peeling back the layers

It is Thanksgiving day.

We are not yet halfway through the long drive to Papa’s house, but the troops are restless. We learned long ago that low blood sugar and confined spaces are a combustible mix, so we’re looking for a place to get a quick bite.

We’ve pulled off of the highway in search of a McDonald’s. Katie has eagerly pointed out two Burger Kings, a Wendy’s, a Friendly’s and a Taco Bell, but we’re sticking to our guns. We know better than to venture from the tried and true. Not today at least – not when so much will be different for Brooke, so little familiar. We finally spy the golden arches and send up a cheer.

We scramble out of the car – Luau taking Winston to do his business while the girls and I head straight in so that they can do theirs. Katie offers to take Brooke to the bathroom while I order.

I don’t need to ask what Brooke will eat. A double cheeseburger Happy Meal, please - no cheese. Oh and no pickles, no onions, no ketchup and no mustard. Nothing on the bun but the meat, please. Seriously, nothing. Don’t test me, Ma’am; I have sent back scores of burgers and I’ll do it again.

The kids squirm into a booth while I pour toxic-colored liquid over ice get the drinks. In the next booth over, a man sits alone.

His hair is heavy with grease. He is bundled into heavy layers, which he makes no move to peel off despite the relative warmth inside the restaurant. On his head is a navy blue knit cap that has surely seen better days.

The hat sits cartoonishly atop his head. He wears it too high above his ears, causing it to flop back over itself. A companion would surely have told him that it needed fixing.

I am self-conscious – feeling conspicuous and awkward sitting with my husband and my girls. I try to catch his eye, hoping to share a smile. When it doesn’t work, I look away. I am embarrassed, having realized that I was unwittingly staring at him.

I want to believe that he too is stopping for a quick lunch on his way to a Thanksgiving dinner somewhere else – that like us, he is headed to a place where he will be welcomed and cherished, loved, fed, nurtured and cared for. I want to believe, but my head calls my heart’s bluff. He is eating slowly, taking his time.

The girls dive into their Happy meals and Luau and I grumble and groan at the early kick-off to a day of disastrously unhealthy eating. Nothing like a plateful of grease to warm up for a plateful of starch. Oy.

I try again to catch the man’s eye as he deliberately lifts the lid off his salad. Again I am unsuccessful. I want so badly to somehow convey warmth, or solidarity, humanity, or – damn it, anything. I feel a need to connect, and though I don’t know how, I do know why.

How easy it would have been, I think, for our children in a different time – never diagnosed, never understood – to have fallen away, one by one, from families who would never have known why – why their son struggled in school, why their sister couldn’t hold down a job, why their cousin could never seem to make or keep a single friend, why their uncle insisted on speaking in such hurtful, unvarnished truths, why their brother could never look them in the eye when he spoke – shifty they’d have called him, untrustworthy.

How easy it would have been to have peeled away the layers of family, love and support as he or she alienated them one by one over the years, never quite knowing why it was so damned hard to just be like everyone else. How easy it would be to retreat. To decide that alone – as much as it may have hurt – was easier.

I flash to Michelle Garcia Winner’s conference where she talked about the depression that ensnares so many adults on the spectrum – how to a person, those she’s counseled have expressed their desire to connect with others, desperate to break down the myriad challenges that conspire against them doing so.

I think, as I so often do, of *that first neuropsych* who looked into her crystal ball and told us that our then three year-old daughter would live a solitary life – that as an adult she’d simply prefer to be alone. I feel the familiar anger rise – at an awful doctor peddling a dangerous load of cr@p. I push against it. Not now.

The man glances our way briefly but his gaze doesn’t rise above the level of the table.

We pack it up and get back into the car. As I help Brooke in, I give her a squeeze. We settle in for the long ride ahead – to spend the holiday with people who will make every effort to connect with my girl.

