i’m baaaaaaaack (from ack)

Hey there, beautiful you. I missed you.

I’m not just saying that. It was odd to be away. I’ve grown accustomed to our little world here. Our visits are important to me.

It’s good to be home. Incidentally, I think I may have a somewhat unnatural attachment to my own pillow. 

But if you’d like, we can step back to the beginning of last week. You’ll need a sweater. Go grab one. I’ll wait. The ferry over to Nantucket gets a little chilly.

***

 

Sunday Part One

I’m on Nantucket, squeezing the last few drops out of the New England summer

Somewhat guiltily enjoying a brief escape from the chaos and anxiety of the impending school year

I have no connection to the internet – to my outlet – to the cyber release of Blogland

Maybe not a bad thing for a week, but an adjustment

I feel a little lost without it

Posts start to write themselves in my head

I find that I don’t stop writing just because I can’t write

My brain begins to run out of room

Like a computer low on storage space

The words stack up in layers

Like sweaters in the attic

Colorful, chaotic towers – listing – threatening to fall onto each other like dominoes

I think of the term blogjam and make myself laugh

***

Kendall loves the beach

The water

Salty and heavy and thick

The sand

Warm and gritty

She lays down in the sand every chance she gets, extending her arms and legs

Making angels of a sort

The mud

Soft and wet and dense

Clumpy on her hands

Her legs, her shoulders

Everything has its own wildly different consistency

She loves the variety of textures

Rubs them into her skin

She runs through the dry sea grass

She shimmies into the middle of it and lets it scratch her skin

Like a cat

She spends most of the day in a running conversation with the beach

The people are incidental

She is aloof

Brief interactions with us are woven into the day

Each one delicious

Like the fudge from the candy shop on the wharf

So sweet it almost hurts

She hugs me tightly, forcefully, completely

I hug her back desperately

She runs away

Never in one place for too long

We laugh loudly

Only the ocean hears us

She runs back to me

Knocking me onto my back in the sand

“I knocked-ed you over!”

She lays on top of me

I hold my head up at first, conscious of the wet sand in my hair

Then I give in

I let my body go slack and revel in the sweetest hug this side of the Mississippi

I sit up so she can take another run at me

I scoop the wet sand of the sand bar into my hand

It cracks in perfect layers

We call them potato chips and she feeds them to crabs we can’t see

A game of pretend

Again and again

She digs her own tiny hand into the sand

And makes smaller chips

Her little chest puffs out with pride

She did it herself

We go on this way

Making chips, feeding crabs, feeling proud

And then I lose the thread

She’s sitting next to me

But she’s gone

I don’t know how to get her back

I try to make her laugh

She smiles mildly into the middle distance

She runs her fingers through the water looking for the small, transparent jellyfish that she slides from one hand to the other

She can’t find them

They are as elusive as her attention

I’m no longer in

She has shut me out

So I watch her

Longingly

But I’m smiling

Because she’s happy

She squeals loudly and talks to her hands

The wind takes her words before I can hear them

They aren’t meant for me anyway

But still I try to listen

I feel like I’m eavesdropping on a private conversation

I look for chances to jump in

She doesn’t offer any

She’s happy

I make the decision to remember that

To fight for it

To be ok with it

To believe that her nature need not be mine

At least to try

***

 

until next week (maybe)

 

I knew this time of year would overwhelm me. Back to school, back to fall, back to the wall. Kindergarten, second grade, the Special Ed Parents Advisory Council, PTO liaising (yeah, liaising, whatever), the meetings, the welcome speeches, the welcome picnics, the ice cream socials, the frantic shopping for that one last thing I forgot (at least four times), the social stories, the new teachers, the new classrooms, the new friends, the new aide, the new visibility, the new uncertainty, the new angst. Oh the angst. My dear friend angst with her spiffy new elementary school make over.

