Tag Archives: Paul

Paul is a Senior

My 16-year-old son Paul has had a rough year. Our family’s continuing medical adventure began when Paul started having chronic and severe headaches in January. We have spent the last six months with Pediatricians, Neurologists, Neurosurgeons, Pain Specialists, Psychologists and Psychiatrists, Occupational and Physical Therapists, and Nurse practitioners. Recently, Paul has benefited from Chiropractic care in addition to the medicines provided by the Pain Management Clinic at Packard Children’s Hospital.

Yesterday was Paul’s last day at the Packard Hospital School. He is now a Senior in High School and is looking forward to going back to Paly in September. The Hospital School has a good art, theater, and science program for its patient students. Here is Paul with some of his recent art:

Paul Dickinson Goodman<br /> photo: copyright 2009 Katy Dickinson

punched out sun face masks

punched out sun face masks by Paul Dickinson Goodman<br /> photo: copyright 2009 Katy Dickinson

elements drawing

elements drawing by Paul Dickinson Goodman<br /> photo: copyright 2009 Katy Dickinson

wire and bead fish

wire and bead fish by Paul Dickinson Goodman<br /> photo: copyright 2009 Katy Dickinson

Some of Paul’s art from earlier this year:

three ceramic mugs

three ceramic cups by Paul Dickinson Goodman<br /> photo: copyright 2009 Katy Dickinson

ceramic leaf tray

ceramic tray by Paul Dickinson Goodman<br /> photo: copyright 2009 Katy Dickinson

carved head

blue scupture head by Paul Dickinson Goodman<br /> photo: copyright 2009 Katy Dickinson

Images Copyright 2009 Katy Dickinson

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More Good Free Games

My 16-year-old son Paul is researching learning games for me to pass on to Studio 17, the after-school program where I volunteer at Santa Maria Urban Ministry (inner San Jose, CA). These computer games are free and educational (more or less) but are also fun to play. I started publishing this list on April 23, 2009.

The two “Pandemic” games below require a very dark sense of humor since the player takes the part of an evolving deadly virus killing humanity in a world pandemic. However, the game does give the player an unnerving understanding of how diseases move and change.

16 February 2014 – links updated

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Good Free Games

I have been concerned to watch the Studio 17 kids at Santa Maria Urban Ministry playing mindless smash-and-blood or doll-dress-up games during their after homework computer time. I have started a list of “Good Free Games” as alternative suggestions. Studio 17 will also be buying some games (like Zoo Tycoon and Crayon Physics) soon.

I asked my 16-year-old son Paul to research and recommend Good Free Games which were fun to play but also educational. Some of these require flash software (will not work on an iPad) and all have advertisements to wait through (that’s why they are free). I added to Paul’s list games recommended by other sources. This afternoon, Studio 17 tried out about half of the games listed here and had a very good time. Additional suggestions are welcome!

I am adding to this list as we find more games, see More Good Free Games – or do a web search for “Good Free Games”.

16 February 2014 – links updated

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$163,613

If you have read my blog since January, you may know that my 16-year-old son Paul has recently developed chronic and debilitating headaches and dizziness.  Despite the capable and dedicated care of Pediatricians, Neurologists, Neurosurgeons, Pain Specialists, Psychologists and Psychiatrists, Occupational and Physical Therapists, and Nurse practitioners, Paul’s situation is stable but not improving. We continue to work with the Pain Management Clinic at Lucile Packard Children’s Hospital (LPCH). Paul is still attending the Hospital School at LPCH, so he will not have to repeat his Junior Year in High School. Thanks for your prayers and good wishes – they have been been a great support and blessing to our family.

This blog entry is about the financial side of this experience. I am not pointing my Finger of Blame at one organization or another as being Bad. I think that in general America’s medical care is excellent. But I am presenting a specific example of how very broken the financial side of America’s health system is.

When Paul first went into the hospital, we did not consider the financial side. We approved the recommended treatments and stayed focused on supporting Paul and each other. Over the months, this situation has evolved from a crisis into a new schedule: six sets of pills a day, drop off and pick up at doctors’ offices – hospital – school, walks and stretches and massage, time in the sun, and of course regular homework and chores. Almost every day, we receive medical bills or insurance Explanations of Benefits.

Explanations of Benefits are cryptic and offer a very narrow view of a small set of medical charges. The first bill which gave us any overview of what our medical adventure cost was the hospital bill for Paul’s brain surgery, for $163,613.70.

