hard is never the only story

*

I knew I’d write a New Year’s post of some sort. When you write compulsively anyway, the siren song of a manufactured call for reflection is just too much to pass up.

I’ve had no chance to get near the computer for the past few days, but that mattered not. ‘Writing’ to me has become far less a physical act than it is a mental exercise. So I spent the last two nights writing, as it were – toying with words, parsing them, rearranging them and editing them in my head. (In case you ever wondered what I do at two a.m., now you know.)

There was no question of what tone the post would take. There was no threat of it feeling remotely melancholy nor containing so much as a faint sense of nostalgia. Instead, I knew from the start that the post would carry an air of defiance. Of good riddance. Of ‘Hey, 2010, don’t let the door hit you in the ass on the way out.’ Of ‘Thank God it’s over’-ness.

2010 was not an easy year for my family. In fact, it was one of the most trying on record. And in a life that’s been anything but a straight line, that’s saying something. I couldn’t – or wouldn’t – or, well, let’s just say I chose not to – write about what was happening in the background of our lives this year. Instead, I kept my focus tight on the main characters in our story, steadfastly shutting out that which I’d deemed inappropriate for public consumption.

So there was little to no mention of the nagging fear that dominated most of 2010. There were no posts about the nearly endless string of sleepless nights, no entries delving into the often painful self-reflection, desperate frustration or overwhelming insecurity that the year’s events precipitated. And yet, that was the year in a nutshell. It would be pretty easy to look back and say unequivocally that 2010 just plain sucked.

I planned to resurrect a favorite quote from T.S, Eliot’s Little Gidding. It’s one that I’ve used before. It’s even the very same one that I put on our Christmas cards this year, at least in part. The one in which I knew some recipients would sense a hint of not yet faint bitterness, while others wouldn’t read into at all.

Last season’s fruit is eaten

And the fullfed beast shall kick the empty pail.

For last year’s words belong to last year’s language

And next year’s words await another voice.

And to make an end is to make a beginning.

I even thought about trying to hunt down the origin of the expression, ‘*%#@ you and the horse you rode in on’ to add a little color to 2010′s grand send off. I mean, if you’re going to do it, might as well do it right.

But then something changed. I don’t know why. I’m not sure exactly when. There was no single, perspective changing event. But I suddenly found my stark, unforgiving memory beginning to soften.

I started to remember that although 2010 was hard – even really, really hard – it had contained some really wonderful moments.

There were watershed moments in which years of work came together and progress – undeniable, real, tangible, HUGE, previously unimaginable progress took shape.

There were blissful moments of unprecedented freedom.

There were cherished moments spent with each of my children, with my husband, with all of us together as a family.

There were walks with friends.

There was a vacation – God it seems like a lifetime ago – but there was a vacation. There was a kite and a beach and laughter. There was a milestone. And then another.

There was a play date and then another play date.

There was a friend.

There was the very first field trip I got to chaperone.

There was a play.

There was a dog. Holy hell, there was a DOG. Who ever would have believed we’d get a dog? Us – a family with a child TERRIFIED of dogs. And not just a dog, but Winston.

There was the Inclusion Committee and the Panel on Learning Differences.

There were revelations realized and bridges both built and crossed.

There was circular gratitude and respect.

There were new friendships forged.

There was Mama camp.

There were long summer days by the pool.

There was a movie – a whole movie in a theater for the first time EVER.

There were new favorite colors.

There were rides on a flume.

There was sisterhood, both familial and chosen.

There was family.

There was the Godspell dress rehearsal and the Mary Magdalene doll.

There was support.

There was faith.

There was friendship.

There was community.

There was love.

Yes, there was an abundance of love.

( ed note: I wish I had the time or the inclination to make links of all those. I have neither, but each and every one of them can be found within the last twelve months of posts.)

So, where will I leave 2010? Where will I end the retrospective and what will I choose to carry forward into 2011?

I’ll leave it at this -

2010 was hard. Yes, I’ve said that repeatedly, but trust me – HARD. Nearly comically so at times. And in many ways I won’t be sorry to see it go. But if I’ve learned one thing on this crazy ride, it’s that as overwhelming as the hard stuff might be at any given time, hard is never the only story. And if we wish the time away and long for nothing but kicking the years in the ass on their way out the door, we might just wind up denying ourselves a long list of really beautiful, life-changing memories.

I won’t miss the lows, but I will carry their lessons as I continue down the road. I will walk into the new year holding them close. But they will not be the only souvenir of the year. They will be right next to the now very long list of good – really good – memories that are also etched into my being. And I will be grateful for the blessings – all of the blessings – of another year in this crazy life.

I wish you and yours happiness, health, peace, progress and joy in the New Year. And God willing, a lot more sweet than hard.