Did I ever tell you that I start planning for Halloween in August?  Yup, August. Every year since Darby was born I have started trolling for costume ideas before the start of school. No, I’m not that hyper-organized, scary efficient mom. Not even a little. I know that mom and she scares the cr@p out of me. No, I’m the mom who knows her limitations. I’m the mom who knows full well that she will be a melting puddle of useless unstuffed Mama-ness if she has to start scrambling in October.

October, when the leaves are turning and the apples are ready for picking and the glorious smell of wood smoke scents the air. (Unless you’re out in California and then wood smoke in the fall is anything but glorious and I mean no offense by mentioning it). 

October, when meetings ramp up, when my business is at its busiest, when everyone everywhere seems to come out of the woodwork needing – heck demanding - a piece of my time. Yeah, that October.

So, since my kids never, ever want to be something simple .. oh no, no witches or kitty cats here .. it is a matter of self preservation to start early. OK, really, really early.

Last year Darby decided she wanted to be a girl in a bed. What, this surprises you? So I cut and painted the back of a refrigerator box (OK, blatant lie – Matt totally did the painting, but I bought the paint, damn it), bought a piece of cheap quilted fabric, a travel pillow, a whole bunch of shoe laces (did I mention that I don’t sew?), super cute hot pink footie pajamas and Mama MacGyver went to work. A couple of hair bows and a teddy bear later .. voila, one girl in a bed.

Not to be outdone, my sweet Kendall decided that she wanted to be JoJo the Clown. Now, you have to understand how big it is that Kendall wanted to be something. And that she told me what it was. You get that, don’t you? So, never mind the fact that she chose a somewhat obscure Disney character that Michael Eisner and his pals have all but forgotten about. Pay no attention to the fact that the JoJo costume that had been available previously had long since been discontinued. Not relevant. Mama MacGyver turned into Mama Nancy Drew and followed the trail of clues to a woman in Canada who had the darn thing,

So now you know why I start in August.

This year, Darby decided she wanted to be an elephant. Judge me if you will, but I already told you I don’t sew and if you’re paying attention, you might also notice that I am already burning the candle at both ends as it is, so I ordered it. From Canada. What’s up with the Canadians and their costumes? Let’s not question it. God bless our neighbors to the north!

Again, Kendall has kept right up in the ‘picking something random that is not readily available to anyone on the planet’ game. She has decided she wants to be Ming Ming the Duckling from the Wonder Pets. Now Ming Ming is apparently somewhat more popular than one might think at first glance. WITH KIDS UNDER THE AGE OF THREE. The largest size this costume comes in is 2-3T. She’s little, but she ain’t that little. So I’m still trying to figure out how to rig this one.  Hullo? A little help here? Oh Canada?

 

Anyway, back to the point that I abandoned long ago. And I must say that if you’re still with me, well, you’re a true friend. I probably wouldn’t have had the patience to get this far.

Point was and is that I am overloaded. And that I knew I’d be overloaded come this time of year. It ain’t rocket science.

So last year, in anticipation of said overload, I booked a vacation. It starts tomorrow. I haven’t begun to get us ready. I have a social story to write (and read), clothes to find and organize and pack. I have lists to write, obscure items to track down, a calendar to draw, sleep to miss. There are ferry schedules to check, tickets to find and pack and my head to retrieve from somewhere across the room.

But I am excited. I am excited to go back here and to write some new history. I am excited that if Kendall stumbles, I’ve got some new tools in my toolbox this year. Maybe I can make it just a little easier. I’m excited to make new memories. I think I’m even ready to confront that damn tree.

I haven’t yet decided whether or not I’ll be going radio silent for the week. In part because I don’t know if we have wifi or not. In part because I don’t know if it would do me good to go without this little world of ours for a week or if I need it too much to want to try.

We’ll see, my friends. Check in. I may stop by. But if not, have a wonderful week!

no apologies

 

“I was walking by a dry cleaner at 3am and there was a sign that said, “Sorry, we’re closed.” You don’t have to be sorry. It’s 3am and you’re a dry cleaner. It would be ridiculous for me to expect you to be open. I’m not gonna come by at 10 and say, “Hey, I was here at 3am and you guys were closed. Someone owes me an apology.”

