giddy up – a thank you note

Wouldn’t it just be lovely if after Autism Awareness Month was over we all got one day – just one, single solitary day when we didn’t have to be AWARE of autism? Just one, God. Please. For my friends. For their kids. Just one. Amen.

~ My note to my friends this morning

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As we close the door on yet another Autism Awareness Month, I’d like to say thank you. If I had the time or the energy, I’d create links to examples of each and every one of the following. I have neither, so I have to trust that you’ll know who you are.

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Thank you to those who pushed to raise awareness this month.

Thank you to those who reminded the world that awareness is not the goal, but instead is simply the means by which we will achieve the goals.

Thank you to those who opened their eyes, their hearts, their wallets, their homes, their businesses, their schools and their places of worship to our families.

Thank you to those who told their stories, their families’ stories and in so doing, who made the word autism real.

Thank you to those who tweeted, who blogged, who spoke in schools, in churches, in state assemblies, on television and on line at the grocery store.

Thank you to those who began conversations about the words we use and their impact on the greater psyche – and in turn on our children.

Thank you to those who supported the siblings, and the siblings who reached out to one another. Who said, simply by their presence, “It’s going to be OK.”

Thank you to those who continued to ask questions and who refused to back down when the answers weren’t good enough.

Thank you to those who didn’t have an ounce of energy left to advocate, doing all they could to help their kid get through one more hour, one more day. It’s OK.

Thank you to those who made the world better simply by living their own truth without shame.

Thank you to those who spent days in airports, jetting from state to state to stand with our brothers and sisters in their fight for their children’s most basic rights.

Thank you to those who worked with our children every day, who believed in their unlimited potential and who never once stopped to question the possibilities.

Thank you to those who took the time to write to us to tell us about our child’s day.

Thank you to the doctors who spoke without condescension but with compassion.

Thank you to the professionals who addressed parents as equals.

Thank you to the teachers and doctors, therapists and researchers who asked questions, who knew that doing so made them look more – never less – competent.

Thank you to the little girl who invited my daughter to her birthday party.

Thank you to the mother who refused, forty-five years ago to institutionalize her autistic son.

Thank you to the teachers who kept an eye out in the hallways, at lunch, on the playground. Who seamlessly made their presence known when it was needed and disappeared into the scenery when it wasn’t. And above all, who knew the difference.

Thank you to the public servants who truly were.

Thank you to those in power who reached out to help.

Thank you to those who disagreed respectfully.

Thank you to those who remembered that we all have the same goals, no matter how different our approaches.

Thank you to those who wrote books and to those who read them.

Thank you to the educators with the courage to be honest.

Thank you to those who lit their homes and businesses blue, and who talked about why.

Thank you to those who vowed to join us, not because they’d yet been affected by autism, but because they knew that until all are free to reach their potential none will ever be.

Thank you to those who protested, who wrote to parenting magazines and television shows and newspapers – who convinced them to use their platforms to speak to EVERYONE and thank you to those who heeded their call.

Thank you to the autistic adults who taught us, inspired us and reminded us again and again that Autism is a vast spectrum, representative of the entire human condition.

Thank you to the terrified mom whose son was just diagnosed who held her head high and said the word out loud for the first time, then wept as she got into the car.

Thank you to the grandparents who said, “Of course we’ll babysit; just tell us what we need to know.”

Thank you to the aunts and uncles who spoke no less proudly of their autistic niece’s and nephew’s accomplishments than of their typical sibling’s.

Thank you to the Special Education Councils and the Parent Advisory Boards.

Thank you to the PTOs that welcomed Inclusion Committees and asked how they could help support them.

Thank you to the moms still trying to create them.

Thank you to the mother at pick up time who said, “Hello” and asked about our kids.

Thank you to the dad who explained to his son why if he ever heard him use the word, “Retard” again, he’d take his sorry ass to the woodshed.

Thank you to the music teacher who wouldn’t give up on the kid who he knew had a gift, no matter how hard it might have been to unlock it.

Thank you to the PE teacher who thought outside the box and created games in which every child could play a role.

Thank you to the classroom teacher who realized that visual aids work for every student in the room.

Thank you to the school janitor who sees – truly sees our kids.

Thank you to the art teacher who couldn’t have cared less about staying in the lines.

Thank you to the fire fighter who asked the kids not to ring the bell for a few minutes so that the little boy covering his ears could come to look at his truck.

Thank you to the police force who brought in training to better understand why our kids so often find themselves in totally avoidable legal trouble and who learned what to and what NOT to do when, God forbid our children go missing.

And thank YOU. Thank you for walking this road alongside my family.