And an abundance of love.

work

*

She never quite leaves her children at home, even when she doesn’t take them along.

~Margaret Culkin Banning

*

My sweet girl,

I wanted to go with you

I need you to know that

When you came to visit me at work

I know it wasn’t easy

I know it wasn’t where you wanted to be

You said it over and over again

‘I want to go home. I want to go home.’

No one could miss the fact that you weren’t happy there

You were confused and frustrated that Mama’s computer didn’t play your games

The lights were bright

People were talking in different directions

It’s far from ideal, I know

But then I showed you the white board and the dry erase markers

And in an instant, everything changed

‘I will draw me as a princess’ you announced

And you did

And your ‘friend’ – she’d be a princess too

So you drew Sabrina

The girl you met that one time that you went to the sunday school class

Three years ago

And you were happy, feverishly coloring in the princess dresses

One pink, one red

I wanted so badly for Mama’s work to be a place you’d like to visit. It broke my heart when I’d asked the day before if you’d wanted to come on a day this week when a couple of other kids would be visiting. You’d said, ‘NO’ without hesitation, then added an emphatic, sing-song ‘SORRY!’ for good measure.

But for a few minutes at least, stopping by quickly with Daddy to drop something off, you were happy there. An open door for next time. All I can ask.

When it was time for you to leave, I said, ‘OK, baby girl, it’s time to go now.’

I knelt on the floor to hug you and you said something.

You said. ‘Mama, I want you.’

I stayed frozen in the moment, hugging you in the middle of the floor. An absurd place to be, but there we were. Your long, lean arms were wrapped around my neck. There was no space between us.

‘Oh, honey,’ I said, ‘I want you too.’ I whispered in your ear, ‘Thank you for telling me that. I want you too.’ And then I told you it was time to go with Daddy and that I’d see you later at home.

You didn’t let go. (You always let go. Hugs don’t last like that with you. Ever.)

‘I want to go home with YOU’ you said.

And I split right open there in the middle of the floor.

I searched for my game face.

You see, my little love, Mama is always Mama, but at work, well, Mama doesn’t have the option of splitting open in the middle of the floor. (Which probably explains why it happens so much at home)

You finally had the words to tell me what you wanted. And you did – so perfectly, so succinctly, so beautifully. And yet, in that moment, I couldn’t give you what you were asking for.

So I hugged you for as long as your little arms stayed wrapped around my neck.

‘My girl wants me,’ I thought. ‘My girl wants me.’ I could have clicked my heels together in that moment. Or sobbed. What can I tell ya, little one? Sometimes cloud nine comes equipped with a stake through the heart.

Last night we put The Script on a loop, remember?

This time it was me that had to hear it again and again – me who needed the comforting reassurance of familiarity.

‘Brooke, do I like being away from you?’

‘No, you like being WITH me’

‘That’s right. So what happens when I’m at work?’

‘You MISS me!’

You took another run at me as you said your last line, trying to ‘nick’ me over, as you say. I let you knock me down and we rolled to the ground together in a single giggling heap.

I once found out that when asked to describe me, a colleague had said, ‘she’s great at what she does, but what you need to know about Jess is that she’s a mom. First and foremost, it’s just who she is.’

It had surprised me at the time. It’s true of course that I’m a mom before all else, but it surprised me to hear it in that context. I’m sure it sounds silly to you that I was surprised, but I’d thought I’d done a pretty good job of compartmentalizing my life. (I can just see you reading this someday, rolling your eyes and laughing. Oh God, how I hope you roll your eyes and laugh at your mama someday.)

My love, I need you to know that I wanted to come with you. I need you to know that, despite your big sister’s entreaties to the universe to ‘somehow make sure that everyone can just get all the things we really need for free so that we can all be together all the time like it was in the history days,’ life just doesn’t work that way. Someone needs to pay the bills, baby. And I’m grateful to have the wonderful job that I have, which is why I feel such a tremendous responsibility to do it well. Someday I hope you’ll understand that. How lucky we are that mama CAN work.

As you left, I put my game face on and went back to work. I was stronger, lifted by the fresh reminder of who I do it for every day, why I’m really there.

And torn to pieces by the overwhelming fear that you may not understand any of that.

I love you, my sweet girl. More than anything in the whole wide world. Remember our other script, baby? The one we say when we’re lying on your bed when you’re supposed to be sleeping? The one that we said last night as we stared together at the ‘moon’ you’d made from the flashlight’s beam on the wall -

‘What would I do for you, Brooke?’

‘ANYTHING, Mama!’

‘What wouldn’t I do for you?’

‘NUTHIN, Mama!’

Indeed.

Mama wants you too, my angel.

Mama wants you too.

