I Speak of Dreams

Complaints to the school: how to make them effectively

Wrightslaw has a section on complaints.  Pete Wright explains:

In our training programs, I explain that the facts and law do not control outcome. The decision-maker controls the outcome.

You must make the decision-maker want to rule in your favor. When parents write a compelling "Letter to the Stranger," they can often accomplish this objective.

My epal Tsu Dho Nimh has an excellent example, first quoting from Pete Wright:

"Know what you want if the complaint is found in your favor. If you don't ask for anything when you file your complaint, you will not get anything when it is resolved."

And then going on to make a compelling example:

And be very specific about this. If you can't define it as a desirable or undesirable behavior/activity/risk that can be observed and measured and tracked, it's not going to happen.

EXAMPLE: Saying "the school is not respecting my diabetic child's schedule and he's at risk, you have to do something" means nothing.

Define the problem behavior and the situation: "Billy is an insulin-dependent diabetic. Please see the attached meal and medication schedule from his pediatrician. He injects with insulin at 8:30AM after his breakfast. To avoid the danger of insulin shock, he must eat a snack with 200-300 calories between 10:30 and 11:30AM. There is another snack between 3 and 3:30.

His teachers have been notified of his needs and given a copy of his meal and insulin schedule.

His history teacher, Ms. Dewnothing, confiscates his snack and insists that he must wait until regular lunch at 12:30 because, as the attached e-mail from her says, "It's the schedule" and "It will distract the class if he eats a snack".

His science teacher allows him to eat the snack.

Explain the consequences: As a result of Ms Dewnothing's refusal to allow Billy to have the snack the pediatrician says is necessary, Billy's blood sugar is dropping during the hour before lunch. He is fidgety and unable to concentrate, and he is at risk of collapsing with dangerously low levels of blood sugar.

Explain the results you want: I expect that my child's medical needs will be met every day he is in school, with the snack eaten during the correct time. If Ms. Dewnothing does not accept the need for a diabetic child to have regular food intake, please send her to (insert class here).

Conduct yourselves accordingly.

Observant Jews and vaccination

There have been outbreaks of vaccine-preventable diseases among ultra-orthodox Jewish communities in Israel, the UK, and the US (see Haaretz, Crown Heights Newsletter, Joshua Zelinksi and the Bensonhurst Bean)

This has lead some naive US anti-vaccination commentators to have the belief that it is against Jewish law or custom to recieve vaccines.   

Actually, the opposite is the case.  

Steve Summers on Autistic Conversational Differences

I am so grateful to the autistic adults who are sharing the reality of their lives  with the public.  One who has been especially generous is Steve Summers.  What follows is a guest post from Steve chez Autismum.  I've added my commentary.  (The indented text is by Steve Summers, the full-width text is my commentary.)

Autism and Conversational Differences – Eye Contact, Personal Space & Processing Speed

Autism can be a social disability for me. Here are a few issues that I have recently noticed during some social interactions with others in small group conversations.

1. Eye contact — I can make brief eye contact, but it takes a conscious effort to do so. I have to make myself look at other people’s eyes, it doesn’t come naturally. I prefer to look at mouths. My eyes dart about and don’t sustain direct eye contact. If my wife is involved in the conversation, I prefer to look at her face instead of other people’s faces. I will glance at the other people and then return to her face.

I can frequently see when other people start getting uncomfortable with my gaze flitting about. Women, in particular, seem to adjust the necklines of their tops because they notice my gaze is below the gaze line to their eyes. I guess that they assume that if a male is looking below their eyes, that we are looking at the chest area. They don’t realize that I am looking at their mouth and all around the room as well. My darting eyes seem to be unsettling for many people.

I think Steve for the clarity of his statement.  I have an unconscious habit of maintaining fairly strong eye contact when I am in a conversation, especially if the conversation has emotional content.  Because I can see Steve in my mind's eye, I will (I hope) be better in conversations about being mindful of how I look at the person I'm speaking to.  
The "darting eyes" feature is another one to be mindful of -- I tend to assume that a person who does that is nervous, or anxious, or wants to leave my company.  Of course, I only notice that because I am looking into eyes..hmmn.  Changing my conversational behavior might make conversations more comfortable for both parties. 

