Sunday, January 20, 2008

[StemCellInformation] Digest Number 732

Messages In This Digest (4 Messages)

Messages

1.

# 408 Tuesday, January 15, 2007 - OF ROSA PARKS, STEM CELLS, AND DR.

Posted by: "Stephen Meyer" meyer74@bellsouth.net   stephen_meyer_stemcells

Sat Jan 19, 2008 7:36 pm (PST)


# 408 Tuesday, January 15, 2007
<file:///C:/My%20Webs/myweb11/Archive%20322%20Monday,%20April%2020,%2020\
07%20-%20FLORIDA%20ONCE%20MORE%20PIVOTAL%20TO%20NATION’S%20FUTURE\
.htm> - OF ROSA PARKS, STEM CELLS, AND DR. COREY HARWELL

“Something in its environment tells each cell what it can
beâ€"will it become part of the excitatory process? Or is it an
inhibitor?”, said Dr. Corey Harwell.

It was a wonderful day: trees and sunshine and hundreds of people,
everyone dressed to their best, the wedding reception for Bob and
Danielle Klein.

Dr. Harwell and his wife Lynn, a young African-American couple, were
sitting with Gloria and me.

On the white linen table cloth before us was a small mysterious square
box, maybe three inches across, half an inch deep.

Don’t open the boxes, we had been told, not yet.

Lynn Harwell is senior administrative assistant to Bob Klein, Chair of
the Independent Citizens Oversight Committee for the California stem
cell program.

I enjoy meeting any supporter of the stem cell research, and Ms. Harwell
is very easy to talk to, with her smile warm enough to melt an igloo.

When I first met her at a CIRM meeting, I expressed interest on doing an
article on her personally for this column. She wouldn’t hear of
it.

“Oh, no, no,” she saidâ€"“But you have to talk to
my husband. He’s a scientist!”

As we waited for the signal to open our little boxes, of course we were
talking stem cells. And as usual when I talk to any scientist, let
alone a neurobiologist just starting off in his career, so he
hadn’t yet learned the tricks of communication with the general
public, I was listening as hard as I couldâ€"and struggling to keep
up.

“Mm-hmm,” I would contribute now and then, nodding my head
like I understood what he was talking about.

But sitting there in the warm sunlight, waiting for the signal, I had a
flashback to the Middle Agesâ€"well, my personal middle ages, when
I was an 8th grade English teacher…

I had started a multicultural club, called True Colors, only weeks
before a racial incident, a fist fight between an Arab-American and a
white kid who had made comments about “camel jockeys”. The
students were given the choice between expulsion and talking out the
situation before a group of their peers, which was us. They had chosen
the latter, of courseâ€"discussed the causes of the fight, decided
it was trivial--and both joined the club.

We got the idea of putting on a play about the accomplishments of
minority Americans, with the ticket proceeds going to charity: in this
case the American Paralysis Association.

Our first big play was called ROSA PARKS AND THE RACIST BUS DRIVER.

It opened with a glasses-wearing little girl named Suzie who had
Down’s syndrome. She walked all the way from the back of the
auditorium, and slowlyâ€"triumphantly-- read the words which opened
our play, which was, after all, about the benefits of full inclusion.

“True Colors… welcomes you… to our.. play. It is
called… Rosa… Parks and the Racist… Bus
DRIVER!”

On the stage in front of the curtains was a row of battered metal
folding chairs.

Through the special effects magic of an 8th grade program with no money,
the row of chairs became a bus.

Our “Rosa Parks”, a 12 year old with glasses and
magnificent cornrows, sat down on the fourth chair behind the racist bus
driver, which was me.

She talked about her feet hurting.

The driver came and told her to move to the back of the busâ€"and
Rosa Parks said no.

The Selma Bus Boycott had begun.

Ten cents a person, that bus ride cost. If a customer refused to ride,
that was one dime. But a community? Day after day, dimes become dollars,
adding up to financial impact.

But what about the racist bus driver? History does not tell us, what
happened to him.

In our play, he got drunk one night, and made an historically inaccurate
visit-- to Rosa Parks’ house.

