Waiting

My entire house is in disarray. Not that it is in order most of the time. With a 5 1/2 year old autistic kid, it would be hard to have anything stay in one place for too long.
The problem is.. I have begun nesting. At least I think it's nesting. It started earlier this pregnancy. I have been baking and sewing and generally not leaving the house, and I want everything put away and neat and nice... and well, that doesn't happen in my house.

While shuffling our stuff about the house we have unearthed an entire box of cassette tapes. Most of them are mine circa 1990, when my best girlfriends made me mixed tapes to take off to college. Most other people stayed pretty close to home for school. I headed north from the sandy beaches of Surf City and went to Berkeley, and honestly I have never been back "home" for longer than 3 weeks in a row. ANywhooooo my girlfriends made me all of these great tapes with songs like Total Eclipse of the Heart Great tapes with songs that are on the verge of coming back into style just like those nasty 'pumps' with the criss-cross front that were so unattractive the first time.

The Real Reason I can't have any downtime

I am supposed to be cleaning out our office in anticipation of our daughter's birth..which is now less than 90 days away. Instead I got on the computer to send an email to a girlfriend of mine who has moved all the way to Texas.

Instead of just writing the email and quickly getting back to work I cruise around the internet, somehow getting to The Ladders website which is a job search website catering to those who either want to make over $100k, or normally do and who, as they are job hunting, don't want to sift through 600 lower positions for which they are over-qualified. I think it's a great idea. Anywhoo that led me to the blog of the founder of that Company Marc Cenedella. And after reading more than one entry of his blog I randomly found an entry that discusses the difference between American emoticons and those of the Japanese. I don't even use emoticons very often.

SO now of course I am documenting my unimportant mini-drama here on my own blog.. for what purpose?
I really, really don't want to clean out this room right now.

(-_^) wink

Desiderata

I have always loved this bit of prose, and wanted to find out more about its author etc. Once I started looking it turns out that I have a framed copy of the prose that was distributed with the attribution "Old St. Paul's Church, Baltimore A.C. 1692."
The words were actually written by Max Ehrmann, a poet and lawyer from Terre Haute, Indiana, who lived from 1872 to 1945.
with thanks to Mr. Ehrmann

Go placidly amid the noise and the haste,
and remember what peace there may be in silence.

As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even to the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons;
they are vexatious to the spirit.

If you compare yourself with others,
you may become vain or bitter,
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.
Be yourself. Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.


With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful. Strive to be happy.

I just found a new rule

It's the rule of prom dates: He was ugly until he asked you to prom, and now he doesn't look so bad.

It is taken totally out of context from this article from the Boston Globe

hula baby

currently the squidge is 1 1/2 inches tall and can dance the hula ( I saw it on tv) It appears to have 2 arms, 2 legs, ears, nose, eyes mouth etc...correct number of everything in all of the right places.
I asked if they could see any autism. The nurse didn't laugh. Apparently I am losing my touch.

Not-so-Mini-Van

"There is nothing mini about that van" is how my friend put it yesterday. Arghhhh I went from a LandCruiser to a Minivan..that is like losing a leg.

Sharing the Story

Work & Family: Employers aiding parents of disabled children

Thursday, October 13, 2005

By Sue Shellenbarger, The Wall Street Journal

For years, David Bruesehoff hesitated to tell anyone at work about his daughter, Karissa, who has autism and Down syndrome.

At his company and many others, "it's the 'culture of the smart,' " the Dallas father says. "It can be hard when another parent is talking about his child getting into prep school, and your child's big accomplishment is getting on the bus to go to school."

A code of silence has long kept parents of children with disabilities, from autism and Down syndrome to cerebral palsy and depression, from talking about their kids at work. Now, driven by growth in their numbers and in the cost of raising special-needs children, some of these parents are starting to "come out" at work. And a handful of employers are stepping up to help, with support groups, informational meetings and insurance benefits.

The incidence of U.S. children and teenagers with a disabling condition has tripled to 7 percent from 2 percent in 1960, based on data published in 2000 in the Archives of Pediatric and Adolescent Medicine, reflecting increased survival rates and a rise in the diagnosis of conditions such as autism. Today, an estimated one in 12 U.S. workers has a child with a disability or special need, says MassGeneral Hospital for Children, Boston, which is conducting a five-year, federally funded project to examine workplace supports for these parents.