2. Personal space — I notice that other people tend to stand too close to me. I feel comfortable with my wife at that distance, but it makes me uncomfortable when other people stand very close to me. I have been in several conversations involving my wife and one other person and I find myself wanting to move away from the other person because they are often nearly shoulder to shoulder with me.

I am usually pretty good about personal space, as I don't like to be too close to people I don't know well.  But I do edge closer in noisy spaces, given that as I've gotten older, it is harder to pick out spoken language from the background hum.

3. Processing speed — I often take a few extra seconds to process all of the information that is coming in from another person. I often have to consciously work out what they are saying and what the tone and inflection in their voice means in context with their words. I don’t always pick up on their body language either.

Most non-autistic people seem to do this without thinking about it. For them it is automatic, and in the background of their minds. For me, it takes some of my focus and attention. These issues often cause me to take a little (or a lot) of extra time to formulate a reply.

Reading Steve's words reminded me of the work of audiologist Ray Hull, Ph.D., who has studied auditory comprehension in children and typically-developing adults. Hull wrote,

"The problem is that adults are speaking at a rate that a child's central nervous system, or their brain, cannot comprehend. Adults, for example, generally speak at a rate of about 160 to 170 words per minute. Whereas, the child's central nervous system can process speech at a rate of about 124 words per minute."

I am not saying that Steve's nervous system is like a child's. I am saying that many people (myself included) unconsciously talk more rapidly than our conversational partners can listen. It is a reminder to slow down my speech and to wait, attentively, while my conversational partner thinks through what I have said, and formulates a response. Rapid cross-talk isn't a sign of intelligence or superiority, it is a sign of ill manners.

In group conversations, this delay often means that the conversation has already moved on and I am too late to add my input to the the conversation. If I speak out in that case, it is out of step with the others and seems like I am moving the conversation backwards. It becomes a source of frustration and/or awkwardness. Other times, people just don’t understand the delay in my reply.

Some people don’t know what to make of these slightly out of synchronization communication issues that I have. As a result some will interrupt me or simply walk away before I have made my point. That is very distressing and feels disrespectful to me. I don’t deserve to be ignored and made to feel insignificant, or invisible to others. I want to be included and treated as an equal human being.

Please take these autistic communication issues into consideration and accept that I do want to talk. I enjoy conversing and interacting with friends and acquaintances. With just a little understanding and acceptance, I can be included and not made to feel bad about my conversational difficulties.

I for one resolve to do better in all my conversations with all people.

Steve Summers' guest posts at Autismum:

I was diagnosed with Asperger Syndrome (part of the Autism Spectrum) as an adult. I was diagnosed following my 11-year-old son’s diagnosis with Aspergers. I am happy to have my diagnosis. It was like a light being turned on that illuminated my entire life in a new way. Now I understand why I never really ‘fit in.’ It is like having a huge weight lifted off of my shoulders to have my diagnosis. – Steve Summers

• 10 Tips on How to Communicate with Autistic People
  
• Don't Sweat the Small Stuff
• I am Autistic and I Am Tired

Steve Summers on Facebook https://www.facebook.com/Steve.R.Summers?fref=ts

Steve Summers on Twitter https://twitter.com/AlohaWaimea

Steve Summers on Google+ https://plus.google.com/115911862705754942916/posts

Tomatoes for beginners: Tomato water

You know how ski resorts grade their runs, beginner (green circle), intermediate (blue square), advanced (black diamond), and expert (double black diamond)?  

To me, tomatoes, especially cherry tomatoes, are a double-black diamond foodstuff. Think about it.  You put a little smooth round thing, almost tasteless, in your mouth and bite down.  KAPOW!  An explosion of at least four textures and tastes: the smooth tough skin, the slightly-crunchy pulp, the jelly surrounding the seeds, and then the seeds themselves.

What if you want to try out how a tomato tastes without all the fireworks?  There's something for that: tomato water.

Jeannik Méquet Littlefield, 1920-2013

Jun. 21, 1920 - May 24, 2013  Resident of San Mateo, CA

Jeannik Méquet Littlefield, prominent patron of the arts, has died in San Mateo, CA, at the age of 92.