And as we drive, I fight the image of that man – someone’s baby – alone on Thanksgiving, wearing a navy blue hat, folded over, with no one to tell him to check it in the mirror.

And I quietly cry.

thanksgiving – a poem

A Thanksgiving Poem

~ by Katie, age 9

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It’s Thanksgiving day, but the turkeys won’t stay!

The Thanksgiving food is running away!

Potatoes and stuffing

Are running around

The cranberry sauce is headed for town!

“We just have to stop them!”

Said Farmer O’Brown.

So he took out his fork

And his kitchen knife too,

And had a nice big pot

Of turkey stew.

*

Wishing you and yours a very Happy Thanksgiving. May your table overflow with food, your arms with those you love and your heart with gratitude for the gifts that surround us all.

Thank you for being a part of my family’s life and for joining us on this journey. I am grateful – today as always.

 

 

godspell – part two

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I almost don’t want to write this. I’m afraid that somehow the words won’t be big enough or that the joy will escape before I can figure out how to describe it.

I don’t know where to start. I don’t know how words can possibly convey the enormity of the experience. How do you describe light? How do you tell magic? How do you write heaven?

The best I can do is share the pieces. It’s bound to be choppy and a little - OK, a lot - disorganized. Grammar will be summarily dismissed, or at the very least disregarded.

I don’t know how else to do it. There were just so many individual experiences contained within the whole – so many small and not at all small moments that will stay with me (and I dare say my girl too) forever.

**

Like when Brooke came into my room on Sunday morning and the very first words she uttered were, “We get to go to the Godspell play today!”

Or when we explained in the car on the way to the theater that this was a rehearsal – a practice – and that they might have to stop singing in the middle of a song. How Katie sang and I yelled, “CUT!” so that Brooke would understand what might happen. When it became a game and she started calling out songs for her sister to sing.

When the play began and John the Baptist came from behind us singing Prepare Ye and Brooke sat watching the cast – rapt and silent, with a ferocity and intensity and complete, unwavering attention, the likes of which I have never seen and am failing miserably to convey here.

How Jesus sang God Save the People as he was baptized by John, then stepped into his costume and Brooke’s eyes grew as wide as saucers. How she gave voice to the Jesus doll in her arms and pointed his little hand to the stage as she said in her best attempt at a husky baritone, “That’s me.”

How she announced after every score which one would be coming next. How she knew each and every line and each and every song and the order in which they would come.

How the Jesus doll applauded after every scene – his own biggest fan.

How she rolled with the nuances of the show, dutifully pointing out – yet blissfully unruffled by – the differences even as I held my breath, hoping we’d prepared her enough for the fact that it wouldn’t be exactly what she knew.

How the words of each song exploded like fireworks and hung in the air around us. How Luau and I looked at each other through tears as the cast’s clear, strong voices joined together in All Good Gifts. How we exchanged a glance acknowledging that no other words could have meant more in the moment.

We thank thee then, O Father, for all things bright and good,
The seedtime and the harvest, our life our health our food,
No gifts have we to offer for all thy love imparts
But that which thou desirest, our humble thankful hearts!

How Brooke pointed skyward with the actors as they sang Bless the Lord, her favorite of all.

How we listened to the cast’s joyful rendition of Light of the World and I lost myself in a memory. “Mama,” Brooke had asked so long ago, “How do I be the light of the world?”

How even as she begged to go home during the intermission, confused and upset that the actors had disappeared, it was all OK. Yes, even then, when we convinced her to stay and promised her that they would return. How Katie asked to take her to the ladies room and yes, I let them go alone. How they came back without incident and sat back down, ready for the show.

How the director came over during the break to ask if we were enjoying the performance and Brooke told her that she was waiting to hear “Turn Back, O Man, Alas for You, By my Side, We Beseech Thee, On the Willows and the finale.” The look on the director’s face as she watched her tick the songs off on her fingers or the way she stuttered as she said, “Wow, she’s um, wow, she’s exactly right.” And then again as she added, “And then the Day by Day Reprise.”

