hope, meet reality

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@diaryofamom jess

At the @autismspeaks #greaterbostonwalk kickoff. So inspired by the incredible people who come together to support our kids.

27 July

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@diaryofamom jess

Can’t stop crying. Incredible speakers representing myriad groups who support our community. So touched. @autismspeaks #greaterbostonwalk

27 July

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@diaryofamom jess

Came home from an incredibly inspiring night w @autismspeaks to find baby girl an epic disaster. Hope, meet reality. #Autism

27 July

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The walk kick-off was amazing. They always are. They are inspiring and emotional, wonderful and draining. They remind me of both how far we need to go and how far we’ve come. They remind me that we stand on the shoulders of those who came before us – those who started this journey years before the age of the Internet changed it all. Those who fought to find each other in the dark – and did. Those who could barely put one foot in front of the other some days and yet somehow found in themselves the strength to start foundations, lobby lawmakers, convince educators and churches and businesses that full societal inclusion was not only humane, but necessary. Those who brought the plea to science – help us.

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These events remind me too of just how big our village is – how many people work tirelessly in the trenches to support our families. There were people on the spectrum, of course along with aunties and grandmas, fathers, sisters, brothers and friends.

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But so too there were Neuropsychologists and teachers, insurance advocates, researchers, BCBAs and students who had chosen to dedicate their studies – and then their lives –  to helping our kids find ways to communicate.

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And then there were those who seemed to have no reason to be there at all. Those whose lives are not directly effected by autism, but who have instead made the decision to climb into the trenches with us, roll up their sleeves and get to work simply because it is the right thing to do.

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Luau and I were lucky enough to spend part of the evening talking to a few of our all-time favorite people – Sean O’Brien, Trish DiSilva and Tommy Mari. Sean, Tommy and Trish represent the 25,000 members and families of the Teamsters Local 25, but to us, they represent something far bigger than all of us – hope.

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The teamsters come each year to support our community. They turn out at the walk in nearly unfathomable numbers to raise awareness, to create understanding, to help us find ways to make the world a better place for our kids.

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They throw a huge fundraiser each year, the Light Up The Night Gala for Autism, bringing together people from nearly every walk of life to learn about autism and to raise staggering amounts of money for research and local support programs. Over the years, they have never wavered. Between the gala and the walkers, they have contributed nearly a MILLION dollars to the effort.

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Luau and I have tried to express our gratitude to them again and again, but I’m afraid we come up woefully short. How does one thank someone for that kind of commitment to a cause that they are connected to only by compassion? I have no idea.

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And so, as we always do, we left the kick-off with full hearts. With hope for better days. With belief that, as Luau said in his wonderful speech, “A world in which suffering from autism no longer exists” might be a reality.

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And then we got home.

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A friend was sleeping over – the little girl who is both Katie’s friend and Brooke’s former fourth grade buddy from school. Thank God it had been her.

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Baby girl was struggling. Julie explained that Katie had gotten the hiccups. Brooke had melted down. It had been hours, but the effects were far from gone. The night had been about damage control.

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I went into Katie’s room to find her on her bed and Brooke curled up next to Jenny in the trundle on the floor. The big girls were whispering to one another as quietly as they possibly could.

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It was all I could do not to kiss Jenny when she looked up at me and said, “Don’t worry; it’s fine. I’m used to it.” Ok, fine, I did kiss her. I couldn’t help it.

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As soon as Brooke saw me, she grabbed my neck and pulled herself into me. Her breath was still uneven. He eyes were swollen and bloodshot, her cheeks pasty and pale. I could only imagine what had brought her there.

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I suggested that she come into my room with me. Perhaps Katie and Jenny could have a few minutes to breathe. To giggle. To be ten.

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Brooke’s little body was depleted. A marathon melt down is a marathon after all. We went down to the kitchen to find a snack. And then another. And yet another before she could settle down for the night. At 11:30 I finally drew the line at a bowl of spaghetti.

