updating the construct

*

It all started a couple of weeks ago when my dear, brilliant friend M over at The Incipient Turvy wrote this incredible post. Have you met M? I can’t tell you how much I admire him. His writing is pure, unadulterated genius. Wait, I take that back. It’s deliciously adulterated genius. It’s genius M’d. It’s such genius that he may even convince you to read a little Proust. OK, maybe that was a stretch. But anyway, friends, meet M. M, meet friends. Now that that’s out of the way, let’s proceed, shall we?

As I was saying, M wrote this breathtaking post relating a conversation that he had recently with his doctor, to whom he refers on the blog as ‘the doctor’. See? I told you – genius. The post details the doctor telling M about a conversation she had with a mother and her teenage daughter with Asperger’s Syndrome. As it turns out, the mother’s perception of her daughter’s entire social experience is completely off base. Staggeringly, frightfully, heartbreakingly off base.

The post shook something loose inside of me that has been rattling around in there ever since. The doctor’s words nearly did me in:

“The mom…when she heard the daughter talking…reacted with genuine shock. She had described her daughter as ’shy’. As far as she was concerned, the daughter just lacked confidence. And you could tell that she had never really had a discussion about it. She mentioned that her daughter ‘never talked’…was ‘too shy to join in with others’. The mom had signed her daughter up for school clubs…church groups…band, and so on. Never saw her interact with others, just assumed she was anxious, hesitant. At first, when I asked the daughter questions, the mom repeatedly talked over her. Tried to answer for her. ‘I just think she has so much potential. If she’d just open up.’ Diplomatically, I had the mom not respond for a bit. And when the daughter began to describe school, analyze it …the mom was really stunned. Her jaw hit the floor. She said, ‘Doctor…I’ve never heard her talk this way before.’ She had no concept of her daughter’s internal life. You know…she basically viewed her as a shy little girl. Consequently, she could not see the alienated young woman. When she said, ‘I’ve never heard her talk this way before’, I felt like I was introducing two strangers. ‘Mom…I’d like you to meet someone…this is your daughter. This verbal, intelligent young woman.’ Quite a bit more going on there than shyness. Time to update the construct.”

It was those five last words –  Time to update the construct – that I just couldn’t shake.

A few days after reading the post, Matt and I were packed like sardines in the hallway outside of Darby’s classroom. With a slew of other parents and a smattering of siblings, we breathlessly awaited access to the Ms D’s 2nd Grade Classroom End of Year Extravaganza. There would be singing! There would be dancing! There would be snacks!

Periodically, the door would open and a little face would peer out, searching for Mom or Dad. Eventually, Darby’s was the little face at the door. She scanned the crowd and gave me a huge, gratifying grin when she saw me. She repeated it for Matt, but then she kept looking. Her brow furrowed and it became obvious that she wasn’t finding whatever or whomever she was seeking. “Mama,” she stage-whispered, “Where’s Kendall?”

“Oh, sweetie,” I began, “I don’t think it’s a good idea for Kenz to come up for this.”

Her face fell.

I looked around at all those parents and the smattering of siblings. I took in the already high noise level and then calculated the exponential leap that it would take when we ALL filed into the classroom. Twenty some-odd kids, one teacher, one aide, thirty or so parents and seven or so siblings and Oh Dear Lord, this wasn’t going to be pretty. But Darby wasn’t going to let it go easily.

“Mama, I really, really want her here. She should be here.”

Why do these moments always feel like Sophie’s Friggin Choice?

“Darb,” I tried to whisper (as we’d begun to be the most interesting thing happening in the hallway) “here’s the thing. This is YOUR show. And I know how important it is to you. And it might be really difficult for Kenz to handle. I’d hate to have anything disrupt this for you. What if I needed to walk her outside?”

“I understand,” she said, hanging her head as she retreated into the room.

I looked at Matt. “What the hell do we do?” I asked him. He shook his head ever so slightly. “I just don’t think she can handle this, hon. There’s a LOT going on here.”

I was about to agree when something clicked.

Time to update the construct.

 I suddenly heard myself saying, “I’ll bet she can handle a lot more than we think she can.” A fellow French speaking mom (wink, wink) standing next to me smiled knowingly as she said, “They usually can, can’t they?”

“Honey,” I asked, “Please go get Kendall. I think she can do this.”

Matt ran down for her and they came back in a flash. While they were gone, I was thinking it through, completely unconvinced that we had made the right choice. Forgive me, M – old constructs die hard. But then I thought about a year’s worth of sitting in a classroom. Of assemblies with the entire school. Of Darby’s show with her friend L. Of her own classroom’s show just a couple of days before. With decreasing levels of help, she’d made it through every damned one of them. By the time she and Matt returned I was thoroughly convinced she could do it.