How she came to life during, “Turn Back, O Man” excitedly telling all who would listen that that was Mary Magdalene.

How I tried to hold back tears as Brooke climbed up on my lap and we listened together to my favorite song, By My Side. How the soft melody wrapped itself around us like a blanket and how I would have sworn that the lyrics were written just for us, just for the moment.

Where are you going?
Can you take me with you?
For my hand is cold
And needs warmth
Where are you going?
Far beyond where the horizon lies

Where the horizon lies
And the land sinks into mellow blueness
Oh please, take me with you
Let me skip the road with you
I can dare myself
I’ll put a pebble in my shoe
And watch me walk (watch me walk)
I can walk

I can walk!

I shall call the pebble Dare
We will walk, we will talk together
We will talk

About walking

Dare shall be carried

And when we both have had enough
I will take him from my shoe, singing

“Meet your new road!”

Then I’ll take your hand
Finally glad

That I am here
By your side (By my side)

How I kissed the top of Brooke’s head, again and again throughout the song, thinking that my girl was WITH me. Realizing in a blessed moment of perfection that we were truly, blissfully TOGETHER. How she let me rock her to the music, swaying in my arms.

How Jesus came over after the show to say ‘Hi’ to her. How he made sure that she’d gotten the poster that the cast has signed for her. How he somehow seemed to get it. How he knelt down next to her, but didn’t get too close. How he was gentle and sweet when she introduced him to his little doppelgänger and how the doll whispered a breathy, “You’re me.”

How she asked the whole ride home if we could invite Mary Magdalene to our house for a playdate.

How she woke up yesterday morning and the very first words out of her mouth were, “I liked the Godspell play, did you?”

How she told me that she thought it was funny when Mary Magdalene was in jail and couldn’t get out until she paid ‘the very last penny of her debt.’

How her aide at school yesterday told me that she was beaming all day. How when Brooke had crawled onto her knees, joined her hands, bowed her head and closed her eyes in class, she had smiled and told her that she could pray, but perhaps not in the middle of the classroom.

**

It wasn’t until yesterday morning that I saw the status that Luau had put up on his Facebook page on Sunday night. He had written, “For three hours tonight, life felt .. typical.”

I had a very different experience. While I don’t take anything at all away from his sentiment, I have to say it was nothing like mine. For me, the night was anything BUT typical. He later told me that he felt like autism wasn’t there. That for three ecstatic hours, it had receded into the background and blessedly, finally, just didn’t matter.

For me, autism was front and center that night. Autism was part of what made the whole thing what it was. There is nothing in our world that compares to Brooke’s pervasive and abiding love of Godspell. Sure, Katie loves Taylor Swift and a show would be a hoot. But does she listen to her EVERY day, google her, watch clips of her EVERY chance she gets? Does she draw pictures of her in Halloween costumes, at the dinner table, riding on a rocket ship? Does she talk about her, reference her, create games and scripts and whole worlds around her? Is she literally imbedded in every aspect of her life? No.

I can think of nothing that comes close.

If Brooke were not who she is – autism and all – that experience would never have been what it was. For her nor for us. While I’m not ready to say that I’m grateful for autism in and of itself – not by a long shot – I am deeply thankful that within it there are moments like this. Moments of grace, moments of joy, moments when judgement is replaced by generosity and kindness and the world comes together to make something wonderful happen for a little girl who deserves nothing less.

Brooke and Jesus

godspell – part one

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The Godspell Workers

Brooke, 2010

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(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:

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1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

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- from the Diagnostic Criteria for 299.00 Autistic Disorder, DSM IV

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**

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It’s not always easy to explain my baby girl’s love of all things *Godspell*. People tend to look a little confused when we try to explain that yes, our second-grader is obsessed with the groundbreaking and historically controversial 1970s Broadway production and the movie that followed.