He wanted to know, he said, why had she done it, why had she started
this fuss? What had African-Americans ever done that was any good,
anyway?

She asked him in.

In her living room, naturally, she had a Magic Mirror, through which the
past returned.

Stepping through the empty wooden frame were Asian kids, Germans,
Hispanics, every nationality imaginable, but for the purpose of our
play, they were African-Americans all.

Like Crispus Attucks, first to die in the American Revolution, his
life’s blood sacrificed on the ice and snow, March 5th, 1770, in
the Boston Massacre.

Or a genius child, Benjamin Banneker, making a working clock out of
wood, and writing an almanac before the age of twelveâ€"as a man,
he helped design Washington, DC.

Mary Elizabeth Bowser: in the Civil War, she was Jefferson
Davis’s maid-- and a spy for the Union sideâ€"sending
General Grant secrets, helping shorten that terrible conflict.

Ralph Bunche helped build the United Nations.

George Washington Carver saved the broken economy of the South,
encouraging crop rotation and coming up with an astonishing number of
uses for the peanut, including house paint and peanut butter.

Joseph Cinque led a rebellion on a slave ship. He was captured,
triedâ€"acquittedâ€"until President Martin Van Buren (to his
everlasting shame) demanded the case be retried. But former President
John Quincy Adams defended Cinque, and he went back to Africa, free.

Elizabeth Freeman was a maid servant in 1781. She saved up her scanty
earnings, hired a lawyer, challenged slavery in Massachusettsâ€"and
ended it.

Explorer Thomas Henson with Admiral Peary was the first man to reach the
North Pole, for which he was awarded the Congressional Medal of Honor.

Percy Lavonne Julien invented cortisone, first relief from the crippling
pain of arthritis.

The play was all in poetryâ€"well, it rhymed anyway! Two
African-American cowboys…

One, famous for riding his horse into a saloon (and ordering a whiskey
for it) was also a sharecropper who left the fields, walking all the way
from Tennessee to Kansas; he worked with Bat Masterson and helped tame
the Wild West.

Beside him was William Pickett, the cowboy who invented the rodeo sport
of bull-doggingâ€"but he had a variation: the astonishing technique
of biting the nose of a steer, and with his teeth, wrestling the animal
down.

There was Harriet Tubman, who escaped slavery in the South, by walking
hundreds of milesâ€"and then went back, 19 times-- to help other
slaves escape on the underground railroad. She freed 1,000 people,
including her father and mother.

And Sojourner Truth, a Dutch-speaking woman, sold to a slave-owner who
tied her wrists and hung her from a hook in the ceiling, saying,
“I’ll whip the Dutch out of you”. That monster made
her have five children, four of which he sold, one after another. The
last child, she took and ran away. A decent couple found her, bought her
freedomâ€"and Sojourner Truth became a champion for the rights of
women. She met Abraham Lincoln, who invited her to come and visit him
again, after the war, but then was killed. At the age of 84, on her own
deathbed, Sojourner Truth told a young friend:

“Why are you crying, honey, I am not going far. I am not
dyingâ€"I’m going home, like a shooting star.”

There was Daniel Williams, former shoemaker, first doctor to sew up a
human heart--

and Granville T. Woods, inventor of the subway.

The play ended with a skinny white girl with a painted moustache and
booming voice giving highlights of Martin Luther King’s greatest
speechâ€"“I have a dream today…when all of God’s
children will be judged, not by the color of their skin, but by the
content of their character… I have a dream today…”

Dreams… it was so hard to make them real.

I asked Dr. Corey Harwell, what made him become a stem cell scientist.

He smiled, and all the scientific lingo dropped away.

“My father inspired me,” he said.

“He ran a janitorial service, and he worked like two men. And he
said that education was power, a way to live more than just the grinding
labor he knew.”

“At first, I thought scientists were just some old white men in
labcoats, doing mysterious things in laboratories.

“I might have ended up a doctor, a good thing in itself.

“But I wanted to do something which would impact more lives,
maybe make a discovery, or find a treatment to help heal or cure a
disease.