I picked her up and told her that she’d be sitting on my lap. “NO!” she declared. “I will sit SEPARATE.”

Oh God. Not good.

The doors opened long before I could finesse her onto my lap. When we got in, the fate of our separate seating was sealed by the presence of a row of four tiny-people chairs set up perpendicular to the rest of the crowd. Really not good. I realized that, much like at Darby’s stage show, there would be no way for me to avoid her getting up in the middle. But the show was starting and I would have made a far bigger scene trying to move her than the one that I was hoping to avoid.

Darby and her classmates began to sing. Kendall sang along, sometimes appropriately, sometimes not, but never to the point of distraction. During one song, Kendall stood up to follow along and then stood again to take a bow with the kids. I hadn’t thought it was disruptive. Quite frankly, I thought it was pretty darn cute. It nearly broke my heart when Darby looked over and mouthed to me, “Oh well, I guess you were right.” But it didn’t happen again. From then on I was able to catch Kendall’s attention and get her to stay seated. She clapped when the crowd clapped, she sang when we were asked to sing along. She even danced with her sister when Darby chose her out of the crowd to join her for Jump Jim Joe.

When all was said and done, I asked Darby if she still felt that it was a mistake to bring her sister along. “No, Mama,” she said quietly, “I’m REALLY glad she was here.”

I stood there basking in gratitude for the incredibly well timed nudge from a friend to update the construct.

Hey, M? I’m REALLY glad you’re here.

Thank you.

dam, dam, dam

 

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On Sunday night, Darby announced that she’d like to do a report. Having no idea what she meant by a ‘report’, I enquired further. “You know, Mama,” she said. “Like where I learn all about something and then write it up and then present it to you and Daddy.”

I was intrigued. Whose kid decides five days into their summer that they’d like to do independent research? Apparently mine. Cool!

I asked if she’d like to do a book report – a logical question considering that this a kid who quite literally bumps into walls with her nose constantly buried in a book.

She scrunched her nose as she thought. “No, I tell you about my books all the time. I think I’d like to learn about an animal. I could look up all kinds of information – find out where it lives and what it eats and stuff.”

I was all for it. Had I suggested it, of course, it would have been a ghastly idea, but thankfully the idea was all hers.

“OK, love, so what animal would you like to study?” I asked.

“You pick, Mama.”

I flipped through my brain’s encyclopedia. What animal would she find interesting? I immediately honed in on beavers. They build dams! They work together! They mate for life! It seemed perfect.

“OK, love. How about studying beavers?” I asked.

“Sure, Mama. sounds great. I’ll go google beaver to see what I can find on the computer, OK?”

“Sure, honey, you go ahead.”

As she padded off to the office, I thought, “What an incredible kid. What great motivation. What great independence. What .. what .. what the flip is the matter with me?????????????????????????”

“WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAIIIIIIIIIIIIIIIIIIIIIIIITTTTTTTTTTTTTTTTTTT!!!!”

Need a minute? I can wait.

Yes, that’s right. I had just sent my eight year old daughter to go google the word ‘beaver’.

OH

MY

GOD

She came back into the den and cocked her head to the side like a little golden retriever. “What’s the matter, Mama?” she asked, the picture of innocence.

“I, um, I , hmm, honey, I’d rather that you wait for me or Daddy to help you, OK? I think it’s best that you, um, er, don’t go googling right now.”

“Is that because there’s a grown-up meaning to the word too?” she asked.

Wait, what the heck happened to the picture of innocence from like TWO SECONDS AGO?

I was poised, graceful and calm. I offered a succinct, eloquent response. Except not. All I squeaked out was, “Huh?”

“Well, Mama, I’m just saying, by the way you reacted just now and that look on your face, I’m thinking there’s something inappropriate involved.”

Yes, she speaks that way.

I recovered from my previous shock and took advantage of the perfect teachable moment. Or not.

“How about polar bears?” I stammered.  ”What do you say we do polar bears instead?”

Oy.

why mama drinks – part 2 of 3,926

“Mama, you would get me a white blindfold,” Kendall says, as she walks the perimeter of the den.

“What’s that, sweetheart?”

“You would get me a blindfold that is WHITE,” she says, running her fingers lightly along the windowsill as she passes by.

“I’m sorry, love,” I begin. “I’m not sure what you mean. I don’t think we have a white blindfold in the house.”

“Mama,” she says, now making her way around the couch, “you would get me a piece of paper that is white with a hole in it the biggest.”

