Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #3: Give us a smile

con·spic·u·ous

kənˈspikyo͞oəs/

adjective

1. standing out so as to be clearly visible.

2. attracting notice or attention.

synonyms: easily seen, clear, visible, noticeable, discernible, perceptible, detectable; person with Down syndrome

^

That’s reality right now.  Not that everyone in the room notices us, but that everyone in the room who does notice us can see that we are different.

We have run the gamut of responses to Down syndrome (remember this guy??).  Not all responses are negative.  Most, in fact, are quite benign, even a little sweet.  And they bring me to another little way that you can advocate for people with Down syndrome: smile.

Smile at everyone you meet on the street.  Good or bad, rich or poor, sick, healthy, clean, dirty, happy or sad.  A smile says “Hey, I see you, human being.”  I’m not saying you should fawn over every individual that crosses your path, nor should you go out of your way to grin awkwardly at someone who is different.  I’m saying that it is pretty cool if you let your eyes meet someone else’s (anyone else’sand allow yourself to smile.  And though you may think it far-fetched, it’s advocacy at its finest.

You see, when you share a smile with the differently-abled, the marginalized, those on the outskirts, it’s not really about them, it’s about the others in the room.  It’s about showing the world that it’s cool to be cool with everyone.  When you treat everyone who looks a little different with the same dignity and respect as you would that nice-looking, decently dressed human being walking toward you in the grocery store, it sends a message.

We are all humans.  Advocate for the humans by smiling kindly at the humans.  You can’t go wrong with that.

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On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

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MLK Jr.

Darkness-cannot-drive-out-darkness

Let us not forget light and love…

Light and love.

We have a duty to make things better during our time on this earth.

For better or worse, you can choose how you will fight your battles.

I choose love.

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On letting go

I shared the following exchange on my Facebook page recently. I was speaking with one of my students. All of the kids are fairly “at risk” (struggling to maintain good grades) and this particular girl has been feeling very overwhelmed and unable to catch up.  She spent awhile telling me that she felt like she just can’t learn.  And then she told me this…

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People really don’t know Down syndrome.

47 chromosomes. Low muscle tone. Ability to exceed expectations. People-first language. Sensitivity to people with different needs. Highly insulting nature of the “r” word. Some people know. Many, maybe even most, do not.

I cannot hold someone accountable for what he has never been taught.

I wrote on Friday about how it drains me to hear the “r” word. In the moment, it’s really crummy. But it’s Sunday now, and I don’t even remember who the kids were that said it. One of my dearest blog friends (who shares her amazing story here) asked me if I had any tips on how to deal with it. My approach comes down to three things:

1. Teach: Remember that people don’t “get it” and we have to teach them. The intention of a person who uses the wrong terminology (like “Down’s baby) is not usually mean-spirited.  Sometimes it is.  Still, we can very simply explain and correct.  When it comes to the “r” words, I usually say something like “hey, so that word kind of bothers me.  Could you use something different?”

2. Don’t preach: Remember that it’s highly personal for us, but not for them.  Ranting and raving doesn’t help. I realize that it should be common sense to avoid the “r” word, but it isn’t. Venting at length does nothing more than make people feel uncomfortable with me. I cannot win all the battles and I win less when I fight with anger.

3. Move on: Let it goooo, let it go! (Are you singing in your head now??) Sometimes, I have to come home and vent to John, but then I stop dwelling on it. For me, the best way to move forward is by treating it as minor in the first place. My student who thought she had Down syndrome? That situation could be handled in three ways… I could ignore it (and probably get mad when it happens again), I could be angry about it (and make her feel upset and I’d probably end up a crotchety old woman), OR, I can see it as a chance to open someone’s view of the world.

The bottom line is this: just as I wouldn’t expect the average Joe on the street to understand the complexities of my child’s needs, neither can I expect that he would understand the feelings that I carry about this beautiful child. When it comes to interacting with the world, I choose empathy. I choose compassion. I choose love. And while I cannot expect the rest of the world to make that choice, I can choose to lead by example.

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Lesson #31: There is beauty in this change

This is the last post of the 31 for 21 Blog Challenge!

This is my most important lesson.

Upon returning from my summer Study Abroad program in Ecuador during college, I did something completely uncharacteristic of me: I got a tattoo.

Evidence.  And, a new ab binder.

photo (18)

If you were to line up my brother, sister, and I, I’m fairly confident that no one would peg me as “the tattooed one.”  I still wonder, on occasion, if the tattoo that my brother got was simply an effort to not be outdone by his nerdy sister. He would never admit it, of course, but still…

(On an unrelated side note, I think that my dad was more than shocked by this.  In the weeks following The Tattoo, he wrote the word “Hola” in permanent marker on his foot in silent(ish) protest and then showed it to me every time I saw him.)

In any case, the words permanently stenciled on my left foot are a quote from the Cuban revolutionary Che Guevara. Controversial, I know. In Spanish, it says, “Let the world change you, and you can change the world.”

Never has this been more relevant to me than it is now.

When I think back to my old high school yearbooks, I remember a lot of the signatures urging “stay sweet!” or “don’t change.”  Um.  Thank God I am not the person that I was when I was 17.  Seriously.  With time comes perspective and if I could re-sign all of those yearbooks now, from the eyes of my almost-thirty-year-old-self, my message would be quite different….

Change.

Change every day.

Don’t harden your heart when you experience struggles.  Grow.  Learn.  Experience.

Change.

Listen to the stories of others.  Open your heart to what they are telling you.  Seek to understand, to support, to love.   Be compassionate, caring, empathetic, kind.  Take what they have to show you and make a difference.

That is all we can do to leave this world a better place than how we found it.

When I think about little Miss Tessa and her place in this world, my prayer is that others will seek to understand when they interact with her.  She doesn’t have to perform any great miracles or bust through any stereotypes.  But maybe, just maybe, she will teach someone how to love.  Maybe someone will connect with her in a way that will open their heart to more patience or acceptance.  Maybe her smile will make a difference on a bitter day.  Maybe including her in a classroom of typical children will be a greater lesson for her peers than can be found in any textbook.  Maybe cheering on her successes will create advocates in unexpected places.

When we allow the experiences of others become a part of our hearts, we can change the world.

Will you let her change you?

J Sync 6 5 14

 

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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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