Reflections on the R-word

Man, that's retarded.

Don't be such a retard.

That movie was retarded.

This weather is retarded.

"I highly approve of Romney's decision to be kind and gentle to the retard." (Thank you, Ann Coulter, 2012.)

"If he’s ‘the smartest guy in the room’ it must be one retarded room.” (Thanks, again, Ann, 2012.)

According to some tests, Kieran, in the past, would have been labeled as "mentally retarded." In fact, it was this label that, after we received his diagnosis, caused my heart to sink into my stomach. It was this label that, as I scoured the Internet for information on Williams syndrome in those early days, caused me to continue to read page after page, searching for something that gave me hope that this wouldn't be his label for life. 

Because I knew what came along with that label: teasing (Hey, look at that retard over there!), difficulty learning, intellectual delays -- in general, a life that wouldn't be easy.

That term, as a medical definition, has fallen out of use for precisely this reason -- the word retard is generally used in a derogatory way and those who would be labeled by it don't appreciate the association. So today, terms such as intellectual disability are used in its place.

I understand that the word retard is just that -- a word. But the reason it works as it does is because of the association it has with those who were (and are) considered "less than." Imagine the transitive property of equality (from math class) applying here:

Kieran = mentally retarded = whatever you're using that term to describe

When you say, "Man, that's so retarded," it's as if you're saying, "Man, that's so Kieran." And it doesn't seem to me that in this case you're talking about his good qualities.

The word retarded is usually used in reference to something that's dumb or stupid. But I know that Kieran isn't dumb or stupid. By now, I hope you know Kieran as an individual little boy -- a child who bears the image of His Creator and was created for His glory (Isaiah 43:7). You know he loves weed whackers, his favorite color (right now) is yellow, he enjoys singing, he likes to use the vacuum and steam mop, he's learning to read, he hugs everyone he meets, and he hates being outside (unless the temperature is in the 67-72 degrees range). He is kind, inquisitive, sensitive to the feelings of others, and likes to learn. You know that he's so much more than just the label of "mentally retarded." And the same is true for every single image-bearer who has ever been given a label like this. They are all individuals, created in the image of God, who have their own story to tell if we take the time to hear it.

And so, there's a movement that aims to "spread the word to end the word" about discontinuing the use of the R-word, and the national day of awareness this year is March 4 (today).

Now, I don't want to turn into the Politically Correct Word Police because that's not my point. It seems to me that perhaps there's a bigger picture that we're missing when we focus on just one word.

When individuals began to call out Ann Coulter on her derogatory use of the r-word in 2012, she responded with this:

"I used the word retard the same way people use idiot, cretin, moron and the rest of them which were all once technical terms and I had it with the language police."

And she's right. Words such as idiot, moron, cretin, feeble-minded, imbecile were all, at one time, used as descriptions of those thought to be mentally deficient. (In fact, mental retardation was a replacement for some of these words because they came to be used in a derogatory way, just as intellectual disability now replaces mental retardation.)

I once saw a woman respond to someone's use of the r-word with, "I can't believe he would be such a moron!" It made me pause and re-evaluate what the campaign against the r-word was really about.

And, to me, it's about more than just not using one particular word. Because there are a plethora of words we can use in its place that accomplish the same thing: short-bussing it, sped (short for special education), spaz (which references someone with a seizure disorder), and the aforementioned moron, idiot, etc.

Elsewhere Ms. Coulter said:

"Retard has been used colloquially to just mean 'loser' for 30 years."  

When we call someone retarded, moron, idiot, not only are we demeaning the ones who bore that label, but we're doing it with the intent to demean the one we're referring to. And James warns us about this:

With [our mouth] we bless our Lord and Father, and with it we curse people who are made in the likeness of God. From the same mouth come blessing and cursing. My brothers, these things ought not to be so (James 3:9-10).

In the book of Proverbs, we find that insulting someone is the same as insulting their Creator (Proverbs 14:31, 17:5).

Instead, as Christians, we are called to be champions of those with disabilities (Proverbs 31:8; Luke 14:13-14), including in the way we talk about them. And we are called to be careful with our words (Matthew 12:36) and to speak words that bring life to those who hear us (Proverbs 18:10, etc.).

