self-calm

**

I scanned Brooke’s home-school communication log before sitting down to dinner. Every night, I search the day’s entry for an interesting morsel that I can use to ask her about her day. If there’s been an event of some kind – something outside of her typical schedule – it’s all the better to try to start a conversation.

I honed in on Ms K’s description of the All-School Assembly, excited by the possibility of something that Brooke would remember and hopefully be able to talk about.

“First 1/2 (15 mins) listened and applauded appropriately. Talked about ‘New Year’s Resolutions”. Got a little long – we took a short break + returned + then left at end before masses – then joined class again in hall. Good work self-calm.”

I should have known, of course. We’ve been at this long enough, haven’t we? And the words were right there.

Good work self-calm.

That’s code for needed to self-calm after something happened to make self not remotely calm.

But I was reading too fast to let it register. All I saw was what I was supposed to see.

“Hey, Brooke,” I asked, “Did you have All-school Meeting today?”

She was staring down at a thread between her fingers.

“Brooke, sweetie, did you have an All-School Meeting today?”

‘I did,” she answered.

“Did you take a break with Ms K?”

“I did.”

“Did you leave a little early?”

“I did.”

My next question was to have been about the performers at the meeting – the part of the conversation that I hoped might yield a little more than a two-word response from Brooke – but I never got to ask it.

Instead, Katie jumped in. Her tone was casual as she added, “Yeah, Ms K had to take her out cause she was yelling and crying.”

Ouch.

I tried to keep my face neutral as I turned back to Brooke.

“Sweetheart, did you have some trouble at the meeting?”

She twisted the loose thread in her fingers.

“Sweetheart is my nickname.”

“Yes, love, it is. So was the meeting a little too loud today?”

“It was.”

She winced at the memory and pulled her shoulder to her ear.

I decided not to push it further. I excused myself from the table and went back to the counter to look at the communication log.

It was right there in black and white.

Good job self-calm.

Damn it.

I walked back to the table with the words still taunting me. C’mon, kid. You’ve been at this long enough. You know the code. You know how to read between the sanitized lines – to find the parcels of unvarnished reality prettily wrapped inside encouraging phrases and glowing praise.

As I sat down, I told Brooke that I had heard that she’d done a great job calming herself down and joining the class after the assembly. I told her that I was very proud of her for that and that I knew that those meetings were not easy for her.

Katie munched her dinner without giving any of it a second thought.

Brooke withdrew into a litany of Godspell questions – “What did Mary Magdalene say in the junkyard? What would happen if Jesus and his Mom cut onions? Is there a Jesus and Matthew movie?” – as Katie launched headlong into a monologue about her day. I alternated answering Brooke’s questions - “Let me outa here!” “They would cry” and “No, there is no Jesus and Matthew movie”- and commenting on Katie’s colorful retelling of her day.

Luau caught my eye. He smiled and offered up a nearly imperceptible shrug as he said, “It’s OK.”

I let out the breath that I hadn’t realized I’d been holding. I reached out for both of my girls. I kissed the top of Brooke’ s head and cupped my hand over Katie’s. Both of them continued to chatter on her own plane. I sat back in my chair and watched my family settle into its natural state.

I took a deep breath – breathing in our normal. I gave a tired smile back to my  husband and did my best to self-calm.

 

anything

Katie and I were face to face on the toboggan. She had hatched a plan to go down the hill backwards in order to avoid getting snow in her face. “Remember, Mama,” she shouted over the wind, “You’ve got to steer!”

I laughed, knowing full-well that this plan was likely doomed for some sort of spectacular failure. But I promised to do my best.

We shuffled our way over the hump of the hill and began to gain speed. I squeezed my legs around her as we hit the downhill. Almost immediately I fumbled the rope and lost any hope of controlling our direction. We listed to the left as we veered dramatically off course, screeching to a stop far from our intended destination.

Her face was completely covered in snow. Not an inch of skin had escaped. Her eyelashes were coated with ice and tiny droplets of water dripped from her nose. She looked like the abominable snowman.

With one eyebrow raised in mock accusation, she pointed to her face. “This,” she said, “is on YOUR conscience.”

I laughed so hard I fell off of the sled and landed in the snow.