~ Mitch Hedberg

 

I got a note from a mom this morning seeking my advice. Her son is going to play soccer in our town’s league and she had some concerns about how to best approach the director about her son’s special needs. I did my best to guide her based on my limited experience with such things.

I advised her to approach him openly and honestly. I suggested that she call him. E-mail, I said, is a great tool but a lot of the nuance can be lost in writing that might have been conveyed by a real conversation. It would allow him to ask questions in real time and hopefully really understand her son’s challenges.

I told her that I thought she should be careful not to hold back. I told her that while we all want to paint our kids in the best light, what will really help him in this situation is an honest appraisal of his challenges. I told her that when I do this sort of thing I write a list of topics and keep it in front of me while I talk on the phone. These things are emotional. It can be easy to get off track and hang up wishing you’d said more.

She wrote a lovely note back to me thanking me for my help. In the middle of the note was the following sentence:

I love your “this is who my kid is with no apologies” approach.

Wow.

So is that my approach?

Yeah, I guess that it is.

I’ve never named it before but sure, I’ll go with that.

I just don’t know how else to do it. I can’t imagine doing this any other way.

When Kendall was first diagnosed with autism, I was in a tailspin. For a brief time, my life was a cocktail of denial, anger, confusion and fear.

The overwhelming flavor in that cocktail was the fear. Fear that Kendall would be discriminated against. Fear that people would retreat from her. Fear that we wouldn’t know how to help her. Fear that she would be alone. Fear that the asinine doctor was right. Fear that people would limit their expectations of what she could achieve. Fear that we would. Fear that she would be treated differently.

So I didn’t say the word very much. Although it was our private key to a desperately needed understanding of so much of what our baby struggled with – what WE struggled with - I kept it hidden in my pocket.

I actually remember saying things like, “Isn’t it funny that Kendall responds so well to all of these strategies that they use with autistic kids? Cause, you know, she’s so NOT autistic. But hey, ain’t this ABA thing grand? Ain’t that picture schedule really helping her out?” Golly Gee whiz. I really wonder how it was that no one b!tch slapped me back then.

We put her into her wonderful integrated school and we began to watch her blossom in the care of people who KNEW how to approach her. Who GOT IT. And you know what? They WERE treating her differently. My big fear that people might turned into a desperate prayer that people WOULD.

They treated her with respect. They spoke in shorter sentences that she could understand. They went out of their way to include her when she disengaged. They repeated themselves when she needed them to. They gave her ample time to process their words and to respond. They took her out of the room when it became overwhelming. They broke tasks down into manageable pieces. They encouraged her. They lavished her with praise. They found ways to make her feel safe – the toughest thing of all. The thing I couldn’t always do.

I saw that when people learned about Kendall’s challenges, they were more patient and less judgmental. They rejoiced in achievements that they might not have recognized as such before. They helped us lovingly push her to realize her staggering potential. And they helped us find ways to make her feel safe.

Being open about Kendall’s autism freed me. And I believe that it freed her.

I described it to someone recently as a process much like that of coming out of the closet. I remember friends who had hidden their sexual orientation for years. In mixed company, their speech was always devoid of pronouns. They became proficient at saying ‘my friend’ or ‘my roommate’ in place of ‘my boyfriend’ or ‘girlfriend’ lest they give themselves away. I was always frustrated for them. It just looked like so much work.

And so it is with our world. My speech is peppered with the jargon of autism. I don’t typically get through a day without using the words in some manner or other. It would take energy to censor myself. And quite frankly, I don’t have a whole lot of energy left. So, yeah, I guess my approach is ‘this is my kid with no apologies.’

But there’s more to it, isn’t there?

