tag:blogger.com,1999:blog-19421951Sat, 04 Jul 2009 14:09:08 +0000life • love • learning <br> with a child at the edges of the autism spectrumhttp://autismsedges.blogspot.com/noreply@blogger.com (MothersVox)Blogger160125tag:blogger.com,1999:blog-19421951.post-5316157686512241518Fri, 03 Jul 2009 14:25:00 +00002009-07-03T13:09:20.315-04:00We "won" Battle: Least Restrictive Setting. We had our IEP meeting and Sweet M gets to continue at her current school and go on to middle school, entering the sixth grade in the fall.She could not be happier about this. She worked so hard in the past year — closing gaps in reading and in math specifically because she loves her school and wants to continue there. Two weeks ago her class toured http://feedproxy.google.com/~r/AutismsEdges/~3/5GrhZJXPyyQ/stakes.htmlnoreply@blogger.com (MothersVox)5<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/5GrhZJXPyyQ" height="1" width="1"/>http://autismsedges.blogspot.com/2009/07/stakes.htmltag:blogger.com,1999:blog-19421951.post-7307536115826288310Sat, 13 Jun 2009 15:40:00 +00002009-06-13T14:17:16.142-04:00Now and again we watch The Food Network's Iron Chef America, a game show that features a celebrity master chef like Mario Batali or Bobby Flay battling a challenger in "Kitchen Stadium." Their task: to make the best five-course meal in just under an hour using a featured "secret ingredient" such as trout, or flank steak, or parmigiano reggiano. The secret ingredient must be featured in each http://feedproxy.google.com/~r/AutismsEdges/~3/_Ny6EzBbgkU/iron-mom-battle-least-restrictive.htmlnoreply@blogger.com (MothersVox)9<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/_Ny6EzBbgkU" height="1" width="1"/>http://autismsedges.blogspot.com/2009/06/iron-mom-battle-least-restrictive.htmltag:blogger.com,1999:blog-19421951.post-1805991781683875478Tue, 19 May 2009 18:24:00 +00002009-05-22T13:10:32.070-04:00On Saturday we went to a potluck barbecue at the Woodstock home of a friend who is an advocate, educator and activist and the mother of a teenager on the spectrum. All sorts of families with kids on the spectrum were there and I was filled with a feeling — such a very rare and delicious feeling — peace and acceptance.The last time I had such a feeling was at the autism and advocacy conference http://feedproxy.google.com/~r/AutismsEdges/~3/3i8Fr1Q4K5c/whoa-oh-what-i-want-to-know-is-are-you.htmlnoreply@blogger.com (MothersVox)3<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/3i8Fr1Q4K5c" height="1" width="1"/>http://autismsedges.blogspot.com/2009/05/whoa-oh-what-i-want-to-know-is-are-you.htmltag:blogger.com,1999:blog-19421951.post-4098827948570406386Mon, 11 May 2009 19:41:00 +00002009-05-11T16:38:28.979-04:00About three months ago Sweet M was watching television with a headset on and she turned to me and said, "Hey M___, have you ever heard of a p-alarm?"I said, "A p-alarm . . . not sure . . . what do you mean?""You know," she said, "An alarm that helps kids who have my embarrassing problem?""Oh, a pee-alarm," I said. "Yes, I've heard of a pee-alarm. How did you hear about a pee-alarm?""I saw it onhttp://feedproxy.google.com/~r/AutismsEdges/~3/CnaqZPPmvc4/on-cultivation.htmlnoreply@blogger.com (MothersVox)4<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/CnaqZPPmvc4" height="1" width="1"/>http://autismsedges.blogspot.com/2009/05/on-cultivation.htmltag:blogger.com,1999:blog-19421951.post-5611630014856383087Sat, 25 Apr 2009 14:00:00 +00002009-04-25T14:04:54.536-04:00Some of you who've been reading this blog for a while know that I can be given to grumbling, griping, kvetching -- as we say in the fair city we've made home.So you would not have been surprised to have heard me muttering about the forty term papers that I was marking for one of the classes I teach at a nearby private university. On the whole they were a disappointing stack of documents. The http://feedproxy.google.com/~r/AutismsEdges/~3/JbXdGVG2IYQ/making-it-up-as-we-go-along.htmlnoreply@blogger.com (MothersVox)6<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/JbXdGVG2IYQ" height="1" width="1"/>http://autismsedges.blogspot.com/2009/04/making-it-up-as-we-go-along.htmltag:blogger.com,1999:blog-19421951.post-1581735996152951875Sat, 28 Mar 2009 14:38:00 +00002009-03-28T18:42:23.427-04:00Last month I went to California to be with my father when he died and to be with my family at his funeral. The funeral was exactly a month ago today.On the phone from California to New York, I asked Sweet M if she wanted to come out for the funeral and she said, "Uhp-hummm (feigned throat clearing), the school, uhp-hummmmm, the homework. Remember 'the working hard' and 'the study hard'. I can'thttp://feedproxy.google.com/~r/AutismsEdges/~3/pz69-osP48w/finally-aging-out.htmlnoreply@blogger.com (MothersVox)7<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/pz69-osP48w" height="1" width="1"/>http://autismsedges.blogspot.com/2009/03/finally-aging-out.htmltag:blogger.com,1999:blog-19421951.post-5571466279108483128Sat, 14 Mar 2009 13:21:00 +00002009-05-13T23:39:57.203-04:00When I first wandered into the autism blogosphere one autumn day some three years ago, I was struggling mightily. Sweet M's school had told me that I should look for another school: that she was not learning to read and might not learn to read more than the most rudimentary of texts, that her meltdowns were too disruptive, and that we should be looking for another school because she needed more http://feedproxy.google.com/~r/AutismsEdges/~3/Y6x3L6skJ2c/aging-out.htmlnoreply@blogger.com (MothersVox)8<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/Y6x3L6skJ2c" height="1" width="1"/>http://autismsedges.blogspot.com/2009/03/aging-out.htmltag:blogger.com,1999:blog-19421951.post-4512963656095494423Thu, 22 Jan 2009 01:16:00 +00002009-01-21T21:18:21.708-05:00Being that it's January -- new year's resolutions and all that -- I had decided to do what our culture urges us to do at this time of year: make some health improving resolution. And I did. I got a physical from a new doctor since my dear doctor died. I started a walking program. Shifted some things in my usual eating. You know -- all the usual health and fitness resolutions.But instead of http://feedproxy.google.com/~r/AutismsEdges/~3/-nHaxGjWsOM/hidden-costs-of-mismanaged-care.htmlnoreply@blogger.com (MothersVox)5<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/-nHaxGjWsOM" height="1" width="1"/>http://autismsedges.blogspot.com/2009/01/hidden-costs-of-mismanaged-care.htmltag:blogger.com,1999:blog-19421951.post-6802976732527666154Wed, 17 Dec 2008 22:53:00 +00002009-01-21T21:31:31.075-05:00I am tired of reading about autistic and other neurologically atypical kids being abused and tortured. How do we get this to stop?http://www.cnn.com/2008/US/12/17/seclusion.rooms/index.html?eref=rss_topstoriesUPDATE -- January 13th, 2009The National Disability Rights Network has released a report on the use of restraints and seclusion and has called upon the 111th Congress to ban these practiceshttp://feedproxy.google.com/~r/AutismsEdges/~3/PVGCmsezMuo/i-am-tired-of-reading-about-autistic.htmlnoreply@blogger.com (MothersVox)3<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/PVGCmsezMuo" height="1" width="1"/>http://autismsedges.blogspot.com/2008/12/i-am-tired-of-reading-about-autistic.htmltag:blogger.com,1999:blog-19421951.post-3619504432803395997Thu, 04 Dec 2008 01:47:00 +00002008-12-03T21:08:44.606-05:00Just to clarify, the memorial service for Dr. Steven Tamarin, M.D. will be held on:Saturday, December 6, 2-4 p.m.New York Academy of Medicine103rd Street and Fifth Avenue, 2nd floor (enter on 103rd St.)There is a warm remembrance of Steve at the website of New York State Academy of Family Physicians, and in the comments section on yesterday's post.Thanks to the readers who shared this informationhttp://feedproxy.google.com/~r/AutismsEdges/~3/gpte7ay_hnU/steven-tamarin-mdmemorial-service.htmlnoreply@blogger.com (MothersVox)8<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/gpte7ay_hnU" height="1" width="1"/>http://autismsedges.blogspot.com/2008/12/steven-tamarin-mdmemorial-service.htmltag:blogger.com,1999:blog-19421951.post-6419461713442892622Tue, 02 Dec 2008 12:16:00 +00002009-01-24T00:38:14.692-05:00Alas, in spite of all medical advances the mortality rate hovers at about 100%. If you don’t die of heart disease you die of something else . . . — Steven B. Tamarin, M.D. January 29, 2008 2:05 am Link It seems as though I have entered into the autumn of eulogies. Another great one has passed away, and this time another one who has cared for me, for my family, http://feedproxy.google.com/~r/AutismsEdges/~3/Vbg52_DMXEY/autumn-of-eulogies-steven-tamarin-md.htmlnoreply@blogger.com (MothersVox)89<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/Vbg52_DMXEY" height="1" width="1"/>http://autismsedges.blogspot.com/2008/12/autumn-of-eulogies-steven-tamarin-md.htmltag:blogger.com,1999:blog-19421951.post-3108378970543619396Wed, 26 Nov 2008 13:30:00 +00002008-11-26T09:52:38.576-05:00Sweet M's letter to Santa, October 28, 2008In late October, after the Toys R Us catalog arrived with the Sunday newspaper, Sweet M sat down to write her list for Santa. She was trying to avoid thinking about Halloween, a holiday she loathes, by looking forward to Christmas. And unlike any of the other 11-year-olds at her school, she still believes in Santa.Her Christmas list was long — very, veryhttp://feedproxy.google.com/~r/AutismsEdges/~3/azdZ2tL1llI/ages-3-and-up-or-way-too-many-toys.htmlnoreply@blogger.com (MothersVox)4<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/azdZ2tL1llI" height="1" width="1"/>http://autismsedges.blogspot.com/2008/11/ages-3-and-up-or-way-too-many-toys.htmltag:blogger.com,1999:blog-19421951.post-8633332221160370215Tue, 18 Nov 2008 13:17:00 +00002008-12-07T11:20:22.965-05:00Lately when Sweet M has a new expression. When she's not feeling well, she says, "I'm not feeling like myself."When the horse she likes best at her hippotherapy program tried to buck her off, as he'd done with several kids, she was completely calm as she reprimanded him with a sharp reproach, saying "Tank, don't do THAT. You scared me." Later she told me, nonchalantly, that it was okay, that "http://feedproxy.google.com/~r/AutismsEdges/~3/iVb4GGHHn_s/post-paxil-or-on-feeling-like-oneself.htmlnoreply@blogger.com (MothersVox)6<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/iVb4GGHHn_s" height="1" width="1"/>http://autismsedges.blogspot.com/2008/11/post-paxil-or-on-feeling-like-oneself.htmltag:blogger.com,1999:blog-19421951.post-9122290655362441482Mon, 17 Nov 2008 01:23:00 +00002008-11-18T11:14:58.797-05:00Earlier this week my aunt passed away from complications related to lupus. She lived a long life, nearly eighty years, had five children, four grandchildren, and dozens of nieces and nephews, friends and in-laws who treasured her in life and now mourn her loss. We called her Aunt Sissy because she was the only girl in a brood of six siblings, so she was Sis to all her brothers, and Aunt Sis http://feedproxy.google.com/~r/AutismsEdges/~3/UbPJyU7xBYI/white-gloves-and-party-manners-or-elegy.htmlnoreply@blogger.com (MothersVox)4<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/UbPJyU7xBYI" height="1" width="1"/>http://autismsedges.blogspot.com/2008/11/white-gloves-and-party-manners-or-elegy.htmltag:blogger.com,1999:blog-19421951.post-1129291461669163006Sat, 11 Oct 2008 22:34:00 +00002008-10-11T19:03:08.861-04:00This afternoon Sweet M made this drawing . . . Usually her drawings are of houses, satellites, female figures, cupcakes, treehouses, and butterflies, so I was a bit surprised by this frightening image.When I asked her what it was, she said, "It's a bear."When I said it looked looked cool but scary, she said, "Don't worry — it's just a bear mask."I wish that adults trading stocks in our mutual http://feedproxy.google.com/~r/AutismsEdges/~3/P_appjZ1kZg/bears-everywhere.htmlnoreply@blogger.com (MothersVox)1<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/P_appjZ1kZg" height="1" width="1"/>http://autismsedges.blogspot.com/2008/10/bears-everywhere.htmltag:blogger.com,1999:blog-19421951.post-2882154137656088724Sat, 23 Aug 2008 12:24:00 +00002008-08-23T09:06:11.860-04:00 After a series of unfortunate experiences, "camp" had become a four-letter-word for Sweet M.There was that well-intentioned but understaffed day camp in Westchester County. And then there were the dangerously untrained counselors in an inclusive program at a local youth organization. And finally the camp we dropped out of before we even sent Sweet M when we learned that the camp director had http://feedproxy.google.com/~r/AutismsEdges/~3/Chfu7_InM2U/camp-no-longer-four-letter-word.htmlnoreply@blogger.com (MothersVox)5<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/Chfu7_InM2U" height="1" width="1"/>http://autismsedges.blogspot.com/2008/08/camp-no-longer-four-letter-word.htmltag:blogger.com,1999:blog-19421951.post-155218745546884123Sun, 17 Aug 2008 02:26:00 +00002008-08-18T10:37:50.880-04:00neurolepticspsychotropic medicationsobesityPaxilautismhippotherapySweet M is very, very round, and I haven't known what to do.We are told that there is an epidemic of autism. The other epidemic that we hear a a lot about is rising childhood obesity. If one believes that fatness is a disease, and not just another difference, then Sweet M is among the obese.Of course there are a lot of smart people out there who think fat is just fat, not a disease. But most http://feedproxy.google.com/~r/AutismsEdges/~3/PgH1dc6VIU4/other-epidemic.htmlnoreply@blogger.com (MothersVox)8<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/PgH1dc6VIU4" height="1" width="1"/>http://autismsedges.blogspot.com/2008/08/other-epidemic.htmltag:blogger.com,1999:blog-19421951.post-2334669876713910963Mon, 26 May 2008 19:01:00 +00002008-05-26T16:11:34.589-04:00Last week I was in California to visit my father in his new home, an assisted living residence for people with Alzheimer's and other sorts of memory disorders. I was apprehensive about his move to this facility — a place that I hadn't seen and had heard only a little about, so I just had to see it.My mother had been caring for him for seven years — since he first went missing after dropping http://feedproxy.google.com/~r/AutismsEdges/~3/YWvyga6gkBo/from-autism-to-alzheimers.htmlnoreply@blogger.com (MothersVox)4<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/YWvyga6gkBo" height="1" width="1"/>http://autismsedges.blogspot.com/2008/05/from-autism-to-alzheimers.htmltag:blogger.com,1999:blog-19421951.post-9000189358295626224Sun, 27 Apr 2008 13:08:00 +00002008-04-27T09:41:54.636-04:00pre-teenfriendshipentertainmentautism A year or two ago Sweet M saw an enticing television commercial for the My Little Pony stage show and begged to go. Unfortunately it was only on tour in Tulsa, Dallas, and other parts west. But we put her name on an email notification list for when the show might come to New York and about two months ago we learned it was coming to Madison Square Garden — a good bit closer to us than http://feedproxy.google.com/~r/AutismsEdges/~3/E5HC4P4uxw0/my-little-ponies.htmlnoreply@blogger.com (MothersVox)6<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/E5HC4P4uxw0" height="1" width="1"/>http://autismsedges.blogspot.com/2008/04/my-little-ponies.htmltag:blogger.com,1999:blog-19421951.post-3632279512984414333Sun, 20 Apr 2008 14:46:00 +00002008-04-20T11:20:34.952-04:00Last week, on the evening of April 10th, Sweet M went on her first overnight. Yes, away from home. Without us. To another state. With her class. On an overnight field trip.Yes. On her own. Well, sort of on her own. With her aide. Without us.She was terribly excited about the field trip. When we first talked about it she said, "So I'll stay in a hotel?" "Yes," I said. "And there will behttp://feedproxy.google.com/~r/AutismsEdges/~3/BfsZfD7IP-w/overnight.htmlnoreply@blogger.com (MothersVox)7<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/BfsZfD7IP-w" height="1" width="1"/>http://autismsedges.blogspot.com/2008/04/overnight.htmltag:blogger.com,1999:blog-19421951.post-8142006690849717623Tue, 