At the end of the autism conference at the White House on Monday, Mike Strautmanis, Deputy Assistant to the President and Counselor for Strategic Engagement (and father of an autistic son) said something to the effect of the following, “We here at the White House can’t do this without you. We can help, but we can’t DO it. It will be you – block by block, neighborhood by neighborhood, school by school who will make this happen.” And while we desperately need their help, at the end of the day, he’s right.

We can wait and listen for the hoofbeats, my friends, but like it or not, we ARE the cavalry.

I thank God for all of the awareness efforts this month. Without them, nothing else would be possible. But they are simply the first steps on the road to real change.

So as we close the door on yet another April, we saddle up again. Because while the spotlight may be gone for a while, the very real challenges remain.

Giddy up, my Diary family. It’s time to ride.

the white house, part three. settle in, this could take a while

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Ed note – I had the tremendous honor of attending an Autism Conference at the White House this past Monday. To catch up on the story of how on earth I, of all people wound up in Washington, please follow the links below by clicking on the words in blue.

First, I wrote THIS, which led to an invitation to this which in turn led to me writing THIS, THIS, THIS and THIS. Please go ahead and click the links before continuing so that what follows will make at least a little bit of sense. Take your time; I’m not going anywhere.

OK, so now that you’re all caught up, we pick up the story where we left it off …

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Introductions out of the way, it was finally time to get down to business. Assistant Attorney General Perez led us off with what was to be the first of three questions aimed at facilitating conversation. This was not a crowd that needed much encouragement however. It was quickly obvious that we would never even hear the second question no less the third, as the clock would run down while we were simply trying to ensure that everyone who wanted to speak had the chance.

Funny thing is, I don’t even remember exactly what the question was. I believe he asked us to speak to the particular challenges that we face in terms of Community-based services. Truthfully, he may as well have just said, “Ready? GO.”

I didn’t take notes throughout the open response time, so I fear that my recollection of this next part is sketchy at best. I was determined not to record, but to absorb what was happening in the room, which is all fine, but when your brain is pretty much at capacity, there’s not much room for retention after the fact. Also, there’s a lot of detail that I’ve chosen to leave out lest this series turn into an epic novel, so I hope broad strokes will be sufficient.

The first few speakers addressed the needs of adults with autism and spoke a great deal about the desperate state of services to that population. They spoke about the private initiatives that they had been compelled to undertake in order to provide support to parents seeking to find or create group homes. They talked of their own herculean efforts to create blueprints for families in the absence of any real guidance from the agencies designed to serve them. They reminded the government officials that children grow into adults – a fact not always obvious for a community that, by necessity is so focused on the very next moment in the very next hour of any given day.

The refrain was the same as that which I’ve heard a lot recently in my work with Cole. Agencies are not communicating with each other no less working together, funding is self-defeatingly restrictive and riddled with rules that are not just counterintuitive but often serve to cancel out alternate resource streams, and services – when available at all – are delivered by people who are not remotely qualified care givers. As Cathy Boyle put it, “When we’re paying these folks $12-15 an hour to work with some really challenging situations, it’s tough to compete with McDonald’s.”

There was an apparent consensus in the room that the qualification system for adult service professionals needed an overhaul, as did the laws surrounding permissible interventions. There was resounding agreement that experience mattered more than degrees and that often, laws detailing how a care giver can (or cannot) intervene when a person is exhibiting self-injurious behaviors actually served to exacerbate those behaviors and ultimately did far more harm than good.

There was some talk about employment. Though another breakout session covered it, it’s hard to talk about adults in the community without discussing their need for (and our country’s need for them to have and maintain) appropriate and fulfilling employment. Job training and on-going coaching is a small price to pay for putting an entire population to work. Especially when we consider that a working population contributes to – rather than drains – society at large, not to mention the money saved when considering the cost of depression and addiction that can otherwise arise when the supports fall out from under our community’s adults as soon as they hit twenty-two.

In talking about adult services, it quickly became obvious that fixing the system would necessitate not just community buy-in, but an interagency government overhaul. As AAG Perez said, at the bare minimum we needed cooperation from the departments of Justice, Housing, Transportation, Health and Labor.

As we moved around the table, a couple of younger parents began to speak about the challenges that they faced getting help for their children. A gentleman from Virginia took the words right out of my mouth when he said that the most effective way to approach the needs of the next generation of adults was to serve them before they BECAME adults. I nearly shouted an Amen.

Idil, the Somali woman who I’d met earlier, spoke with palpable emotion about her community. She reminded us that one in twenty-eight American born Somali children in Minneapolis is on the autism spectrum. No matter how many times I hear that number, it doesn’t get any easier to wrap my brain around. She spoke with passion about her pre-verbal son and her desperate hunger to help him. I was moved to my core when she spoke for so many parents I know, saying that she would do anything if she could just give her son her words. Faces flashed in front of me. So many silent children. My heart ached.