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I asked if she was ready to go to her room. My girl sleeps in her room. In her bed. I can think of perhaps three times in her life that she’s slept with me. It’s simply not what she does.

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She refused to leave. “I will stay here with you,” she said.

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My girl thrashed for TWO HOURS. Every part of her little body betrayed her total lack of ease. For TWO HOURS, she kicked and clawed and hit and rolled, all while holding on for dear life. She never once let me go.

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At some point in the middle of it all I grabbed the phone by the side of the bed and with one hand typed the following:

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Came home from an incredibly inspiring night w @autismspeaks to find baby girl an epic disaster. Hope, meet reality. #Autism
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And so we continue on. We fight through the days when it seems that all we can do is put one foot in front of the other. But we do so knowing that there is an army of people – people like Sean and Trish and Tommy – standing with us, shoulder to shoulder in the fight.

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Thank you, from the bottom of my heart, to the Teamsters Local 25. We love you guys!

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finding his voice

 

As men we are wired to “fix” things. As fathers we are wired to protect our children. This is our nature. But autism is neither something that can be fixed nor something we can protect our children from – instead it is messy, complicated, hard, frustrating. And so as fathers we lose faith in ourselves.

But I am here to tell you tonight, no matter how lost you may feel, no matter how overwhelmed by the process you may be, there IS a way that you can help, there IS a way that you can make an impact, not only for your child but for all of our children.

~ Luau last night at the Autism Speaks Greater Boston Kickoff

*

I was so proud last night watching my husband at the podium sounding the rallying cry to autism fathers everywhere.

I am so proud of all that he does every single day to make this world a better place for our daughter.

Please read and watch his speech — HERE –.

Love you, babe. You done good.

 

the journal and the paper chain

We interrupt our usual programming this morning to share a couple of utterly fabulous ideas from Diary readers. I can take no credit for either of these – at least not yet. Perhaps when the statute of limitations is up, then I can start claiming them as my own.

In the meantime, I give you two totally unrelated yet equally wonderful ideas — the journal and the paper chain*.

Do with them as you will.

*Ed note: Doesn’t that sound like the title of an Encyclopedia Brown caper? The Case of the Journal and the Paper Chain. No? Just me? Moving on.

The Journal

The actual one I bought!

Image from Jenni Bick Bookbinding

The other day, Kelly from Raising Rebels left a comment on my post, Dear Katie. In that comment she offered the following truly life-changing idea.

Just an idea…something I do with my daughter. We have a notebook that is just for us. We write notes back and forth to each other. Sometimes silly jokes, sometimes just a note that says “I love you” and sometimes we pour our heart out. There are days when we write often and then times when we go days without even opening it…it ebbs and flows, nothing forced or scheduled. She treasures it and I treasure the bond it creates between us.

The very next day, I stopped off on the way home from work and bought a journal. I borrowed a pen and then and there – right in the middle of the store – began what I am now sure will be a lifelong correspondence with my daughter. The only thing I will be sharing from that notebook is its very first entry.

July, 2011

My Sweet Katie,

This journal is just for us, my love. For notes, drawings, random thoughts between you and me. Any time we want, for no one’s eyes but ours.

I love you, Katie. I’m so, so proud of you and nothing in this world makes me happier than being your mama.

[Our super secret version of I love you]

Mama

I wrapped it in ribbon and brought it home. I handed it to Katie in a quiet moment when no one else was around. We decided where it would live and established the only rule – there can be no rules.

I envision us reading the entries together over the years. Revisiting stacks of filled journals as Katie goes off to college; moves into her first apartment; when she has children of her own.

In two days, there are already three more entries. They mean more to me, and I dare say to my girl, than I can possibly express. A space all our own – a place that belongs to no one but us. A place for my Katie to say what she wants – and needs – to say.

There is no greater gift.

Thank you, Kelly. From the bottom of my mushy mama’s heart. Thank you.

