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 ..