She spoke from the place of desperation that so many – far, far too many – inhabit. Her words were pleading. “He needs a cure,” she said, fighting tears. She steeled herself as she continued, “If he were to break a finger,” she said, “the doctor would fix it. Where is the doctor to fix this?”

Suddenly there was a sharp, pained outcry from the end of the table. It was Katie. She was shouting.

“WE DON’T NEED TO BE FIXED!”

She immediately apologized. “That was inappropriate; sorry.” She wasn’t apologizing for her words, only their delivery.

Idil looked at her. “No, no you do not,” she said. “YOU are perfect.” And I trusted that she meant it, from the bottom of her heart. But for Idil, the mother of a child without words, there was almost no connection between her son and these highly verbal, extremely high-functioning (whatever the heck that actually means) adults. Her son needs help. He needs it now. As far as she is concerned, what he need is a cure. The autistic adults in the room, however, are perfect.

And right there, I thought – right there at the crossroads of needs so disparate as to be contradictory, of a spectrum of human experience so broad as to include, to paraphrase my friend John Robison, highly verbal, commercially successful geeks on one end and severely disabled, non-verbal people on the other. It’s all right there.

I raised my hand.

It was time to speak up.

To be continued.

have soapbox, will travel …

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“She packed up her potential and all she had learned, grabbed a cute pair of shoes and headed out to change a few things.”

~ The cover of my all time favorite notebook, by Curly Girl Designs

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“Babe, if six months ago someone had come up to me and told me that in six months I’d be discussing with my wife her upcoming engagements at the White House and then Harvard – all within a week no less – you know what I’d say?”

“What?”

“Um, have you met us?”

~ Luau and I talking last week

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Just when you thought it was safe to go back in the water, here I am again! Yup, today is a Diary Double Feature kinda day, my friends.

Why? Well, because tomorrow afternoon I’ll be heaving my soapbox over my shoulder again, putting on my favorite pair of shoes and heading to Harvard. As hard as it may be to believe, they actually invited me to speak. Mom, stop laughing, I’m not kidding. Sheesh, you’d think maybe that whole White House thing would get a girl some credibility around here.

Anyway, I am honored to be serving on a panel of autism advocates as part of Harvard’s efforts to raise awareness. Along with Dr Stephen Shore and the other panelists including a Harvard student and her sister, I will be addressing students and faculty at the Harvard Graduate School of Education.

So here’s where you come in.

What, you thought I would do this without you? Not a chance. 

What would YOU say to the educators of tomorrow? What do YOU want the next generation of teachers, inclusion specialists, general and special educators and administrators to know about our kids? What works? What doesn’t? What do they need to know before they ever set foot in a classroom? And what do they need to know thereafter?

The floor is yours.

white house part two

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Read part one here

We were divided, based upon our pre-assignments into four groups of thirty odd people each. Each group was then led to a conference room where they would have lunch and offer input on their individual subjects.

I was thrilled to be heading to the session on Community-based Services, far and away the topic to which I felt most suited. I would have been equally at home in Education and Employment, but I was afraid I would have been pretty far over my skis in Public Health / Health or Research and Innovation. I sent up a silent thank you to whomever had assigned the groups. They’d obviously done their homework.

As soon as I walked into the room, I found a familiar face – a woman from Massachusetts who has started a foundation to offer support and resources to families seeking housing for their adult children with disabilities. I grabbed a seat next to her and met her companion – a woman doing similar work in New Jersey. Both had severely impacted young adult sons. I then introduced myself to the woman on my right – the mother of a twenty-one year old daughter and the founder and executive director of The Autism Council of Rochester, NY. I marveled at how much these three women alone had directly contributed to their communities and in turn, to all of us.

Our group had been assigned two leaders, ostensibly from two different divisions of the government. As it turned out, however, they were colleagues whose work together dated back to the Clinton administration and whose mutual admiration and respect was clear – Henry Claypool, Director of the Office on Disability in the Department of Health and Human Services and Tom Perez, Assistant Attorney General for the Civil Rights Division of the Department of Justice.

It was obvious from the room’s reaction to AAG Perez that he is hailed as a hero for his work on the landmark Olmstead case, the 1999 Supreme Court decision that forever changed the paradigm for institutionalization in this country, as well as for his more recent work in enforcing Olmstead in the State of Georgia.

Joining them was Sharon Lewis, Commissioner of the Administration of Developmental Disabilities.

We began by going around the room and introducing ourselves. The group was diverse. Mostly parents, many of adult children, nearly all of whom had founded, ran or founded and then ran a foundation of some sort. There were some parents of younger children, like the Somali woman I’d met earlier and was pleased to see in the room. And then, opposite the government officials were three autistic adults – two men and one woman who had come to advocate for their community.