The Paper Chain

Click to enlarge.

No idea if that’s what ours will actually look like, but you get the point.

We have a trip coming up. A kinda big one. The kind with a lot of moving parts and the need for a fair amount of prep in order to make it successful for little Miss. I’ve been talking to friends and accumulating advice to help smooth our way.

Of all the tips that I gathered (like ‘When there are two queues and you have to choose between the right and the left, always choose left’. You’re welcome.) my favorite is the paper chain.

Brooke does very well – OK, she does well – traveling, but after more than one night away from home she begins to get anxious. No matter how much she may be enjoying the trip, she has trouble understanding how long we will be there and when we will be coming home.

Years ago, I started drawing out calendars. As soon as we reach our destination, we sit down together and map out our days. I draw in the plane or the car or the boat that got us to our destination and another on the day that we will be heading home. Each day, we write in our plans and each evening we mark off another day’s passing. Each and every day we count the days left and talk together about when we’ll be going home.

It has helped immensely, but it still isn’t perfect. Enter the paper chain.

In a conversation earlier this week, my friend Carrie shared what she did for her little guy on their last vacation. Instead of a calendar, she made him a good old-fashioned construction paper chain. Each day of their trip was represented by a link. After each day was over, its link was removed. The chain got smaller and smaller as the week went by.

I can’t tell you how much I love the simple brilliance of this idea. My girl NEEDS a way to see the days passing. She needs a tangible representation of how much longer the trip will last and when we will be headed home. She can see the chain. She can touch it and feel it and hold it. She can even decorate the links or draw the day’s activities on them. She can control it. The possibilities are endless.

And even better, it can be used in any situation where time or patience are an issue. Waiting room? The links can represent five-minute increments. Days before school starts at the end of the summer? Got it covered.

Thank you, Carrie. This one’s going straight into the toolbox.

**

Sometimes it’s the simplest things that can make our children’s lives easier and the smallest gifts that can make them immeasurably richer. Thank you so much again to both Carrie and Kelli for taking the time to share the things that worked in their lives with us.

If YOU have any ideas that you’d like to share, please feel free to leave them in the comments. I’d absolutely love to hear them.

**

Ed note:

Babble.com is asking you to vote for your favorite autism blogs. To vote, all you have to do is hit ‘like’ next to the ones you’d like to see in their top ten. No registration, no request for any info – zip. Just a button to hit and you’re on your way.

You may just see someone you recognize on the list. And well, I wouldn’t get mad atcha if say, you wanted to vote for Diary.

Please Click -> HERE <- to vote.

Thank you!

P.S. It’s been brought to my attention that Diary is on there twice – listed once with the ‘A’ and once without. No idea what to do about that, so what say you just like em both? Thank you again.

a pink sock sorry

Katie has finally come apart at the seams. Lest there be any doubt, she is sobbing, face down into the basement sofa. Her rib cage rises and falls, rises and falls. I cannot comfort her.

Brooke orbits the basement. She is frenetic.

She gathers the hammock swing in her hands and steps up on the arm of the couch opposite her sister’s. She pulls it as far as it can possibly go and then jumps with all the force available to her four foot, forty-five pound frame. At the very top of the arc, she throws her head back. I flinch as the swing sharply reverses course and her head narrowly misses the arm of the couch.

Katie finally agrees to talk. The words spill out – frustrated, angry, sad. I can only listen. She needs to purge; she’s not ready to hear.

“But, Mama,” she says, the echo of a sob caught in her chest, “I just want to DO something for her. That’s all. I’ve been trying all day. Really, I’ve been trying FOREVER.” I try not to smile at the perfection of ten year-old hyperbole. “Mama, she won’t let me DO anything with her,” she continues. “I just want to love her. That’s all. I just want to love her.” The tears begin to flow again.

Katie has been trying desperately to find a way to do something with her sister. Her attempts have been both flat-footed and ill-timed. Her latest went down in flames, topped off by a crack to the back of the head.

