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 ..