Her little sister, however, wasn’t laughing. She was, in fact crying. Although she typically loves sledding, it simply wasn’t working for her that day. After two runs down the hill, she’d decided that she was done. Luau convinced her to stay for a while. They had a few great ‘runs’ down a snowbank, but soon her tolerance had been stretched beyond capacity. She could say nothing other than, “I want to go home.”

Since Katie and Luau would have the sleds to lug home, we left them the car. Besides, I thought the walk might be nice. I took Brooke’s hand and we set out toward home.

As quiet and undemanding as the walk was, my girl just couldn’t manage to calm herself down. She needed the comfort of home and nothing else would do. I tried every trick I had, but the tears wouldn’t stop.

I talked quietly as we walked.

I showed her a house that I’ve always liked. I told her that I thought it looked welcoming. I talked about the dogs that were barking at one another through their respective fences and wondered aloud what they might be saying to each other.

I told her that Mama wished I could make things better. I told her that that’s what Mama’s do – when our babies are upset we try to make it better. I told her it’s hard sometimes when Mama doesn’t know how.

I hesitated. The question was there. Hanging in the cold, damp air. It was there.

The icy snow crunched beneath our feet. Her breath was slowing. She was beginning to calm down.

“Hey, Brooke?” I asked.

“Yeah?”

I kissed the top of her head lightly, hesitating.

“Do you think you might want to be a Mama someday?”

As soon as the words came out, they made me dizzy. Should I not have asked? Should I have asked? COULD my girl be a mother someday? Would she ever WANT to be? Is it an absurd question? Of course it is; she’s not quite eight years old. But when I was eight, I knew. When Katie was three she would talk about being a Mama when she grew up. Three. That’s what little girls do, right? Little girls talk of such things. Was it wrong to ask? I had no idea.

“Yeah,” she said to the snow.

“Hmm, would you like to have a girl, do you think, or a boy?”

That one was easy. “A girl.”

“What would you want to name your girl?”

She didn’t hesitate. “Clara.”

I asked if she thought she’d have a job when she grew up.

“I would be a teacher,” she said.

Oh, baby girl, I thought. You already are.

I told her that I thought she’d be a wonderful teacher. The best, in fact.

“And I would be a doctor.”

“Wow, so you’re going to be a teacher AND a doctor? And a Mama too?”

“Yeah.”

We had to walk single-file as the path narrowed. I held her hand over her head.

“Maybe you could be a doctor who teaches other people how to be doctors. Would you like to do that, ya think?”

We went back to walking side-by-side as the path widened again. We got stuck briefly at the edge of a snowbank. I lifted her up and over, then pointed her back toward home as she began walking in the wrong direction.

“Yeah.”

I remembered the conversation from my childhood when I’d told my dad that I’d wanted to be a nurse. He asked why not a doctor. OK, I’d said, I’ll be a doctor. Then why not a hospital administrator. OK, I’d said. Then why not open a chain of hospitals? If you want to help people, Jessie, help a LOT of people. Bigger, my dad taught me. Always think bigger.

I looked at my girl. Her face was streaked with tears, but she was finally calm.

“Sweet girl,” I said, “if you want to be a doctor who teaches, you will be a great doctor who teaches. And a wonderful mom. There’s nothing you can’t do, OK? Nothing.”

It took all the restraint I had to sound calm. I wanted to yell.

Do you hear me, Universe? My girl can do ANYTHING that she wants to do. Do you understand? ANYTHING. I need to believe that. And by God, she DESERVES to believe that. There is NOTHING she can’t do. NOTHING. It may not be easy. Nothing for this child ever is. But damn it, she can do whatever she wants to do. Do you hear me? Don’t you ever tell her that she can’t.

We headed into the house and peeled off the morning’s frustrations layer by heavy, wet layer.

She settled onto the couch, watching the same episode of Elmo’s World for the third time that morning. As I fussed in the kitchen, she yelled to me, “Mom, come quick! I need you!”

I ran in like a shot, wondering what had happened.

When I got close enough, she reached up, hooked an arm behind my neck and pulled me down onto the couch. She crawled up and over my legs and curled into a ball on my lap. I folded my body over hers and rested my cheek on her back.

I once wrote that I love my girl with a ferocity and a tenderness that can only co-exist within a mother’s heart. And so it was as I whispered, “I love you so much, baby” into her ear and finally let my own tears flow.

brooke order

I’ve been reminded an awful lot lately that autism is a developmental disorder. Yes, we all know that, but we know it as one blurry word, don’t we? Autismisadevelopmentaldisorder.