“I had an opportunity to take a summer program on stem cell
research at UCSF, the University of California at San Francisco, and
that did it for me.”

He spoke about cells again, and their “niche”, the tiny
environment around each one, which determines what that cell becomes.

I thought about his father, who had encouraged him, guiding him on a
positive path, and about the government program, which had encouraged
him.

A voice rang out across the unfenced back yard, gathering the attention
of the guests, there where we sat at our tables, with our little boxes
dutifully unopened.

“In the box before everyone is a living butterfly… Make a
wish, and set it free!”

Wow….I opened my box.

Oops.

My butterfly was dead. I blew on it, wiggled its wings back and forth,
considered mouth to mouth resucitiation. But the size differential made
that a little difficult so we saved it for the scrapbook.

I hoped that didn’t mean my dream was disqualified.

But Gloria smiled at me, and I knew she had the same dream.

She opened her little container.

A bright-winged insect appeared. Fragile, beautiful, it clambered to the
edge of the box, perched, stretched, almost seemed to yawnâ€"and
fluttered away.

And the young couple sitting beside us wrapped their hands together and
smiled at each other, as their butterflies spread wings like hope, and
flew…

Today, as a research scientist at the University of California at San
Francisco, Dr. Corey Harwell is working with tiny cells that offer hope
to millions.

And, in his spare time, he works with a young scientists’
program, encouraging them, so that one day, they too can become part of
the excitatory process…

And not an inhibitor.

Don Reed
www.stemcellbattles.com <http://www.stemcellbattles.com/>

Don C. Reed is co-chair of Californians for Cures, and writes for their
web blog, www.stemcellbattles.com <http://www.stemcellbattles.com/> .
Reed was citizen-sponsor for California’s Roman Reed Spinal Cord
Injury Research Act of 1999, named after his paralyzed son; he worked as
a grassroots advocate for California’s Senator Deborah
Ortiz’s three stem cell regulatory laws, served as an executive
board member for Proposition 71, the California Stem Cells for Research
and Cures Act, and is director of policy outreach for Americans for
Cures. The retired schoolteacher is the author of five books and thirty
magazine articles, and has received the National Press Award.

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2.

# 407 Friday, January 11, 2007 -  WAITING FOR A STAR?

Posted by: "Stephen Meyer" meyer74@bellsouth.net   stephen_meyer_stemcells

Sat Jan 19, 2008 7:39 pm (PST)

# 407 Friday, January 11, 2007
<file:///C:/My%20Webs/myweb11/Archive%20322%20Monday,%20April%2020,%2020\
07%20-%20FLORIDA%20ONCE%20MORE%20PIVOTAL%20TO%20NATION’S%20FUTURE\
.htm> - WAITING FOR A STAR?

The envelope was square, and of quality paper.

I get five or ten letters a day from political campaigns, invariably
containing the same affectionate message: things are terrible, vote for
me, send money. With the state of my credit card, such communications
are not usually successful.

I bent my wrist to Frisbee-toss it into the basketâ€"but it was
heavy.

All right, I thought, I will just open it-- but I am not giving
anything-

An invitation to Gavin Newsom’s inauguration ceremony as Mayor of
San Francisco?

I looked at it suspiciously, shook it. Something fell outâ€"aha,
the request for donations? No. It was a second invitation, to a party at
the De Young Museum, to celebrate Mayor Newsom’s second term.

It appeared to be real.

I tried to think what I had done to deserve such an honor.

I had met the Mayor a couple times, at meetings of the California stem
cell program, and had been favorably impressed.

Mayor Newsom supports stem cell research, and he wanted San Francisco to
be chosen as the site for the California Institute for Regenerative
Medicine.

Each of the finalist cities was allowed to make a presentation, starting
with Emeryville, forever remembered as the first homeâ€"the interim
headquarters-- of the CIRM.

San Francisco’s presentation was a bus ride through San
Francisco, where the mayor sat next to the bus driver, and told us why
he loved the city he served. He needed no notes, no one to sit beside
him and whisper suggestions. He just knew.

Afterwards, a reporter asked me, as a patient advocate, which city would
I pick?

