Yo soy La Lay

adventures in family, faith, and Down syndrome

(untitled vent.)

I do a lot of language correcting when hanging out with teenagers all day.  Normally, I don’t hear the word “retarded” on a regular basis. In fact, I could really count the number of times, Before and After, that I had to correct it on one hand. In a high school setting, that was promising. It seemed like maybe, the word was disappearing.

Until today.

3 different kids in four hours. Each kid got a lesson. One poor child even got pulled into my office and shown 47 pictures of Tessa all over my walls.

Every single time, it drains all of my energy.

I wonder if that ever stops?

What the heck, man??

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Lesson #30: Things I’ll never say again

1. “As long as it’s healthy.”

It doesn’t matter.

I said this a lot during both my pregnancies – especially when people would ask what gender we were hoping for. It was an easy response… “Oh, we don’t care, as long as it’s healthy.” I worry a lot about that qualifier and the message it sends to other parents – as if anything less than healthy makes a child unwanted. Nobody wants their child to hurt. However, I really cannot say that I would prefer a child without extra needs. In this family, if a child is not healthy, it will still be loved.

2. Is he (_____)ing yet?

It doesn’t matter.

It’s become a predictable habit of mothers these days to talk at length about what babies are doing. We share their weights and heights like trophies of our success as mothers –
the bigger, the better. It’s silly, really. And to a mom who is worried about her child for any given reason, it can be alarming.

I’ve said this before – it’s very freeing to have a diagnosed child who we know is on her own schedule for pretty much everything. But for those children who have no extra needs and are just a little behind, or those who do have extra needs but aren’t diagnosed yet, the comparisons can be unsettling. Even scary. So I’ll leave the milestone questions to the doctor.

3. Can I hold the baby?

When offered, I will, on occasion, accept. However, I’m not asking for the simple fact that I don’t want a mom to have to feel awkward about telling me no.

When Tessa was a new baby and people asked to hold her, it freaked me out. This really wasn’t about the germs, it was about her floppiness, lack of head control, and preference for hyper-extending her arms. I once (jokingly) asked the PT if I needed to coach every person who held her, fully expecting that she would tell me no, as long as it was a short period of time. And then she said “umm…. Unfortunately, yes.” Oookee dokee. It got really awkward for me, trying to explain to so many people why they couldn’t just hold her like they want. And since you can’t always “see” extra needs, nor do you know if a mom is uncomfortable saying no, I prefer to just avoid the situation altogether.

There is no need to walk on eggshells around other moms, but sometimes, a little empathy… a little consideration for others and their stories… that is what can make all the difference in our interactions with each other.

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On Language

Words are so powerful.  The problem is that words are also so tricky.

My life’s work is teaching students how to use new words to express themselves… to get what they need, to make a new friend, to experience the world differently.  The excitement of a student on a Monday morning who used Spanish to order in a restaurant on Saturday afternoon is beautiful.  16 year old teenagers beam from ear to ear as they tell me about how they understood someone in the checkout line at Jewel.  And I beam right back.   

One of the difficulties in teaching language is helping my students understand the differences in culture that can evoke strong emotion when a word is used incorrectly.  As a study abroad student in Ecuador, I lived with an absolutely wonderful family.  Toward the end of my stay with them, my host brother commented on how my host sister and I were similar.  He said that she and I are very intelligent, but like to have fun.  Trying to agree with him by saying that we are both kind of silly, I used the word “estupida” to describe my host sister and I.  Now, my Profe Junkroski taught me better than that back in my first year of Spanish, but in my rush to get my feelings out, I used a word that carries a much stronger meaning in Spanish than what I wanted to convey.  Her face flushed, as did mine…  it was painful and awkward.   

This is what happens when someone uses the word “retard” or any of its various forms.  

Let’s not mince words here.  The fact of the matter is that my child will most likely be mild to moderately mentally retarded.  That is an accepted and appropriate way for a professional to refer to her slower-than-typical cognitive function.  But it is not a word that is used to describe her as a person, nor is it appropriate for describing a mistake, or a rule that one might find bothersome.  It does not describe a friend who has done something silly, nor any other person or experience that is disagreeable.

You see, context is the tricky part of language.  And even the most mundane of words that we chose can evoke strong feelings in those around us.  Don’t believe me?  Say the word “mom” in front of someone who has just lost their mother or “pregnant” around someone who is struggling to conceive a child.  Don’t care?  That’s very sad and unfortunate for you.  

The reality is that we do not know the intricacies of the minds of those around us.  The joyful thing about language is that we have lots of words to use!  I’m not suggesting that one must avoid any and all words that could possibly evoke a negative reaction.  That is just impossible and quite unnecessary.  Again however, the word “retard” is only an appropriate way for a professional to refer to someone’s slower-than-typical cognitive function, and even there it is falling out of favor.  And rather than using the word “retard,” there are so many other ways to express ourselves that won’t turn the insides of our fellow human beings into knots.

When I called my host sister stupid, she and my host brother very graciously explained that the word I was looking for was “tonta,” with a meaning more similar to silly, which is what I actually meant.  If you hear the “r” word, might it be possible for you to do the same?

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