“Hmm, umm, OK, honey, I’m still not sure what it is that you’re looking for,” I say, hoping for a clue.

“Mama, COULD you get me a white piece of paper please?”

“Of course, love. You asked very nicely. Great job.”

I head into the office and return with a white piece of paper.

“Mama, you would cut a hole in it the biggest like this,” she says, tracing a big circle in the air with her finger.

“OK, love. You want me to cut a hole in the middle?”

“Oh yeah.”

I fold the paper and cut a circle in the center. I then hold it up in front of my face to show her the finished product. I peer at her through the hole, hoping for a sign of approval.

“Well THAT’S not a good blindfold,”  she says as she walks out of the room.

I stand alone in the den, looking at the world through the worst blindfold ever, at a complete loss as to what just happened.

easy like sunday morning

Sunday morning ~ 7 a.m. I am sleeping, which is a miracle.

An urgent “Mama! Mama!” breaks the luxurious silence.

Darby is standing over me. She is nearly breathless. I can feel her presence an inch from my forehead.

“Mama! WAKE UP!”

I try to shake the sleep out of my head, willing the blur to lift. My heart starts beating faster. OK, OK, I’m focusing. What is it? Where do I need to be? Who’s hurt? Are there any broken bones? Is there a lot of blood? Should I grab the sheet to use as a tourniquet? Is anything on fire? Let’s go!

“Honey, what is it?” I say, sitting up.

“Mama, you need to be at work! You overslept!”

I look at the clock and shake off the last of the haze.

“Um, Darb? It’s Sunday, honey.”

“Oh, Good point.”

“Yes, love, I’m full of em. Go grab a book, would you? You can climb in with me and read. Mama’s going back to sleep.”

paint by numbers

I couldn’t wait to see them. It had been a long day and I’d had enough of the outside world. I enthusiastically threw my blackberry into my handbag, left it on the car seat and slammed the door closed behind me.

As I trudged up the steps, I listened for them.

The door at the top of the stairs swung open just as I reached it, pulled by a tiny little arm.

I stopped short of the second step and found myself eye to eye with Kendall. Literally – as she was looking right at me.

It still takes me back every time, this full frontal view of my daughter. The beauty of her face head-on stops me in my tracks. For so long I only got to see her from the side, always slightly askew to avoid my eyes. But now, more and more often I get the incredible gift of that full moon face.

My mouth and my arms opened simultaneously, but the words didn’t make it out and the arms hung ackwardly empty as she stood her ground in the doorway.

“I would paint now,” was the only greeting she offered.

“Oh. Um hi, love.”

“I would paint now,” she said again.

“OK, sweetheart. Could you say ‘hi’ to Mama first please and then we can talk about painting?”

“Hi, Mama. I said, ‘Hi Mama.’ I would paint now.”

“Ok, Kenz, perhaps you could let me in the door, honey?”

She scooted over ever so slightly. I made my way through the eighteen inches she gave me and moved toward the stairs.

“I would paint now.”

I plopped down on the bottom stair and asked her to join me there. I was exhausted. She reluctantly sat down next to me. “OK, Kenz, here’s what I’d like to do,” I began. “ FIRST, I’d like to have a hug. THEN I will go up and change my clothes. THEN I will come back and get all the paints ready for you, OK?”

She gave me a quick hug – mailed in at best – and said, “I hugged you. We hugged. I would paint now.”

As I laid yesterday’s newspaper across the kitchen table, Darby came running in from the den to join the party. “Oooooh, paints!!!” she squealed in delight.

Two sets of paints, two brushes, two smocks, ten sheets of paper and two happy girls later, I finally snuck up to change my clothes.

As I walked back down the steps I thought of the IEP goals. Yes, the ones I swore I wouldn’t obsess about. Those. The ones that have, over the years, always included some form of  ’communication of wants and needs.’

I took a deep breath as I rounded the corner into the kitchen. There she was, hovering intently over her latest masterpiece, her sister at her side.

Having been able to tell me exactly what she wanted and needed.

‘She’ll get there,’ I thought. She’ll get to wherever her ‘there’ might be.  All in her own time.

the remains of a year

.