I told the truth, which was that each city had great reasons for the
honor.

But I added, “in the great singer Tony Bennett’s words:
“I left my heart in San Francisco”.

I said the same thing in a couple public hearings, and at the decision
day, I found myself sitting behind the Mayor. The decision was
announced--- and Gavin Newsom turned around and shook hands with the
grayhaired old geezer in the gray suit. The picture made the papers, and
I was famous in my house for thirty seconds.

I called up his campaign headquarters and said I appreciated Mr.
Newsom’s support for stem cell research, and would be willing to
say so in public, if they ever needed a patient advocate’s
support. They thanked me politely, and nothing happened.

Was that it? Or, more likely, because I had contributed $25 one time,
and was on the list of micro-donors.

Well, there was only one thing to do. I cleared my throat and tried to
impress Gloria.

Anything of a fun nature that comes along, I always run and tell the
Mrs. She has to put up with me the rest of the year, heaven knows.

To my delight, she got all excited. What should she wear, Roman must
come, etc, etc.

We got lost, and only arrived an hour early.

The guard looked at a huge alphabetical list, one of several. She asked,
was I on the 6:30 list?

I looked at Gloria, who knows everything of a practical nature. She
shook her head.

“Oh, then you can’t go in yet,” the guard said.

We took the elevator down to the garage, and sat in our car in the
parking lot for an hour.

But when we stepped out of the elevator the second time, northern
California seemed to have joined us.

There was a line.A biiiiiiig line.

I had on my Hillary button.

This occasioned comment.

About six people made positive noises, gave me thumbs up signs.

But one person sniffed as if I had not bathed recently.

Pinching her nostrils, she said, hmfâ€"she had seen “a
button which said, anybody but Hillary”!

To which I responded, yes, there was a lot of prejudice against women
even now, and ignorance must be expected.

The conversation was not long.

Now I must point out, that my partner in stem cell adventures, Karen
Miner, is a staunch ally for John Edwards.

My sister Barbara loves the candidacy and potential of Barak Obama.

Hillary Clinton makes my heart singâ€"but the truth is, I am
delighted with all four of the top Democratic candidates. Each one is a
strong stem cell research supporter.

We are losing New Mexico governor Bill Richardson from the race, because
he can’t quite draw enough financial support, but he is an
outstanding human being, a worker for stem cell research, his state has
an actual funding program for it, not to mention he has what may be the
best foreign policy credentials of any of the candidates.

On the Republican side, I have respect for John McCain, who voted yes on
the Stem Cell Research Enhancement Act. Unfortunately, like Rudy
Giuliani, McCain has pledged to appoint “strict constructionist
judges” to the Supreme Court, and that is one reason I could
never vote for either man. The Supreme Court at present is the most
conservative court I know of, and one more like Roberts or Scalia or
Thomas would doom any kind of fairness. The other Republicans seem to be
locked in a dinosaur contest, to see who can be the most
backward-lookingâ€"“I’m more conservative than you are,
no, no, it’s meee, I’m the most
conservative!”â€"Ron Paul is the only one who seems capable of
even considering an original thought.

The doors opened, and about three million of us poured in.

There was food. This interested me greatly.

Unfortunately, it was that expensive stuff that is beautiful to look at,
and virtually inedible. Which did not slow me down, of course, I
meanâ€"free food?

I saw Michaela Alioto, all smiling energyâ€"now there is someone
with a political future! The wheelchair she drives does not slow down
her will, or her dedication to serve. She is already involved, and there
is a lot more to be heard from her.

There was a famous (and very loud) Cuban band. I only know one Cuban
song, the famous one, “Guantanamera, guahera,
Guantanamera,” but they didn’t play that one.

We stood, and waited.

“Where’s Roman?” Gloria said. Gloria had only made
about eleven phone calls to Roman’s cell, which meant she was
just moderately concerned. He was driving his adapted van over, just as
he did every day to go to Cal Berkeley, so there was no need to worry--

“I don’t see Roman,” Gloria said, and looked at me.

Mumbling to myself, I went on patrol.