We model behaviors for our kids all the time. Why do you think our little girls worry about their weight? Why do you think boys who grow up in abusive homes tend to abuse? Acorns don’t fall far. So if I go out of my way to maintain this ’secret’ aren’t I essentially teaching Kendall to be ashamed of a big part of who she is?

I can’t do that. I won’t.

And so, while I do everything in my power to teach my baby girl how to get by, nay to THRIVE in our world, I am also hell bent on changing that world’s perception of autism. One person at a time if that’s what it takes. 

Seven weeks ago, Matt and I finally made an agonizing decision. It was a long time in coming and it was one of the hardest triggers we’ve ever had to pull. We put Kendall on the anti-anxiety drug, Celexa.

Someday maybe I’ll laugh at the irony of all of the anxiety caused by the decision about anti-anxiety meds. But not now. It’s not funny now.

All of the SSRIs (Selective Serotonin Reuptake Inhibitors) are prescribed off-label for children her age. The pharmaceutical companies don’t test them on young children. The doctors do.

I kept thinking about how vulnerable Kendall is. I worried about how little we really know about these wonder drugs. I thought of how draconian some of the old drugs seem to us now and I wondered what we will be saying about Celexa in twenty years. I agonized over brain elasticity. 

I wondered if we might be making a deal with the devil. Could we be trading in her anxiety for some other developmental disability (you know, because this whole autism thing just ain’t enough) or some other abnormality down the line?

Despite the fears, we finally came to the conclusion (after a LOT of time, a LOT of careful consideration, a LOT of effort to find non pharmaceutical solutions, and a LOT of trusted, thoughtful, insightful professional advice) that the risks of doing nothing were far greater than the risks of the medication.

And we did it.

Slowly. Carefully. With nearly paranoid vigilance.

And her life has changed.

Remarkably.

In seven weeks.

She remains on a laughably low dose, though I still find nothing about it laughable. It scares me too much to be funny.

But I could NOT let my baby miss out on her world because she was so desperately afraid of so many things in it. It was heartbreaking. Her entire little body would shake. She would cry. She would scream. She was terrified. And it was constant.

It’s not constant anymore.

From the beginning, Matt was comfortable talking about it. I wasn’t. I kept it quiet. I’m not sure exactly why. I just felt like I was supposed to keep it a secret. That I’d be betraying her somehow if I told people. Perhaps I feared people’s judgments. Maybe I feared my own.

But here’s the thing. I learned today that my approach is “this is who my kid is with no apologies.” So, here it is. The whole story.

And I am so incredibly proud of my kid.

And I’d say that I’m sorry that I didn’t tell you sooner, but nope. No apologies.

to be sure of you

“Piglet sidled up to Pooh from behind, “Pooh!,” he whispered.
“Yes, Piglet?”
“Nothing,” said Piglet, taking Pooh’s paw. “I just wanted to be sure of you.” 

 

Darby and I were sitting on the floor in our office a couple of days ago. I don’t remember how it was that we came to be sitting on the floor, but it matters not. Some of our best conversations seem to happen below furniture level.

“Mama?”

“Yes, sweet love?”

“Why don’t you hold me when you give me a piggy back ride?”

“What’s that, baby? I’m not sure I know what you mean.”

“Well, you hold onto Kendall when you give her a piggy back ride, but you don’t hold onto me.”

“Oh. Well, um. Hmm. The thing is, sweet girl, I feel like I need to hold on to Kenz. I’m not always sure that she knows that she has to hold on to me. I worry that she might forget or get distracted and let go. But I know that a big girl like you will know to hold on, so I don’t worry.”

“Mama?”

“Yes, baby?”

“Could you not stop holding me?”

Someday I’ll write a post that does not include some version of the following sentence, but today is not that day.

I fought back tears.

“I’ll never stop holding you, baby.”

Never.

ymmarg

“It is quite true what Philosophy says: that Life must be understood backwards. But that makes one forget the other saying: that it must be lived forwards. The more one ponders this, the more it comes to mean that life in the temporal existence never becomes quite intelligible, precisely because at no moment can I find complete quiet to take the backward-looking position.”