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Yes, I say, I do mean the show that is, according to IMDB, “a modern-day version of the gospels, opening with John the Baptist calling a disparate group of young New Yorkers from their workaday lives to follow and learn from Jesus” Yup, the one where the characters “form a roving acting troupe that enacts the parables through song and dance, comedy, and mime.” Uh huh, the somewhat trippy, hippy-ish show that culminates when “Jesus’ ministry ends with a last supper, his Crucifixion in a junkyard, and, the following morning, his body being carried aloft by his apostles back into the world of the living on the streets of New York.”

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Ok, maybe I don’t actually say exactly that, but close.

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I can tell you how it all started, though I’m not sure that it really matters anymore. It must have been three years ago now, when Katie was singing “Prepare Ye” in our church’s youth choir. Since she’d never heard the original (and I had always loved the score growing up) I picked up the cd for her so that she could get a feel for the song and its context.

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We began to listen to the music in the car and it soon became a family favorite. Brooke did no more than listen quietly, but back then that was something.

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Eventually, I happened upon the movie in Blockbuster’s bargain bin. Hey, for $4.99 I can be a sport. So I brought it home for Katie, who would watch it politely and just as quickly lose interest. I could never have predicted what would happen next.

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Brooke fell in love.

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The characters may not have actually been given names in the show, but they certainly have names in our house. Early on, Brooke insisted on knowing who they were. She wouldn’t take, “They don’t really have names” for an answer.

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So I named Jesus, of course – that one was easy. And John the Baptist, who, in a completely confusing turn plays Judas Iscariot at the end when it comes time to betray Jesus. And I went out on a limb and told her that the one who plays the devoted temptress was Mary Magdalene.

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Over time, the rest of the cast (or ‘the workers’ as she calls them) became Matthew, Jeffrey, Godspell, Jessie-Lynn, Mary, the other Mary and Mary Carson. Yes, there are four characters named Mary. No, I had nothing to do with that. Also, to be clear, many of them actually have much longer handles than I’ve shared here. For example, Jessie-Lynn’s full name is apparently Jessie-Lynn Ixana Chup Chup Samaram. Listen, I don’t make this stuff up, I’m just here to report the facts.

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For a time, Brooke watched the movie every few days. She’d watch it every day if we’d let her. Her time on the computer is spent googling Godspell videos. She soaks up youtube videos of clips from the movie, community plays, college drama department productions and one that looks like it was filmed in a teenager’s basement. She remembers her favorites and plays them again and again. She knows the actors names and announces, “This is a DIFFERENT Jesus. His name is Mathon.”

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Brooke’s *iPod* is loaded with music from the show . When we go out to dinner and she needs to block out the sound, she plays the soundtrack again and again. Still not understanding that we can’t hear it too, she asks us to tell her who is singing each and every song. She knows which tracks are in the show but not the movie. She quizzes us to see if we remember.

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Our entire world is Godspell infused. At the pool this summer we played the *Godspell ‘Be Careful’ game* in which each character was given a dangerous task to perform and then told to be careful. At home, Brooke draws the Godspell ‘workers’ over and over again. We have hundreds of pictures of the cast. We even have a subset of the workers in costumes – Jesus often dressed as a robot and Mary Magdalene a black cat.

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Last Christmas, the only gift that Brooke asked for was a Jesus doll. Of course, her version of Jesus was the young, afro’ed Victor Garber in a superman t-shirt and clown make-up. Not exactly a featured item at FAO Schwarz, so Mama had to figure out how to make one. And I did. Don’t believe me? *Click here*

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Whenever we’ve been away from home for a while, Brooke finds an opportune time to ask (usually quite loudly in a very quiet place) when we are ‘going home to Jesus.’ She then pantomimes a hug while declaring her intention to give Jesus a BIG hug when she gets home to him. Uh huh.