*

christmas 2010

*

Although it will be Monday when you read this, it is Sunday night as I write it. The weather outside is well, frightful. The fire inside is delightful. But the big house in which we live is apparently not big enough to keep my girls from grating on one another’s last nerve.

I can’t say I blame them. Forty-eight hours nearly atop one another takes its toll. Add in the excitement of Christmas (which is a nice way of saying, “Whose big idea was it to mess with my predictable, structured life, damn it and what are all these people doing in my house?”) and then stir in a blizzard just to ensure that no one can leave the house and well, here we are.

So things being what they are, I’ve got a couple of options as I see it. I can wallow in the moment. I could join my older daughter in an oversensitive huff, roll my eyes at every turn and decry the unfairness of it all to anyone within earshot. I admit, it has its appeal.

Or, I could take my cue from the little one and simply wander away when it’s too much. I could tag out to Luau. I could steal the Snuggie that Katie got for Christmas, sneak upstairs to the office and dive headlong into yesterday’s photographs, searching for those that captured the magic of the day.

So yes, I’m now wearing a Snuggie, if that’s the appropriate verb. I apologize for burning that image into your head, but truth be told it’s pretty dang cozy and well, absurdly practical. And while I snug, I’m searching and sorting and parsing and cropping. And most of all remembering.

I’m remembering a day that worked. A day in which every member of the family participated in the celebration of the holiday in his or her own way. A day upon which compromises were struck and expectations were sent out to sea. A day in which any unnecessary demands were dispatched. A day when small prizes were treasured and time was valued above all else. A day that never would have been possible just a few short years ago.

And so, here it is. The day in pictures, or at least a few of them …

*

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The Tree

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Gratuitous Winston shot

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Brooke had to get ALL of her Sesame Street Friends

To introduce them to their latest addition – Berry Lou

No, I’d never heard of her either, but thankfully someone on Ebay had

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Katie helping Brooke open her gift –

Pete the Repeating Parrot – An echolalist’s delight

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With much fanfare, Mary Magdalene finally makes her debut

*

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And ‘meets’ Jesus

( ed note: The tenderness with which Brooke is touching Mary in this photo is enough to kill me. The moment was not unique; there are scores of pictures like this. I can’t stop looking at them.)

*

*

Yes, that’s the Burt hat that I said no to on Katie Day

Can I help it if Santa said yes? The guy’s a pushover

*

*

Yes, it was a good day …

*

A day in which an entire family – Mama, Daddy, Sisters, Grandparents, Aunt and all, gathered to honor the most important tradition to its youngest member.

Despite Mama singing disastrously off key, the day was complete as we all sang Happy Birthday to a very special guest …

*

*

Hoping yours was a very Merry Christmas.

Ed note: Photography credit goes to my Mom’s husband, the wonderfully talented Grandpa DD. (Except for the video, which was taken on my phone, in case that wasn’t obvious.) Thank you, Grandpa DD for the wonderful memories of the day! If anyone in CT is ever looking for a photographer, he can be found at Terrabyte Studios.

stories

*

I’ve waited too long to write. The stories have begun to pile up in my head, listing like a pile of sweaters in an attic, desperately close to scattering about the floor in a chaotic array of texture and color.

I’m trying to hold the pile together. There are stories in there that I’m simply not ready to store away. I’ve leaned the pile against a hip to try to keep it in place. My hands are full. God, they are so full.

Full with working and shopping, with finding and wrapping, with soothing and guiding, with baking and merry-making, with wiping tears, with sewing and card writing, with hiding the new med in yogurt and praying it will be OK, with wish-fulfilling and friendship mending, with elf on a shelf moving, with lists – endless, endless lists – with the day-to-day business of life.

But the stories. The stories are always there.

There’s the story of the autism dad who reached out to me, who opened his heart (and his bank records) to educate me about app creation and who, in so doing, convinced me unequivocally that the anger and frustration that was directed toward him was desperately misplaced.

There’s the story of the incredible class and maturity that dripped from his e-mail to me days after our initial interchange in which he wrote, “I’m glad my feelings got hurt the other day. Good things have come of it.”

The FREE software that he has already given to some of you and that he is eager to give to more readers who cannot afford to buy his app*.

I want so badly to give him his due, but the post remains half-written as I try to simply wade through the days.

But the stories. The stories are always there.

The story of Katie coming up to me with a book in her hand, delicately wrapped in a red satin bow. “Mama,” she said so softly I had to lean in to hear, “I want to explain how important this is to me. How much it means to me. It’s something really special. I want you to read it.”

The story of how she handed me the book, called A Crooked Kind of Perfect and then just stood there, quietly, expectantly – watching me. How I was taken aback by how small she looked in that moment, how young she really still is despite her recent headlong surge into tweendom.

How when I read the description on the back of the book, I instinctively reached for her when I saw the line, “In the end, resilient and resourceful Zoe finds perfection in the most imperfect and unique situations, and she shines.”