~ Kierkegaard

 

My mom and her husband (better known as Grammy and Grandpa DD) were visiting from Connecticut this weekend. Kendall adores them both, but for the first few hours of their short visit, she bobbed and weaved in and out of their space. It’s what she does with guests in our home.  Approach. Retreat. Approach. Retreat.

She popped up next to my mom as we sat around our kitchen table after dinner.

“How do you spell Grammy?”

“Kendall, you know how to spell my name. Can you tell me?”

“I’ll spell it backwards.”

And then she did.

“Y M M A R G”

I could barely breathe.

“Kendall, can you spell YOUR name backwards?”

“L L A D N E K”

Oh

My

God

We went through Mommy, Daddy, Darby, some random friends from school. She spelled each and every one of them. BACKWARDS. Dora, Boots,  Charlie, Lola. BACKWARDS.

Did I mention that she can’t read yet?

That she’s FIVE?

No matter how you spell them, I am at a loss for SDROW.

tag i’m it

 

OK, so my girl Jersey over at Devin’s Journey tagged me with this um well thingy where I’m supposed to tell you six of my unspectacular quirks and then do a whole lot of other stuff which includes a lot of cutting and pasting and then tagging other people with some more cutting and pasting and then getting them to cut and paste too. I love my Jersey girl, so I don’t want to let her down, but I’ve got to be honest, I’m just not a fan of these things.  Besides, I happen to think that my quirks are pretty spectacular, but I’ll do my best to find six that I can share.

Incidentally, I asked Matt for his thoughts and suffice to say he a) went over the limit ~ six dear, just six ~ and b) he gave me nothing that was appropriate for public consumption. Thanks for your help, darling. Really.

So here goes:

1. I never sit with my back to the room in a restaurant.

The only exception to this rule is if I’m dining with my Dad. That’s because he’s the one who taught me never to sit with my back to the room so it was his rule first. And he’s bigger than I am. By a lot. And he was a middle school principal for forty five years so when he tells you to do something, you just kind of do it. Because you feel like if you don’t do it, you might get detention. Or ‘the look’. And you DON’T want the look. Trust me.

Oh, his reasoning had something to do with seeing the shooter coming. Whatever, Don Corleone.

2. I brush my teeth in the shower. Hey, my time is precious. Two minutes I save is two minutes I can spending making the world a better place for my children. Or sleeping. Or writing. Or playing Scramble. Or sleeping. Yes, I know I said sleeping twice.

3. I always smell my food before I eat it. I believe that this is just common sense.

4. I have one radio station programmed in my car. All country. All the time.

4.a) I love the PBR.  Oh gee. Was that a link to Justin McBride? Oops. Not.

5. I have 123 pairs of shoes. Yes, I just counted them. No, I didn’t count sneakers. Yes, I can still give you twelve reasons why I still NEED another pair.

6. I can wiggle my ears.

Oh, and if this is your thing, consider yourself tagged.

want to play a game?

 

Guess what I got for my birthday.

*

*

Any ideas?

*

*

I’ll wait.

*

*

I’m listening.

*

*

I’m all ears.

*

*

I know you can do it.

*

*

She does too.

*

*

you’re getting warmer.

*

*

Need help?

*

*

Want to take some time to think?

*

*

Think you’ve got it?

*

*

Yeah! I knew you could do it!

*

*

Look out, cause here come the pictures!

*

God makes a house call

 

I can’t explain a blessed thing

Not a fallen star nor a feathered wing

How a man in chains has the strength to sing

Just one thing is clear to me

There’s always more than what appears to be

When the light’s just right I swear I see

Man, it’s poetry

 

Sometimes the big old Mystery

Just leans right in on me

Says that I am home and I am free

And I’ll take that any day

Any day

 

~ Pat Green, Poetry

We haven’t been to God’s house all summer.

It happens.

Life gets in the way.    

