boy".  And it is her response to the stranger that BOTH the stranger AND her son will look to for an understanding of his place in the world.

A defensive, hostile response will tell him and the stranger, "There is something about me that must be defended.  I am different, I am a victim. The world pities me because I am 'less than.'"  A nonchalant, matter of fact, "Isn't he cute?" or, in response to a question about why he looks like he does, a nonchalant, "He was born this way.  He has Apert Syndrome,"  will tell him, "There is nothing wrong with me; my mother knows that no one would think anything other than 'What a great little boy.'"

Here is the quintessential premise of the book: in the locker room of a gym, a boy asks his mother, "Why does that boy have a big head?"  The mother simply, matter of factly, and, to the surprise of the author, states, "He has hydrocephalus.  Like your cousin."  The boy nodds, satisfied and walks off.  At first the author is enraged over the child's comments and his mother's erroneous response.  But the conclusion she comes to is so poignant and the rage dissipates as she reaches it:

     Slowly, the realization dawned that the words themselves had little to do with the ease, comfort, and acceptance
     that the first locker room mom communicated.  Whatever got said would never be as powerful as the way that
     it was said.  The secret to handling the inevitable fear and fascinationof outsiders lay in the subtler cues--the
     ones that Clever Hans [a dog referred to earlier in the book that seemed to "read minds"] read so well, the ones
     that can be summoned but not faked--body language, tone of voice, a positive attitude.

And the more open she is to the stares and comments of people--on the bus, in the park, at the store, etc., the more she realizes that just because people stare doesn't mean they are thinking negative thoughts.  Sometimes, they have a child with "special needs" and would love another mother to talk to, or they just want to make faces at her son just as they would another "normal" child, or they are just curious with no judgment.

What I love about Ms. McDermott is that she says: "when strangers hesitated with Nathaniel, I became more gregarious and outgoing, deflecting awkwardness by extending delight in my baby. 'He's cute, isn't he?" I said gently to the tired young woman on the bus who was stealing looks at the Nathaniel.  It was my way of acknowledging that her stare was natural but also a cue."  And the woman eventually responds, "Why, you are a little cutie, aren't you?"

It's really all in this optimistic statement, "The world could be an ugly place but I took initiative and crossed that chasm with unbridled optimism that it didn't have to be. Life was too short to nurse animosity or register blame."

AND,  "I was calm because people learn."  What is more profound than that?  If we can all cut everyone who says something insensitive a little slack so we can really see what their intent is before we lash out, we might be able to teach OR we might find that people are not intending to hurt with what they say.

More on this book later.  Just wanted to share.  I think if I read it the first time I was pregnant, I would have been a much calmer pregnant lady.  I would not have been as super paranoid.  I would not have been counting down the days to each prenatal test and result.  I would have truly understood that any child I had, I would be able to totally love, care for and parent.   Even though I understood that when I had my children, and adopted my children, I had never really placed myself in the footsteps of a mother of a child who had "differences" of any kind.  I would have been more at peace.