If we truly -- and I'm saying this to myself because I admit to having used various of these words -- see each and every individual as an image-bearer of our kind, loving, generous, good Creator who creates everyone for His own glory and for our good, would we use words like these to describe them? It's true that we all certainly do unwise and foolish and stupid things at times as a result of our sin nature (Romans 3:23), but is there a difference between referring to someone as unwise (who goes against the commands of our Creator) and referring to them as a moron? Would we refer to their Creator as a moron? As an idiot?

The issue that, to me, transcends the use of the R-word is this: how do we view our fellow human beings? And how do we talk about -- and to -- them? Do our words -- all of our words -- honor our Creator and bring life to those who bear His image?

These are my reflections on the R-word. What are yours? 

A day at the park

Today, we met a college friend, whom I haven't seen in over a decade (except on Facebook), at a park somewhat near where my parents live. 

Kieran and Jill bonded while discussing her weedwhacker. 

It is a fun park with lots of different things to do. 

Kieran found the musical instrument section and spend some time playing on those.

And then the lawncare guys arrived to take care of the grassy areas. So, Kieran spent most of the rest of his time watching the weedwhackers and lawnmowers do their thing.

And asking random strangers if they, too, heard the lawnmowers.

Still watching . . .

 Still watching . . .

Cael managed to find another little guy to play a game of tag with for a bit, but Kieran's attention was so captured by the lawn care equipment that he only joined in their game for a brief minute before he was back to watching the guys take care of the grass.

Apart from being entranced by the lawn guys, however, Kieran has difficulty interacting with -- in a sustained play kind of way -- other children. He likes to watch kids play and will occasionally initiate a game, but he usually loses his focus on what they're doing within a few minutes and moves on to the next thing that captures his interest, or doesn't quite grasp the intricacies of what the kids are playing and can't completely play along without a lot of prompts and redirection. It's something that makes my heart hurt a bit when I watch him but since it doesn't seem to bother him, I try not to let it bother me overly much and figure it's just something that we'll keep working on.

In fact, I was encouraged when we were at the beach a few days ago and he was playing with two other little boys on the playground there. He interacted with them, off and on, in a game of tag for maybe 5-10 minutes, which was a big step for him.

It was great to catch up with Jill today and Cael was so sad to leave the park that he gave it a hug on our way out.

The Pressure Washer

I've mentioned before that individuals with Williams syndrome often have a tendency to perseverate (or focus strongly) on certain topics. For Kieran, it's mainly lawn care equipment or the like. Weed whackers are a favorite object of his and, when you first meet him, he'll more than likely ask you if you have a weed whacker, what kind it is, what color, if it's electric or gas, if it has handlebars, where you keep it, and what kind of noise it makes. Since we've been vacationing in Florida, we've had the opportunity to hear weed whackers on an almost daily basis and his usual suggestion is that we go out for a walk and look for whomever is using it. 

On Sunday, my dad got out his pressure washer so he could clean off his driveway. When he tried to turn it on, however, it didn't work for some reason. Kieran was anxiously awaiting its start up and was disappointed that it didn't work. My parents told him they'd need to find a new one. And thus began the questions: 

Where will you get it? 

We might try Lowe's.

Where is Lowe's? 

It's south of here.

How far away is it? 

About 15 minutes.

Can we get it today?

Do you want to buy it for us?

Mom, can we buy a pressure washer?

Do you have any money?

GrandBob, do you have any money? 

Well, we need to figure out what kind we want first. 

Can we go look for one? It's at Lowe's. Lowe's is south of here. Which way is south? Can we go to Lowe's and look for a pressure washer? 

Finally, after hearing the line of questioning again this afternoon after returning from work, GrandBob sat down at his computer and ordered one to be delivered to Lowe's, with Kieran's help. 

Sadly for Kieran, however, I don't think it will arrive for another few weeks, and we'll be returning home this Saturday, so he'll miss being introduced to the new pressure washer. I am now perseverating on how many times we'll hear about the pressure washer for the rest of this week . . . .

A Cape for Super Cael

Somewhere along the way, Cael began referring to himself as "Super Cael." He's had fun with it and we've had fun with his fun (see here for some of the funny Super Cael things he's said).