How I promised her that I will read the book and return it to her as soon as I possibly can. How I can’t for the life of me fathom how or when I’m actually going to read a book right now, but how I swore to myself that I would because it matters to my girl.

How a gift that I don’t even get to keep is apt to be my very favorite this Christmas.

There’s the story of how I planned a luncheon for the Special Education Aides in our school and then didn’t get to be there. How Luau stepped in and picked up food and hung balloons and read the words I’d planned to say myself. How grateful I was that he was there. How he formatted and framed twenty copies of my favorite quote so that each and every one of them would know just how much they are appreciated.

*

One hundred years from now it will not matter how much money you made, what kind of car you drove, what sort of house you lived in.

One hundred years from now, the world will be a better place because you made a difference in the life of a child.

*

There’s the bigger story of how Luau has stepped into so many of the roles that I’d carved out during my time at home, and how I really should have told him already how very much it means to me that he has.

There’s the story of the Mary Magdalene doll and the absolutely fabulous costumer from Godspell who offered to help clothe her – and who did an AMAZING job. There’s the almost unbearable anticipation leading up to tomorrow’s big unveiling.

There’s the story of my dear friend, Drama and me going back and forth via text last night rewriting Christmas carols. How all night I was singing to the tune of “Walking in a Winter Wonderland” …

Later on, we’ll conspire

With the advocate we’ve hired

To create an IEP

An education fair and free

Walking in this Autism Land

*

We’ll pay for therapies by the hour

And the Internet we’ll scour

To find that one thing

That God-willing will bring

Our babies out of Autism Land

**

And then there’s the story of how, with seven hundred and ninety-three things left to do today, I have squirreled myself away for the last hour in the office and left the world waiting while I’ve banged on the keyboard.

Because even when it feels impossible – or maybe ESPECIALLY when it feels impossible – I have to find a way to release the valve. To straighten the pile. To gather myself together to face the lists – the endless lists – and to be reminded that in our own way, we really are living a crooked kind of perfect.

I hope you can find some time for you, too.

**

* Steve Maher, developer of Behavior Tracker Pro, has generously offered to provide free software to low-income or financially struggling readers. Please e-mail him directly at steve@behaviortrackerpro.com to request a code. Thank you, Steve!

all along

**

Although my recent return to work has made this the most harried holiday season in recent memory, there has been something particularly magical about this Christmas. Even as I’ve run around town like a headless chicken in search of gifts for the eight hundred and thirty-seven people on my list, I’ve felt it. Even as I’ve defiantly turned the lights out and walked away from rooms that desperately needed to be tidied and cleaned, I’ve known it. Even as I’d told friends and family that I simply won’t be able to send their gifts in time for the holiday this year, my heart has been full.

This Christmas has been different because, as I’ve said to anyone who would listen, THIS year Brooke GETS it. Heck, I said it to you.

She gets every bit of it. She gets the Santa part and the reindeer part and the asking for presents part. She gets the wanting part and the waiting part and is even starting to come around to the maybe not getting EVERYTHING on one’s list part. She gets the Elf on the Shelf part. The first words out of her mouth EVERY SINGLE morning are, “Where’s Scouter?”

She gets the giving part – at least sort of. At the local Kid’s House of Exorbitantly Priced Do It Yourself Arts and Crafts she chose figurines to paint as presents for the family members that will be with us on Christmas – *spoiler alert* – Dora for Grammy, Blue for Grandpa DD and Elmo for her Aunt Michelle.

She gets the advent calendar part. Every night before bed, she searches her advent elf’s pockets for just the right treat.

I’ve been over the moon that my girl is GETTING it, that she’s been a true participant in the process, in the traditions; in Christmas. It’s a whole new world for us.

But the other night there was a hint at something. Something big. Something that knocked me on the head and reminded me that I have been looking at my girl through MY lens. And forgetting to look at the world through HERS. And that if I had been looking through hers, I wouldn’t have been able to forget that there’s always, ALWAYS, a whole lot more than what I THINK I see.

Come closer, my friends. This is important.

We were in the basement, hauling up the last of the Christmas decorations. I was covered in red and green as I tried to make the most of my two arms in an attempt to minimize trips. I walked slowly toward the steps – a wreath slung across one shoulder and a stack of table linens on the other. Both hands were full – one with the kitchen Santa, the other with his cookie baking wife, Mrs Claus. A basket of silk ribbon was precariously balanced in the crook of my left arm.

Brooke stood in front of the shelves, holding another Santa by his hat. “C’mon, baby,” I yelled back. “Let’s make a trip up. You carry your Santa.”

She didn’t move.

“Brooke, honey,” I said, “This stuff is getting heavy. I’m going to drop it upstairs, OK?”

