Tagged with self-advocacy

king of anything

king of anything

– For Christmas, nearly everyone in Katie’s world pitched in to buy her a piano keyboard. From the moment that she got it and began playing around with it, I started asking her if I could record her singing something. Anything. Because, ya know, I’m her mom and that’s what moms do. And each and … Continue reading

on being heard – with barb rentenbach

* As you may recall, last week was an eventful one here at Diary. The Reader’s Digest version goes something like this … I wrote a post called Rethinking Functional Behavior and the Tyranny of Made-up Deadlines. In that post, I cited my new favorite author and friend, Barb Rentenbach. In so doing, I unwittingly … Continue reading


~ Three times in the last two weeks, I have been asked some version of the same question. Why do you continue to engage with Autism Speaks when you clearly find so many things about the organization so troubling? Three times, I have answered essentially the same way. Because they are visible. And because they … Continue reading


~ Things had gone downhill quickly. We’d made a gross tactical error, deviating from the plan. Sometimes Brooke can handle it. She can evoke the F word – Flexible! – but this wasn’t one of those times. We were on our way to Toys R Us in search of a video. Katie suggested we stop … Continue reading

a conversation with ari

. ~ The back story Ed note: Ari Ne’eman is Co-Founder and President of ASAN, the Autistic Self-Advocacy Network. He is also a Presidential Appointee to the National Council on Disability. Ed other note: Since my conversation with Ari was not ‘on the record’, so to speak, I’ve limited the following to my side of … Continue reading

the star

  “When the day of the nativity was passed, the Star ascended up into the firmament, and it had right many long streaks and beams, more burning and brighter than a brand of fire; and as an eagle flying and beating the air with his wings, right so the streaks and beams of the Star … Continue reading

the hearing

~ C-Span’s Coverage Of Yesterday’s Congressional Hearing On The Federal Response To The Rising Rates Of Autism . “It’s an ethical mistake whenever we sacrifice the possible in the name of the probable. As national nonprofits, like government so far, we too have failed to lead. Our centrists have frequently been too hesitant, but more … Continue reading

nothing about us without us

. Ed note: Yesterday, I sent the following letter to Autism Speaks Co-Founder Suzanne Wright, President Liz Feld and three others. I added the links this morning for your reference.  ~ Dear Suzanne, Liz, et al, I hope this finds you all well. I was thrilled to read yesterday that the House Oversight and Government … Continue reading