She tried to set up a fair in the basement – stations of ‘rides’ and games in which Brooke could win small prizes. She’d done it before with great success, but this was just not the time. Her sister was, and still is, in hyper-speed. There is no slowing down and certainly no stopping. I can’t, as Katie had so plaintively asked, “Just make her stop.”

Katie had decided that the first game she needed to set up simply HAD to be right under the swing. It was the only place in the entire basement that it could be. I don’t know how many times or how many different ways I said it. But she wouldn’t hear me. I watched in slow motion as she ducked directly into the swing’s trajectory. “Katie!” I shouted, just before it careened into her, knocking her to the ground.

I told her that I was sorry that she’d gotten hurt, but that it was hard to blame the train when one has walked onto its tracks.

Brooke propels herself around the basement now on the big blue exercise ball. I’ll never figure out how she manages to steer that thing as she bounces it around the room. But in the ball’s seemingly impossible movement she’s managed to find everything she needs. Speed, impact, movement, bounce, freedom.

Katie is letting it all out. How she feels like her sister never wants to be with her. How she wonders if she even likes her. How she just wants to show her that she loves her and she won’t let her.

We talk for a long time. I remind her that she often wants no part of her little sister either. How she too so often just wants to be alone. How sometimes, when you really love someone, the greatest gift you can give them is showing them love not in the way that you may prefer to deliver it, but in the way that they need to receive it. How that lesson has been the hardest for her mama to learn too. How sometimes space is the greatest gift of all. How her sister really does love her. How she shows it. How hard Brooke works too. Katie forgets. She’s not the only one who exerts energy to interact. She is somehow surprised to hear how hard her sister tries too.

Katie sobs and Brooke short-circuits. She lets out a tense laugh. Katie gets angry. “And now she’s laughing at me!”

God, we’ve been through this too many times. I feel like a recording. “Brooke, that’s not expected, honey. What do we do when we see someone crying?”

The words are rote. “Are you all right, Katie?”

I explain to Katie, for the thousandth time, that her sister’s laugh is not what it appears to be.

I walk Brooke through an apology. I walk Katie through an acceptance. The walls are closing in. I stand up to breathe.

Katie is pleading with me. “Please, Mama, just take me to the book store. I’ll buy her a present. At least it’s something. And I won’t give it to her until she’s feeling more sociable, OK? It won’t be a set-up. I’ll wait. But I’ll have it so that when she’s ready … please, Mama. Please.”

Her impotence is achingly familiar. Her desperation to just DO something. To connect. To love. I know it intimately.

As I contemplate getting her into the car, Brooke makes an announcement. “Katie, I will make you a picture.”

Katie and I sit and wait. She eventually picks up my laptop and finds her way to Girls Go Games. She falls into the comfort of a game she used to love, making a cake with Holly Hobby. She laughs when the game won’t let her mess with the ingredients. The fog is lifting.

Brooke returns clutching her drawing. She thrusts it out to her sister. “Here, Katie,” she says. “I made you a pink sock.”

Indeed she did. Katie takes her sister’s gift. “Why is it a pink sock, Brooke?” Brooke answers, “I don’t know.”

Katie looks at me and shrugs. Brooke points out the writing. “It says ‘Katie’.” And so it does. But it says a lot more.

(names removed)

Katie turns it over and finds more words on the back.

To Katie

Sorry I coughd (sic)

Brooke

As she reads, Brooke suddenly reaches out and hugs her. Katie looks at me with wide eyes, then closes them and rests her head on her sister’s shoulder. As quickly as she leaned in, Brooke gets up and returns to her ball.

I ask Katie what she thinks her sister meant about the coughing. She has no idea and couldn’t care less. I think I do, but I let it go.

Katie clutches the paper to her chest. “Mama,” she says. “I’m going to keep this forever.”