Sometimes we miss the most important part.

Autism is a developmental DIS-order. Development happens IN A DIFFERENT WAY than the typical order of business.

‘A’ does not necessarily lead to ‘B’. Sometimes, ‘A’ leads to ‘F’, then back through ‘C’ and ‘D’ long before ‘B’ shows up. Sometimes ‘B’ doesn’t show up at all, but ‘R’ does and turns out to be a doozy.

Our kids development is not delayed. It is disordered – differently ordered.

For me, this has been a HUGELY important distinction. I think we lose a lot waiting for our children to ‘catch up’ to their peers. One can’t catch up to someone who is walking on  a different road. It simply doesn’t work that way.

But God, our kids DO change and grow and learn and develop, don’t they? IN THEIR OWN WAY, IN THEIR OWN TIME, WHEN THEY ARE READY.

The following is from a post I’d written in August of 2009. It says it all. Which is good, because I’m out of time.

***

I walked around Brooke’s room tidying things up for bed. The musical instruments had quieted their songs for the night and were put back in their wooden crate one by one. The books promised to keep their stories to themselves and settled into their places side by side on the shelf. The room was bathed in the soft light of the bed-side lamp. All was quiet, but for the freshly scrubbed little girl chattering away on the bed.

“OK, friends,” said Pablo the blue penguin, “You would all line up for picture time.”

Slender little hands deftly moved the ‘friends’ into place. They lined up along the pillow and presumably smiled.

“OK now. You would all say, ‘Cheese’!”

She stretched Pablo’s little arm as far as she could up to his face. “Say ‘Cheese’!”

With a “Click!” the picture was taken.

“Good job, friends,” said Pablo. “You said Cheese!”

I tried to wrangle the Backyardigan friends for bed, but she wasn’t having it. “Oh, no. They would stay with me,” I was told in no uncertain terms. I settled onto my knees next to the bed as if in prayer and watched.

Uniqua was the first to go. She slid down the pillow with a “Wheee!” followed by an, “Uh oh! I bumped my head. It hurts me very much!” Her voice was deep, even slightly raspy, just like on TV.

Tyrone came quickly to the rescue, air-lifted into the scene by a tiny arm. “Oh no. Uniqua, are you OK?” A deeper voice, appropriately boyish. He leaned in to check on his friend.

“I am not OK,” replied Uniqua. “I bumped my head and it hurts me very much.”

“Oh no! I will give you a hug, Uniqua,” said a very concerned Tyrone.

Once they were securely intertwined, they were set aside – apparently to hug it out.

Tasha sprung into action from her place at the top of the pillow. She flew down with a flourish and a twist. “Ow!” she cried out. “I bumped my knee and it’s ba-leeeeding!”

Pablo swooped in. “Do you want me to take the blood out?” he asked.

“Yes, please,” she answered politely. Gotta love Tasha.

A pretend band-aid and a hug sent them on their way.

I don’t know how to describe everything going through my head or my heart while I watched this scene unfold.

“She came to us with absolutely no functional play skills.”

Her integrated preschool teacher. She had marveled at the fact that she did not know how to play AT ALL.

Those words haunted me for years. It seems they still do. I remember wondering .. Don’t children just play? Is playing a skill? Is it something you learn? I was flabbergasted. For the millionth time that year, I felt like I had dramatically failed my child when I heard those words. How could I have not noticed that she didn’t know how to play?

But damn it all, here was my kid playing. And playing BIG. This was elaborate, dramatic, pretend play. Characters interacting with one another as part of a grand scene. Voices! Different, distinct, appropriate voices for each character! A sentence ran through my head.

She’s catching up!

Followed by another one.

“This is a disorder, Jess. Not a delay.”

And another.

“Her development will not ‘catch up’, per se; it will simply happen in a different order.”

The first specialist we ever saw. The speech therapist who directed us to the autism clinic - Do not pass Go, she had said. Do not collect $200. Just get help. The one who spent twenty minutes with our baby and knew. Just knew. And she was right about so many things. Not a delay; a disorder. A different order.

I’ve come to dislike disorder. I prefer Brooke-order. She shows us time and again that she will come to it, whatever ‘it’ is when she is good and ready. I guess our humble job is simply to make sure she’s armed and ready when that time comes.