A rising first grader

A worn-out backpack

A year’s worth of drawings, paintings and loosely defined ’sculpture’

Two meticulously written stories – painstakingly created, one word – one letter – at a time

Photographs – of a backpack, snack bag, jacket and folder – prompts from a year’s worth of morning routines

Kendall’s name from the classroom door - decorated, made her own

Scraps of wrapping paper and brightly colored tissue - the small tokens of our gratitude that they held now distributed to each teacher and therapist and specialist who touched our babies’ lives this year – fourteen in all

Priceless notes from teachers - telling us that they not only taught, but learned from our baby girl

Gratitude - for all of those who were there day in and day out

Four little girls who Kendall calls friends – whose names are so often strung together into one long word

A date for a trip to the zoo

Skills – myriad new tools in the toolbox – too many to count

Language – ‘what’ and ‘why’, past tense , the wonder of words, phrases, sentences

Ability

Confidence

A little girl who walked through the hallways of her school – so different than the one who HAD to be carried there just one year ago

Participation

Inclusion

A mother’s pride - bathing in reams of evidence that the year was a success by so many measures

A progress report and IEP goals handed back – some met, most – more than 60% – still marked ‘progressing’

More than 60%

Nagging doubt - Did we walk blindly through the year, deluding ourselves? Was our vigilance misplaced? Did we fail our baby girl? Did she really learn what she needed to learn? Were the goals unrealistic? Did we set the bar too high?

An appointment with our neuropsych / guru to find out

Successes – in their own way  – in Kendall’s own way – that can’t be discounted no matter what he says

the club

.

I refuse to join any club that would have me as a member

~ Groucho Marx

Driving back from the Cape on Saturday afternoon, Matt pointed out an Autism Awareness magnet on the back of a car up ahead. As we passed by, I gave the driver a probably overly enthusiastic smile. He likely wondered why I was either flirting with him or simply giving him the crazy lady grin, but it quickly became obvious. As we passed, he saw the matching magnet on the back of our car. He gave a quick honk of acknowledgment and I reached out the window with a wave.

Matt said, “Well, that was nice,” and glanced over at me with a smile.

I tried to return the smile, but hot tears had already begun to stream down my face. While his glass was obviously half full, mine had just spilled and broken. It was just one of those moments.

“C’mon, hon,” he said eagerly, “that was good. Awareness, acknowledgment, support. All good.”

And all I could think was, Oh yeah, all good. Welcome to the club you’d never want to be a member of. Freakin great.

My mind was racing. There are a lot of clubs I would have like to have belonged to throughout my life. A country club – now that would be nice. A tennis club maybe, or a field club. Hell, I don’t have a boat, but if I did, a yacht club sure would be swell.

But a club whose members are connected by their children’s challenges? By their pain? By knowing that their kids have a trying road ahead? Not so much.

Matt looked at me, somewhat deflated; accepting the inevitable. “I’m guessing you can write a post about this somehow.”

Oh, honey, I thought, sometimes they just write themselves.

june 19, 1999

OK, so it’s been a bit of a Mattapalooza this week. Admittedly, it’s gotten out of hand. Between this and this, well, I can just see you rolling your eyes and letting out a deep, ‘Oh for God’s sake, enough already’ sigh. And you’re completely justified. Heck, I’m a little tired of talking about him too, I assure you. (Sorry hon, but c’mon, it’s a little out of hand,)

But, well, it turns out that exactly ten years ago today, I said the following words to Matt. And then he said some similar stuff to me. Including – I kid you not – a promise to reach for things on the high shelves for as long as we both shall live. I’m fairly certain it was the first time I saw his mom (who is a mere five feet just like yours truly) cry.

It’s been ten years and one hell of a ride. I can’t wait to see what the next ten will bring.

Matt,

I come here today to pledge my life to you. The promises I make today I have honored since I’ve known you. So, as so much changes today, nothing is different than yesterday. For I will love you always as now.

I will love you as my rock, my strength, my shelter. You will always be my inspiration, my passion and my home. You are forever my lover, my playmate and my dearest friend.

I promise here to love you without reservation or condition. I promise to listen hastily, to judge slowly, to temper pride with understanding and jealousy with trust.

I promise never to stop talking to you, learning from you and growing with you.

I promise to keep our love precious. To never for a moment take for granted its word or its deed.

Above all, I promise to remember this moment. To remember that I stood here today before those I love and respect to pledge my life to you. I did it because nothing in this world or the next could keep me from loving you. I did it because when I look into your eyes I see my past, my present and my future. I see the family we have been and the one we will create.

I promise to keep these foundations strong and to never stop building on them.

These things I promise with all that I am and all that I will become with you.

June 19, 1999

And June 19, 2009

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And to you, dear reader, I promise a return to our usual programming on Monday. Thanks for hanging in there through the sappy stuff!

ready to run

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To call running ‘fun’ would be a misuse of the word. Running can be ‘enjoyable’. Running can be ‘rejuvenating’. But in a pure sense of the word, running is not fun.