Statement Date: 03/02/2009
Service Date(s): 02/05/2009 – 02/09/2009
Total Charges $163,613.70
Patient Payments $0.00
Insurance Payments -$25,921.32
Insurance Adjustments -$136,324.50
Other Adjustments $0.00
Balance Due Upon Receipt $1,367.88

When I reviewed the statement, I was equally amazed at the total price and the 83% insurance adjustment. I know if I did not have a good job which includes health insurance, I would not be eligible for either the $25,921.32 insurance payment or the $136,324.50 discount. I would have to pay $163,613.70. Please understand, with my husband still looking for work, I am quite happy to pay only $1,367.88 for Paul’s brain surgery. However, I know there are growing numbers of people who have no job and little or no health insurance such as mine. It feels very wrong that the privileged pay the least.

Paul-Hospital SchoolPaul at LCPH Hospital School, Palo Alto CA<br /> photo: copyright 2009 Katy Dickinson Topiary ElephantLPCH Topiary Elephant, Palo Alto CA<br /> photo: copyright 2009 Katy Dickinson LPCH GiraffeLPCH Topiary Giraffe, Palo Alto CA<br /> photo: copyright 2009 Katy Dickinson LPCH Daffodils and PansiesLPCH Daffodils and Pansies, Palo Alto CA<br /> photo: copyright 2009 John Plocher

Images Copyright 2009 by Katy Dickinson

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What Happens After College? (Geeks and the Silicon Valley)

15 March 2010: More on this topic is in the blog entry “Transitions for Young Adults with Neurocognitive Deficits

On Saturday, 4 April 2009, I am giving a talk in Lafayette, California, called “What Happens After College? – Kids with Neurocognitive Disability Working in
Engineering and Computing”
at the Orion Academy 3rd Annual Seminar on Post-Secondary Transition Planning for Young Adults with Aspergers, NLD and other Neurocognitive Deficits.

I put together this presentation based on information and advice from many sources as well as from my own experience as the parent of a 16-year-old son with social-cognitive disability. I had particular fun creating the “Geeks and the Silicon Valley” section of the talk. I included my favorite quote from
Larry Wall (creator of Perl): “Most of you are familiar with the virtues of a programmer. There are three, of course: laziness, impatience, and hubris” plus an xkcd cartoon, pictures of tshirts (“You read my t-shirt. That’s enough social interaction for one day.”) from Think Geek and the xkcd store, and other geeky stuff.

The second part of the talk covers what counts in finding a job in the Silicon Valley (Recommendations, Academics, Experience, Being Fast), how to get experience before getting a job (Open Source, Internships, Volunteer Projects, College Jobs), and other essential knowledge. I make several references to The Unwritten Laws of Engineering (Revised and Updated, 2001) by James Skakoon and W.J. King, available from the ASME product catalog. My last quote is
from Ivan Sutherland in his 1996  Technology and Courage (Sun Labs Perspectives-96-1):

“I, for one, am and will always be a practicing technologist.
When denied my minimum daily adult dose of technology, I
get grouchy. I believe that technology is fun, especially when
computers are involved, a sort of grand game or puzzle with
ever so neat parts to fit together… If the technology you do
isn’t fun for you, you may wish to seek other employment.
Without the fun, none of us would go on.”

You can  review my presentation online, or you can attend the event to hear it in person!

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Silicon Valley Christmas

We had a pleasant Christmas at home with family this year. My parents adopted two young Siamese cats. My daughter Jessica came home from Carnegie Mellon University for three weeks. My two brothers and their families visited for almost a week. We drove north to San Francisco several times: to sing Christmas carols on the cable car and see the city lights, go to the Great Dickens Christmas Fair, gather for a family dinner at the Beach Chalet, and just visit.

We hosted three parties (Christmas, Jessica’s 20th birthday, and New Year’s). Unfortunately, our family photo server got sick and eventually died, so I am just now able to post this blog entry…

John and Jessica and I went to San Francisco Federal District Court on 19 December 2008 to hear attorney Victoria Hall present to Judge Jeffrey S. White on behalf of  Dr. Bob Jacobsen the latest on  JMRI and the KAM Open Source dispute.

St. Andrew’s Episcopal Church had a children’s Christmas pagent, and the craft fundraiser for SAMA (St.
Andrew’s Medical Assistance).  Sun Labs held its Holiday Cookie Exchange (to which John Plocher sent his famous peanut butter K Bars).

On our evening walks around our Willow Glen neighborhood, John and I admired the Christmas lights. One neighbor programmed a wonderful yard display that lit up different parts of their house as well as trees, bushes, and figures (candy canes, a seal, snowman, bear, and igloo) exactly timed to the movements of Christmas tunes. My favorite music was the Vince Guaraldi theme from “A Charlie Brown Christmas”. John and I stood in the rain the hear it twice.