She didn’t move. Instead she said, “Mom, where’s my tree?”

The wreath was beginning to dig into my shoulder. “What tree, honey?” I asked.

“My tree,” she said. “That goes in my room. With Zoe on it. And Big Bird. And Elmo. But NO Cookie Monster. Mom, where’s my tree?”

Years ago, I bought the girls their own little tabletop trees. While Katie set about decorating hers, Brooke barely took notice of hers. Katie took her time choosing garland and tinsel, then took great care in picking exactly the right ornaments. For weeks on end we wandered through the aisles of ANY store that sold decorations. She was determined to find just the right ones.

Brooke simply didn’t seem to care. I showed her ornament after ornament trying to solicit an opinion – or at least a reaction – but none was forthcoming. Finally, I stopped asking and chose them for her. I found adorable beaded garland and strung it around the colored lights. I searched high and low for ornaments that I thought she’d like to look at. I found Sesame Street and Dora, even Blue’s Clues. And when it was finished, I put it into her room, just like her big sister’s.

***

I carefully laid the wreath on the floor. I set the ribbons down along with Mr and Mrs Claus. I walked over to my girl and pointed to where her tree was sitting on the shelf, hidden behind two others. “Do you want to bring your tree upstairs, Brooke?” I asked.

“I do,” she said.

She walked next to me as I carried the small tree up two flights of stairs. She chose a spot for it and together, we set it down in her room, on her dresser, right where it had always been. And right where she’d known it belonged.

Later that night we lit her tree before bed. As we snuggled together in the warm glow of the lights, it hit me.

Brooke knew all along. She GOT it all along. For the millionth time, I was the one who didn’t get it at all.

**

echo (on hopeful parents)

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I’m at Hopeful Parents today, reflecting on yesterday’s post.

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

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

-> CLICK HERE <-

What are you still doing here?

Go!

 

prayer

**

Brooke, summer 2010, stopping to ‘pray’ (with Isa the Iguana) in the middle of the local play space

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Brooke will often tell me that she is going to pray. She will say something to the effect of (I can’t remember the exact line right now), “”You stay here. I’m going over there to pray now.” I’m sure you won’t be shocked to hear that it’s a line from Godspell.

She is acting out the scene from the movie in which Jesus tells the ‘disciples’ to stay behind as he heads out to pray alone – an obvious allusion to the Garden of Gethsemane, where Jesus says, “My Father, if it be possible, let this cup pass from Me; nevertheless, not as I will but as Thou wilt.”

She looks so peaceful when she ‘prays’, though I’ve always assumed at those moments that she was simply acting out a favorite scene from a favorite movie, as she so loves to do.

Sometimes she will give prayer ‘instructions’. As she sits down and assumes the position, she will tell me – or anyone within ear shot – that to pray, ‘You put your head down like this and close your eyes like this’. Last night, she did just that.

She was lying across the top of the couch, her hands pressed together and her eyes closed.

She said, “When we pray, we either put our head up or down and close our eyes and dream it.”

I’d never heard her say, ‘dream it’ before. I was fascinated by this new addition to the routine.

“You dream it, honey?” I asked.

She acknowledged my question with a quiet, “Yeah” and then added the following.

“And swirl around and feel it.”

So much for simply acting out a favorite scene from a movie. I think my daughter just taught me to pray.

 

 

 

blood from a stone

“But Mom, can I pleeeeease have some more moneyyyyy!”

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“Honey, I don’t have it to give you. Continually asking me for what I don’t have is like trying to get blood from a stone.”

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~ A recurrent conversation from my childhood

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Have you heard about the Behavior Tracker Pro? It’s an app – or more accurately a group of three apps originally designed for iPhones, iPads and iTouches, but now more widely available on other platforms as well, such as Android and Blackberry.

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The apps were created by autism parents, Elizabeth and Steve Maher together with Nick Rudolfsky of Nitrex Pro Inc. As told on their website, the story was that “Liz needed to find a quick and easy solution to the problem of taking data and instantaneous graphing both professionally and personally. Her husband, who had spent the last 12 years as a senior level UNIX systems administrator, suggested using an iTouch application. Steve began liaising with Nick Rudolfsky and Behavior Tracker Pro was the result.”

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It’s a wonderful idea. Revolutionary even. In concert, the three apps facilitate ABA (Applied Behavioral Analysis) data collection, graphing, analysis and sharing like nothing else I’ve ever seen. And from what I’m told it does not fall the least bit short of its marketing as a “Comprehensive ABA Based Autism Treatment Plan.”

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The components of the system are as follows:

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The Behavior Tracker Pro, described by its creators as “an iPhone/ iPod Touch application that allows BCBAs, Behavioral therapists, aides, teachers or parents to track behaviors and graph them.” They go on to say that “The application was specifically designed to support the behavioral treatment plans for children with Autism however it can be used to track behavior in any field.”