Besides, they don’t really expect us there. They shut down the children’s programs after Memorial Day and our already sleepy little congregation dwindles as the restless New Englanders spread out in search of sand and sun and open spaces. 

There will be a re-gathering celebration in a couple of weeks. The kids look forward to the annual ice cream social followed by the re-commencement of the children’s school and choir and all of the hustle and bustle that accompanies the autumn season.

But God decided to come over to our place yesterday. I guess He figured that since we hadn’t made it to His house in a while, He’d stop by ours. 

I was sitting on the couch between my two girls, who were watching an episode of Blues Clues. Matt was sleeping in. 

Kendall had abducted my left arm. She wound her little body around it and made it pretty clear that she had no intention of giving it back. If I had plans to use it, I had better rethink them. She twisted her little legs around my wrist and hand and clutched my upper arm and shoulder with her own tiny arms. With her head nestled into my shoulder, she squealed softly in my ear, her warm breath sweet and heavy on my neck.

Darby was sprawled across the couch on my right side. She snuggled under a soft blanket, the fringed edges of which tickled my legs. She spread herself out without a hint of self consciousness. Her legs were splayed across mine, their weight and warmth finding their way directly to my heart.

For me, this is where God lives. In these small, perfect moments. In the spaces between us. In the warmth. In the literally overpowering love that I feel for my girls. In my home. In my heart. In the quiet. 

In something that is so obviously bigger than than the three of us.

I welcomed Him in.

On the television a chorus of children’s voices cried out to Joe, “A clue! A clue!”

A few months ago, Darby and I were discussing a conversation that she had had with our dear friend (and guru, reverend, rabbi, spiritual guide and pastor) Karla. Yeah, it’s a mouthful, but trust me, she defies a simpler description. Besides, I once promised her that I’d call her that.

Karla had asked a group of children to think about why God is often referred to as a rock. She asked them to list some of the attributes of a rock. She passed one around. “Heavy, gray, hard, from nature” were some of the descriptions the children gave.

Darby and I continued to talk about it later in the car. I asked her how she thought that God might be like a rock. “Well, Mama,” she said, “You know how when you see a rock split open sometimes and it’s really beautiful inside? There’s crystals and colors and all kinds of stuff in the middle?”

I nodded, wondering where she might be taking this.

“Well,” she continued, “It’s just like that with God.”

She seemed perfectly satisfied with this, but she could see that I needed a little further explanation so she continued on. I sometimes wonder if she thinks, “Poor, Mama. She’s a little slow, isn’t she?” But if she does, she never shows it.

“You see, Mama, when you look at a rock you have to BELIEVE that it has all that beautiful stuff inside. You can’t see it, but you just KNOW that it’s there. Just like you know that God is there, INSIDE.”

How on earth did I give birth to this miracle?

How is that this little tiny person could know that when things feel gray and rough and hard, we just have to HAVE FAITH that there is beauty within? That we just have to BELIEVE that under the heavy layers of rock, there is light? 

That God is always there, and even if you don’t make it to His house, you just have to look for Him and you will see Him in yours.

back to school

first day 07

 

“When u come to the end of all the light you know, and it’s time to step into the darkness of the unknown, faith is knowing that one of two things shall happen; either you will be given something solid to stand on or you will be taught to fly.”

~ Edward Teller

******

“But if you try sometimes

You just might find

You get what you need

Aw baby

You get what you need”

~ The Rolling Stones, You can’t always get what you want

 

Ah, back to school time. Time to shop for those adorable little first day outfits. Time to see which backpacks can be recycled, which lunchboxes and snack packs need to be replaced. Time to stock up on folders and crayons and pencils and paints.

And – sigh- time to pass the torch (and the big book of data) from the safe bubble of Kendall’s miraculously integrated preschool to the big open field of elementary school.

In three weeks, Kendall will be entering a typical kindergarten class in our neighborhood elementary school.  It is the same school that her big sister attends. She knows the place well. She’s spent a lot of time there. Which helps.  A lot.