Born in Paris and raised in Geneva, Switzerland, Mrs. Littlefield came to the United States as a foreign exchange student at Barnard College in 1939. She continued her education stateside, eventually earning a bachelor's degree in English from Wells College in Aurora, NY, and a master's degree in English from Mills College in Oakland, CA. Already fluent in French, German, Russian and English, she began studying towards a Ph.D. in Linguistics at the University of California in Berkeley. In 1943 she joined the war effort as a translator, and moved to Washington, D.C., to work for the French Air Mission. There she met Edmund Wattis Littlefield. The two married the following year.

After the war, the Littlefields moved to Burlingame, where Mr. Littlefield joined a family firm, Utah Construction Company, as Financial Vice President, soon becoming CEO of what became one of the largest mining and construction companies in the country. In 1976, the company (now Utah International, Inc.) merged with the General Electric Company in what was the largest merger in U.S. corporate history at the time. Mr. Littlefield stayed on at G.E. as a board member and served many other corporate boards over the course of his career.

As her husband's work increasingly involved extended stays abroad, Mrs. Littlefield joined him on business trips to South America, Australia and Japan, but she also became involved in her own community. She served as a board member of the San Francisco Opera from 1977 to 1992, and was also involved with the Symphony and the Ballet. Her support of the San Francisco Ballet's New Production Fund was instrumental in the 2004 world premiere of Mark Morris' Sylvia, the 2009 world premiere of Helgi Tomasson's Swan Lake, and the recent May 2013 US premiere of Christopher Wheeldon's Cinderella. The Littlefield Foundation continues to be an ongoing supporter of a variety of arts and education.

Following her husband's death in 2001, Mrs. Littlefield moved to San Mateo, where she renewed her connection with Bay Area organizations, especially the San Francisco Opera, where she has sponsored productions since 2002. Her 2006 pledge of $35 million to the Opera was the largest donation from an individual to an American opera company at that time. Mrs. Littlefield was an ongoing supporter of the Fine Arts Museums of San Francisco, which includes both the Legion of Honor and the de Young Museum. In addition to sponsoring the show Women Impressionists at the Legion of Honor, she was the Grand Patron of the recent exhibits at the de Young Museum of Impressionist and post-Impressionist masterpieces from the Musée d'Orsay.

In addition to the arts, Mrs. Littlefield enjoyed golf, bridge, and skiing. She was a popular member of the Vintage Club and a frequent visitor to The Living Desert, a wildlife preserve in Indian Wells, CA where she had a winter home. She found a spiritual home late in life at St. Dominic's Catholic Church in San Francisco. She took great joy from in her support of education, including the French-American International School, Wells College and Mills College.

Mrs. Littlefield was the eldest daughter of Gustave Méquet, a translator for the League of Nations who spent much of World War I in a German prison camp, and his wife Jeanne, a college graduate with an abiding interest in music, chemistry and physics. Gustave and Jeanne had two other daughters, Jacqueline and Renée, both of whom are now deceased.

Mrs. Littlefield is survived by two children: a son, Edmund Wattis Littlefield, Jr. and his wife Laura of Arlington, Washington; and a daughter, Denise Sobel of New York City; eight grandchildren; and six great-grandchildren. Mrs. Littlefield's second son, Jacques Méquet Littlefield, passed away in 2009.

A memorial service will be held on Wednesday, July 31st, at 11 am at St. Dominic's Catholic Church, 2390 Bush Street, San Francisco. In lieu of flowers, the family requests gifts to the San Francisco Opera, San Francisco Food Bank, or a charity of your choice . 

(Click to enlarge images.  Opera image source http://bunnym.blog.sohu.com/99235080.html  Wedding image source http://library.weber.edu/asc/ucc/founders/images/edjeannik.jpg  Family image source http://www.newyorksocialdiary.com/i/partypictures/10_14_08/320-Denise-Sobel,-Jeannik-L.jpg)

Memorial Day 2013: Robert Service's Missis Moriarty's Boy, 1916

Image source http://war-poets.blogspot.com/2010/09/robert-service-only-boche.html

From Ballads of a Red Cross Man, dedicated to his brother Albert, killed while serving in the Canadian Army.

