where to begin

*

I have no idea how to begin to process yesterday’s meeting with Mike, no less write about it. It was monumental on so very many levels.

From a personal perspective, I still can’t quite wrap my brain around the fact that I spent nearly two hours (in what was scheduled as a thirty minute meeting) discussing autism at the White House with a senior advisor to the President of the United States. But really, that was just the beginning.

Mike gets this. He really, really gets this. He knows our struggles because he lives them. In fact, he lives them to a far greater degree than I do.

He’s doing a lot more for us than we can see. Like a LOT more.

Government doesn’t work the way we want it to. It just doesn’t. It lumbers and plods and trips over its feet no matter how badly we may need it to sprint. Mike gets that too. And he’s doing everything he can to get it to at the very least jog.

There are lots of long-term things to do, but he’s also working on what we need today.

I am deeply grateful to Mike for his time, for his warmth, for the generosity of his spirit and for his service to and his representation of our families in the administration.

I have pages and pages more to write, but I’m simply not ready or able to do him or our conversation justice. In part because three hours of sleep really isn’t enough to do anything justice.

So instead of rambling on, I’m going to share the following.

You may have read the letter that I gave Mike to give to his boss yesterday. Well, it turned out that I wasn’t the only one who had something to say to the President.

The night before my meeting with Mike, Katie went to work. Unfortunately, I had to (clumsily) blur out her real name and our address, but I think you’ll get the point nonetheless.

I had been fairly happy with the letter that I’d written. But I’m pretty sure that this one blew it away.

See for yourself.

*

Dear Mr President,

My name is [Katie W]. I think that you are a very good president and I hope you get re-elected.

I would like to ask you to do everything you can for people with autism, like my little sister, [Brooke]. Good luck with the election!

Sincerely,

Katie

Age 11

[Boston], Massachusetts

And here’s Mike, indulging a Mama moment.

Told you he was awesome.Β 

More to come, my friends.

Far, far more to come.

24 thoughts on “where to begin

  1. Love, love, love. I can only imagine how liberating it must have been to talk to someone in politics who totally gets this community. Amazing. So happy for you…for our community. Thank you!

  2. That was (once again) incredible of Katie! Thank you, Mike for all that you do! And, Jess, thank you and Luau for letting me know you arrived home this morning at 1:00 AM. I can’t stop being a Mama.

    Love you,
    Mom

  3. Simply magnificent. Thanks and congratulations all around — now get some sleep, both to do yourself justice and to do justice to all that you have to tell us!

  4. While I am so excited to hear more, you should know that following your Facebook posts last night, I just kept wondering if you had to get up this morning. And while my brain does indeed process that a meeting at the White House is unbelievably more important to the big picture, I really hope Brooke was able to sleep last night. That is why you are my hero, because you find a way to advocate through the muddy exhaustion that is our lives. Get some rest Mama (and Thank You!)

  5. The journey of a thousand miles still begins with that same single step…regardless of whether that step is a crawl, a walk or a sprint. xoxo

  6. I wanted to add how much I love the smile on Mike’s face. You can tell it’s the real deal, not manufactured for a photo opp. ❀ him without even knowing him.

  7. Katie’s letter is PERFECT! I hope you get some much needed sleep tonight, and wake to tell us more! I’m on pins and needles over here! πŸ™‚

  8. So cool. Can’t wait to hear more.
    Katie – your letter is great and I’m going to show it to my kids tonight so that they can see how important it is for young people to get involved. Thank you for representing all the siblings who want to make the world a better place for their brothers and sisters.

  9. Thank you for being such a great advocate. I’ve attended many meetings over the years on The Hill and always wonder if the information is getting through to the decision makers. So many frustrating meetings with bored (young) staffers that have no life experience as a parent. I think to myself … just you wait a few years, have a child and then let’s talk! I’m ecstatic you had the opportunity to speak with a WH Senior Advisor for two hours! Keep up the good work!

  10. Oh, how Iove that picture of Mike holding the letter. Amazing man and great American.
    Semper Fi,
    Karen

  11. Thank you, Jess, for representing our families so well everywhere you go and every time you write/post. And thank you, Mike, for representing our families in the White House too. I feel like our children are in good hands if Jess and Mike are sitting together at the White House sharing their personal stories and imagining how to ease the burden on families living with autism nationwide.

  12. Wow! So great! I have a friend who is trying to get services for her son, in VA, no less then 45 minutes from the White House. I can’t figure out what has changed since we went through this that has made it that much more difficult. I’m so frustrated for her. She gets stonewalled everywhere she goes, and is told 70K/year, period. She went to an attorney and paid 400 for the consult, then was told she needed to pony up another 2K for “assessment”. What kind of assessment does an attorney do? I ask her. She wasn’t told. It makes my blood boil, because it’s not rocket science–I know- I did it with two at the same time. I told her to be persistent–like a pebble in a shoe. Don’t go away, and speak firmly. But I want to give her more help, more information. Any advice?

    • Unfortunately what’s changed is money. There wasn’t enough a few years ago, there’s less now. More kids in need of services and less dollars to provide those services = stone walls. Your advice was good. Don’t give up. Document everything. Find an ally within the system. And keep going up the line until you find someone with the power to help. It’s heartbreaking, but it’s also the current reality. Glad she has a veteran to help her navigate.

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