But I am terrified.

We met her aide yesterday. This is the young woman who will be Kendall’s lifeline in kindergarten. She will be her guide - her conduit - to the entire school experience. She will be with her where we cannot go.

The young woman’s name is T, but I’m tempted to call her Atlas. Right now – to us – it feels like she will be carrying our little version of the world on her petite shoulders.

She seemed capable. Sweet. Eager. Genuine. Energetic. Everything that we could hope that she would be.

But I am still terrified.

So I called a meeting. That’s what I do. Get the troops together. Hash out the plan. Make sure we’re all on the same page.

We asked Atlas to come to Kendall’s current (or, to be more precise – as of yesterday afternoon, former – sniff sniff) school along with K, who will be the consulting BCBA managing Kendall’s programs next year. We all sat down with C, who has been Kendall’s ABA team leader for the past two years.

Since we had called the meeting, I fully expected to kick it off. But it was C who launched right in.

C led the meeting with a touching sense of ownership. You can’t miss how much she cares about our daughter. She had an obvious and well earned sense of pride in all that Kendall has accomplished this past year. So much of it is due to her expertise and experience. Even more of it is due to her dedication. She always believed in Kendall. She never, ever gave up on her. We will forever be in her debt.

Like us, she has been a student of our daughter. She has taken reams of data and patiently analyzed its meaning. She has seen the patterns that we sometimes missed and in so doing she has unlocked doors for our baby.

She was eager to share some of the secrets of her success with those who would take Kendall on the the next leg of her journey.

K was wonderful. She scribbled notes while we spoke. She asked questions. Intelligent, meaningful, thoughtful questions. She brought up things I hadn’t thought of. She thought outside the box. She allowed me to be cautiously hopeful.

I was so touched when I heard K refer to something that I had told C yesterday. They have been talking. That MATTERS.

I started to talk about my worries. Would Kendall’s overtures to the other kids put them off? Would she alienate them by asking one of her five or so opening questions again and again? 

“What is your name?

“Where do you live?” 

“Are you a boy or a girl?”

“How old are you?”

She asks me these questions all day long. The answers are irrelevant. She knows the answers.

“Mama.”

“Here with you.”

“A girl.”

“Thirty none of your business.” (She knows. I mean none of your business. No offense.)

The questions are not meant to elicit information. They are a means to interact. Five year olds might not get that.

As I told them this I started to cry. I couldn’t help it.

I am still terrified.

They cried too.

That means they GET IT.

I felt a little better.

We talked some more. We got into the specifics: manifestations of anxiety, common triggers, recognizing the first signs of escalation, heading off meltdowns, handling transitions, changes, expectations and routines.

We talked about motivation: favorite colors, shapes, characters, letters, numbers and foods. (Red. Star, Dora. Y. 2. Rice)

We talked about the importance of pre-teaching and Kendall’s success in her small social pragmatics group this year.

And then C said something to K and Atlas that I will never forget.

“I didn’t think she was ready for the social prags group. But Jess and Matt pushed for it. They knew she could handle it. I was worried. And she had a tough time at first. It wasn’t easy.”

I shook my head slowly as she spoke. No, it hadn’t been easy. 

She continued, ”But Kendall rose to the occasion. She did it. Jess and Matt knew she had the skill set to make it through. I’m so glad they pushed for it.”

And suddenly I felt just a little less terrified.

A tiny part of the weight was lifted.

We had pushed. We had given her what we knew she needed. 

I didn’t know then if it was the right thing to do, but I pushed because Kendall had shown me hints of her readiness.

C pushed her along. And it all came together.

Kendall pushed herself. And she did it.

Maybe, just maybe, we have some vague idea of how to get through this. Our instincts hadn’t let us down. They didn’t let Kendall down. We’re getting the hang of this.

I left a little more empowered.