01 Apr 2008 23:30:00 +00002008-04-01T20:10:17.137-04:00Overall things over here at Autism's Edges have been going awfully well lately. So well that we are slipping. We've been letting our autism parenting slip . . .So last night when I was stricken with a stunning migraine, I reverted to a parody of American parenting.Sweet M and Fathersvox were quarreling about her bath time. I was curled up in a fetal position on the bed, hoping that the http://feedproxy.google.com/~r/AutismsEdges/~3/kvdGvZ2hamc/bad-parenting-as-great-progress.htmlnoreply@blogger.com (MothersVox)14<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/kvdGvZ2hamc" height="1" width="1"/>http://autismsedges.blogspot.com/2008/04/bad-parenting-as-great-progress.htmltag:blogger.com,1999:blog-19421951.post-1582342457867660706Thu, 20 Mar 2008 03:46:00 +00002008-03-20T00:54:16.685-04:00Sweet M has immensely thick brown hair that she shampoos each evening when she takes her bath. As part of our evening ritual, she'll holler, "M____, come here, I wanna get out of the bath." And then I'll holler back, "Gimme a second." Or "I'm coming in a minute." Or sometimes, "Okay, okay, I'm on my way."And then I'll go into the bathroom and I'll take a paper towel and fold it over once so http://feedproxy.google.com/~r/AutismsEdges/~3/29BQ_6QhfO8/water-everywhere.htmlnoreply@blogger.com (MothersVox)9<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/29BQ_6QhfO8" height="1" width="1"/>http://autismsedges.blogspot.com/2008/03/water-everywhere.htmltag:blogger.com,1999:blog-19421951.post-7921219849693567252Sun, 16 Dec 2007 17:05:00 +00002007-12-16T12:33:52.451-05:00Autism is many things to many people . . . For the NYU Child Study Center, it's one of many psychiatric disorders that take our children hostage. For Jenny McCarthy and Holly Robinson Peete and countless others it's a form of mercury poisoning. For disability activists, it's a neuro-biological difference to be protected and celebrated.But never would I have imagined that autism was a fashion http://feedproxy.google.com/~r/AutismsEdges/~3/WKTU6ZjzlA0/autism-fashion-statement.htmlnoreply@blogger.com (MothersVox)26<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/WKTU6ZjzlA0" height="1" width="1"/>http://autismsedges.blogspot.com/2007/12/autism-fashion-statement.htmltag:blogger.com,1999:blog-19421951.post-2784589448434630544Fri, 14 Dec 2007 01:24:00 +00002007-12-16T10:39:16.272-05:00parent advocatesmedia analysisautismAsperger's SyndromeMuch has been written about NYU Child Study Center's "Ransom Notes" child mental health/mental illness advertising campaign. Kristina at AutismVox is keeping a running list of posts about the campaign, so I won't list them all here. The New York Times ran a story about the campaign this morning. But for my part, I hadn't posted about the ad campaign, or about anything else for that matter.I http://feedproxy.google.com/~r/AutismsEdges/~3/qdFUVwMGLoQ/hostage-negotiations.htmlnoreply@blogger.com (MothersVox)8<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/qdFUVwMGLoQ" height="1" width="1"/>http://autismsedges.blogspot.com/2007/12/hostage-negotiations.htmltag:blogger.com,1999:blog-19421951.post-858150789821949449Tue, 11 Dec 2007 15:09:00 +00002007-12-11T12:37:10.506-05:00Since September I've been involved in an unintended experiment — life without blogging.Circumstances — new job on top of old job, complicated commute related to the aforementioned new job, great new situation at Sweet M's school and the accompanying narrative whiplash — conspired to pull me away from blogging about our lives with Sweet M in the city and about autism issues more broadly.Often in http://feedproxy.google.com/~r/AutismsEdges/~3/Pm7p5m0aObM/accidental-experiment-life-without.htmlnoreply@blogger.com (MothersVox)12<img src="http://feeds.feedburner.com/~r/AutismsEdges/~4/Pm7p5m0aObM" height="1" width="1"/>http://autismsedges.blogspot.com/2007/12/accidental-experiment-life-without.html