I tried desperately not to stare at them, but I was riveted by their presence. The fact that they were there, advocating for themselves, well, God, that’s everything, isn’t it? That’s the goal, the hunger, the desperate prayer that gets each of us up in the morning. The hope that one day our children will be able to speak for themselves. Perhaps that they will be able to speak at all.

I looked for clues, for telltale signs of their places on the spectrum. The young woman wore a pin that said No Pity. She rocked slightly and looked up at the lights periodically, but no one would have noticed had they not been looking – or known what to look for. Over the course of the session, she would pull a host of fidgets from her bag. She didn’t have to worry about receiving my pity. I was in awe of her.

She introduced herself as Katie. She was an artist, receiving her Masters in Fine Art. The young man next to her was a PhD candidate in something complex enough that for the life of me I can’t tell you what it was. The third gentleman was an incredibly articulate advocate, serving on numerous boards in his home state of Vermont. They were a formidable group.

As it came closer to my turn to introduce myself, I found myself shaking. When do the nerves stop? When does this get easier? The women before me talked a bit about themselves and their work and then suddenly it was my turn. There was nowhere to hide, so I took a deep breath and said something along the lines of the following.

“My name is Jess. I write a blog called Diary of a Mom. I also run a page that serves as a gathering place for a community of nearly 3,000 people – mostly autism parents – as an offshoot of Diary. I have to tell you, I am here representing the children of every one of those people. For me, this is both an incredible honor and a grave responsibility.”

I choked back the tears that had been threatening to fall for days. I said something about being on the board of the Special Education Advisory Council in my city. I guess I needed to mention something with a title.

And then I nearly lost it as I continued.

“Above all, I am the mother (I was actually so nervous by this point that I got flustered and said, “I am the daughter of” and had to stop and fix it) a beautiful eight year-old girl with autism. And I must tell you,” I said, addressing my remarks to the autistic adults (and really to Katie in particular), “my greatest hope is that one day she can be sitting where you are today, doing this for herself if she so chooses.”

I then turned to the government officials and said, “Thank you so much for taking the time to listen to all of us today. I am very grateful to be here.”

As the woman next to me began her own introduction, I reached for my water bottle. I watched my hand shake uncontrollably as I brought it to my lips.

I looked at Katie. I thought of my Brooke. And then of Jack and Rhema and Devin and Nik and Ms M and C and J and K and my God, all of them, ALL of them. Too many. Far, far too many. I took a deep breath and decided it was time to get it together. There was work to do.

To be continued ..

the white house, part one

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So here’s the problem with trying to write about my experience at the White House. It’s not just that I don’t know where to begin – though I don’t – it’s that for the life of me I can’t possibly fathom how I might wrangle the enormity of it into words.

You see, I write entire posts about moments in time – I relive them in slow motion, analyze them section by section and then do my best to share them as I lived them.

But the day at the White House – well, my God, it was a series of moments, each and every one its own story – its own HUGE story – unto itself. Moment after moment, they came in rapid fire. I could barely process the day as it was happening. My pen scrawled illegibly across my notebook as I tried desperately to jot something down that might at the very least jog my memory later, but the raw emotion was too much to jam into my notes.

For the sake of brevity, I’ll skip over the sleepless nights leading up to the day. I won’t go into detail about the overwhelming insecurity that plagued me going in or the list of precious children who I carried with me – their names etched on my heart, the responsibility of the opportunity weighing so heavily that at times I wasn’t sure I could carry it.

I won’t even tell you how I warily approached the White House security gate nearly forty-five minutes early just to make sure that I was in the right place and then immediately called Luau to say, “OK, hon, this is just bizarre. I went to the White House gate and they said, ‘Yes, Ma’am, we’re expecting you.’” He laughed and said, “Yes, babe. They are.”

I went in like everyone else there – having no idea what to expect. I received my badge and was ushered into a room with stadium seating facing a stage. On the stage was a podium with a very presidential backdrop of blue velvet curtains.

As people poured in, the room filled up with a few familiar faces and even more familiar names. I took a seat behind Gerry Dawson and Catherine Lord. Ari Ne’eman chatted with some folks to my right as Tom Insel made his way to his seat. It was like a who’s who of the Autism Community.

According to the agenda, there would be a welcome from Valerie Jarrett, Senior Advisor to the President for Intergovernmental Affairs and Public Engagement followed by remarks from Kathleen Sebelius, Secretary of Health and Human Services. After they spoke, we would move into breakout sessions.

Each session would be led by a different official or set of officials, each a high-ranking member of their particular agency. As it was later explained, the objective was to promote interdepartmental cooperation by essentially creating Autism Point People within each department, from Labor to Health and Human Services and Education, etc. Ultimately, those people would then go to work, not just with each other, but with the likes of Housing, Justice and Transportation in order to address the vast scope of our community’s needs. After the sessions, we were to reconvene en masse and each group’s official would report back about what had been discussed in his or her session.