"Stigma and fear of reprisal" have kept many workers from disclosing their family situations, says Chris Fluet, director of the MassGeneral project.

The risks of speaking up are real: Soon after Kevin McGarry, Hyde Park, N.Y., started asking questions about insurance coverage for his disabled daughter on a previous job as a paralegal in the mid-1990s, his supervisor got upset and told him to stop asking for benefits. "They didn't want my health insurance company to get wind" of the rare syndrome his daughter had from birth. Although his performance previously had drawn praise, he says he soon started getting negative feedback. Eventually he was laid off.

Having a child with a disability also requires time and effort to find and manage treatment, forcing 30 percent of these parents to quit or cut back at work, says a 2001 survey by the federal Maternal and Child Health Bureau.

Few parents can afford to cut back. More than 40 percent of families with special-needs kids have financial problems because of care costs, says a study published in June in Maternal and Child Health Journal. And 60 percent of children with special needs rely on their parents' employers for health insurance, MassGeneral says.

Now, some parents are taking the opposite tack -- turning to the workplace for support. After her autistic son was born 11 years ago, Kathy Gonzalez, a technology manager at Toyota Motor Sales USA, Torrance, Calif., was overwhelmed trying to find treatment for him. Seeing her co-workers networking on other topics, she helped start a support group last year at Toyota that draws up to 40 parents of special-needs kids to its monthly meetings. "If I could help even one parent get on track for whatever service they need for their kid, it would be worth it," Ms. Gonzalez says. At Microsoft, employees with autistic children have formed a similar network.

Jack Harris, whose 11-year-old son is autistic, was startled to learn during on-site meetings of a father's network at PricewaterhouseCoopers's Tampa, Fla., office, that 10 of the 50 other men there also had children with disabilities. With PricewaterhouseCoopers's blessing, Mr. Harris, a practice support manager, is planning an on-site special-needs resource fair early next year. The firm is looking for other ways to support such parents, a spokeswoman says.

In recent years, Mr. Bruesehoff gradually began talking about his daughter on his job in Los Angeles for accounting firm Ernst & Young. Then, when he was offered a transfer to Dallas in 2002, "I decided I was just going to come clean" and explain that the availability of programs in Dallas for Karissa, now 17, would be pivotal. Co-workers responded warmly, helping his family forge new ties in Dallas, where he now works as a human-resource manager, he says.

Mr. Bruesehoff is among 64 parents of special-needs kids who have joined a parent network formed last January by New York-based Ernst & Young. Sandra Turner, a human-resource manager, says parents on the network's informational conference calls are slowly opening up to each other. While fewer than one-fifth were willing to give their names on the first call, about half now feel comfortable identifying themselves.

Raytheon, an aerospace and defense contractor, has hosted several speaker dinners for employees with special-needs children at its Tucson, Ariz., and Woburn, Mass., facilities. Jeff Stolz, whose son Joseph, 10, has autism and bipolar disorder, was among those attending. Heartened to learn many of his co-workers also had special-needs kids, Mr. Stolz for the first time took Joseph in April to the annual "Take Your Child to Work" day festivities at Raytheon. He was apprehensive; Joseph verged on a tantrum during an introductory session. But as the day wore on and supportive adults reached out to him, Joseph calmed down, and even introduced himself by microphone at the closing session.

In a surprising move in today's cost-cutting climate, a few employers are even expanding insurance coverage for special-needs kids. Microsoft, oil-industry supplier Halliburton, and insurer Progressive Group have begun covering some of the cost of applied behavior analysis, or ABA therapy, intensive early training for autistic kids that can cost $20,000 or more.

These employers, of course, are the exception. If you have a child with a disability, only you can size up your corporate culture. A MassGeneral manual offers tips and resources, available online at www.massgeneral.org/ebs by clicking on "Resources for Employees," then opening "workplace benefits."

Let Me Win

"In ancient Rome, the gladiators went into the arena with these words on their lips: 'Let me win, but if I cannot win, let me be brave in the attempt.'

