mike

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I don’t know how to do this, guys. I really don’t. I don’t know how to write about my visit with Mike. You see, I come here every day and I tell my story. I talk about other people, of course, and sometimes their stories overlap with mine in such a way as to make them feel like my own. But they’re not really mine. They still belong to someone else.

When I tell those stories – the ones that aren’t really mine, I tell them with pseudonyms, hazy pronouns and broad-stroke generalizations. Because I share a lot. A lot more than most folks ever would. And that’s OK, because I’m the one making the choice to do so. And it’s a choice that I put a lot of thought into because in telling my story I’m also telling my family’s story – my husband’s, my girls’. And so we talk about it to the degree that we can – we make decisions about what to expose together.

But what happens when other people’s stories become so intertwined with mine that they can no longer be separated? What happens when there’s no way to hide the identity of the person I’m talking about because I’ve gone on for days about exactly who he is? And what happens when we connect – when our lives intersect in such a way that he is no longer a person in a role; an occupant of an office; a connection to the President – but instead a is now person with his own story – a dad, a husband, an advocate, a friend? What happens then?

Mike and I talked. We really, really talked. And when we talked we did what autism parents tend to do – we skipped the froth on the surface and dove right down into the middle – the part that matters.

He asked me who I am – what brought me to this to this place, how I came to be sitting in front of him in his office in the White House talking about my vision of what is possible for our children. He asked me about our autism – what it looks like, feels like, how we came to see it, recognize it, label it, understand it. And then he shared the same. He told me about his family’s autism – what it looks like, how they came to see it, recognize it, label it, understand it. He told me about its effect on his family, on him, on who he was and who he has become. He told me what brought him to this place, how he came to be sitting in his office in the White House talking with me about his vision of what is possible for our children.

It was, as conversations with other parents on this road tend to be, intense. In some ways, it was life-changing. It was one of those moments when you truly realize how much more unites than divides us. How similar we are, no matter how dissimilar we may appear.

We shouldn’t have a whole lot in common – a black attorney from Chicago and an East Coast white chick who would have sooner chewed glass than gone to law school. But in every part of our stories, the commonalities were far more obvious than the differences. Our kids may have been the starting point, but they were by no means the end of our bond.

Mike spoke without a filter. He told me what he sees, how he feels, where he thinks we can make an impact now and where we will simply have to keep plodding through the muck, waiting for the right opportunity to strike. He told me about some things that are happening behind the scenes – interdepartmental coordination, nascent public /private partnerships, proposed legislation.

I told him that I thought it was vital that the administration bring its efforts out from behind the curtain and share them with the community. I explained to him that from where we sit, until we see what’s happening to help our kids, we have to assume that NOTHING is happening. That until the President stands up and publicly acknowledges that he gets this, we have to assume that he doesn’t. That until we see tangible support, we have to believe that none is coming.

We talked about how to do that. We brainstormed different ways to communicate – to tell the community what’s happening, how things are changing.

And we talked about where we need help. We talked about early identification and intervention. We talked about the desperate need for appropriate housing. We talked about the dreaded Transition – I told him that it’s referred to as the Cliff of Twenty-two – when services simply stop and our kids come crashing down to earth with nothing to cushion the fall. We talked about how we are failing our military families. We talked about ABLEs accounts and employment support. We talked about partnerships with the private sector to create sustainable change. We talked about insurance and the desperate need to create some kind of minimum standard of care across the country. We talked about the scarcity of good, coordinated support outside of the fifteen cities in which it currently exists and the difficulty of accessing services at all in rural areas.

I’ve said it before, but I think it bears saying again. Mike gets this. He really, truly, viscerally gets this. Because he lives this. Day in and day out, he lives it.

This isn’t his job. But he’s finding more and more ways to incorporate it into his job. Because he is in a position to make change happen, he knows that he must. And I believe that he will.

There is no magic wand. As much as we may want to, we won’t wake up tomorrow to find a world that looks different from the one that we close our eyes on tonight. But it will happen. Through the dogged determination and unrelenting tenacity of people like you and me and Mike, it will happen. Because when people in the seats of power take up the mantle of advocacy, change begins.

But in sitting and talking with Mike about his journey to where he is, I realized yet again that ‘power’ may not be what we think it is. Sure, working at the White House comes with power. But so does working in an elementary school or a supermarket, running a small business or teaching history at a liberal arts college. Each of us has the ability to use what we have to affect change where we are.

And with one in eighty-eight of us or our kids or someone we love on the autism spectrum, we are everywhere. Even, thank God, the White House.

*

Thank you again, Mike, for so generously offering your time, your story and your heart. Now go change the world, k? (No pressure.)

