white house part six – it’s about people

Ed Note:

I hope you all had a wonderful Mother’s Day. If you missed yesterday’s post you can read it —HERE –. You can also read a little bit about our day in Katie’s post by clicking —HERE –. Sadly, her account ends just before the ‘family hike’ (which turned into a walk which turned into the girls scootering to the park) which abruptly turned into a hobble back home when Katie fell off her scooter, flew tush over teakettle and found herself eating the sidewalk. Nothing like a skinned knee and a fat lip to top off a great day. Oh yeah, good times.

And now, back to the White House, the letter and the picture. 

Part One

Part Two

Part Three

Part Four

Part Five

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*

**

Assistant Attorney General Perez scrambled to review the session before we were escorted out of the conference room and back to the auditorium in which we’d begun the day. Given extremely limited time, he did a remarkable job of summarizing the issues raised.

As everyone gathered their things for the walk back, I made my way over to the front of the room. I waited as AAG Perez finished one brief conversation, then another. I was sure someone was going to come and drag me out the door, but I waited nonetheless. As he finished talking and reached down to gather his notes, I seized the opening.

I told him that I was grateful for his time and that I wanted to give him something. “This,” I said, “is a letter that I wrote to President Obama that I’d like to ask you to read as well.”

Ed note .. You can read my letter to President Obama –> HERE <–

I handed him the printed copy, which he added to the pile of papers in front of him. And then I took a deep breath.

“And this is a picture of my girl.”

I offered him the photo – a close-up of Brooke from our vacation the week before – smiling, her beautiful eyes aglow. I held onto it just a second too long before handing it over. The only words I had were, “THIS is why I’m here.”

He took the photo, thanked me and we hurried out of the room behind the rest of the group.

I would later tell Luau that the moment had been awkward. It had felt like an odd thing to do under the circumstances. I would also tell him that I would do it a thousand times over again. I NEEDED him to see my girl.

Our conversation that day was not theoretical. It was not about numbers nor statistics nor money saved or spent. It was about PEOPLE. It’s ALWAYS about people.

I trust that given his role, AAG Perez knows that better than most. But I also believe that it’s my job –  no, my sacred responsibility – as Brooke’s Mama to make sure that no one can ever forget it.

**

White House Part Seven – The Wrap Up coming tomorrow. Finally.

14 thoughts on “white house part six – it’s about people

  1. Perhaps a bit awkward, but I am sure that her picture may be what keeps everyone in the white house on track.

  2. Amen. I agree with Jersey and will add that – ‘I think having such a beautiful face to put with the DISorder (as in chaos of a busy day) also helps make it more real and important.’

    YOU made him stop and HAVE an awkward moment, but heck that’s the point! Get the attention and make it about the people.

    Love it.
    xo

  3. and NOONE will forget that beautiful little face – the face that represents so many….. I think that “awkwark” moment, just may have been the most important moment of the trip. As always, GREAT JOB!!

  4. I think it is a great idea. Someone told me early in our “finding the appropriate school” process that to make sure to have a photo of my son in the papers I brought in so that everyone knew we were talking about a real boy. I did this, I had the most beautiful (disarming) picture of him on the front of the folder so that he sat effectively in the middle of each meeting until he was accepted. I think it was one of the best suggestions I had heard because then they HAD to think about him not some theoretical child that could be written off. So that they could see their own children in his eyes and face.
    That’s why what you did was a very good idea. Well done.
    Eva

  5. That picture of Brooke is absolutely beautiful. And to heck with the awkward moments, I say bring them on in droves if that is what it takes to humanize this disorder for our decision-making body. It is so easy for us as parents to see the humanity in autism because by design we do. We search for it in every interaction. It is much more difficult for those like legislators and law enforcement to see “it” by design as well. So often they focus on the statistics and needs and paperwork rather than the narratives in order to remain “objective.” And well your simple act, sharing a photo, grounds the issue. It brings autism out of the ethereal mist of stats and numbers and disorder, and makes it viscerally centered. What do they say? A picture speaks a 1,000 words or something. Well, this photo speaks volumes. Again, and I’m sure I’ll say it no less than a million times more…Thank you!

  6. I always bring a picture of Andrew to the IEP meetings. The people that don’t know him or interact with him every day need to know who he is. They are usually the ones making the decisions. Kudos on bringing, and handing off, the picture and the letter. Well done.

  7. Awkward moments can make for some of the most remarkable impressions. I have confidence you made a good one ins spite of how it may have felt to you. 🙂

  8. Awkward or not I commend you and I wish we could all hand over pictures of our children. They need to see the faces, hear the names, and never confuse these precious gifts as numbers on a sheet of paper. Trust that he will remember you; the woman who patiently waited her turn, who relinquished a photo of her child with such strong emotion as if she were handing the child over directly. If the man is human at all he will remember.
    That’s what we have as advocates, a life of awkward moments that draw people to listen, to recall. It’s all we have…

  9. A stunning photo of a stunning girl. Yes, this is the face of autism. So is Bells’ face. And Louis’. And, and…we come in all different flavors. We spin, we rock, we roll, we love.

    Thank you for representing us, Jess. hugs, gail

  10. Jess,
    Thank you for continuing to share your White House experience. I think including the picture of beautiful picture of Brooke was the right thing to do and I am so happy you thought to do this. I hope the letter will get a response.

  11. A beautiful baby from a beautiful mommy. “Oak trees and acorns”, you always do the best thing to do.
    Love,
    Dad

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