Missis Moriarty's Boy


Missis Moriarty called last week, and says she to me, says she:
"Sure the heart of me's broken entirely now -- it's the fortunate woman you are;
You've still got your Dinnis to cheer up your home, but me Patsy boy where is he?
Lyin' alone, cold as a stone, kilt in the weariful wahr.
Oh, I'm seein' him now as I looked on him last, wid his hair all curly and bright,
And the wonderful, tenderful heart he had, and his eyes as he wint away,
Shinin' and lookin' down on me from the pride of his proper height:
Sure I'll remember me boy like that if I live to me dyin' day."


And just as she spoke them very same words me Dinnis came in at the door,
Came in from McGonigle's ould shebeen, came in from drinkin' his pay;
And Missis Moriarty looked at him, and she didn't say anny more,
But she wrapped her head in her ould black shawl, and she quietly wint away.
And what was I thinkin', I ask ye now, as I put me Dinnis to bed,
Wid him ravin' and cursin' one half of the night, as cold by his side I sat;
Was I thinkin' the poor ould woman she was wid her Patsy slaughtered and dead?
Was I weepin' for Missis Moriarty? I'm not so sure about that.


Missis Moriarty goes about wid a shinin' look on her face;
Wid her grey hair under her ould black shawl, and the eyes of her mother-mild;
Some say she's a little bit off her head; but annyway it's the case,
Her timper's so swate that you nivver would tell she'd be losin' her only child.
And I think, as I wait up ivery night for me Dinnis to come home blind,
And I'm hearin' his stumblin' foot on the stair along about half-past three:
Sure there's many a way of breakin' a heart, and I haven't made up me mind --
Would I be Missis Moriarty, or Missis Moriarty me?

image source: http://marylinemartin.blogspot.com/2011/01/sourire-quand-meme.html

I blinked and she was gone

Over the weekend, I hosted a party honoring my darling daughter's graduation from university.  It was a lovely event, with family and friends from near and far coming together to celebrate.  Over the years, Jumper Girl has been blessed with a number of caregivers, with whom we are happily still in touch.  Many of them were at the party.

Of course we were telling stories.  One story was the time that Jumper Girl, age about 2, escaped from our secure back yard, when my back was turned for just a minute.  At that time,  we were putting jingle bells on her shoes, because she had developed the vexing habit of running away and hiding, especially in the house.   At the time of this story, we were outside, and I think I had bent over to pull a weed or something.  When I looked up, she was nowhere in sight, and the gate, which I swore she couldn't open, stood ajar. Worse yet, her be-jingled shoes, which I believed she was incapable of removing on her own, were lying in the middle of the lawn.

I think every parent, if they were honest with themselves, has had such moments with their children.  You know, the ones where the child demonstrates some new skill in such a way that places the child at risk, if not outright danger.  

This last week has been a particularly haunting one in that respect for the autism community.  On May 12, 2012, nine-year-old Mikaela Lynch managed to get out of her secure back yard and vanished.  She was found dead in a nearby creek on May 15.  On May 19,  eight-year-old Owen Black somehow slipped out the beach condo where his family was staying and was later found drowned in Perdido Key.   Age of Autism is reporting that a third child, Drew Howell, also slipped out of his parent's house and was found within minutes.  Sadly, Drew had drowned.

Mikaela and Owen were autistic, non-speaking, and by all reports,  had the obliviousness to danger that some autistic children exhibit.   The thing about autism though, is that many autistics exhibit developmental delay.  Pay attention: delay.  Skills do develop, only on a different timetable than expected.  Parents and caregivers can be taken by surprise by a sudden jump in skills.

A friend of mine who has a child, Frank*,  much like Mikaela and Owen,  told me a story a while ago.  Their backyard was they thought doubly secure, with locking features that Frank couldn't reach, and that were beyond (they thought) his fine motor skills.  One fine day, while his mother wasn't looking, he reached over and handily undid the latch.  What had happened?  Oh, all the work his PT and OT had been doing on gross and fine motor skills paid off.  He had learned to balance on tiptoe, and had mastered the snap lock. Fortunately, his mother heard the gate open and had caught up with Frank before he got into any danger.  