We had a small family party for his birthday a few days ago and his creative Aunt Ruth made him an amazing "super shirt" (as Cael calls it) and cape.



He loves it.

And wears it as much as he can, anywhere and everywhere (including to Kieran's OT appointment, where a lady saw him and remarked to her daughter, "Look, Shelbi -- a superhero!").

From picking flowers with Mommy . . .

to riding his bike . . . (don't worry -- the cape isn't long enough to get caught in any bike parts)

to picking strawberries . . . 

.
 . . to helping Daddy pump up a tire, Super Cael does it all.

Aunt Ruth also made a shirt for Kieran so he could be Weedwacker Man, but for some reason, he hasn't worn it.

And, for the crafty types, these are the close-ups of the super shirt.

I'm certainly thankful for an artistic sister-in-law who enjoys sharing her talent (check out the mural she did for the boys' room here) with her family!

X-Y-Z

Kieran's second preschool year has drawn to close. Which means he's made it through the alphabet with show-n-tell items one more time.

I scrambled looking for something that began with an X and put out a plea for help on my Facebook page. Sadly, however, we had no X-rays, x-tra cookies, xylophones, xenias, ex-lax, stuffed animals named Xavier, boXes, or weedwackers with a brand name that start with X. I briefly thought about taking my friend Roger's advice and soaking "some celery in some red food coloring and show them the xylem that absorbs the red dye. #sciencegeek" but didn't think that would go over very well with a bunch of 3 and 4 year-olds. So I hemmed and hawed, and at the last minute asked the gal who watches the boys while I get some work done for my part-time job if she had any ideas. Thankfully, Cydney had a puzzle piece in the shape of an X that also featured a xylophone that she let us borrow.

Y wasn't too difficult -- some type of yo-yo thing we've had for awhile.

And, in case you couldn't guess, Z was one of many zebras (like this one) we have in our toy boxes.

We've finished with another year of school!

Weedwackers galore

I've been posting some of Kieran's weedwacker comments on Facebook but wanted to collect them here, too, for posterity.

January 22, 2015

"What kind of weed whacker did they use?"

August 8, 2015
Playing I-Spy with Kieran in the car after an afternoon of watching helicopters take off and land, goes like this:
Kieran: I spy something that is black.
Family: Is it a helicopter?
Kieran: Yep!
....
Kieran: I spy something that is light yellow.
Family: Is it a helicopter?
Kieran: Yep!
We explain that he needs to spy something either in the car or nearby by that he can see right now.
Kieran: I spy something that is green.
Me: Is it a helicopter?
Kieran: Nope.
Me: Is it a weed wacker?
Kieran: Yep! 

June 24, 2015

Kieran's prayer: "Dear God, you are most Holy . . . Spirit. You are amazing Creator. Thank you for making weed whackers, augers, tillers, lawn mowers, and all the machines. You are so great. Good job. In Jesus's name, Amen."


January 16, 2015
Kieran, climbing up on the sofa beside me: Mom, can I talk to you?
Me: Sure, buddy, what do you want to talk about?
Kieran: Weedwhackers.
How did I not see that coming?

July 10, 2014
Seth: Hey, Kieran, what do you know about rhinoceroses?
Kieran: I know they're noisy. I don't know about rhinoceroses. But I know about weed wackers. And hedge trimmers and chainsaws.

July 1, 2014
If you've been around Kieran much, you know that coloring doesn't interest him. At all. He doesn't care about coloring pictures nicely and can't be bothered to stay in the lines. It just isn't important to him and I think his visual-spatial deficits make it somewhat difficult for him.

But, coloring is important pre-writing practice so I recently asked my talented friend Dan Lietha if he would draw some weed wacker pictures for Kieran, thinking that maybe they would hold his interest and give him some incentive to color.

I finally had the opportunity to show Dan's drawings to Kieran and this was the result. It may not be impressive to you but this was with minimal help from me (mainly just pointing out what to color next) and is a big improvement over what he usually does. I think Dan needs to start a line of lawn-equipment coloring pages, don't you? Thanks, Dan!