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The Skill Tracker Pro, described as a tool designed “to increase efficiency in the instruction of children with Autism. Designed by parents of a child with autism, Skill Tracker Pro (STP) helps automate applied behavior analysis instruction.

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The Team Web Portal, which has three versions, a Portal for Professionals, a Portal for School Districts and a Portal for Parents. The Portal for Parents is described as “an umbrella service where users of BTP and STP take the data they collect and turn it into an effective treatment and educational program.”

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Just above the section marketing the Portal for Parents are the words, “As parents, we know that early intervention is critical. Don’t waste time !”

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This is a product that was created BY Autism parents to be marketed TO Autism parents to help their children learn. In the “In the Press” section of their website three of the seven headlines are “New App Helps Children with Autism,” “Luzerne County Couple Creates iPhone App for Autism” and “Mountaintop Couple Create App to Help Autistic Children.”

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They are very clear about who their product is marketed to and who it is designed to help.  I couldn’t be happier that time, energy and resources are being dedicated to creating tools for our kids. I’m thrilled to see parents teaming up with programmers to tailor applications to our children’s unique needs. I’m gratified to see parents helping one another – filling gaps where they see them and providing new resources to help, as we so often do in this world.

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I wish I could end this post there, and send you off to buy the apps. I’ve been wrestling with this for weeks, but I just can’t seem to let it go, so I’m just going to say it.

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I’m all for capitalism. I am in fact a card-carrying capitalist. I believe that everyone has a right to profit from their hard work. Our economy, in theory at least, is designed to financially reward innovation and creativity and I find no fault in that. I think the ability to make money off of one’s work is a crucial motivator for our society. I also think – or at least would hope – that the rules would be slightly different when autism parents are creating products to help other autism parents.

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I don’t mean to imply that the apps should be free. Certainly not. The creators undoubtedly have significant costs to cover and they have every right to charge accordingly. But the Behavior Tracker is $29.99, the Skill Tracker is $29.99 and the Portal for Parents membership fee is $24.99 PER MONTH. (If you buy a year’s membership it comes to $239.99 representing a twenty percent savings over the monthly fee.)

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To be clear, the membership fees are significantly higher for Professional Accounts, which run anywhere from $59.99 to $139.99 a month, depending on the number of clients for which the provider will be using the portal. But truthfully, I couldn’t care less what they charge the professionals. Professionals charge (us) for their services, are at least at the beginnings of becoming reimbursable by insurance in many states, and well, I’ll happily let them negotiate their own rates. My problem with this is that I think that marketing a phone app to Autism Parents that costs a minimum of three hundred dollars a year is somewhat egregious*.

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There is no secret that autism is expensive. No, I don’t know the numbers – I don’t have fancy statistics at the tips of my fingers and I’m not going to spend my very limited time looking them up. I don’t need to.

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I know what we, as a group, pay out-of-pocket for speech therapists, occupational therapists, high-priced special needs classes, neuropsych evaluations, lab testing, special foods, augmentative communication devices, noise canceling headphones, weighted blankets, swings, social skills groups, chewy tubes .. I could go on for days, but do I really need to? Luau and I pay nearly fifteen thousand dollars a year for Brooke’s specialized services out-of-pocket, in addition to what we pay for a premium insurance plan. I have friends who pay much, much more. If she didn’t get such a spectacular menu of services in school, we’d be paying much more too. And if you’re one of us, you know that.

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So I would say to anyone looking to market products to us that are designed to help our kids, “Thank you. Thank you for taking your time and devoting your efforts to mitigating our children’s myriad challenges. These types of products can be wonderful and could have a significant impact on our kid’s lives and what they are ultimately able to achieve. But please think carefully about how you price them. Please make every effort to make your product accessible, rather than available only to the select few who can afford it. Please, if you really want to help our children, help us help ALL of them.”

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ed note: all quotes and information about the Behavior Tracker Pro, Skill Tracker Pro and the Team Web Portal are from the Behavior Tracker Pro website - http://www.behaviortrackerpro.com/default.aspx.

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**** CORRECTION: Please note – I made an error in referring to the BTP suite as ‘an app that costs a minimum of three hundred dollars a year.’ This is a misrepresentation. If one were to purchase all three of the offered apps, the price the initial year would be $300, but the outlay for the BTP and the STP are one time only. Therefore, the maximum cost in subsequent years would be $239.99. Also, in speaking at length with Steve Maher today, I learned that there is no need to buy all three in order for them to be effective.