I quickly learned that I had been assigned to the Community Based Services group. The other rooms would be discussing Education and Employment, Research and Innovation and Public Health / Healthcare.

But none of that would begin for nearly forty minutes from the time I’d entered the room. I took a seat and tried to engage my iPhone, but no such luck. Without a signal, I’d have to go without my electronic security blanket.

A gentleman took the seat next to mine -a doctor from Mass General who explained that he is working on creating centers of excellence around the country, both for research and patient care. They currently have eleven such centers around the nation, he told me, but the goal is one within one hundred miles of every human being in this country. I listened intently. I asked a bit about the services that they provide, telling him how disappointed we’d been when the supposedly world-class program at our local Children’s Hospital had loudly shrugged when we’d asked them where we could turn for help with Brooke’s anxiety. “We wish we could do more in terms of service,” he said. Together we lamented the pace of progress.

He then asked, “And who are you with?”

I hadn’t thought about how I might answer that question. I guess I hadn’t realized that anyone might ask it. I flashed to an image of Brooke last week on vacation. An elderly lady had asked her where she was from and she had answered, “My house.” It was tempting.

I began to stammer.“Well,” I said, “I write a blog called Diary of a Mom. It has a reasonably large following and a pretty wonderful community has sprung up around it.” He looked expectant, so I assumed that wasn’t enough. For the life of me I didn’t know what to add. Was I supposed to tell him what I do for a living? That seemed vastly irrelevant.

I was hoping it wasn’t me who I heard filling with the silence with, “Well, I guess that’s it really. I’m just a mom.”

I cringed and wished for a do over. That would be the only time that day that I would say – or ever will say again, “I’m just a mom.” I thought of my dear friend’s words that morning, so perfectly placed in an e-mail message. “You’re the mom of a beautiful girl with autism – that is more than enough to warrant a seat at the table.” Eventually, I would share those words with the mom next to me who had admitted that she too had nearly vomited on her shoes that morning.

When the doctor got up to mingle, he was replaced by a beautiful Somali woman from Minneapolis. She had a friendly smile and we began to chat. She asked if I was familiar with their community. I nodded. It’s a case study that no one understands. One in twenty-eight of their children is affected by autism. One in twenty-eight. It’s mind-boggling. Wide-eyed, she said, “I wonder if the answers are HERE.”

We talked about our children. She has a pre-verbal eight year-old boy. I told her about my girl. We laughed about our nervousness coming to the White House. She mentioned that her cab driver had eyed her suspiciously as she’d told him her destination. “A muslim woman heading to the White House,” she said shaking her head. “Guess he wondered what I was going to do.” My heart hurt on so many levels I didn’t know where to begin.

The man in front of us turned to introduce himself. He said that he was a parent advocate from Chicago. I filed that away, deciding that “parent advocate” sounded a heck of a lot better than, “just a mom.”

We struck up a conversation about his son’s impending transition to adulthood and the innovative solution that he and some folks were working on to create group homes on working farms. It sounded idyllic, but I cringed as I asked, “Where does the funding come from?” knowing his answer would be what it was, “Well, the families buy in.”

I didn’t hold my tongue. I had decided early on that this wasn’t the place to keep my words to myself. The woman next to me nodded as I said, “The problem is that most families CAN’T buy in.”

I cringed again when he began to talk about how important it is to have a great partner on this journey. How women really need to put their husbands to work. I saw it speeding toward us like an oncoming train, but there was no way off the tracks. “Single mom here,” said the woman next to me with a raised hand. One of so many in our community.

I turned to her and we chatted about the challenge of being a single parent. I told her that last week, alone with my girls for just four days, I thought of how exhausting it must be to do this alone. I thought of Katie last week, so desperate for a break from autism and me, unable to give it to her. “God bless you, I said. “It can’t be easy.”

A group of young adults walked into the room. One young woman among them caught my eye. She looked like any other twenty-something, but for the frenetic flapping of fingers that periodically jangled her bracelets and gave her away.

I watched Dr Stephen Shore embrace another man in a joyful hug of recognition. I was moved nearly to tears by the simple joy of the moment. Self-identified people with autism, self-advocating and in so doing creating a community of their own. Independence. Choice. Everything we work for and pray for for our children – all in a hug.

Finally, the time came to begin. We settled into our seats and a hush fell over the room. As promised, Valerie Jarrett spoke, followed by Secretary Sebelius. We then grabbed our lunches and headed into our individual sessions, where WE, the thirty or so stake holders in each meeting would be the featured speakers.

To be continued ..

please, mr president, step inside

Photo from the whitehouse.gov

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While the “Event for Autism Awareness Month,” as it’s being billed, is taking place inside the White House today, a very different event will be taking place outside on its lawn.