August 12, 2013:
The DirecTV guy came the other day for an install. Kieran asked, "Does he have a weedwacker?"
No.
"A tiller?"
No.
"An edger?"
No.
"A lawn mower?"
No.
. . . "Well, what DOES he have, then?"

July 1, 2013: While trying to get Kieran to draw and color on our white board (which he's only mildly interested in doing for short periods of time and only if said drawing involves weedwackers), Kieran said, "Oh wait, I forgot something."
What, buddy? What did you forget?
"I forgot that I need to watch weedwacker videos [on YouTube]."

May 1, 2013: Yesterday, Kieran asked his music therapist if she had a weedwacker. Later that day, when we were on the swings, he asked about our weedwackers and "Which one is best?" (He likes the "orange" one best.) Last night, Seth got out his weedwacker after he finished mowing, and guess who was standing at the window, covering his ears and crying, "I don't like weedwackers!"? Crazy kid.

April 5, 2013: Kieran, crying about something or the other, "If I watch weedwacker videos [on YouTube], I would feel better." Really, Buddy? "Yes."

January 8, 2013: On a walk around my parents' neighborhood in Florida, we passed a man sitting on a lawn chair outside his open garage. First thing out of Kieran's mouth: "Do you have a weedwacker?" At least he's consistent.

November 1, 2012: "Hush, little baby, don't say a word, momma's gonna buy you a weedwacker." ~Guess who

September 26, 2012: Kieran: I love weedwackers.
Me: What else do you love? Do you love Mommy?
Kieran: No, just weedwackers.

August 30, 2012: Me: Kieran, what do you want for breakfast?
Kieran: Some trimmers.

May 22, 2012: Kieran's latest weedwacker insertion: "Three blind mice, see how they run, they all ran after the farmer's wife, who cut off their tails with a weedwacker, three blind mice." I almost threw up in my mouth a little when he sang that. ;o)

On being "different"

Mike was a guy in the singles class I attended at a church many years ago before Seth entered the picture. He was the unofficial class greeter -- the first to shake your hand when you came in and the first to remember the name of anyone new. He worked at a greeter at a local Walmart. I was kind to Mike, but I found it difficult to really relate to him beyond the compulsory, "Hey, Mike." I expected Mike to be more like me, but since he wasn't, since he was different, I didn't know how to get to know him better.

When I first began working for one of my previous bosses, I found it difficult to relate to him. He was different from me and it felt like we were continually butting heads, for some unknown reason. And then one day, for a reason I can't remember, we sat down together and he told me his life story--about his past, where he'd come from, what his life had been like. And after that, after getting to know him, we clicked and I enjoyed working for him and with him from that time on.

I was reminded about Mike and my previous boss a few weeks ago. We took Kieran for his yearly visit to the Williams syndrome specialist last week, and I was filling out all the evaluation forms they sent before we went. Several of the questions were about his interactions with peers, so I asked his preschool teacher to share her insight. One of those questions was, "Do his peers ever think his behavior is odd or weird?" She (kindly, truthfully, and without malice) answered with the "Sometimes this is true" box.

That stung a bit.

Sure, I can look around and see that Kieran is different from other children. Most kids his age don't keep their hands over their ears because the noise level in everyday situations is too intense for them (a condition called hyperacusis). Most four-year-olds don't burst into tears at the sight of something that makes a noise they don't like (the blender, the vacuum cleaner). Most kids don't have difficulty sitting still for short periods of time or paying attention to the task at hand. Most of his peers don't have trouble tracing a line, drawing a circle, cutting along a straight line, coloring a picture, or building something out of blocks. Most kids don't have difficulty initiating and sustaining a conversation or playing games with other children. Most children don't go around giving hugs to everyone they see.

But he is Kieran. And he is different.

And here's the thing about being different: It's okay.

It's okay because God, Kieran's Creator and the Creator of each one of us, likes variety. And He fearfully and wonderfully created Kieran in His image just the way He wanted him to be.

I don't find Kieran odd or weird. I enjoy being with him, talking with him, and playing with him . . . on his terms (which often include weedwackers). I know him well (I should since I'm his mother, right?), and I know what he's like as an individual, not measured against everyone else.

I know that he's funny, likes reading books, enjoys being around people, and loves playing his harmonica. And while we're working with him to minimize some of the "differences" in areas such as conversation and fine motor skills, we also love him just the way he is.

