Difficult but essential conversations Adults with disability talking with parents of disabled children:

Update: I've changed the title of this post, deciding to have one big enormous post for both last weeks (days 1-5) and this weeks (day 6-10), plus responses.

At The Thinking Person's Guide to Autism, Conversations between Adults with Autism and Parents of Children with Disabilities, Including Autism.

Why the dialogues?

....being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect -- especially when it affects our ability to work towards common goals.

Building constructive conversations and creating real social change isn't a garden party -- it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that's fine. You don't have to participate in these dialogues to learn from them.

• Link to the whole series
• Monday, September 19, 2011: Zoe of Illusion of Competence to Robert Rummel-Hudson
• Tuesday, September 20, 2011: Robert Rummel-Hudson to Zoe
• Wednesday, September 21, 2011: Ari Ne'eman of Autistic Self-Advocacy Network (ASAN)
• Thursday, September 22, 2011: Zoe of Illusion of Competence
• Friday, September 23, 2011: Robert Rummel-Hudson
• Saturday, September 24, 2011: The Self-Advocate/Parent Dialogues: Intermission
• Monday, September 26, 2011:  Melody Latimer
• Tuesday, September 27, 2011: Kassiane
• Wednesday, September 28, 2011 Amanda Forest Vivian
• Thursday, September 29, 2011 Kristina Chew
• Friday, September 30, 2011 Paula C. Durbin-Westby

Responses on or after Monday, September 19, 2011(I Will Be Updating This Silently)

1. Monday, September 19, 2011 Landon Bryce, "I Just Think I'm a Problem": We Are All "Like That" at ThAutCast
2. Tuesday, September 20, 2011 John Wills Lloyd Gaining Perspective at EDB Blog
3. Tuesday, September 20, 2011 Sam,  Autistic Self Advocates and Parent Advocates at Uncle Sam's Blog
4. Tuesday, September 20, 2011 Landon Bryce Letter to a Broken Shepherd at ThAutCast
5. Wednesday, September 21, 2011 Andi, The Advocacy Wars: Different not Less at Bringing the Sunshine
6. Friday September 23, 2011  Landon Bryce, Parents: How, and How Not To, Listen to Adults with Autism at ThAutCast
7. Friday, September 23, 2011 Neurdivergent K, "Dialogue", Disillusionment, Disheartening at Radical Neurodivergence Speaking
8. Friday, September 23, 2011   Kim Wombles, Insert Deep, Meaningful Words Here at Countering
9. Saturday, September 24, 2011 Emily Willingham, The Importance of Open Discussion at  A Life Less Ordinary
10. Saturday, September 24, 2011 Robert Rummel-Hudson Dialogue at Fighting Monsters with Rubber Swords
11. Saturday, September 24, 2011 Neurodivergent K On the Dialogues and the Accompanying Twittergate at Radical Neurodivergence Speaking
12. Saturday, September 24, 2011 C.S. Wyatt  A Peek Inside Our Dysfunctional Community: The Thinking Person's Guide to Autism at AutisticMe
13. Sunday, September 25, 2011 Dixie Redmond Day 16: Thinking About Autism at Northdixie Designs
14. Sunday, September 25, 2011 Landon Bryce The Importance of Being Emily at ThAutCast
15. Sunday, September 25, 2011 Sarah Some Thoughts on the Self-Advocate/Parent Dialogues at The Thinking Person's Guide to Autism at Kitaiska Sandwich
16. Sunday, September 25, 2011 Chris Erenata, On Parents Listening to Self-Advocates at Oh is THAT Right 
17. Sunday, September 25, 2011  Pia Prenevost, Sides  at the Crack and the Light and at The Autism Blogs Directory
18. Sunday, September 25, 2011 Emily Willingham, Listening to No Kid Gloves, No Muzzle at A Life Less Ordinary
19. Monday, September 26, 2011, Autistic, Everybody Has Two Cents  at AutisticSpeaks
20. Monday, September 26, 2011, Kim Wombles What We Fight For at Countering and Autism Blog Directory
21. Monday, September 26, 2011, Stuart Duncan, When Apples Talk to Oranges About Steak at Autism Father
22. Monday, September 26, 2011, Rachel Cohen-Rottenberg, Impact, Intent, and Dialogue at in the Autism Community at Journeys with Autism
23. Monday, September 26, 2011, Spectummy Mummy A Is for Advocacy at Spectrummy Mummy and Autisable
24. Tuesday, September, 27, 2011, Sarah, Well, Now They've Done It at Planet Josh
25. Tuesday, September 27, 2011, Autisms and Oughtisms What Are You Talking About: Of Whales, Ripples, and Advocacy at Autism Blogs Directory
26. Wednesday, September 28, 2011 Rachel Cohen-Rottenberg A Protest March is Not a Dialogue at Journeys with Autism
27. Wednesday, September 28, 2011  Laura, Seek First to Understand at House That Asperger Built and Autism Blogs Directory
28. Thursday, September 29, 2011, Sarah, Advocacy: It's Complicated at Planet Josh
29. Friday, September 30, 2011, Emily Willingham Is the disability-rights movement different from other civil righs movements in a critical way?  at A  Life Less Ordinary?
30. Friday, September 30, 2011  Jean Winegardner Who Should Lead the Autism Rights Movement?  at The Washington Times
31. Friday, September 30, 2011 Jean Winegardner  On the dialogues and being an ally at StimeyLand
32. Friday, September 30, 2011 Alicia Lile  About the TPGA Series at Moonlit Lily
33. Friday, September 30, 2011 Kerima Cevik About the Dialogues at Autism Wars
34. Saturday, October 8, 2011 Sullivan Who Should Lead the Autism Rights Movement at LeftBrain/RightBrain
35. Wednesday October 12, 2011 Julia Roberts The Silo Effect at Support for Special Needs
36. Wednesday October 12, 2011 Shannon Rosa The TPGA Dialogues, Discussed  at Squidalicious