Yes sometimes, when you really love someone, the greatest gift you can give them is showing them love not in the way that you may prefer to deliver it, but in the way that they need to receive it.

someone took my kid

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© 2008 – 2011 Diary of a Mom

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Last night, I was pretty well convinced that someone had taken my kid. I wasn’t sure who the adorable little sprite was that had been left behind, but man, was she awesome.

She was just like Brooke – same big brown eyes with eyelashes that would make Coco Chanel weep. Same glowing caramel skin; same impish grin when she laughed. Heck, she even had the same stable of knock-knock jokes as my kid. But something was different. Really different. Not, wow, you’ve changed your hair different. More like Dear God in Heaven this just FEELS different.

The phone rang at dinner. Luau went to answer it, and Brooke, as she ‘s done every time the phone has rung for about a year now, asked, “Who ya talkin’ to?’ Luau answered, “I’m talking to Grammy.” And then the little kid that looked exactly like Brooke said, “Can I talk to her?”

I mean, this was so obviously not my daughter. My daughter does not ASK to talk on the phone. To anyone. And Dear Lord in Heaven, this kid TALKED. Now, I’m not going to claim that the conversation was anywhere near typical. It veered pretty far off the rails a few times, but God bless my mom, she kept it going.

And this little kid that looked just like my daughter KEPT talking. She told her jokes, she answered questions about camp, she said, “You are my grandmother’ and then asked to bring her something that doesn’t actually exist as a gift when she visits this weekend (stuffed animal versions of the three piggy Supremes back-up singers on Sesame Street.) That’s when I thought the similarities between this kid and mine were just damn eerie, but still, this kid was STILL talking ON THE PHONE, so obviously she wasn’t mine.

And I’m telling you, it was just so DIFFERENT than any conversation I’d ever seen out of my baby. She was, well, conversing.

I can’t let this go without expressing my gratitude for my mom. After the phone conversation had ended, she sent an e-mail to both me and Luau.

I don’t care if Brooke’s conversation was scripted. She was magnificent!

Katie was, as usual, awesome.

…

I can’t even express how wonderful I feel!

Love you,

Mom

I wrote the following in response.

that conversation w brooke was AMAZING – truly a watershed moment. and she ASKED to talk to you!!! you did a FABULOUS job keeping it going – not an easy feat. made us soooo happy!

thank you for making such an effort to connect with her. it means so much. and yes, i’m crying now and can barely see the keys, so i beg you, don’t write anything mushy back or i might just dissolve into a puddle. no really. and i thank you.

I didn’t have grandparents actively involved in my life when I was a kid. And I felt their absence. For that reason alone, I know how much that relationship means.

But I also know that being a grandparent to a child like mine (or even one that looks exactly like mine but who also talks on the phone) can be challenging in so many ways. Connecting with Brooke takes some extra effort. She demands perseverance. She needs creativity. She will test your resolve. But all she really wants is your love.

I am so grateful to my girls’ grandparents for all they do to really KNOW each of their grandbabies. It’s a gift I do not take for granted.

But back to this whole Help, someone replaced my kid thing. Seriously, it got even weirder. Just before bedtime, I gathered clothing together for camp. I turned to the little girl who looked just like Brooke, as I always do, for final approval on the outfit. She looked at it, then said, “But it’s Color Day tomorrow.”

And then I fainted.

OK, not really, but I swooned a little. And then she marched off to her sister’s room, trailing more words behind her. “Katie is letting me wear her Muno shirt.” I have no idea how much time had passed because I was still standing there in suspended animation with my mouth agape when she handed me the shirt and said, “What does it say?” I snapped to in order to tell her what she already knew, that it says. “Don’t Bite Your Friends,” which I think we all can agree is good advice. She then laid it out on the floor and said, “It’s red.”

Satisfied, she walked by Luau and climbed up on her bed. He looked at me. I looked at him. I couldn’t stop grinning. He broke the silence. “Um, babe? Who WAS that kid?”