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Steve and I had a very enlightening dialogue, in which I learned that it is far more expensive to launch an effort like this than I could have imagined. For Steve and his wife, the apps are currently a money losing proposition. Steve has promised to write to us in detail about the process from inception to launch, to outline the associated costs so that we may better understand them and to discuss the thinking that went into pricing the product.

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Additionally, Steve has offered to provide free software to low-income or financially struggling readers. He has a limited number of free units that he is happy to share where there is need. Please e-mail him directly at steve@behaviortrackerpro.com to request a code.

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I apologize to Steve and his wife, Liz for my error this morning. I am grateful to Steve for his time, his transparency and his generosity. I look forward to passing on the information that he sends.

the question

**

It was seven o’clock on Saturday morning and Luau and I were still in bed. I don’t know why the words that had lived safely in my head for so very long needed a voice at that very moment, but there they were, suddenly at the gate, begging for release.

I waited, took a long, slow breath and then asked the question.

“Hon, do you think it’s realistic to think that Brooke will be able to live independently someday?”

Uncharacteristically, I let the question hang in the air. Typically I’d scramble to add more words – to fill the silence. I’d get defensive about having asked it in the first place and I’d try to explain that I didn’t mean to sell her short, I just thought that we should talk about it or at least, well, you know, start to think about it or …

I didn’t. I simply let it hang in the air between us. The only thing I finally added was, “I’m trying not to ask from an emotional place; I just want to know what you think.”

Luau finally answered. Quietly he said, “I think so.”  We inhabited the silence together until he said it again, though with no more conviction than he had before. “I think so.”

When I heard Michelle Garcia Winner speak some time ago, she talked about the mother of a ten year-old boy who was convinced that her son would be headed off to college some eight years later. Michelle told us that the boy had very limited communication and that it was ‘obvious’ that the mother’s thinking was desperately out of whack with reality. Michelle said that she had told the mother that she needed to adjust her expectations. I won’t get into how that story made me feel at the time nor talk about how it was only part of why I left the conference feeling agitated and upset; that’s for another day. But I will tell you that it has stuck with me.

Somewhere in the back of my head, I’ve always wondered what my expectations for Brooke ‘should’ be. Truthfully, I’m not even sure what they actually are.

My daughter is seven and a half years old. There is no way to know where she is headed, nor what she can do long term. The gains she has made from three to seven have been exponential. If she continues on a path of that kind of meteoric growth, anything is possible. If it tapers off, who knows.

But that has not stopped me from starting a college fund for her. Perhaps Michelle Garcia Winner would call me delusional for doing so, but I believe in my girl. I believe that with the right support, there’s nothing she can’t do. I believe that throughout her life, we will be able to find or create that support. I believe that prognostication is dangerous. And, with all due respect to Michelle Garcia Winner, whose work I greatly admire, I believe that limiting a mother’s expectation of her child is a load of crap.

I could never look at my girl and tell her with either words or actions that I don’t believe in her – that I don’t think that she could do ANYTHING she puts her mind to.

Two nights ago, *my girl talked to Santa*. She sat with him, smiled for a picture and asked him for a gift. Two years ago, that was so far out of reach as to be nearly unimaginable. But if there’s one thing my girl has shown me time and again, it’s that my imagination is desperately limited. Thankfully, hers is not.

So is there an answer to the question? No, not really. The answer remains, “I don’t know.” One of the eight top five hardest things about this parenting journey is the “I don’t know.” But I do know that I will never stop believing that it’s possible.

oh thank god

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Ed note: To anyone who wound up here by googling the words “Naked Santa” ~ First of all, why on God’s green earth would you be googling Naked Santa? Actually, please don’t answer that. Secondly, I can promise that this post is NOT what you’re looking for. Merry Christmas and best of luck!

 

Brooke and Santa, 2010

(In so many ways, my baby’s first Christmas)

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“Brooke, honey,” I said as we walked through the Christmas park, I think Santa’s here. Would you like to go see him?”

“I would,” she answered, then abruptly stopped in her tracks.

“Where’s my list?” she asked, her voice tight with concern.

I explained that her list was at home, but that she needn’t worry as she could tell Santa what she’d like and I was sure that would be fine. She wasn’t convinced. Apparently, that wasn’t the way it was supposed to go.

“We would go home and get it,” she said.

Considering that it had taken us well over an hour to get to the Christmas park, I had to tell her that running home and then coming back simply wasn’t an option.

After asking twelve (or twenty) more times and receiving the same answer, the reality finally set in and she seemed to find peace with seeing him list-less.

We timed it well. *My sister, Jess* and I (yes, my sister’s name is Jess, and no, I no longer feel the need to explain why) waited in line while Luau and Jess’s husband, Ryan took the girls on the very Christmasy (except not) spinning rocket ship ride. When I say that we timed it well, I obviously mean on two fronts – we eliminated the wait for the girls while simultaneously avoiding having to submit ourselves to the torture of space travel. My children learned early on that when it comes to rides, Mama’s a sport unless it spins. Rule #1, Mama. Does. Not. Spin. There are no exceptions to rule #1.