Apparently she can take it from there.

Ed note: There was a great conversation in the comments on that post. I’ve copied it in part in the comment section below.

What I would do with a billion dollars

 

**

OOPS!

Please find this post on Katie’s blog ~

A Diary of a Katie

Thanks!

questions

 

I have no time to write.

None.

Zero.

Zip.

But I am too excited to keep this to myself, so in ten five minutes or less, here it is.

My baby has started asking questions.

Real, honest to God questions.

Questions that are borne not of need, but of curiosity.

Questions that serve no other purpose than to help her gain information, make sense of her world and LEARN THROUGH SOCIAL INTERACTION.

Questions like, “What does that mean?” when she hears a word in a song that she doesn’t understand.

Questions like, “Who are you talking to?” when one of us is on the phone.

Questions like, “Where are we going?” when we get into the car.

Questions like, “Who is the person singing?” when she hears a song that she likes on the radio.

Yes, my baby has started asking questions.

Questions that I will never, ever take for granted.

Questions that were conspicuously, heart-breakingly absent for all those years.

Questions that I prayed she’d be able to ask someday.

Questions that are the product of so very much hard work.

Questions that will allow her to move forward in quantum leaps.

Questions that she show us that she already has.

Yes, my baby is asking questions.

How bout them apples?

**

ed note: Got something to brag about – or in need a shot of hope to start your day? Click over to the Community Brag Page and check out the amazing things our community’s children have accomplished. And then tell us what YOUR kid is doing!

 

scored

*

I was desperate to find something for my friend. I knew that nothing material could possibly ease the pain that the past few weeks (or months or years) have wrought, but I needed to DO something.

I tried to bring her supplies when she was stuck in the house during the storm. She refused. I tried to arrange for plowing or shoveling as the snow came down, but she demurred. I tried to steal her away for a few hours the other night, but her husband had not yet returned from his business trip thanks to the tangled flights across the country. For the life of me, I couldn’t figure out what to DO.

I needed to find a way to say I love you. I needed to say, I’m here. I needed to leave her with a tangible reminder that she’s not alone.

I had twenty-five minutes to find it – this token of support and love. Such is my life. I don’t have the luxury of time, so if it was going to happen, it was going to have to happen quickly.

I scoured the shops along our town’s main street, looking for inspiration. A candle perhaps? A gift certificate for a manicure?

I wandered into the day spa, looking for something pampering – a reminder to be gentle to herself, to take care of HER – but nothing struck my fancy. I walked out. It just didn’t feel right.

I walked by countless storefronts before being drawn into a particular jewelry shop. I’d only been in once before, but somehow I knew that this would be the place.

I immediately found a necklace that I thought she’d like. I never would have chosen it for myself as it was far more her style than mine. It was a chunky pendant hanging from an oxidized silver chain. The pendant was essentially a cage – heavy bars of silver surrounding a gorgeous translucent pale-blue stone. I grabbed it, thinking perhaps my search would be over.

I rolled it in my fingers, watching the bars swirl around the stone – guarding it, keeping it safe. I liked that. It’s her heart, I th0ught. The bars will keep it safe.

As soon as the thought was complete, I dropped the necklace back onto its display. No, I thought. Emphatically no. The last thing I want to tell her is to wall her heart away behind metal bars. That’s not what this is about. Walling ourselves off is a journey to nowhere. Bars might keep pain out, but so too they keep EVERYTHING out. So goes joy and pride and love. No, the necklace wouldn’t do.

In the next case I found another necklace. This one had a small pendant engraved with a single, simple word. “HOPE.”

I picked it up and set it in my hand. I turned it over, then over again, thinking.

Hope. Yes, perhaps this was the one. She needs to be reminded that there is – that there ALWAYS is – hope. That even in our darkest hours, it is hope that allows the light to return. Hope ensures that it WILL return. I loved it, but something was missing. I didn’t know what, but it just wasn’t right.

My friend had just suffered a devastating loss. I needed to acknowledge that pain. Simply telling her that it would get better wasn’t enough. I needed her to know that it was OK to hurt. To feel it. And to move on when SHE was ready to move on. Somehow HOPE felt selfish, pushy. She might not be there yet.