A modest (indeed, inadequate) listing of a few other resources:

• Derailing for Dummies  Quite a few commenters mentioned this website, which takes a tongue-in-cheek approach to providing "A simple, step-by-step guide to derailing awkward conversations by dismissing and trivialzing your  oppositions perspective and experience."
• From The Transcontinental Disability Choir: What is Ableist Language and Why Should You Care? a short introduction to the concept of ableism.  There are many others.
• The History of the Autism Network International: The Development of A Community and Its Culture by Jim Sinclair
• The Self-Narrating Zoo Exhibit by Zifendorf  "Coined by autistic activist Jim Sinclair, this term made its first Usenet appearance in 1994. It describes the position autistic people find ourselves in within most autism organizations, mailing lists, support groups, and even one-on-one interactions with parents of autistic children or curious professionals."
• A Neurodiversity Organization for Non-Autistics? by ASParenting
• Perspectives: "Who Has the Right?" By Emily Malabey at International Coalition for Autism and All Abilities (ICAA)

Comments

[writing jobs]

thank you for this wonderful blog. I've learned so much.

[Alicia Lile]

Thanks for the list.

[Chris]

So I have not gone through all of the posts, but since my son has a severe communication disorder that is not autism I was intrigued by Schuyler. So I am reading her father's book.

Wow. I am not quite through, all of it... but there is a definite sense of deja-vu. Except we had to wait until he was over two years old, not 18 months, before his lack of speech was flagged. And he was diagnosed with oral motor dyspraxia which may or may not be associated with a history of seizures... the PDD-NOS was never mentioned.

Oh, and the neurologist said he was too social to be autistic. Possibly because that was in 1991, which is before the DSM-IV.

In the early 1990s the only communication disorder I could find information on was hearing loss. My son's special ed. program was actually a direct off-shoot of the hearing impaired program. About fifteen years before (about the time the first form of IDEA was enacted), the hearing impaired program would get kids who could not talk, but could hear. So they created the special program for these kids with individual/group speech therapy, plus OT/PT and the use of sign language.

The books I read about disability and language disorders were all from the deaf culture. The most important ones were the Sesame Street books on sign language (many sign language books of that time did not even have the signs for "toy" or "play"), and Train Go Sorry by Leah Hager Cohen.

While my son's first expressive language was sign language, he refused to use it once he was able to speak... even though his speech is slow and labored. He really did work hard to speak, and yes, we will wait for him to finish a sentence. It may take him longer, but he does get there in the end.

Something I wrote about it years ago.

I am struck how similar Schuyler's story is to my 23 year old son. And how the story is so different. It is exactly like they are individuals!