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This year, *just as her sister predicted*, she asked for a Mary Magdalene doll. And yes, she will get her. I’m dreading sewing on that damn hair again. Shuddup.

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The bottom line is, Godspell is a HUGE part of our world. I don’t really know how else to convey just how HUGE, except to say that sometimes I’m convinced it IS our world.

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So when I heard that a community theater not too far from where we live was doing a production of the show next month, I nearly jumped out of my skin. And when I called said theater and stuttered and tripped over my words and held back tears as I tried to explain to the lovely woman who answered the phone that my daughter has autism and that Godspell is everything to her and that we would be happy to buy tickets to a performance and well, we WILL buy tickets to a performance, but see, here’s the thing, we’re really worried about her ability to make it through the whole show – or at least to sit through it in a way that wouldn’t be disruptive to the rest of the audience because she doesn’t really understand that there’s a difference between being AT shows and being IN shows and so she likes to sing along, and for heaven’s sake this IS HER SHOW and she knows every word and every song and there’s no way she’s going to sit there without singing and pointing and happily squealing and saying things like, “That’s a DIFFERENT Jesus” and well, is there any way that maybe, just maybe, they would think about letting us come to a dress rehearsal? And then the nice lady said that she’d ask the director and the producer but she couldn’t imagine them saying no and then I finally got the answer nearly two weeks later and IT WAS YES! and suddenly it was really happening the very next day – which is actually now yesterday – and my baby was really gonna see Godspell – which she did last night.

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Tomorrow I will do my best to wrangle the evening into words. For today, I’m living in the space that it created. A space so much like the story itself – where the players leave their everyday lives behind and together celebrate Love, Gratitude, Faith and Joy.

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And though I will somehow write it all into tomorrow’s post, if I had to, I could sum it up in one word.

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Magic.

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To be continued ..

bestowing honor

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This is far too incredible on far too many levels for me to sully with an editorial. I post it here not to add my comments, but to ensure that everyone in my world has a chance to see it.

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yo

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OK, so here’s the deal. I really don’t have a post ready for today. Of course that doesn’t mean I don’t have a truckload of blog fodder – my children never leave me empty-handed; but it does mean that I didn’t have the time to commit to turning any of it into something at least reasonably readable. Incidentally, think that last sentence proves its own point.

However, I felt like we all could use a smile. Besides, it’s Friday, so whatever is up today will be Diary’s home page for the weekend. And as important as I felt like my last post was to share, it’s also some heavy stuff. I’m just not sure I can handle three more days in the muck.

So, here’s what I’ve decided to do about it. I hope you’ll indulge me, because it’s pretty silly. But it’s also a lot of fun. Well, at least for me.

One night a while back, Luau took Katie out to dinner while Brooke and I stayed home and ate in. (If you’re not sure why we would split up that way, I’ll assume you haven’t read THIS.)

While they were out, Brooke lost a tooth. Lost teeth are a pretty big deal around these parts, so Katie was all kinds of excited for her sister. To celebrate, she asked Luau to help her make a video message to send home to her. You know, just like when we were kids. Except not.

In the video, she did an impression of DJ Lance Rock, the trippy, slightly disturbing host of one of Brooke’s favorite shows, Yo Gabba Gabba. Brooke LOVES Yo Gabba Gabba. Remember this?

Yep, that’s Foofa, from Yo Gabba Gabba

(With her sister, the bird who went to Vegas to become a movie star, but that’s another story. Moving on .. )

Anyway, here’s DJ Lance. Try as I might, I couldn’t find a video clip of him doing the show’s introduction, but I think the impressions will hold their own without it. Just keep this guy in your head while you watch. And then think of something else as soon as you can, lest you have some really weird dreams tonight and wake up cursing me.

Ok, so here goes. This is what Katie sent to Brooke …

Brooke melted into hysterics. After watching Katie’s DJ Lance at least twenty-seven times, we managed to make two (sort of) coherent videos to send back. Here goes …

and then …

*

Yup, that’s it. No soapbox, no tears, no calls to action. Just a little fun. Cause dang it, don’t we all just need a little fun sometimes?