I answered, “No idea, but I really, really like her.”

After tucking her into bed and cuddling for a few minutes, we did our countdown and I headed out. I looked back as I left her room. “I’m really proud of you, baby,” I said. She answered, her voice heavy with sleep. “I’m proud of you too, Mom.”

Nope, not sure who this kid is, but man, I really, really like her.

*

Ed notes:

Follow me on Twitter! @Diaryofamom

Babble.com is asking you to vote for your favorite autism blogs. To vote, all you have to do is hit ‘like’ next to the ones you’d like to see in their top ten. No registration, no request for any info – zip. Just a button to hit and you’re on your way. And, um, you may just see someone you recognize on there, and well, I wouldn’t get mad atcha if say, you wanted to vote for Diary. .. Click -> HERE <- to vote. Thank you!

*

All images are the exclusive property of Diary of a Mom and are protected under the United States and International Copyright laws.

The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jess at Diary of a Mom.

© 2008 – 2011 Diary of a Mom.

dear katie

**

I sat down to write a letter to my sweet Katie this morning. To apologize to her. To let her know that I get it. That sometimes it takes her Mama a little longer than the average bear to see – to really see what’s right before me, but I get it now.

To tell her that I really do see how hard she tries. How much she gives. How far she stretches and bends and twists and turns herself in the name of reaching her sister. How to keep the precarious balance, the expenditure of effort feels anything but balanced.

I sat down to tell her how sorry I am. That last night was one of those nights. That my frustration with the situation was entirely misdirected. That when she finally melted into a heap of tears and said plaintively, “This is just hard. You have no idea how hard I try,” that I heard her. That I really, really heard her.

That that moment is a part of me now – swaddled in a coarse blanket of shame, side by side with all of those other moments when time had to stop before it became so obvious. God, it’s always so obvious.

As I wrote, I decided not to publish that letter here. As much as it may feel like it belongs here; it doesn’t. It’s for Katie. She deserves at least that. Something precious. Something unshared. Something for no one’s consumption but hers.

What I will say here is this – so that someday when she reads this, she will know that I meant every word that I said on that July morning back in 2011. The morning when I crept quietly into her room before the dawn and woke her up to say that I was sorry. That morning when I curled up next to her and told her that I am grateful, and that, in her own way, her sister is too.

I’m here, Katie.

And I get. I swear, I get it.

I’m sorry I’m a little slow on the uptake sometimes, baby, but I see you. Please believe that I really, truly see you.

I understand how hard you work and how little gratitude you see.

But it’s there, my love.

It’s always there.

It’s there in the quiet time we spend in your room. It’s there in the barely controlled chaos of the kitchen. It’s there in the stolen hugs and the kissing hands and the perfume that you steal from my neck before I leave for work every morning. It’s there over the phone line when I call to say that I’m on my way home and I tell you that I love you over and over (and over) again.

It’s always there.

I’m going to try to stop and point it out a whole lot more from now on, baby. But I promise you, even when you don’t see it, it’s there.

I love you more than anything in this world, my little love. More than the moon and the stars and everything in between. I love you so much that sometimes it threatens to break me in two.

And every night – every single night – I go to bed praying that that can be enough.

I see you.

And I’m sorry.

a man of style

Dr Brian Skotko, his pants and his beautiful sister Kristin

photo from www.childrenshospitalblog.org

*

Yeah, I know. I’m like a dog with a bone. I don’t let go. But this whole GQ thing has really gotten under my skin. The idea that they could simply delete the offensive sentence,

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” … due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.”

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from their article and then carry on as though it never happened is just so wrong. And I don’t do well with wrong.

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By now, I’d imagine that many of you following the story have become familiar with Dr Brian Skotko. (He’s the guy in the funny pants pictured above.) Dr Skotko is a nationally renowned Down Syndrome specialist at Children’s Hospital Boston. He also happens to have a sister who has Down Syndrome. (She’s the lady with the radiant smile in the picture with the guy in the funny pants.)