Whether we know it or not, we expect people to be like we are, and when we find out they're not, we may label them as different, or weird, or odd. I'm fairly sure, looking back now, that Mike had Williams syndrome. His overfriendliness, good memory of faces and names, distinctive facial features, and slow shuffling walk fit the profile of a syndrome that has become part of our lives. But does it matter whether someone has a "diagnosis" or a storied past that helps explain current behavior? It shouldn't--we should be kind to everyone, receiving each as an individual created in God's image for His glory. But sometimes understanding what makes a person different from me can help me embrace those differences a bit more easily.

If you expect Kieran to act like other typically developing four-year-olds, you may find his behavior odd or different. But if you expect him to act like Kieran and take the time to get to know him as Kieran and allow him to be Kieran, I suspect you'll find that he'll bring you a great amount of joy, as he does to us.

(I feel the need to add this disclaimer, which seems silly because this blog is just for friends and family, but I do want to be clear that I'm not talking about tolerating moral differences or tossing aside the clearly delineated moral commands given in the absolute standard of God's Word in favor of accepting any type of behavior. We are teaching Kieran to be kind, to share his toys, to obey those in authority, and to follow God's Word. Nor am I advocating accepting the "all roads lead to heaven" approach (Jesus clearly said that He is the only way to heaven). So, there. Disclaimer ended.)

Four years

We had a fun time celebrating Kieran's fourth birthday a few days ago with friends and family. And we're planning on doing it again with my family in a few days.

A few things we're enjoying with the birthday boy:

• He still loves his weedwackers, but he's also added trains, tractors, excavators, and bulldozers to the list of videos he likes to watch on YouTube.
• He enjoys wandering around the yard and up into the woods with the chickens and likes swinging on his belly on the playset swing. 
• His speech has come a long way these past few months and he's continuing to work on his fine motor skills to help him write and draw better.
• He likes using scissors and enjoys the dry-erase markers and board (but doesn't seem to like coloring with crayons as much).
• He's been eating really well lately and also sleeping great at night. (Cheese puffs and croutons are on his "yes please" list.)
• It may be a sign that we swing by fast-food joints too often when he picks up one of his play phones and says, "I'd like a number one with juice and no ice." (When I order a drink, I order it without ice.)

For his birthday last year, he got a harmonica, but I wasn't very particular on when he played it and it got rather nasty over time and so we threw it away quite awhile ago. This year, we got him another one and I've been having him rinse out his mouth/brush his teeth before he plays it so that it will last a bit longer.



I'd say there's a bit of improvement over last year.

We love our Kieran and are enjoying watching him grow and develop and encouraging him along the way.

Hiding the Word

When I was two years old, according to my parents, I could recite the entire twenty-third Psalm. Encouraging us to memorize Bible verses was something they began early and continued throughout our growing-up years. We memorized verses in our Wednesday evening church club, in the Good News Club we attended during the school year, at the Christian camps we went to during the summer, in Sunday school . . . . And my mom helped us in memorizing along the way--whenever a particular passage was giving me trouble, she'd come up with a song or a chant or some type of activity to make the words easier to appropriate.

They made Scripture memorization a priority for us. It was important to my parents to get God's Word hidden in our hearts because they knew that the Holy Spirit acts on the Word of God to bring about salvation, conviction of sin, and sanctification.  (As an aside and a testament to the intergenerational faith we have, my 90+-year-old grandpa continued memorizing Scripture up until his death a few years ago--one of the last passages he was working on was John 1.)

The verses I memorized as a child have been an amazing comfort and guide in my adult life. There have been countless times when a passage has come to mind just when I needed it.

I haven't been memorizing Scripture as much as I should lately but I did want it to be part of the lives of our children from early on. So, when Kieran was diagnosed and we began to realize what "speech delays" meant, Scripture memorization took a back seat to getting him to talk in the first place.

Over the past year, however, he's been trying more words and extending his sentences to include 6+ words ("I like weedwackers and steam engines and excavators"). He's come a long way and a few months ago, I decided it was time to start getting God's Word into his heart.