By the time the girls were off the ride and their poor little brains sufficiently scrambled, we were next in line. It was perfect – Brooke had just enough time to see how the process worked without growing antsy or agitated or screaming, crying or running for the hills – all of which were part of last year’s waiting in line for Santa fun.

I decided to let the girls see Santa separately. I figured the simpler we could make it the better. Brooke went first.

Santa held out an arm to her, and was miraculously patient when she didn’t come right away. He read her perfectly. He wasn’t loud or in her face. He acted as if he had all night. He never hurried her along, nor pushed her to sit down for the photo op. He simply waited.

She circled him warily, checking him out from different angles. She then drew back a few feet and stopped, facing him from a safe distance.

“Where are your lists?” she asked.

He looked a little confused. “What’s that, Dear?” he asked.

“Where are your lists?” she asked again.

“Santa,” I said, “I think she’s looking for the lists that you check this time of year. The naughty list, the nice list, you know.”

“Ah, my lists!” he said, “Of course! Well, these days it’s all automated. See, it’s all right here in my palm pilot.”

He pointed at his palm, I suppose waiting for her to laugh. Neither knowing what a palm pilot was nor understanding the pun even if she had, she didn’t. But he recovered quickly.

“I keep the lists out in the sleigh, little one. I sure hope the reindeer don’t eat them!”

Her eyes grew wide. “The reindeer?” She looked around as if she might see the sleigh, then came up with another idea.

She pointed at him and said, “You say Ho! Ho! Ho!”

“I love to do that,” he said. He gave it his best shot and held his wide belly as he laughed. “Ho! Ho! Ho!”

This kid was making him work for it.

“Brooke,” he asked, “would you like to tell me what you want for Christmas?”

She stood stock still for a long moment, staring into the middle distance, conjuring her answer. Santa waited silently. The man had the patience of Job.

“A naked Santa,” she said.

The world grew eerily quiet. I could hear nothing but the ringing in my ears. I took stock of my options. I could yell “Fire!” and grab my kid and run. I could chuckle and give the big guy an elbow to the ribs saying, “Bet you haven’t heard that one before, eh, Santa?” Or I could take the coward’s way out, pretend I hadn’t heard her and pray that he would do the same.

I don’t need to tell you that I chose door number three. Thank God Santa either played along, didn’t actually hear her or heard her but assumed he must have mis-heard her. I’m guessing the latter. Either way, he took it in stride. She did not ask for anything else.

Mrs Claus then asked if she’d like to sit with Santa for a picture. She very gently told her that she could sit on his lap, stand next to him or sit on the bench in front of him. There was no doubt that Brooke would choose the bench. She made her way to it and sat down in front of Santa. When Mrs Claus came over to scoot her back on the bench, I waited for all hell to break loose. It didn’t. I watched in awe of my girl. God, how far she’s come.

Brooke sat beautifully. Mrs Claus told her that Santa was going to lean over her and ever so slowly, he did. When he gently took her hands and put them over his, she let him. Three years ago? Two years ago? Last year? Not a snowball’s chance in hell. But there she was, sitting in front of the same Santa she wouldn’t go near last year, doing her darndest to smile for the camera. I couldn’t wipe the grin off my face.

As we walked away clutching our photo, I thought, “Holy heck, my girl just TALKED to Santa! She SAT with him! She asked him questions! She made him say, “Ho! Ho! Ho!” She GOT it! She really, truly GOT it! All of it. She even asked him for a gift! I .. OK, wait – insert record scratching noise here – What the heck was up with the naked Santa?

You all have seen *her list*. There’s plenty on it – the Godpsell dolls, the Little Einsteins, the plush dolls from Dora, the American Girl Doll, the blocks, the teddy bear – the cat for heaven’s sake. Never has there been any mention of a flippin’ naked Santa. I wondered if I should panic. Or call the authorities. Or wonder what goes on at school.

“Brooke, honey,” I asked, “Did you ask Santa for a nudie Santa?”

“I did,” she said.

“Um, honey,” I began warily, “is that something you saw somewhere?”

“It is,” she answered obligingly.

“Where did you see it, baby?” I asked.

“At [the neighborhood toy store],” she answered.

I began to scan the shelves in my mind. Naked Santa, naked Santa … I was coming up dry until  … Wait! I got it!

“Honey, was it the wooden Santa dress up doll? Is that what you saw there?”

“It was.”

“Is that what you meant by the naked Santa, honey?”

“It was.”

Oh thank God.

My baby talked to Santa. And yes, he’s going to be sure to get her the one thing she asked for.