And just a tiny little bit less terrified.

words matter -or- they’re both fish

 

 

So sometimes I’m a little slow on the uptake. When my husband and I were first dating, he took note of a book on my bookshelf called Rubyfruit Jungle, by Rita Mae Brown. A favorite from my college days, it’s a seethingly funny autobiographical account of the author’s coming of age (and coming out) in Florida in the late fifties and early sixties.

To say the least, I was surprised that Matt’s attention would be drawn to this particular book, but it was quickly apparent why. He explained that his Dad had gone to high school with Ms. Brown and that some of the characters in the book were thinly veiled accounts of their mutual classmates. The one that stood out above all others was Matt’s one time step-mother, Judy Bass.

He reminded me of the not all together flattering (but really damn funny) portrayal of a certain ‘Judy Trout’ in the book. Since Matt remembers Judy fondly, I will refrain from repeating the particulars of the depiction of her character in the book, but trust me on funny.

Nearly two years later, we were sitting in our living room (having long since moved in together by then) and I caught a glimpse of the book out of the corner of my eye. And the wheels started turning. And I yelled.

“Oh my God! They’re both fish!”

Yes, seriously.

(Feel free to read that again if you need to. I’ll wait.)

So, point is I’m not always the first one to catch on. Sometimes my little foam stuffed head is just full. And sometimes it goes on strike completely.

And so it was that until we had to register my beautiful baby girl with the Massachusetts Department of Mental Retardation’s Division of Autism, I really had not thought about how hurtful the word ‘retard’ could be.

It wasn’t until we had found Kendall’s wonderful school and she became friends with two amazing, delightful little children who happened to have Down syndrome that it really, truly sunk in. I am so sorry that it took me so long.

I used to make jokes.

I used to say, “I ride the little bus and wear hockey equipment every day” to make fun of myself. I thought it was funny. It hurts writing this. I am embarrassed. More than anything, I am sorry. My ignorance and insensitivity were inexcusable.

If Kendall rode the bus to school, it would be the ‘short bus’ that is provided by the town for the special needs kids. The only reason that she doesn’t is that we are lucky enough that Matt can be home and take her to and from school.

All of her friends ride that bus.

We are all on that bus.

I am so sorry.

When I made a mistake I used to say, self deprecatingly, ‘What am I, retarded?”

I am so sorry.

Of course, I stopped using that kind of language, but I am terribly ashamed that I ever did. I never meant to hurt anyone. But I did. I must have. I am so sorry that I led anyone to believe that using those words was anything less than unconscionable.

Words can hurt. They do hurt.

I am so sorry.

In time I asked my friends to stop using that language. I knew I was asking a lot. I know how easy it can be to throw those words around. They are ubiquitous. They are accepted. I worried that they’d roll their eyes at me. That I’d be the heavy. The one with no sense of humor. The PC pain in the @ss. But I asked them anyway. I am so sorry I didn’t do that sooner.

I later asked my co-workers to be conscious of the words that they were using. In particular, I asked them to think about the ramifications of making ‘retard’ an acceptable term. To think about the world they were creating for our children. To see that it could NOT be OK. I am so sorry it took me so long to get up the courage to talk to them about it.

Words matter. They have the power to encourage, to create, to inspire. They also have the power to wound, to scar and to destroy. Please, please, think about your words. Think about the fact that you can’t take them back. Ever.

I am so sorry that I can’t take my thoughtless ‘jokes’ back. Not funny.

I think about the fact that so many of our children don’t have a voice of their own. They rely on us to speak for them. We have a responsibility to choose our words with extreme care.

So, in light of all of the talk about Tropic Thunder  and its irresponsible use of the word ‘retard’, I come to you to ask (as a recovering dolt) that you think before you speak.

I haven’t seen the movie. I likely won’t see it. I have enough in my life that makes me squirm; I don’t need to pay for more.

You make the choice. But if you do see it, please see it thoughtfully. Think about its impact. And talk to your children about why their words have so much value and so much power.

How do you want them to use their words?

How will you use yours?