Comments on: More Thoughts on Recovery After an Interview

By: Saturday with Friends and a Black Van

Saturday with Friends and a Black Van — Sun, 19 Oct 2008 16:46:01 +0000

[...] in June, Jim and I were interviewed by Todd Drezner, who’s making an autism documentary called Loving Lampposts. Yesterday Todd [...]

By: MikeO'Neill

MikeO'Neill — Thu, 03 Jul 2008 03:50:01 +0000

Thanks Kristina. while I still have hope that Thadd will recover to at least be at an aspbergers level, I saw him at lunch today and listened with my eyes and saw that its possible I may never get more than I have of him now. I will keep trying though I realize I must be ready to accept that. We parents are in this together, even if we choose different paths of treatment/recovery/non recovery.

Thadd’s ABA is 450$ a week. speech is paid by the shriners except $ 80 a month. The w holistic pediatric is $900 (average) every 2 months. GFCFSF 50% organic diet is not cheap! Family is helping out as the above is more than my salary. Recently fl passed legislation to force insurers to provide aba. Problem is…hehehe.. they dont include the specialists on the plan. So he can go to a regular phd for a visit @ 45$ hr co pay or the same specialist for 55$ hr out of pocket. Thanks FL legislature.

I have a disdain for american “commercialism” and war. Hard to believe the pentagon can be a role model for anything. I would however like to see more assistance for familys with special needs kids.

–Peace

By: Kristina Chew, PhD

Kristina Chew, PhD — Thu, 03 Jul 2008 01:41:21 +0000

That is sad and awful----reading about the back and forth between the parents and everything..... The movie is Loving Lampposts. The filmmaker is Todd Drezner who has a young son with autism and he's done lots of interviews; I saw clips of Kassiane Sibley, Phil Schwarz (of AANE)....and Jenny McCarthy (at a certain conference in Atlanta). Yes, a journey of becoming and still so much to learn.

By: Laura

Laura — Wed, 02 Jul 2008 20:46:24 +0000

Not to be a broken record, but great post.

Bonnie,
I heard about the story you linked to on my local newscast. The video footage of the dad with the son was so touching, but listening to the narrative was like getting punched in the stomach. That poor boy.

By: Bonnie Sayers

Bonnie Sayers — Wed, 02 Jul 2008 20:25:51 +0000

I was just checking out

http://disability.alltop.com/

a friend writes deaf mom

and I spotted autism vox on there.

By: Bonnie Sayers

Bonnie Sayers — Wed, 02 Jul 2008 20:23:27 +0000

Looking forward to hearing more about when and where for the interview. My Dad worked for many years with the Port Authority of NY and NJ as an air compressor mechanic, they were one of his clients. Should be an interesting book Jim is writing.

I just read a very sad story on a boy who also has cancer and his Mother did not follow thru on that treatment and he is dying.

http://www.boston.com/news/local/breaking_news/2008/07/saugus_man_call.html

By: Melody

Melody — Wed, 02 Jul 2008 20:07:53 +0000

It seems like, especially with the biomed, that there’s this message being put to parents: get your autistic kids to do x and y and z, or else you’re failing them by not doing all of our diets and procedures. Really, though, the thing about autistic people is the unusual ways we develop – some people will gain a lot of skills quick, or slow, and there’s all kinds of fluctuations and variations on this. For me, I gained skills in academics and abstract reasoning while consistently losing skills in concrete/rote learning and speech, meanwhile my self-care skills have been slowly improving over my lifetime. And then there are spurts and there are delays, and my stimming will go up and down, and it’s basically taking different paths to get to different places.

By: Christine

Christine — Wed, 02 Jul 2008 18:45:47 +0000

Kristina, what a wonderful post. I often think of those first days, well, months. … years, as a real period of liminality. Growing and learning as the parent of a child with autism is really a journey of becoming. At least for me. And it seems for you, too. So thanks for sharing this.

By: Tara

Tara — Wed, 02 Jul 2008 17:49:11 +0000

@Club 166,

my hypothesis: that’s possibly because those people just might have some real perspective on what the war actually looks like and autism is, after all, something in very different category…

For most people word “war” is really about an idea and at best something that happens to someone else, somewhere far, far away so they have the luxury of using it lightly…

By: Kristina Chew, PhD

Kristina Chew, PhD — Wed, 02 Jul 2008 16:46:27 +0000

@Club 166, I thought the same!

@M, an unraveling—-unreveling—-non-revelation……