According to USA Today, the White House Easter Egg Roll just keeps getting bigger. This year, the president expects thirty thousand people to come through the gates. For the sake of practicality, they will be divided into five groups of six thousand guests for two hours apiece.

According to the paper, there are some big-named celebrities expected this year – from singer Colbie Caillat to Kelly Ripa, the Harlem Globetrotters and even Elmo.

God, Brooke would LOVE to see Elmo – my eight year-old might just be his biggest fan. She watches Elmo’s World with no less than religious devotion. But six thousand guests jammed into two-hour time-slots?

Hell no.

The chaos of the crowds? The children moving unpredictably in every direction, the noise? Holy hell, can you imagine the noise? The babies and toddlers yelling and laughing and, heaven-forbid, crying?

The confusion and frustration of Elmo being visible but not accessible to talk to and hug? My girl cannot see a character without hugging him. Nope. Sorry.

And the actual egg rolling itself, with all its moving parts and the children – OY, a lawn literally crawling with children?

My girl would be a DISASTER.

So while the president is outside the White House today, playing on the lawn with some twenty thousand children and their families, I pray to God that he takes a break to come INSIDE to talk to those of us who parent some of the more than one million children in this nation who CAN’T be there. Not because they didn’t win a lottery ticket for admission, but because somewhere along the line they were handed a ticket for an entirely different journey.

Please, Mr President. Step inside your house today and talk to us about how we can work together to ensure that every one of our children has the chance to participate – to truly, fully participate – in this American life of ours. Egg rolling and all.

Our children deserve no less.

game on

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We are looking forward to your participation in the Autism Awareness Month event on Monday, April 25.

You will hear from senior White House and administration officials. You also will have the opportunity to discuss your experiences and ideas with other stakeholders in the Autism community as well as with government officials. We hope to have a robust discussion and exchange of ideas.

We will provide further details when you arrive at the White House.

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Please note that the opening part of the Autism event on Monday from 11:30 AM – 12:00 PM Eastern will be streamed live on the White House website at

http://whitehouse.gov/live

 Accordingly, please circulate this information to your networks so they can watch the proceedings live between 11:30 and 12:00 Eastern.

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Please see above.

There – the information has now officially been circulated to my ‘network’.

Now, down to the brass tacks, my friends.

What do YOU want the senior White House and administration officials to hear?

I leave tomorrow.

Game on.

what she missed

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Thank you all so very much for your love and support following yesterday’s post. I received links to (and incredibly generous offers from) some wonderful photographers and for that I am grateful. There are photographers out there who get it. There are some who already have experience with our kids and many others who are simply open, patient and kind and who, most importantly, are willing to toss aside their preconceived notions about picture-taking and meet our families right where we are right this very second.

I continue to have faith that everything – real family photo and all – is possible, as long as we find the right people to help us along the way.

In the meantime, I’d like to share with the original Twit some of what she missed. Yes, she did get the shot that I told her that I didn’t want or need. Hooray for her. I hope she earned the Everybody’s Obediently Looking At My Camera badge to wear on her photographer’s sash.

But what she missed was my girls. And, well, that’s a heck of a thing to miss out on.

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Photos by Mama 

All images exclusive property and copyright of Diary of a Mom, 2011.

(In other words, mitts off my pics.)

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But hey, awkwardly posed and looking into the camera is good too.

Really.

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Ed note: The links in the first and second paragraphs are to photographers whose links I received yesterday. I have no experience nor personal relationships with any of them, so my linking to them does not constitute an endorsement of any kind, but rather my gratitude for their willingness to work with our families. If I left anyone out, please leave their information in the comments below. – Jess

family portrait

**

Diary of a Mom Taking advantage of a free sitting with a family portrait photographer tonight. Might be a good thing; might – well, NOT. Wanna lay odds?

Diary of a Mom Dear photographer, I didn’t spend 1/2 hr on the phone w u b/c i wanted to hear my own voice. When I said, my daughter is autistic; please don’t try 2 get us all looking @ the camera, I didn’t mean ask her why she’s not looking at the camera. #incredulous.

~ Last night’s tweets

*

I have some gorgeous photos of my children – you know, if I don’t say so myself. I have a whole bunch of wonderful photos of them with their Dad, both together and separately, and even some (like the profile picture on Diary) of me with them that I simply adore.

But all four of us in a single frame? Well, in our house that’s been the golden unicorn. One of us has always needed to be behind the camera (even if it was someone else’s camera) to get a photo of Brooke.

So when I heard about the free sitting with the supposedly fabulous (and typically VERY expensive) family photographer – on the beach no less – I figured we had nothing to lose. I hadn’t factored in my sanity.