And then I found it. It was sitting on the shelf right below HOPE, which made perfect sense. It was a small silver pendant on a delicate chain. The pendant was nothing but a simple, hand-wrought circle – not quite perfectly round. The face of the circle had been scored. Whatever had been dragged across its surface had left behind deep, criss-crossing scratches. The grooves were inconsistent, both in length and depth. They were at once chaotic and calming.

I held the circle to the light and watched it glisten. It was solid yet delicate, smooth yet scored. It was stunning. And in that moment, I knew I had it.

The very heart of the pendant’s beauty was in its painful history. It was the grooves and scratches that caught the light. Had it been perfectly smooth – or perfectly round – it wouldn’t have been what it was. It would have lacked depth and character and singularity. It would have been without its very essence – its beauty and it’s strength.

Just like my dear friend.

Just like each and every one of us.

Beautiful not despite but BECAUSE of our imperfections. And always – always – far stronger than we appear.

i swear

 

**

Katie and I are alone in the car, returning from a marathon session of errand running. Yeah, good times.

“Mama?” she asks, “Do you think I could start swearing a little? You know, like just the light ones, maybe?”

I smirk, remembering a friend relaying an almost identical conversation she’d had with her daughter a couple of years ago.

“What do you mean, honey?”

“Well, I’m nine and three-quarters after all – almost TEN.” She says TEN with all the gravity she can muster. “So I was thinking maybe I could say like ‘hell’ or ‘damn’ once in a while now, ya know?”

I chew on the idea for a moment and then tell her that I’d be OK with her trying them on for size when it’s just the two of us alone in the car. I tell her that they cannot be used outside of our home and NEVER in front of her sister.

She seems satisfied.

I get a little carried away patting myself on the back for my cool yet still authoritative parenting solution. Those moments don’t happen often, after all. But my reveling is cut short.

“What about ‘crap’?”

I tighten my grip on the wheel as I say, “Excuse me?”

“Can I say ‘crap’?”

I think for a minute, do a gut check and tell her unequivocally that I am NOT comfortable with my nine year-old (or my nine and three-quarter year-old or even my almost TEN year-old) using the word crap. In any setting. Period.

She looks at me thoughtfully. I assume that she’s formulating her counter-argument, gathering her thoughts before trying to persuade me that I’m wrong.

Apparently not.

“So I guess ‘shit’ is out of the question then, huh?”

the dream – on hopeful parents

.

 

.

 

I’m at Hopeful Parents today, reflecting on Dr King’s legacy and what it means to our children.

Please click on over. And leave a comment there, if you’re so inclined. I love hearing from you.

Oh, and wander around the site a little while you’re there, won’t you? There are some wonderful writers who you’ll love getting to know. I’m just going to grab my coffee and then I’ll meet you there.

-> CLICK HERE <-

What are you still doing here?

Go!

 

autism aware

**

Ed note: Thank you all so much for your wonderful comments on yesterday’s post. (Except for the one who felt the need to write ‘This retarded.” in response to a post about how hurtful the word can be to our children, written in large part by a nine-year old. Classy, my friend, classy.)

But to those who have made the effort to remove the ‘R’ word from your own lexicons, and even more to those who have then spread the word to others, I am grateful. To those who posted a link to the blog or who started a conversation with a friend yesterday, to those who might have been inspired and empowered to speak up the next time you hear the word, thank you.

I hope to readdress the thread that began on diary’s Facebook page yesterday about HOW we approach people who might be unwittingly offending or hurting those we hold dear.

How do we shoulder our bats when we want to come out swinging? How do we move past anger and defensiveness to interact with one another thoughtfully, respectfully? How do we dig deep enough to find the place where compassion dwells? How can we find common ground with those who feel so far removed from our experience?

Timely questions, I think as I believe they are poignantly and profoundly relevant right now – not just to us as individuals, but to us as a community, a nation and as citizens of the world.

How do we change the tenor of our discourse?

I will return to offer my own answers to those questions.

But in the meantime, I could use a little light and funny, and I’m guessing I’m not alone. So I give you the story of Becky and a little girl who, despite frequent evidence to the contrary, is ALWAYS listening …

**

The other night on the way home from work, I stopped into Whole Foods to pick up a couple of items that we needed. I was hoping it would be a surgical strike – in and out with the stealth and speed of a cat burglar. But you know, one who pays instead of steals stuff. Or like those Special Ops guys. But one who doesn’t kill anyone, cause that’s just so not me. Oh, whatever – I wanted to be quick.