Have a great weekend!

adam

**

Dear (People in Charge),

I would like to make you aware of an unfortunate occurrence at (your community center) last week involving my seven year-old son, Adam. Although I spoke at length with Carol (your director of services) just after it happened, and was very appreciative of her time and compassion, I left that meeting feeling that I needed to do more.

My son Adam has autism and it isn’t always possible for him to participate in the activities that his typical peers enjoy. I was therefore thrilled when I first approached Carol and Steve, the coach of the Veteran’s Day Basketball clinic and they assured me that Adam would feel welcome and would be well cared for over the course of the day. They were open to my presence at the clinic and made it clear that they understood Adam’s social challenges. In light of the center’s reputation for welcoming children with special needs, I felt comfortable with their assurances.

As intended, I stayed on the center’s campus throughout the day and periodically looked in on the clinic. I was therefore observing the gym when the following incident occurred.

Coach Steve and his assistant led the kids through an elimination game. The kids were eliminated one by one until ultimately, the competition came down to Adam and another child for the win. At this point, I watched as the kids were told to move themselves to the side of the boy that they wanted to win the game. I then watched in horror as all eighteen boys – every single one of them – marched to the other boy’s side, leaving Adam standing completely alone.

As you can imagine, this would be upsetting for any child. To a child with autism – a social disability that by definition makes making and keeping friends desperately challenging – it was devastating.

Worse yet, there couldn’t have been any question about how the children’s loyalty would be divided. When Carol, Steve and I had spoken, I had discussed at length the fact that Adam did not know anyone coming into the clinic. A child who struggles with the simplest social pragmatics is not likely to win friends over the course of an afternoon. Sadly, the outcome – and Adam’s subsequent humiliation – was inevitable.

We are still dealing with the ramifications of that day. Adam continues to perseverate on the event, asking why none of the boys liked him and wondering aloud what he might have done to have made them all root for the other child. It is obvious that this is not something that he will quickly move past. As a mother, it is heartbreaking.

Additionally, there was a completely inconsistent award system that left Adam confused and further dejected. Coach Steve explained to me that he had given coins to some of the boys who had won games to spend as they saw fit in the vending machine, ‘but not to others’. Adam, after winning his game, walked away baffled by why he did not get a prize like the other boys.

No other mother – whether of a special needs child or not – should have to watch her child suffer such avoidable humiliation. Coach Steve’s actions that day were, quite simply, unacceptable. They flew in the face of everything that the community center stands for and they cannot be – overtly nor tacitly – endorsed.

Going forward, it is vital that anyone who the community center hires to work with children has an understanding of – and a sensitivity to – the needs of ALL children. It is the center’s responsibility to safeguard the children in its care, and to ensure that they are not subjected to physical or emotional abuse.

We are very lucky to live in a place that is chock full of resources. I have no doubt that the center will be able to find or design a training class for its employees and independent contractors. I am sure that the cost of executing mandatory sensitivity training will be far smaller than the cost that would be incurred if children – with or without special needs – were to continue to be humiliated.

I look forward to hearing back from you. I am eager to hear your plans to address this issue and to ensure that no other mother has to write a letter like this one.

Sincerely,

(Any one of us)

ed notes: I helped my friend, C draft this letter yesterday. She was – in her own words – too emotional to make any sense. Once we had the words on paper, she was eager to share them, hopeful that something positive could come from the experience.

Please feel free to leave her a note in the comments. I’m sure that some support would be much appreciated. If your comments are anything other than supportive, please direct them at me.

As always, all names have been changed. Even Steve’s, though I’ll admit I was tempted.

mama’s here – on hopeful parents

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I’m at Hopeful Parents today, reflecting on fear and faith.

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!