When I called to set up our ‘ten to fifteen minute’ photo session (rolls eyes realizing I should have pulled the rip cord right then), the woman on the phone had some questions. “We want to get as much information as we can so that our photographer can use her brief time with you to the fullest,” she’d said.

“That’s wonderful,” I told her. “I’d really like to give you some background.”

I told her about Brooke. I told her that she has autism. Actually, I said that she’s autistic, but that’s a story for another day. I told her that we hadn’t had a family picture in years – that our only goal was to get all of us in one frame. I told her that I had no interest in a posed shot in which all of us were looking at the camera – and that it would likely be nearly impossible to get one anyway. I told her that it was EXTREMELY important that we not try to force it – that if we continually asked Brooke to smile or to look into the camera, we’d likely lose her completely. I told her that we’d be thrilled with a picture of the four of us interacting with one another – that if we could make each other laugh, I didn’t care who was where or looking where. I told her that my girl loves Sesame Street and that if all else failed, she thinks the word, “Poop” is about the funniest thing she’s ever heard. I told her again that I did NOT want to force it.

She was receptive. She thanked me for the ‘great information’. And then she apparently flipped to the next page of her intake questionnaire and read the next question aloud, “So what do you hope to get out of the session?”

Oh Lord. 

I hung up the phone, hoping that at least some of what we had talked about got through. It turned out not to be my only shot at the conversation.

The following day, the photographer called me directly to confirm our appointment. I was happy to make the connection and to ensure that she’d gotten all of the information that I’d given to her colleague. “So I assume that JoAnne gave you the background on our family,” I said, clearly making no such assumption. 

Dead air.

Hmm, little awkward.

“Um, would you like me to run through it again?”

“Sure,” she said. “That would be great.”

I told her about Brooke. I told her that she has autism. Actually, I said that she’s autistic, but that’s a story for another day. I told her that we hadn’t had a family picture in years – that our only goal was to get all of us in one frame. I told her that I had no interest in a posed shot in which all of us were looking at the camera – and that it would likely be nearly impossible to get one anyway. I told her that it was EXTREMELY important that we not try to force it – that if we continually asked Brooke to smile or to look into the camera, we’d likely lose her completely. I told her that we’d be thrilled with a picture of the four of us interacting with one another – that if we could make each other laugh, I didn’t care who was where or looking where. I told her that my girl loves Sesame Street and that if all else failed, she thinks the word, “Poop” is about the funniest thing she’s ever heard. I told her again that I did NOT want to force it. For good measure I added, “Seriously, we’ll have a heck of a time if we try too hard for the picture post card.”

Katie, sitting next to me, whispered, “It’s OK, Mama, you can say hell. I’m ten.”

**

As we got ready to go, I did my best from the clothing we had packed to make sure that we were relatively coordinated – or at least didn’t desperately clash. I opted against the Partridge Family matching get-ups. I’m still traumatized from that family photo in the seventies in which my parents and I are sporting matching gingham shirts and faded bell-bottom jeans. I shuddered typing that sentence.

We showed up on the beach in time to watch the family before us. I watched them follow the photographer’s instructions – the kids getting up and sitting back down, switching spots, scrunching in then sitting up taller. Mom just a little to the left, that’s it. A baby cried in the distance and Brooke meowed loudly in response. I handed her the emergency Teddy Grahams.

As she finished up, the photographer came over to greet us. With blinding efficiency, she’d moved us down the beach and to the spot where we would set up our shot before we could say, “Boo.”

I watched her pose Katie – “Just like that, sweetie, legs out to the right. Nope, other way. That’s it. OK, now you, pumpkin, come on over.” Like obedient sheep, Luau and I prompted Brooke to sit next to her sister. We helped her sit the way the lady was asking her to, gently guiding her legs in the right direction. I didn’t say a word as Luau and I fell in behind the girls, scrunching and leaning and a-little-to-the-lefting. I was incredulous, but I was also aware that we now had twelve minutes left.

“OK, everybody look at me!” the photographer said cheerfully. “Ready, on three now!”

I thought my head would explode right through my plastered-on smile.

“Brooke, look at my circle! Brooke, do you see my circle? Hey, Brooke, does Dad have stinky feet? C’mon, now. Brooke, where are you going? Can you come back to our picture, Brooke?”

After every shot – and often in the middle of one – Brooke ran for the hills. I couldn’t blame her. A couple of times, I nearly went with her.

And then finally, in the middle of a long string of equally inane utterances she asked, “Brooke, why aren’t you looking at my camera?”

It was all I could do to keep the words in my head from spilling out like machine gun fire.