As I turned my cart into the produce aisle, I nearly bumped into the family of a little girl in Brooke’s class. “Becky” is the cutest darn thing you’ve ever seen. Like Brooke, Becky is on the autism spectrum. Although they have EXTREMELY different personalities and their individual brands of autism manifest themselves in very different ways, they share many of the same overarching challenges.

They each have their own dedicated aide in school, so there’s a practical ease that comes from placing them in the same class. They have been together in this arrangement since preschool. Over the years, we have joked with her parents that they will have to choose a college together.

Becky is a walking, talking, laughing bundle of love. She is energetic and bright and simply explodes with joy.

Every morning last summer when I brought Brooke to camp, Becky would come running up to me at full speed and yell, “Good morning, Brooke’s Mom, I mean Mrs [Diary]!!” She’d come careening into me and land square in my gut, in a delicious cross between a body-slam and a hug. She’d then step back looking very serious and ask, “Where’s Brooke’s Dad?”

I couldn’t have thought of a better way to start those days.

As I greeted her mom and dad at the market, Becky stood up from the inside of her mom’s cart. Her face lit up with recognition the moment she saw me. As tired as I was at the end of a long day, her smile filled me with energy.

“Hello, Brooke’s M ..!” she yelled before stopping short at the ‘M’. “Hello, Mr Diary!” she yelled again. “I mean, hello, Mrs Diary!” She looked very pleased with herself for getting it right.

I looked down into the cart. “Well, hello, Miss Becky! That was a great job fixing those words! You fixed that TWICE and got it EXACTLY right!”

She beamed up at me.

“Mrs Diary? Where’s Brooke?” she asked.

I told her that Brooke was with her daddy and that I was going to meet them as soon as I was done shopping.

“Mrs Diary? Where’s Katie?” she asked.

I explained that Katie was with Brooke and Luau.

“Mrs Diary, Where’s MISTER Diary?”

I told her that he was at home and that I was on my way to see him.

Becky’s parents stood by as we talked some more. She told me her address and asked me mine. She laughed at the name of our street and yelled it in a sing-song. I teasingly shushed her, telling her we’d better not shout it out or people might think we were having a party.

She cracked up. “A party!!” Laughing so hard she had to clutch her belly she added, “I had a party once!! It was a birthday party and it was fun! Do you remember that, Brooke’s Mom?” The words were spilling out in classic Becky rapid fire.

I finally managed to say good-bye and complete my shopping run. As I turned the corner, I could still hear Becky’s happy sing-song.

When I got home, I found Brooke in the playroom, cutting pictures out of a coloring book. I sat down next to her and watched her for a while, enjoying the easy silence.

“Hey, Brooke,” I said finally, “guess who I saw at the market?”

She didn’t look up.

“Who?”

“I saw your friend Becky!”

As she worked her little scissors around the page she said, “You did?”

“I did!”

Without looking up from her page, she responded with four words. Four words that showed unequivocally that she was paying attention, and that she knew her classmate well.

“She talks .. A LOT.”

that’s retarded

But for our part, we are trying to awaken the world to the need for a new civil rights movement — of the heart. ~ Timothy Shriver

*

Ed note: Yes, I did actually write the following note to my colleague. Yes, I actually asked him to lean over and read it on my computer screen. Yes, I really am that much of a wimp and yes, it was a little bit odd.

But, as you’ll see if you choose to continue reading even after this somewhat bizarre introduction, I decided that I owed it to my girls – BOTH of my girls – to say something. And twenty-four hours later, I can tell you that I’m very glad I did.

Dear [colleague at my new job who sits right next to me and who has thus far proven himself by both reputation and deed to be a man of integrity, professionalism and compassion, but who I really don't know all that well after only six weeks],

OK, so despite the fact that you are approximately six inches from me, I’m wimping out and writing this instead of saying it because, well, I’m a wimp and I find this much easier.

I’d like to ask you a favor.

Earlier today you used the word ‘retarded’. It’s an easy go-to and one that I used casually for many years. But that changed four years ago when I had to register my daughter with the [State] Department of Mental Retardation (which thank God has since changed their name). The point was then driven home for me yet agin when she started at an integrated preschool and two of the most wonderful kids in her class had Down syndrome.

