white house part two

*

Read part one here

We were divided, based upon our pre-assignments into four groups of thirty odd people each. Each group was then led to a conference room where they would have lunch and offer input on their individual subjects.

I was thrilled to be heading to the session on Community-based Services, far and away the topic to which I felt most suited. I would have been equally at home in Education and Employment, but I was afraid I would have been pretty far over my skis in Public Health / Health or Research and Innovation. I sent up a silent thank you to whomever had assigned the groups. They’d obviously done their homework.

As soon as I walked into the room, I found a familiar face – a woman from Massachusetts who has started a foundation to offer support and resources to families seeking housing for their adult children with disabilities. I grabbed a seat next to her and met her companion – a woman doing similar work in New Jersey. Both had severely impacted young adult sons. I then introduced myself to the woman on my right – the mother of a twenty-one year old daughter and the founder and executive director of The Autism Council of Rochester, NY. I marveled at how much these three women alone had directly contributed to their communities and in turn, to all of us.

Our group had been assigned two leaders, ostensibly from two different divisions of the government. As it turned out, however, they were colleagues whose work together dated back to the Clinton administration and whose mutual admiration and respect was clear – Henry Claypool, Director of the Office on Disability in the Department of Health and Human Services and Tom Perez, Assistant Attorney General for the Civil Rights Division of the Department of Justice.

It was obvious from the room’s reaction to AAG Perez that he is hailed as a hero for his work on the landmark Olmstead case, the 1999 Supreme Court decision that forever changed the paradigm for institutionalization in this country, as well as for his more recent work in enforcing Olmstead in the State of Georgia.

Joining them was Sharon Lewis, Commissioner of the Administration of Developmental Disabilities.

We began by going around the room and introducing ourselves. The group was diverse. Mostly parents, many of adult children, nearly all of whom had founded, ran or founded and then ran a foundation of some sort. There were some parents of younger children, like the Somali woman I’d met earlier and was pleased to see in the room. And then, opposite the government officials were three autistic adults – two men and one woman who had come to advocate for their community.

I tried desperately not to stare at them, but I was riveted by their presence. The fact that they were there, advocating for themselves, well, God, that’s everything, isn’t it? That’s the goal, the hunger, the desperate prayer that gets each of us up in the morning. The hope that one day our children will be able to speak for themselves. Perhaps that they will be able to speak at all.

I looked for clues, for telltale signs of their places on the spectrum. The young woman wore a pin that said No Pity. She rocked slightly and looked up at the lights periodically, but no one would have noticed had they not been looking – or known what to look for. Over the course of the session, she would pull a host of fidgets from her bag. She didn’t have to worry about receiving my pity. I was in awe of her.

She introduced herself as Katie. She was an artist, receiving her Masters in Fine Art. The young man next to her was a PhD candidate in something complex enough that for the life of me I can’t tell you what it was. The third gentleman was an incredibly articulate advocate, serving on numerous boards in his home state of Vermont. They were a formidable group.

As it came closer to my turn to introduce myself, I found myself shaking. When do the nerves stop? When does this get easier? The women before me talked a bit about themselves and their work and then suddenly it was my turn. There was nowhere to hide, so I took a deep breath and said something along the lines of the following.

“My name is Jess. I write a blog called Diary of a Mom. I also run a page that serves as a gathering place for a community of nearly 3,000 people – mostly autism parents – as an offshoot of Diary. I have to tell you, I am here representing the children of every one of those people. For me, this is both an incredible honor and a grave responsibility.”

I choked back the tears that had been threatening to fall for days. I said something about being on the board of the Special Education Advisory Council in my city. I guess I needed to mention something with a title.

And then I nearly lost it as I continued.

“Above all, I am the mother (I was actually so nervous by this point that I got flustered and said, “I am the daughter of” and had to stop and fix it) a beautiful eight year-old girl with autism. And I must tell you,” I said, addressing my remarks to the autistic adults (and really to Katie in particular), “my greatest hope is that one day she can be sitting where you are today, doing this for herself if she so chooses.”

I then turned to the government officials and said, “Thank you so much for taking the time to listen to all of us today. I am very grateful to be here.”

As the woman next to me began her own introduction, I reached for my water bottle. I watched my hand shake uncontrollably as I brought it to my lips.

I looked at Katie. I thought of my Brooke. And then of Jack and Rhema and Devin and Nik and Ms M and C and J and K and my God, all of them, ALL of them. Too many. Far, far too many. I took a deep breath and decided it was time to get it together. There was work to do.

To be continued ..

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46 thoughts on “white house part two

  1. Thank you so much for being there and for thinking of our J and all of our kids. You have the biggest heart!! I am eagerly waiting for “installment 3.”