 

the other veterans

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Last week, our nation paused to give thanks to our *military veterans*. As I read about all of the wonderful events that day, I began to envision a different kind of gathering. This was not the kind of event to take place on the National Mall or on the White House lawn. There would be no stage. There would be no fanfare. There would be no cameras.

The guests of honor would be tired, but proud. With them, their children – mostly adults now – many of them differently challenged, all of them gifted in so many ways. An incredible gathering in and of themselves, to be honored on a whole different plane. And they would be – God, would they be – but not today. Not in this particular vision.

I’d ask the crowd for their attention for just a moment. There would still be commotion – movement and noise. No one would mind. Most wouldn’t notice.

“I know I don’t have long to talk,” I’d say. “I’ll do my best to make it brief. But I need – NEED – all of us to stop the world just long enough to acknowledge those who walked this road before us.”

I would look at my girls standing with their Dad. Brooke would be wearing her headphones. I’d know she was listening to Godspell. Katie would be looking so grown-up, having convinced me to let her dress up for the occasion.

I’d choke up and have to pause. Someone would hand me a tissue. In this crowd, there are always tissues. And then I’d say what I came to say.

“To those who took those first few steps in total darkness.

To those who stopped only to reach a hand back to those of us who would follow not far behind.

To those whose ‘research’ was slow and laborious – who couldn’t troll for answers ‘online’.

To those whose connections to one another weren’t made in chat rooms, but in waiting rooms.

To those who fought for understanding and compassion and respect, long before there were foundations and celebrity advocates and international events dedicated to global awareness.

To those who did not just fight for services for their children, but who created them.

To those who refused to remove their children from their homes, their schools, their churches and their synagogues no matter what the men in the white coats told them was best.

To those who fought to prove that we ALL would be better for their children’s presence in our communities, in our lives.

To those who convinced educators that their children could learn.

To those who first spoke the word autism aloud, determined  to shatter the prejudices contained within it.

To the thousands of *Eustacia Cutlers* and *Judy Barrons* and *Mothers of Shrek*.

To the *Susan Senators* and the Carol Dyers.

To those whose names we know and to those whose names we never will.

To those who wrote books and to those who didn’t.

To those who testified before congress and to those who quietly educated their neighbors.

To those whose children who have long since aged out of the system but who still show up at advocacy meetings, just to be there to offer their perspective.

To those who wept alone and to those who found each other.”

I would take a deep breath, knowing I hadn’t begun to scratch the surface, but knowing too that I was out of time. I’d search for the right words.

“To every one of the mothers and fathers who struggled to give their children – ALL of their children – the lives they so richly deserved and in so doing made it incrementally more possible for all of us to do the same, THANK YOU.”

the donut shop

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I couldn’t believe she wanted to hear it again. As a matter of fact, she tried to convince me that I’d never told any of it to her before, which certainly wasn’t the case. You know those moms who tell their kids the same stories from their childhoods again and again? Well – yeah, present and accounted for. But she was eating it up. She had to hear every last detail.

So I told her – yet again – how every single Saturday morning throughout my youth, my mom and dad and I would pile into our car and go to the Donut Shop for breakfast. It turns out that it wasn’t actually called the Donut Shop, but that’s the only thing we ever called it, so there you have it. Every single Saturday, I told her, I would order a cheeseburger for breakfast. No bun, just a cheeseburger. She laughed – just like she did the last time I told her the story. And I couldn’t really defend it this time any better than I could last time. A cheeseburger for breakfast is relatively preposterous, after all.

She asked – yet again – about the seating. No, I don’t remember there being any tables, though there might have been. Yes, there was a long rectangular counter that surrounded the open kitchen. Yes, the stools spun around. Yes, there were four coveted seats in each of the two windows and yes, I felt like royalty when we happened to sit in them.