"Today, all of you young athletes are in the arena. Many of you will win, but even more important, I know you will be brave, and bring credit to your parents and to your country. Let us begin the Olympics. Thank you."

The opening of the Special Olympics 20 July 1968, by Eunice Kennedy Shriver

What Moves Me

I found this while surfing.. of course..

The Rite Stuff

A bar mitzvah represents an enormous challenge for one boy and his family, and spirits soar when he succeeds.

Sunday Boston Globe Magazine, October 19, 2003

I didn’t have a bat mitzvah, and my husband had not been raised Jewish. So why was I insisting that my firstborn son, who happens to be autistic, have a bar mitzvah?

read the rest here: http://susansenator.com/ritestuff.html

A Life Well-Lived

I don't know how appropriate it is for me to post on this site the obituary of a woman I have never met, but I was moved by what was written about her life. I am a fatalist of sorts? And have often thought "What will be said of me when I am gone?" wondering what legacy I will leave, since most days I feel like I am merely going through the motions, that perhaps I am merely equal to a tree going through the seasons and nothing more. I hope that someone might think this fondly of me.

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STEPHENS, Phyllis Bartlett - Phyllis Bartlett Stephens passed away in her sleep on September 10th. Given the life she led and the energy she exuded, it could fairly be said she has passed on to a well-deserved rest. As her mother often said of her, Phyllis was a dutiful, hard-working, caring and intelligent human being from that day in May, 1925 when she was born. The Central Valley was not big enough for Phyllis and shortly after her salutatory address to her Corcoran High classmates in 1943, she left for Stanford. While there, in addition to her dutiful attention to the honor roll, she met a gangly, mediocre pre-med student named Richard Stephens. They continued to date after graduation and in 1948 were married. One year later to the day, the first of their eight children arrived. Over the next 56 years, Phyllis gave herself to raising and supporting her children and grandchildren. But of course, she had energy to spare and an intellect that needed exercise. Her many activities included over 20 years in the San Mateo School system, volunteer work at St. Vincent DePaul, the St. Francis Center, Friends of the Belmont Library, "Friendship House" of San Mateo County Mental Health, AAUW, Twin Pines Cottage and many other groups. She also slipped in some bridge playing. Phyllis also managed to make time for simple statements of her basic beliefs and humanity - whether marching in Delano with central valley farm workers or riding the annual MLK Freedom Train into the City, she was always there to show her support for those not given the love and respect they deserved. Perhaps more than any other, Phyllis devoted her energies to the Immaculate Heart of Mary parish in Belmont. Her sense of community, based on love, honesty and acceptance (and more than a little humor), was nowhere better illustrated than in her time spent with family and friends at the many parish events held over the past 50 years. Whether she was serving up pancakes in the Parish Hall, or playing the role of Diamond Lil' in the melodrama, she supported and cavorted with her IHM friends and enjoyed every minute of it. Phyllis would no doubt bristle at the suggestion that her "community service" activities were worthy of praise. To her, these were just things people did because they were the right thing to do. She never sought recognition and she rarely, if ever, complained. Perhaps Phyllis' greatest accomplishment in helping others was being able take from it as much as she gave. She understood and appreciated that the love and attention she provided to others less fortunate than her would come back to her in equal measure. The love she gave to her mental health patients or the people at St. Francis', to name a few, could never surpass the love and pleasure she felt in return. And that is Phyllis' legacy. She not only talked about love, fairness, tolerance and Christianity, she lived them every day of her life. Her example will live on in the lives and work of her family and friends. Phyllis leaves behind a loving husband, seven children and their spouses, and 13 grandchildren (and thankfully, her recipes for Aunt Gussie's Pound Cake and her famous brownies). While she will be missed, her family feels very lucky to have spent their lives with Phyllis, and all of them are very proud to call her their wife, mother or grandmother. If desired, Phyllis would have encouraged and appreciated donations to the St. Francis Center, 101 Buckingham Ave, Redwood City, CA, 94063. Services have not yet been scheduled.
Published in the San Francisco Chronicle on 9/25/2005.

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