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Dr Skotko wrote an utterly fabulous post yesterday called Mock my Pants not my Sister. The post made headlines in the Washington Post, Boston Business Journal and Boston Magazine.

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But the post was just the beginning. Dr Skotko also went on Fox News 25 to talk about GQ’s gaffe and to urge them to use it as an opportunity to teach. (Sound familiar?)

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He also wrote a letter directly to GQ’s editor and sent some wonderfully retweetable tweets to @GQMagazine and @GQStyle.

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Click HERE to read Mock my Pants not my Sister.

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Click HERE to watch him on Fox News.

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Click HERE to read about some of the impact and reach of his post yesterday.

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Follow him on twitter at @BrianSkotko

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Thank you, Dr Skotko, for your voice, your leadership, and your heart. 

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As the parent of a child with special needs, my heart soars watching you in action. A sibling with such fierce determination to make the world a better place for ALL of our children is a gift beyond measure.

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GQ can talk all they want about fashion trends that come and go, but you, sir, are a gentleman with true style. Thank you. 

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Oh, and I love your pants. But what do I know? I’m from Boston. 

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In closing, I will say the following. I desperately hope that GQ makes this right – or at least as right as is now possible. I hope to God they stand up and take responsibility for their egregious behavior and use their gaffe as an opportunity to educate themselves and their readers about respect for human dignity. About why words matter. About how to apologize. It is, after all, the gentlemanly thing to do.

.

GQ fashion fail

**

In a recent article, GQ Fashion rated the best and worst dressed cities in the nation. Boston didn’t fare so well, coming in dead last.

I can’t really defend my fair city on this front. We ain’t exactly Milan. However, the problem wasn’t so much what they said as how they chose to say it. They referred to the city’s fashion sense as “a kind of Style Down Syndrome, where a little extra ends up ruining everything.”

I don’t think I need to tell you the myriad reasons why I found this troubling, but if you’d like to read a wonderful post that lays it out extremely well, I highly recommend this one — Denying Our Children’s Humanity for a Laugh.

GQ has since changed the line in the story, but so far they seem to have done so without comment.

My thought it this: anyone on Twitter? I am! You can follow me at @diaryofamom. So is GQ Fashion. You can follow them at @gqfashion. And then together, we can use this great tool to tell them that words matter. That our children’s dignity matters. That people with special needs – extra chromosome or otherwise – are not “ruined.”

I have sent two different Tweets so far. Please feel free to retweet either of them or to copy them as your own if you are so inclined. They’re all yours to do with as you please.

I’d love to start a respectful dialogue – to use this gaffe as (yet another) opportunity to teach the rest of the world about our children.

Yes, it gets tiring. Yes, it gets frustrating. Yes, we get really God damn angry. But sadly we can’t change anything with anger alone. If we could, we’d be done by now.

So, anyone want to join me? Here’s what I wrote:

diaryofamom jess

 .@gqfashion words matter. please take this opportunity to educate yourselves and your readers about what it means to respect human dignity.

9 hours ago

and

diaryofamom jess

 .@gqfashion ”… a kind of Style Down Syndrome, where a little extra ends up ruining everything.” – Why this matters - http://specialchildren.about.com/b/2011/07/18/denying-our-childrens-humanity-for-a-laugh.htm

8 hours ago

Hope to see you on Twitter!

ready for our closeup

OK, guys. If you had any lingering doubts about my undying love for you, I feel pretty confident that the following will put them to rest once and for all.

You see, dear readers, I’m about to show you – and in so doing make accessible via the Interwebz FOREVER – photos of myself looking pretty much like arse.

Why? Well, because a) I think they demonstrate a really fabulous tool for our kids, b) I’d like to believe that I’m not really vain enough to care (I am, but I’d like to believe that I’m not) and c) my kid sure as hell didn’t care what her Mama looked like when we took the pictures.

So ..

