the white house, part one

*

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 ..

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48 thoughts on “the white house, part one

  1. Thank you for sharing this, Jess. I’ll bet that lunch was barely touched – not a good thing on a day when you felt like vomiting on your shoes. I am sure I speak from all of out here in comment-land (and especially all of us “just moms”) when I say we are proud admirers of the way you handled the experience.

  2. Community advocate is what you are!!! SO glad you were there for us. Was there anyone from the Department of Defense?

  3. A mom and so much more. I’m on the edge of my seat here and can’t wait for what’s next. Reading this, there’s no doubt in my mind that you were the perfect person to be there as our “parent advocate”. So so proud.

  4. DOAM you know how I hate the “To be continued” stuff….ugh. All kidding aside, WOW, just WOW!!!! Oh and in my world, there is nothing wrong, with “just a mom”. Not a damn thing!

  5. Being just a mom got you there, how great is that? I have a 14 year old daughter with an Intellectual Disability and I wear a lot of hats for her. If she didn’t have an ID I never would have become a special needs advocate, would never have fully understand the struggles of our respective communities and would never have understand the journey we take day in and day out for acceptance. I tell my older daughter that we are who we are because of my younger child. Everything we do makes us stronger for the next step. There is so much around the corner!
    All the best.

  6. Mom. Therapist. Wife. Caregiver. Advocate. Friend. Cheerleader. Bodyguard. Teacher.

    Each of those warrant you a spot at that gathering, and you are all of them.

  7. Way to go Jess. And what a vivid picture you paint of your experience. I love it…and am on the edge of my seat waiting for part 2.

  8. I can’t imagine how amazing and overwhelming it all must’ve felt at the same time. Sounds as though you handled it well though (minus the “just a mom” thing ;)). It kinda makes me feel like my three-part Boston Marathon Race Report is pretty self-indulgent though!

  9. You did us proud Jess!!! You are waaaaaay more than just a mom – you are a GREAT MOM!!! and advocate….. can’t wait for part 2!!

  10. I know I keep saying how in awe of you I’ve been since you were born but it’s absolutely amazing to me that you do all you do so incredibly well even when you’re terrified. ..and as I said yesterday on the phone, you even did it looking beautiful and with exquisite shoes on. I am another incredibly proud Mama.

    I love you,
    Mom

  11. The word Mom encompasses so many things today. We do so much for our children on a day to day basis that the most wonderful word to hear is Mom.

  12. will reiterate what many others have said – “just a mom” is the most important job/role you have. being a mom is the hardest job I have, but the best part of my life – with all its’ ups and downs

  13. All I ever wanted to be was just a mom. Wear it proudly, just a mom is just about the most important thing a person could ever be! So proud to know you and have you speak for us, I’d still be cleaning my shoes :)

  14. Jess, Mazel Tov on a great start! Can’t wait to read parts 2, 3, and beyond. BTW, I had no idea there was such a crisis in the Somali American community. What is that, with one in 28?!

  15. I’ll tell you what a full time job is easier then just a mom especially when you’re a special needs parent. They were lucky you rsvp’d yes. Can’t wait to hear the rest.

    oxoxooxox

  16. We are all “Just”. Really, do titles mean anything? At the end of the day we all go into our childrens room, kiss them good night and lay down to sleep. Granted, some of us lay on silk sheets and others lay on hay but at the end of it all we are all JUST parents. The title of “Mom” is noble. Queens are “Moms”. So my dear “Mom”, you are important and should not feel any different in the House we the public provide for the leader of this great nation who, was brought into this world by a ……MOM.
    The SGM

  17. We are all so proud of you for putting all of our words into one voice. You are amazing and I for one and honored to have you representing us. I had even decided to write a blog of my own then after continuing to read yours. There is no way I can verbalize my own feelings and struggles more than you do. Isn’t that crazy – we don’t even know each other and yet,,, we do.

    So proud of you.

    With kindess,
    Mishele

  18. Still chuckling over Brooke’s “my house” reply (and proud of your restraint in not using it as well). I literally cannot wait to hear about the rest of your experience, and those three crucial minutes. I know you did everyone, and most importantly, yourself, proud. Your friend is right. You did warrant a place there, even if you were “just” raising your daughter to be the happy, productive individual she has become. In addition to “mom” and “advocate”, I humbly propose “writer” as well, woman!