I began with Proverbs 9:10a (in a translation he can understand) and we recently started working on John 3:16. I try to read a chapter from the book of Proverbs to the boys during breakfast and also go over the verses with Kieran then, too (which is why he's in his pjs in the video below).

He doesn't quite have the John verse yet, but he's getting there and it makes my heart happy. (He starts whispering toward the end for some random reason, so you'll need to turn the volume up to hear him. And Cael also wanted his presence to be known in the video.)



I don't have a particular verse-memorization-schedule that I'm following with him--I've just chosen verses that I thought were important to begin with. So tell me, how do you encourage your children to hide God's Word in their hearts? Do you follow a certain "schedule"? I'm interested in your thoughts and helpful hints.

More from the weedwacking front

After the accounts of Kieran's weedwacker obsession and aversion to horses, my talented friend, Dan Lietha (who also has a blog), put together this picture for me to show Kieran, suggesting that perhaps it may encourage an affection for horses in him.

When he saw the picture, Kieran said, "Take it out." Apparently horses aren't allowed to have weedwackers.

And the other day, when I flipped on the TV, an infomercial on an exciting, new weedwacker just happened to be on.

 It kept him enthralled for its entire duration.

He surely does love weedwackers.

Furthering the obsession

The other day, we were playing with Lego-style building blocks, and I decided to further Kieran's interest in weedwackers (which he had talked about all day) by making something akin to a weedwacker for him to play with (until it fell apart, repeatedly).



He enjoyed it. A lot. (Note that I've never claimed to be artistic. I was actually quite proud of myself that it turned out looking like something in the neighborhood of a weedwacker. (And yes, Cael is playing with an empty box. Digging items out of the recycling bag is his idea of a good time.))

But then, my paltry attempt at a weed-wacking device was surpassed by something far, far better(there's probably a spiritual analogy in there somewhere, but I'm not going for it at the moment).

Kieran's Aunt Katy and Uncle Dan had ordered a play John Deere weedwacker for him (after reading the previous post on weedwackers) and it arrived later that afternoon.

He was beyond thrilled. And he couldn't wait to show his daddy when he got home from work.



He's been weedwacking my plants ever since.

(The play weedwacker actually makes a noise if you pull the string and push the button, but he doesn't like the noise it makes, so he continues to make his own weedwacker sounds as he mows down the houseplants.)

Kieran sends his most profuse thanks to Aunt Katy and Uncle Dan!

Weedwackers

One of the characteristics of those with Williams syndrome is a tendency to perseverate on a topic. So I'm not sure if Kieran's current obsession with weedwackers is a byproduct of WS or if it's just him being a little boy with an avid interest in a certain item.

Whichever it is, weedwackers have become the thing he thinks about morning, noon, and night. For example, can you spot the weedwacker in the picture below?

He did. Immediately. As we were reading A is for Adam the other day, we came to this picture, and he said, "Look, a weedwacker." And we couldn't read any further because he needed to analyze the "weedwacker" Adam was holding. I didn't really have the heart to explain to him that what Adam used was not really the equivalent of the Husqvarna his daddy uses.

And, can you see the "weedwacker" in this picture?

He did. Actually, he vacillates between calling it a weedwacker and a vacuum. But weedwacker usually wins.

Weedwackers have also started showing up in the songs we sing. The other day, as Cael and I were singing Old Macdonald had a ___, Kieran chimed in with weedwacker . . . with a zzzzzz here [he does a pretty good imitation of a weedwacker sound] and a zzzzzzz there. 

And weedwackers are also on the bus -- The weedwackers on the bus go zzzz, zzz, zzz.

I believe they were also in the Mother's Day song Seth tried to get him to sing on Sunday, Happy weedwacker to you, happy weedwacker to you, happy weedwacker, dear weedwacker, happy weedwacker to you.

As we were playing with Mat Man from Handwriting Without Tears, instead of making Mat Man, he wanted to make a weedwacker with the pieces.

And today, when I was listing the things I needed to get from the store, "Milk . . . bread . . .", he added, "Weedwacker."


The irony in all of this is that when he sees an actual weedwacker being used, he covers his ears and freaks out a bit. I guess it's more of a love-hate relationship.

So, what say you -- perseveration or just a boy being a boy?