While the search for Mikaela was going on, many of my  friends who are parents of autistic children -- some like Mikaela and Owen, others who have more of a sense of danger and less likelyhood to wander off -- wrote again and again about their own close calls with a child escaping, despite extreme care and hypervigilance.

While Mikaela was missing, there were some who said said vile things about the Lynch family.

One of the autism parent bloggers decided that must not stand, and organized a blog drive for today, "An Outpouring of Love for the Mikaela Lynch Family".  You can peruse a list of posts at http://www.blenza.com/linkies/links.php?owner=sunday75&postid=19May2013.   

My heart aches for each family -- the Lynches, the Blacks, and the Howells. Each of those children had teachers and helpers and therapists who also are suffering.  To lose a child....  The pain is unspeakable.  To those who loved Mikaela, Owen, and Drew, I am so, so sorry for your losses.

There is a website honoring Mikaela's memory, http://mlvillage.org/

We are a community of Mikaela’s family and close friends that are dedicated to the life and love of Mikaela Lynch. This wonderful girl has touched so many lives around the globe. It is our intent to continue to spread the love that Mikaela shared liberally. We hope to have your help in our mission. 

The local paper, the Lake County News, reported that

The site includes a donation link. One of the child’s teachers, Alyssa Winn, reported that Mikaela’s family currently is choosing a foundation – likely one benefiting children with autism – in order to make a donation in her name.

Oh, the end of the Jumper Girl story?  We were lucky. I went around the west side of the house, but she had gone around the east side. Just as she got to the driveway, one of the caregivers arrived and apprehended her.  We upgraded the escape prevention that day, and now it is one of those family stories....that families tell each other for fun, but also as a reminder.  It could have been my child.
-----

*pseudonym 
Image source: http://commons.wikimedia.org/wiki/File:Gate_ajar.jpg 

When dyslexia goes to college....

When a well-remediated, hardworking dyslexic student matriculates at a university with excellent disability support, and the dyslexic student finds a field of study that ignites that student's passions, this is what happens:

Oh, those honors?

 

 

My Jumper Girl!  I am so proud of her, for so many reasons.

The Recipe Aisle: In which I waste two perfectly good portabella mushrooms on a bad dressin

I really love portabella mushrooms (mature, farmed Agaricus bisporus, as in the image, image source ).  I especially love them grilled.   And the best grilling marinade is a raspberry vinegar.

I thought I had at least a cup of raspberry vinegar in my pantry when I went to the market this afternoon.  I was wrong.    

 

 

So I thought I could substitute this Wishbone commercial product, 

"Superfruit Berry Vinaigrette"

Yuck.  No.  Totally wrong.

It smells and tastes like tutti-fruiti bubblegum, and somehow, the grilling just intensified the artificiality of the flavor.

This would be equally inedible fresh, on salad.

Inedible.  I am sorry, mushrooms, but it's the compost heap for you.

 

 

 

 

 

May 15: Sensory Processing in Autism and Other Neurodevelopmental Disorders: From Scanner to Bedside -- 2012-2013 Autism Lecture Series, San Francisco Peninsula and South Bay

2012-2013 Autism Lecture Series, San Francisco Peninsula and South Bay

The 2012-2013 Lecture Series is presented by Wings Learning Center and hosted by Notre Dame De Namur University Education & Leadership Department

To register:

http://wingslearningcenter.org/lectureseriesregister2012.html

• May 15, 2013 Sensory Processing in Autism & Other Neurodevelopmental Disorders: From Scanner to Bedside Dr. Elysa Marco, M.D., Director of Research UCSF, Autism & Neurodevelopmental Programs, Assistant Professor of Neurology, Psychiatry & Pediatrics

You may register for one or more lectures. All lectures are $25 each to attend and occur from 11:00 am to 1:00 pm at Wings Learning Center, 411 Middlefield Road, Redwood City, CA 94063

Contact: Karen Kaplan: email: kaplan@wingslearningcenter.org phone: (650) 365-3250

Registration for lectures: http://wingslearningcenter.org/lectureseriesregister2012.html