~ Dean Karnazes, Ultra Marathoner

Some of you may remember a delirious moment back in October of last year when I somehow decided that it seemed like a good idea to publicly declare that I was going to train for a half marathon. Some of you may even remember that I even went so far as to sign up for one. In February. On Cape Cod.

I’m sorry to say that I did not run that half marathon back in February. I somehow sobered up and realized that oh, yeah, I DON’T RUN. I mean AT ALL, no less in the middle of the bloody winter on the bitterly cold New England coastline.

However,  I’m incredibly proud to say that come November, I began to run. I started slowly, but built my mileage pretty quickly. Within a couple of months I was clocking as many as 45 miles a week.

I have to admit, I became a little obsessed. I began to constantly update my status on FaceBook. Last mile of 10 came in under 6:30! and heading out for a nice slow 6 in my vibram five fingers! were par for the course.

Before I knew it, I was in the best shape of my life. I’ve dropped every possible bit of excess weight and I look utterly amazing. Between you and me, I’m even sporting six pack abs!

I ran a sanctioned 5K back in April and set my sights immediately on an upcoming half marathon. I ran Boston’s Run to Remember on May 24th and dare I say it? I kicked ass. I ran 13.1 miles in 1:40:47. Best of all, I looked great doing it. Even at the finish, I was nearly unruffled.

See? There I am. Don’t I look awesome? After THIRTEEN miles I still look pretty damned fresh, don’t you think?

Oh, excuse me .. I have to take this call.

“Hello? Yes, this is she. What’s that? That’s not me? Huh? WTF? Oh, that’s Matt. I see. So it is. Well, isn’t that nice? Friggin show-off. Oh, man. Guess I got me some splainin’ to do. Dang.”

OK. So, um. Hi. You’re still here, huh?

OK, OK, so I didn’t do it. I bailed completely. I tried in fits and starts and got exactly nowhere.  All these months I ignored the topic completely. I was afraid to tell you. I felt like I’d let you down – me and my grand declarations.

I got overwhelmed with the business of  well –  life. I couldn’t seem to carve time out anywhere. Mornings were brutal, afternoons were full, evenings were exhausted. I had a whole lot of nothing, sparky.

Matt has become a runner. Truly, down to his core he is now a runner. He’s training to qualify for the Boston Marathon – known as one of the most competitive courses in the world. He will first have to run a qualifying marathon in 3:20 to be eligible. He will.

But me? Not so much. The only running I’ve done has been to the store to get new jeans because my fat jeans were suddenly no longer my fat jeans. Damn dryer.

But then I read this.

When Darby found out that her pen pal, Riley had run a 5K, she was in awe of the accomplishment. I read a little bit more about  Girls on the Run. I knew we couldn’t handle the whole program (and Darby’s still a little young), but we began to talk about creating our own. A Mama and daughter running club geared toward eventually running a 5K.

On May 1st, Darby and I called to order the first meeting of the May-Day Club.

Marathon Matt tailored a training routine to our modest goal. The first time we set out, we ran for just four minutes. Baby steps.

We’ve had a ball. We are up to two miles, alternating walking and jogging in three and four minute intervals. We’ve inducted two more members into the club. We run together whenever we can.

Last night, I took off on my own and managed to run for nineteen of thirty minutes. I covered a ridiculously meager 2.2 miles in that time, but I did it. I had to look at the sidewalk a couple of times to make sure that I was actually moving forward, but I did it. I had to talk myself through it at points, but I did it.

My iPod helped. Country music may seem like a terrible choice to run to, but it worked. Lyrics like, “I knew somewhere amid all this distraction was a little less talk and a lot more action” and “A glass half empty is a glass half full, and that’s what make’s life beautiful” kept me moving.

Running does not come naturally to me. As I said back in October,

You know that expression, ‘this body’s made for comfort, not speed’? Whoever said that knows me. No one will EVER mistake me for a triathlete. I’m soft. Cozy. Cuddly. Cushiony. I need a highly engineered, steel reinforced sports bra. Lean and mean? Not so much.

So it’s hard. Last night when I started to slow down, I thought of Darby the other night on our May Day run. We were on our fourth interval. Her little pony tail bounced behind her. After having spent the last interval moaning and groaning, she was hitting a groove, finding a second wind. “How you feeling, baby?” I asked, checking in. Her answer sent my heart soaring. “Strong, Mama! I feel strong!”

Baby steps.

I’ll leave the marathons to Matt. I think I’m just fine with working toward STRONG.

get going

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I’m honored to be writing over at Hopeful Parents today.

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