  2. DOAM, Dear God in Heaven this is too much to bare, lol! I am happy to proof read #3 today, this morning, okay early evening if need be. It’s a sacrifice but I am willing, for the cause and all:)
    Yes I peeked at my Christmas presents, even in my 20′s……

    • Lol. A delightful thought my dear, but there won’t be a part three until I write it at 4:30 tomorrow morning and it won’t be proofread until the moment before I hit publish around 5:45. Welcome to my world ;)

  3. Thank you Jess. You know I love you and am in awe of all you do for our community.

    On behalf of the Boy Wonder, THE DIVA, Sweet Baby Girl, Big Daddy and myself, thank you thank you thank you.

  4. Tears and frogs in my throat on a Wednesday morning. Thank you for your vivid memory of this wonderful experience. I constantly thank god that some way some how I found a place in your club as part of the unity that is our community.

  5. How do I express how much it means that you thought of my boy..? and all the other beautiful human beings like those we love and dream for.. That sort of love can move mountains.

  6. That’s what is so great about you – your truthfulness that you cry, that you feel it all while you are out there advocating for all of us!! You have such an inner grace, Jess…. we could all learn so much from you!

  7. “…thank God…I found a place in your club as part of the unity that is our community.” Joe, that is brilliant! I agree wholeheartedly.

    Jess, “thank you” seems not enough but it will have to do…you are …just…simply…without question…awesome, amazing, astounding and awe-inspiring.

    My gratitude knows no bounds.

  8. Wow…I can’t not wait until part 3…..I keep saying this in every comment, but thank you!! Also, you are a writer…and amazing, gifted…writer!!! Yes, I think you need to write a book!!I am sure you have been told this before….but your words are a page turner…thank you for your advocacy!!!! Thank you for your spirit!!

  9. Thank you for speaking for our children. My son cannot speak for himself and it is wonderful that there are people out there like yourself who are willing to do so. God bless you for all you do for our children.

  10. The fact that you thought of all of our children – so many times – during this day …? Means everything.

    Thank you.

    (And I would have been shaking too.)

  11. Ditto to breathless. Joy and heartache all wrapped up as one, like a Litmus Lozenge. (I know an obscure reference, but I’m sure that your girls/you have seen and/or read Because of Winn Dixie. And if they/you haven’t, you most definitely should because that’s what this is. It’s a Litmus Lozenge.)
    XO

  12. What an incredible experience and never ever apologize for the tears. You’re doing an incredible job for Brooke and all of the others and hopefully, Brooke and the others will be the self-advocates of the future.

    I love you,
    Mom

  13. As I head off today to a national meeting of a nonprofit that creates homes and communities of support and friendship with adults with intellectual and developmental disabilities, I am so glad to hear about a roomful of public figures, parents, and advocates engaged in keeping these issues on the front burner. Thank you for representing all of us, and for sharing the details with us. Now if only we could convince the voting public that this is an issue of national concern that requires our investment and commitment as a society. My hope is that the more we integrate ourselves and our children into our communities, the harder it will be to deny that there is something we can and should do as a society to support these families.

  14. Jess By making it the White House you have knocked down a huge barrier for exceptional children and adults every where. I hope one day I can make it to Parliment Hill in Ottawa, Ontario, Canada and advocate for persons with ASD just like you.For all of the tears that have been shed by families that live with autism one day will create a beautiful oasis where we will all feel excepted. xoxoxoxo from Canada and the Gizuk Family

  15. You Know I’m teared up! In awe of you that you actually produced audible words !….I don’t imagine if I opened my mouth, that sound would have come out. and Jess….it was extremely articulate at that ! Thank-You.

  16. sounds like you had everything to gain from the people in your company. lots to take in and process with time…and eventually write about if you chose. Clearly, Obama’s absence was his loss not yours/ours/the kids’. Moving ahead…destination:progress :)

  17. That is my greatest hope for Jack too. That one day he will be self-aware and independent and, most of all, PROUD of who he is. I want him sitting in that room too, should he so choose.

    Your words were perfect.

  18. I know Katie, and have met her in person before actually as well as knowing her online. She’s on Facebook. So cool you got to meet her. Was the PHd candidate Scott Robertson by any chance?

  19. You always bring light to the darkness and music where there is silence. We are all so well served by your brilliant mind, loving heart, and superior skills.
    I feel so fortunate to have you call me, dad.
    Love you so much,
    Dad

  20. This is the thing about you. I know I should be surprised, in awe, fanning myself with your awesomeness. And I am. Oh. I am.

    But this is what’s funny about how I feel about you: It’s just a given. OF COURSE you’re at the White House. OF COURSE you’re at Harvard.

    It was inevitable.

    We all do what we can do, and your special gift, m’dear, is that you speak eloquently for those of us who cannot. Thank you, thank you, thank you.

    As for future engagements, I can’t wait to hear what they are, but I assure you right now…I won’t be surprised.

  21. Jess thank you so much for representing us and our children at this forum. I, like you, hope that one day my son can sit and advocate for himself in such a role as those that are there with you. You not only bring tears to our eyes, but hope to our hearts. Thank you!

  22. You couldn’t tell you were nervous at all. I was really impressed by the way you spoke about representing 2000+ readers. It was a great session and I think good things will come of it.

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