Why isn’t she looking at your camera? Because she’s AUTISTIC, you effing half-wit. Just out of curiosity, why do you think I spent a half-an-hour of my time talking to you about this? Why do you think we haven’t had a family picture in years – or that our only goal was to get all of us in one frame? Why do you think I told you that I had no interest in a posed shot in which all of us were looking at the camera – and that it would likely be nearly impossible to get one anyway? Why do you think I told you REPEATEDLY that it was EXTREMELY important that we not try to force it – that if we continually asked Brooke to smile or to look into the camera, we’d likely lose her completely? Why do you think I told you that we’d be thrilled with a picture of the four of us interacting with one another – that if we could make one another laugh, I didn’t care who was where or looking where? Did you really – REALLY just ask my child WHY SHE’S NOT LOOKING AT YOUR %$#@! CAMERA?

I didn’t say a word because I didn’t trust myself to let one loose without all the others following.

We got up and took a couple of shots walking the beach and then called it a day. Brooke ran off after the birds and flapped her little wings, trying her darndest to follow them  in flight. Katie hammed it up in front of the water. I reached for my own camera and snapped away. My girls being my girls.

And then I quietly walked away and cried.

a conversation with katie

Photo by (and including) Brooke

*

“So, Mama, there are these little fish that swim with sharks. And even though they could, the sharks don’t eat em. They’re called pilot fish, and they act like toothpicks for the sharks. They go right INSIDE their mouths and they eat out the stuff that’s stuck. There’s a whole lot of extra meat in there. And since they’re pretty small – well, at least compared to the sharks – they get all the food they need just from eating the stuff that they find in the shark’s teeth. So they stay with the sharks and swim around with them everywhere. Isn’t that cool?”

“That’s very cool, baby. Did you read that in your new book?”

“Uh huh. It’s awesome. Don’t you think that’s cool? That the sharks don’t eat the pilot fish?”

“I do, baby. Have you ever heard the term, symbiotic relationship? Do you know what that means?”

“Ooh! Wait! I think so. Like the sea anemone and the clown fish?”

I know squat about sea life, so I have no idea if it’s like the sea anemone and the clown fish or not. I wait it out. If I’ve learned one thing in my forty years, it’s that you can sound really smart when you don’t talk.

Katie tries to puzzle through their relationship but can’t quite remember what it is. Something about a hiding place and stingy tentacles not stinging. Unfortunately, all I can think of now is Finding Nemo and that little Ellen Degeneres fish who could never remember anything. Man, she was hilarious. You know – for a fish.

“So does it mean that they’re unlikely friends?”

“Hmm, not necessarily, baby. Keep talking it out.”

“Oh, well, they stay together and they don’t hurt each other and they kind of need each other. They each do something for the other one.”

“That’s it, baby! Good job, they each give the other something that they need. You and I have a symbiotic relationship, you know.”

“We do?”

“Yup. What do I give you?”

“Hmm, well, food. And clothes. And a place to live.” She nuzzles her head into my arm. “And love!”

“Yup. And you give me, well … everything.”

She rolls her eyes and laughs.

“Mama, did you always know you’d be a mama?”

“Yup.”

“Even when you were a kid?”

“Yup, even when I was a kid.”

“Oh, yeah, that’s right – you said you’d decided when you were my age that if you had a daughter you’d name her Ashley. I forgot.”

I smile. “Yup.”

“But then you didn’t. Tell me that story, Mama.”

I laugh. “Not much of a story, kiddo. I think you pretty much covered it.”

“By the time you had me, you didn’t feel like that was the right name anymore.”

“That’s right.”

“I like my name.”

“I’m glad. I think it’s perfect. I couldn’t imagine you being anything else.”

“But how did you know you wanted to be a mama?”

“I just did, baby girl. It was what I was born to be. But not just any mama. YOUR Mama.”

“And Brooke’s too?”

“Yup. Brooke’s too.”

I wrap my arm around her and squeeze her shoulder as we walk. “You made me whole, little one.”

“That doesn’t make sense, Mama. You were already whole before you had me.”

“Well then, you made me wholer.”

“Um, Mama? That’s not even a word.”

God, she is so .. TEN.

“It is now.”

She gives me a gentle shove. “Is not.”

“Ok, fine. But there was always a space for you inside of me. Maybe it wasn’t actually empty before it was full. Maybe it was just waiting to expand when you were ready to climb in and open it up.”

“Um, Mama? If that means what I think it means, then it’s really gross.”

“Oh, good Lord, child. Let’s just walk, shall we?”

“OK.”

We walk quietly.

“Mama?”

“Yes, baby?”

“I love you.”

I smile. Game on.

“I love you more.”

“Do not.”

“Do too.”

“Not.”

“Tie?”

“Nope, I’m bigger.”

“Fine.”

We are coming up on the ice cream shop. I count down.

Five. Four. Three ..

“Mama?”

“Yup.”

“Can we get ice cream?”

“Nope.”

“Dang it, I thought I had ya.”

“Nice try kid.”

Cue eye roll in three, two, one …

Yup, I was born to be her mama.