We finally finished glazing and firing all of the ceramics we brought home from camp in August, including three tea cups by Jessica. My best Christmas present was one of a set of three beautiful and
well crafted ceramic cups my son Paul made at school: one each for John, Jessica, and me.

Borte and Khan

Borte and Khan, Siamese kittens photo: copyright 2008 Katy Dickinson

Laura and Borte

Laura and Borte the Siamese kitten photo: copyright 2008 Katy Dickinson

19 Dec JMRI Hearing, Federal Court

JMRI, 19 December Hearing, Federal District Court, Victoria Hall, Dr. Bob Jacobsen, Jessica Dickinson Goodman, Katy Dickinson photo: copyright 2008 John Plocher

Sun Labs Cookie Exchange

Sun Labs Cookie Exchange photo: copyright 2008 Katy Dickinson

sheep practice

St. Andrew's Christmas pagent sheep practice photo: copyright 2008 Katy Dickinson

angel practice

St. Andrew's Christmas pagent angel practice photo: copyright 2008 Katy Dickinson

St. Andrew’s cross

St. Andrew's cross with 3 Christmas trees photo: copyright 2008 Katy Dickinson

St. Andrew’s pagent

St. Andrew's children's pagent photo: copyright 2008 Katy Dickinson

St. Andrew’s children’s pagent

St. Andrew's children's pagent photo: copyright 2008 Katy Dickinson

SAMA craft sale

SAMA craft sale photo: copyright 2008 Katy Dickinson

SAMA craft sale

SAMA craft sale - embroidered purse photo: copyright 2008 Katy Dickinson

Cuthbert’s Tea Shoppe

Dickens Fair

Tea at the Dickens Fair, Jessica Dickinson Goodman, Matthew Holmes, Eleanor Dickinson photo: copyright 2008 Katy Dickinson

Pirates of Penzance

Dickens Fair

Pirates of Penzance, Dickens Fair photo: copyright 2008 Katy Dickinson

Ladies’ Oratorical & Recreational

Society at Mad Sal’s, Dickens Fair

Ladies' Oratorical and Recreational Society, Mad Sal's, Dickens Fair photo: copyright 2008 Katy Dickinson

SF Cable Car Carols

San Francisco Cable Car Carols, Eleanor Dickinson photo: copyright 2008 Katy Dickinson

Seeing the SF Hyatt’s decorations

Seeing the San Francisco Hyatt's decorations, Eleanor Dickinson, Jessica Dickinson Goodman, Matthew Holmes, Paul Dickinson Goodman, Wade Dickinson photo: copyright 2008 Katy Dickinson

Jessica and Paul

Jessica and Paul, San Francisco Hyatt photo: copyright 2008 Katy Dickinson

Hyatt lights, elevators

San Francisco Hyatt lights and elevators photo: copyright 2008 Katy Dickinson

decorating our tree

Jessica and Paul decorate our tree photo: copyright 2008 Katy Dickinson

giving tree advice

John Plocher giving tree advice photo: copyright 2008 Katy Dickinson

Jessica, Paul, tree

Jessica, Paul with tree photo: copyright 2008 Katy Dickinson

Willow Glen lights

Willow Glen Christmas lights photo: copyright 2008 Katy Dickinson

Paul’s mugs

3 mugs by Paul Dickinson Goodman photo: copyright 2008 Katy Dickinson

Jessica’s mugs

Jessica's mugs photo: copyright 2008 Katy Dickinson

Jessica’s 20th

Jessica's 20th birthday party photo: copyright 2008 Katy Dickinson

Images Copyright 2008 by Katy Dickinson and John Plocher

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Paul’s Glass

My 16-year-old son Paul is taking Ceramics class at Paly (Palo Alto High School). He has recently started to work with glass as well as clay. Paul is looking forward to taking a full year of glass blowing next year. For now, he is enjoying learning to work with rod glass. Each piece has to cool for 24 hours; sometimes the colors change unexpectedly during cooling. I have a feeling we are all getting small glass flowers, leaves, and mushrooms for Christmas presents this year.

Paul’s first glass flower
Paul's first glass flower photo: copyright 2008 Katy Dickinson

Paul’s second flowers
Paul's second glass flowers photo: copyright 2008 Katy Dickinson

Paul’s leaves
Paul's glass leaves photo: copyright 2008 Katy Dickinson

Images Copyright 2008 Katy Dickinson

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