    Congrats, and hope the entire DC experience was wonderful!

  19. First, a big thank you!! A very big thank you! I feel confident that something will come out of of yesterday’s autism summit(not sure if that is the correct word but it sounds official) The progress might be slow but there will be progress. Think of how far Brooke has come…I think about how Dawson has come….just know the three minutes that you spoke will make a difference…it does have an impact….just think of the seconds that our little guys look into our eyes…the amount of time it takes them to make their first utterance of a word….it might take hours to get there….and the results may only been in mere minutes or seconds….but they all count….
    thank you again for your commitment to not only your family but to the entire autism community!

  20. I can’t imagine how you made it through the day without crying, too. I was crying as I read just this first part of the story. *sigh* You are an amazing advocate, community activist, teacher, leader, business woman, parent, friend. No one word can ever encompass the sum total of who a person is or the roles they play. And you play all of yours so well, my friend. So very proud of you. xo

  21. …”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.”

    But you did.

    Like your mom said, I too am in awe of you. Thank you for being MY voice, OUR voice, yesterday. Those children whose names remain etched in your heart, I’m sure, thank you as well because you gave to them, and to us, the very unique opportunity of being validated and humanized in your presence and in your words.

    Thank you, Jess, for bringing who you are, who we are to the table.

    I will carry this small, but vitally important moment in heart as well. I look forward to learning more about your day.

  22. Congratulations on being invited to the White House! You have advocated for our children in a way that most of us will never have the opportunity to. I am very glad that you were chosen to represent us, and I’m certain you handled the responsibility of that with grace and effectiveness. I can’t wait to read Part 2!

  23. enormity is definitely the word, yikes.

    one day, brooke will reflect on what you did. i have no doubt she’s reflecting on it now, aware of it. but one day she’ll pause and think, “wow. my mom went to the white house to fight for me.”

    the love you’re showing her, the very deep love…

    enormity is the word.

  24. HA JUST a mom? I think NOT my friend..

    Like Erika said in her post, “Community Advocate” has a ring to it… I like it.
    Kris

  25. I will read as posts as it takes for you to tell what you can. I’m so relived that it was much more than one or two people standing up to address an audience for 30 min. I’m very interested in the personal stories of those attending as well as information discussed in the individual sessions. Is their any idea why Somali’s ratio is 1:28 ?!?!? I pray ours doesn’t get that high.

      • I wonder if it is anything to do with the high level of stress their mothers would have been under. Actually even their fathers with all the stress of leaving Somalia under the horrific circumstances that many did. I wonder if that is why the military families have a higher rate of autism as well. It would be interesting to look at the autism rate in all displaced communities, because the Somali’s have tended to stick together then the rate has been seen but in other refugees that have spread through out the community, the rate might not be as obvious.

        Just a theory of mine because our son’s autism became apparent only when he was put under stress (it was there before but it took the stress to make it obvious). Not only that but I have watched another child who is NT exhibit autistic traits when under high stress, he teetered on the edge for a while until the stressors were taken away and he then reverted to NT behaviour. Something tells me that stress has something to do with the cognitive development. I am not a researcher though, “just a mum” :).
        Eva

  26. on the edge of my seat and looking forward to hearing the rest of your experience. So grateful that you share….

  27. I’ve had that “I’m just a mom” moment happen to me too. I will also file away “parent advocate.” It’s hard to write about events like this one. Thus far you have done well. Now I’m off to go read about the Somali-American community. I didn’t know about them.

  28. I know you must be wiped out, but THANK YOU for representing and for taking time to share it. Cannot wait to hear the rest!!

  29. Jess take the time for your family when you get back… The details can and will wait… Sometimes you just need to take what’s important and push everything else aside…

  30. Really, this is about all I can say… Thank You for being there for US. And representing “The Club” that you have welcomed us all into.

    I personally cannot stress how important your mentoring, coaching, learning, and friendship truly means.

  31. Thank you for sharing this… I especially enjoy the descriptions … With this I feel I can close my eyes and imagine I was there… Because I was there in spirit, so well represented by a fellow parent advocate. But also my teacher and friend. Thank you for taking me there.

  32. Pingback: These Are The Times To Remember « Try Defying Gravity

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