The thing is, I know that by absolutely no stretch of the imagination did you mean it maliciously, nor would you ever use it that way. Please know that I don’t mean to imply otherwise. But I have found that allowing the word to be an easily accessible part of our lexicon makes it easy for others to appropriate and misuse it.

Now here’s the thing. I likely wouldn’t have said anything but for this – my older daughter, [Katie] wrote the following just yesterday and I felt a responsibility to her to say something. I’m hoping that after you read it you’ll understand why I did. I sincerely hope this comes off the right way.

I truly appreciate your understanding.

**

The Saddest Word of All

by Katie, age 9

You know how Brooke says there are “sad words” right? Well, I think there really are some really, really sad words that I don’t think anybody should ever say. I mean, I know there are all the swears and grown-ups say them sometimes, but I’m not really talking about those. I’m talking about words that I don’t even think grown-ups should say either. OK, to the story.

I was at school the other day, packing up my bag to go home. There were two other people down at the lockers at that moment. There names were – well, I can’t say their real names, so I’ll make some up. Let’s go with, hmmm, Oliver and Billy. Well, they were talking about a boy (who we’ll call Zander, even though that’s not really his name) and I really didn’t like the way they were talking about him. They were saying really kind of mean things.

It’s true, Zander is not my favorite kid. He’s always trying to scare people even when they’re trying to be nice to him. But he IS a real person and he has feelings too. So even if he does things they don’t like, they wouldn’t be saying those things if he were standing there, so they really shouldn’t say it ever.

As I was packing, Oliver said something that made me REEEEEEEALLY angry. In his exact words, he said, “He must be retarded.”

I turned my head to him so fast that my hair hit my face really hard. But I didn’t care. I was so mad I had to say something. So I said, “You don’t say that word. If you’re going to say it again, I might have to tell Ms. C.”

And you know what he said back? He said, “Who cares? What’s so bad about saying retarded?”

That REALLY boiled me over. We had had lectures about this EXACT topic at LEAST twice this year. The principal, yes the PRINCIPAL, had talked about it over the intercom. Ms S, our school counselor had come into our classroom and talked about this whole thing. Ms C had also talked about this several times. So you see why I was mad. How could ANYBODY not know at this point?

But I didn’t know what to say so I went back to my locker and kept packing. That word ‘retarded’ stayed in my stomach all week. And it hurt. I always think of Brooke when people say that. Not in a bad way, in kind of a hurt way. My next door neighbor, “Natasha” had once come over to my house and we were all playing outside. My sister asked if she could play with us. It was kind of in a Brooke way, like “I would please play with you.” You know what Natasha said? She said, “No, she’s too dumb to play with us.” And when she told my sister that she couldn’t play, it hurt very badly.

At that time it might have been a little different because my sister couldn’t hear her or probably understand. But now that people are saying it IN SCHOOL and Brooke goes to the same school as me, I get a little nervous and scared that she’s going to come home one day and say, “What’s retarded?” because somebody called her that.

So you get the point, right? Why I’m really extra mad at Oliver (and still kinda mad at Natasha, even though she doesn’t do it anymore).

I really hope people don’t use that word about anybody. I just want the world to be a better place and I think it would be better WITHOUT that word in it.

Katie’s post can be found in its entirety at www.diaryofakatie.wordpress.com

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Even before reading Katie’s post, he apologized profusely, which I assured him was not at all necessary. After he read it, he apologized some more. I told him yet again not to worry; my point was not to make him feel badly in any way. He then said, “I can’t promise I’ll never say it again. It’s pretty well engrained in my speech. But I swear I will try.”

I told him that was all I could ever ask, and I told him how grateful I was that he understood why I’d felt compelled to start the conversation.

I called Katie on my way home from work. I told her the story. I told her that I never would have had the courage to say something had it not been for HER courage. I told her how proud I was of her for forging the path, for making the people around her – including her mama – better people. I told her the ripples of the stone she’d thrown into the water would go far.

And as I hung up the phone, I quietly thanked God for the incredible teachers in my life  and the endless, life-changing ripples they leave behind.

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Spread the Word to End the Word

The bigotry behind the word ‘retard’ by Timothy Shriver

Words Matter – or – They’re Both Fish