Deep breath.

Shake it off.

Here we go.

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The other night, between shower time and bedtime (hence the wet head), Brooke and I played with the Photo Booth feature on my laptop. Brooke LOVES Photo Booth. She can sit in front of it for ages, playing with the various effects and making silly faces for the camera.

Her particular favorite is making herself into twins, a concept that, while nifty from a visual perspective, sorta scares the bejeezus out of me.

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Doesn’t mean I wasn’t going to give it a shot though. Hey, Luau, look! You think I drive you crazy now? Imagine if there were TWO of me! (Insert evil laughter here)

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We played around for a while. At one point, Brooke decided I needed a royal blue boa. And who doesn’t really?

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I think that was one of the thousand pictures for which Brooke directed us to ‘sing opera’ though it also might be from the batch in which we were ‘saying poop’. Cause hey, who doesn’t like to say poop? Try it. It’s surprisingly entertaining.

We even tried out this nifty Andy Warhol effect. I thought it was kind of cool. Mostly cause you can’t see the dark circles under my eyes. Brooke? Not so much.

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But then I had an idea. Like a big idea. Like a stop the presses this could be REALLY useful for my kiddo’s development kind of idea.

Don’t you love those? Those perfect moments when a fun activity suddenly lends itself perfectly to something that you work on ALL THE TIME and the next thing you know you’re working but it doesn’t feel like work at all? Uh huh, like that. Nifty, right?

And that’s how it happened, my friends. Practicing emotional recognition and identification became FUN.

We started with SLEEPY, cause that one’s our favorite.

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Then we tried SURPRISED.

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The coolest part was that Brooke could study my face at the same time that she looked at hers. When she had the tolerance for it, we talked a little about the various elements of each face. For example, what are the clues we can use to identify surprise? Mouth agape, face pulled back at the neck, eyebrows raised, crinkly forehead. She worked on making our expressions match. Pretty cool, right?

After surprised, she wanted to do her second favorite after SLEEPY. What, you had to ask?

HAPPY!

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It’s been extremely interesting to watch the evolution of Brooke’s on-demand smile. Even when she’s actually happy, she doesn’t tend to smile. It’s when she laughs that her face lights up and we see what we think of as a ‘happy’ expression. You can see how difficult it is for her to create a typical smile here. Anyway, that’s a whole post unto itself. Moving on ..

How about SAD?

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I love that she insisted we add the hands in ‘for drying the boo hoo tears.’

Then MAD. Grrrr.

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Then Brooke requested SILLY and well, who can resist a little silliness?

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For the record, she calls that face I’m making ‘the hot dog bun’. Too much information? Yeah, probably. Sorry.

Next we tried SCARED.

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OK, I can’t help it – doesn’t Brooke look like she’s doing Marlon Brando here? We just have to teach her to say, “I’ll make you an offer you can’t refuse.”

No? OK, maybe it’s just me.

Next we toned it down a little with NERVOUS.

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OK, so they can’t all be perfect.

But now we have a FUN way to work on them!

How do YOU work on emotional identification in YOUR house? I’d love to hear your ideas!

my little monkey

Yes, it’s Saturday.

No, I almost NEVER post on weekends.

But I think you’ll see why this absolutely, positively couldn’t wait until Monday.

The following took place yesterday morning when Luau dropped Brooke off at ESY. Yo B had told us about it the day before, so Luau, Katie and Brooke showed up at camp a little early to see if she could do it again.

This feat has been eight years in the making.

One more hurdle crushed.

One more challenge tossed to the curb.

Hey, Motor Planning and Coordination disorders, kiss my kid’s ass. Yeah, you too Pervasive Anxiety. 

My little monkey is doing it.

All by herself.

I’d shared this with a couple of close friends yesterday.

One of them wrote the following in response.

That girl will move mountains, Jess. Big, hulking mountains. And she will curtsey when she has finished.

Don’t you just love that?

I may just frame it.