I told her – yet again – how after finishing my cheeseburger, I’d order a powdered donut for dessert. Yes, breakfast was followed by dessert. Uh huh. Welcome to my childhood. I told her about how the owner would bring the powdered sugar tray over as soon as the last donut was served and how he would then dump the leftover sugar on my plate. As I said it, my teeth ached with memory. I told her how my dad would order a Twirl – an enormous mound of cinnamon sugar and butter and glaze, showing her its girth with my hands spread apart to the approximate size of her head.

I told her how when we left the Donut Shop I would take my allowance – my precious twenty-five cents – to the variety store next door. I told her how I would stand in front of the candy counter, clutching my quarter, trying to decide how to spend it. As Katie marveled that twenty-five cents could buy anything, Luau was busy doing the nutritional math in his head – cheeseburger to donut to candy. Yes, dear, I know – breakfast of champions.

So how I didn’t make the connection, I don’t know. How I didn’t understand why it was suddenly so important to me this weekend to get us all up and out of the house, into the car and off to a local greasy spoon for breakfast, I don’t know. But I didn’t. Because as we all know, when we’re so busy tending to the trees, the forest sometimes eludes us.

**

But there we were – Katie enamored with the idea of going out and Brooke begging not to leave the house. Katie pleading, “Please, Mama, we NEVER go out for breakfast” as Brooke simultaneously whimpered, “We would stay home. I want to stay HOME.”

And there I was on the floor of Brooke’s room, trying to convince her that it would be FUN. That we would bring her headphones and her magnetic dress-up dolls and that she would eat PANCAKES – her favorite! And there I was, managing to convince myself that it was important not to give in to her, that she would have to learn to do these things – and that somehow, this wasn’t about me.

And there was Katie, trying so hard to make it work – running into her room to find her Game Boy and loading it up with the Dora cartridge for her sister. There she was, leading the cheerleading section, supporting her little sister with every tool she had.

And there we were at the table with Brooke in her headphones, loaded to the gills with our tools and strategies, none of which was working. There we were in a panic as the waitress came by to offer coffee, knowing that if the baby somewhere in the back of the restaurant kept crying so loudly then Brooke would keep screaming her tortured response and we simply wouldn’t be able to stay.

And there we were, minutes later, making the decision to run for it without ever having ordered a thing. There we were, wheels flying off the wagon as we paraded our family through the restaurant, nearly running for the door. There I was, wanting to shout at everyone who so much as glanced our way, “YES. THIS. IS. AUTISM.”

And there we were on the sidewalk, where I was still unable to soothe my girl. Where I walked her to a park bench and tried desperately to convince her to listen – to hear the quiet that now surrounded us. There I was, incapable of reaching my baby, of easing her pain, of finding a way in to prove to her that she was safe. There I was, smaller than the demons yet again.

And there I was walking back to the car with Katie, listening to her quietly pouring her feelings out onto the sidewalk. There I was telling her that it was OK to be angry. That it was OK to be frustrated. That yes, I understood her disappointment – that I felt it too.

And there we were in the car, driving home. There I was trying to hide my tears from my girls. Wanting to melt into the seat. Or kick in the windows. Wondering what in hell we were doing.

What was it that I was chasing? Why on earth was I choosing this – THIS – to shove down her throat?

Eating out is hard for my girl – really hard. Restaurants are loud and unpredictable. There are crying babies and weird lights and funny smells and scary bathrooms and well – she’s learned to tolerate them when she needs to, but she’d never call them fun. And here she was, first thing in the morning, catching breath after jagged breath – for what? For a breakfast out?

**

The pieces were all there. The Donut Shop. The variety store. The cheeseburger and the powdered donut. The stories to tell their kids thirty years later. The easy picture of family life that it all represented. Yes, that was it – it was the ease that appealed the most.

And there I was, trying (and failing) to keep it together as I admitted to myself that sometimes – just sometimes – I really want the kind of life in which families get up on a Saturday morning and go to the damn Donut Shop.