23 thoughts on “mike

  1. I’ve already felt the power of Jess’s boot. This is what she does best– remind us that no matter where we live, or what else we do in our lives, *we* can make change. Talking about autism makes change, asking for help makes change, offering help makes change. And maybe the most amazing part is that when we act, others come along.

    We are the cavalry, we are the cavalry, we are the cavalry! Although this rider is currently hoping caffeine will kick in and that today the saddle might have a little extra padding. : )

    Thanks, Mike, for giving up time in your day full of important work for *this* important work. We’re so glad to know you’re riding with us.

    Karin

  2. This is the start of an amazing story, Jess. I have no doubt that Mike will help to change the world.

    Love you,
    Mom

  3. Like I said to you Jess in my last pm….”brick by brick, heart by heart….we can build a Beautiful City!” Hugs from Tahiti! x

  4. Well, I think MIke rocks. I think you rock. I think your children and families rock. I think I am pleased as punch that you talked insurance. Otherwise, I think you said it all. Incredible.

  5. Thank you Mike, for getting it. Sometimes, that’s all we want to hear. That you get it.
    And thank you Jess, for your never ending efforts to bring our stories out from behind the curtain, reminding us we are in this with friends.

  6. I cannot thank you enough Jess, for all you do and say. My son is 13 and on the spectrum. We are currently trying to find the “right” anti-pscych. drug for him. It has been a nightmare. I am so thankful that there are mom’s like you that can speak for mom’s like me. Thank you for giving us a voice.

    • I have a 13 yo on the spectrum as well. Have you tried Abilify? My daughter is on it and we’re seeing good results with it.

  7. It’s true. Until there is public acknowledgement of what has been going on behind the scenes, we have to assume there is nothing being done, and that no one gets it. For that reason, I won’t let up on the efforts I have undertaken. Any time I’m at a function and I get the opportunity to speak about my boys, I will, and I will also let the military and governmental leadership know where they are failing all of our military families

  8. I can’t wait to hear more! Thank you seems so inadequate to express the depth of my gratitude to Mike, to you, and especially your family for what you did to make this visit possible.

    We already know that Brooke is moving mountains; it isn’t hard to see that it’s a family trait. 🙂

  9. given the way you’re such a selfless, gifted writer…can tell stories that focus, not just on your issues, but the issues others are struggling with as well…it’s a relief that you were the one asked to visit, talk with mike…you’re exactly the person he needs to hear from.

    you went…the community spoke…perfect. thx for doing this.

  10. I’ve been mulling over what to say here, and I’m still not sure. Thank you to Mike for being our voice in the White House. And thank you to YOU, Jess, for being an amazing advocate for us all. This is nothing short of awesome!!

  11. I’m grappling with the right words this morning. All I can say is that your meeting with Mike sounds like it was HUGE…monumental, even.

    Thank you for so eloquently representing our community. We are truly blessed to have you in our corner. And, you are right. We can all affect change in our little nooks and crannies around the country…you are an inspiration.

  12. …we are everywhere. Even, thank God, the White House.

    That phrase let me exhale… we are making progress.

  13. Jess,
    As usual… THANK YOU. Military families are so grateful that you have always included us in the conversation and gone so much further by taking action to see that those who serve are not forgotten in the mix.

    THANK YOU for your work in reaching out to Senator Kerry. THANK YOU for reaching out to the autism community and sharing our unique challenges. THANK YOU for sharing our stories with Mike.

    We all love you and appreciate the difference you are making for EVERYONE in the autism community around the world.

    xo,
    Rachel

  14. Thanks for the visit, Jess. Right…no pressure!:) And thank you to the community on this blog for supporting Jess. I was inspired and informed by our meeting. We have all made a lot of progress, but there’s SO much more work left to do. As for me, I’m fired up and…well, you know the rest!

    mike

  15. Thank you Jess and Mike for being a positive voice in our community and working to bring about positive changes! Your words inspire meto continue on and work to empower others along the journey.
    Semper Fi,
    Karen D. – Marine Corps wife, mother of 3 (one with autism)

  16. Thank you Jess and Mike….for getting it, and for working towards making sure that more get it too! We need positive change, and voices like yours are the ones that are going to eventually make it happen.

  17. “I told him that I thought it was vital that the administration bring its efforts out from behind the curtain and share them with the community. I explained to him that from where we sit, until we see what’s happening to help our kids, we have to assume that NOTHING is happening. That until the President stands up and publicly acknowledges that he gets this, we have to assume that he doesn’t. That until we see tangible support, we have to believe that none is coming.”

    Yes, yes, YES!!

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