Both floors were jam-packed with people, like one of those jungle movies
where explorers hack their way through impenetrable undergrowth, and as
I had left my machete home, the only way forward was to keep
apologizingâ€"sorry, oops, I didn’t mean to step
onâ€"leaving a ripple of irritated people.

There he was! My golden shining son, dressed to a T, handsome like Cary
Grant with musclesâ€"talking with ICOC Chair Bob Klein, his wife
Danielle, new CIRM President Alan Trounson, and his wife, whose name I
did not catch, sorry.

Bob’s wife Danielle was handing Roman a plate of food, and my son
was chatting away, at ease like always. Roman can make small talk in any
situation, and even listen charmingly, unlike his father, who tends to
be a one-subject talk shop.

After shaking hands all around, I fought my way back to Gloria, and we
returned.

More waiting. More music. My ears felt like bongo drums, vibrating,
pounded on.

My back was hurting, I felt myself becoming increasingly grumpy.

I told Gloria, “Five minutes! If he is not here in five minutes,
that’s it, we have to go, it’s past my bedtime!”

Gloria said, “What?”

I turned to Roman and yelled in his ear.

“They called Richard Nixon “Iron Butt”,” I
said, “Because he could sit through the longest boring
meetings!”

“Don’t scream in my ear,” said Roman.

A stir of excitement.

At last, there he was, the Mayor, making his way to the stage, slowly,
stopping to greet folks along the way.

To say Gavin Newsom stands out in a crowd is an understatement. It is
hard to describe the impact he makes, like there is a personal spotlight
following him, and he was in Technicolor.

Star quality.

Physically beautiful, he draws the eye.

But that’s not enough. A model can be drop-dead gorgeous, but
empty as a human being. One of the Republican Presidential candidates is
movie star handsome, but I wouldn’t trust him to lead a trip to
the restroom.

The band shifted to “Guantanamera ”â€"ah, their
signature songâ€"then smiled and carried their gear off the stage.

The organizer for the event spoke, and I waited to hear what the Mayor
would say, hoping it would not be some empty blathering. I was not
disappointed.

When Gavin Newsom spoke, the inner man matched the outer appearance. He
had something real to say: and he put it in a way that magnetized
everyone’s attention.

“San Francisco is the most diverse city in the world”, he
said, “But we get along, and we work together, and progress
happens.

“We will always fight against wrongâ€"but we should also
remember what is rightâ€"and this, tonight, as we put all
differences aside, and celebrate: this is so right,” he said.

He spoke maybe two minutes, if that long. But it was invigorating.

The man will have a shot at Governor one day, and President as well. It
is just obvious. He has that appeal which draws people to him, charisma,
and genuine intelligence. He will also stand his ground in a fight.

I remember how he spoke up early for Proposition 71, back when a lot of
people said there was no chance it would pass. I don’t forget
support like that.

Then Gloria and I were on our way out (it was wayyy past my bedtime now)
and as we slowly made our way through the cheerful mob, something
occurred to me.

Every one of the folks around me was a worker. They could celebrate
because they had done the work to get a good man elected. They had not
sat around idly, waiting for a star. They got involved, and did
something.

When grassroots folks like themâ€"and us-- do our work, a leader
will emerge.

But without us in the trenches, they have no chance.

San Francisco united, and a leader emerged: Gavin Newsom.

And for the leadership of America?

That’s up to us, isn’t it?

In the primary struggle, we will make as much noise as we can,
supporting whichever individual who must rouses our blood and inspires
our mind.

When the primaries are over, and the champion is chosen, we will unite
beside our party’s choice.

Then the struggle begins, to elect the next President of the United
States of America.

And when it is over at last, and the votes are counted-- fair and
square, one hopes-- America will come together beside the new leader,
giving him or her our very best.

The work ahead demands no less.

Don Reed
www.stemcellbattles.com <http://www.stemcellbattles.com/>

Don C. Reed is co-chair of Californians for Cures, and writes for their
web blog, www.stemcellbattles.com <http://www.stemcellbattles.com/> .
Reed was citizen-sponsor for California’s Roman Reed Spinal Cord
Injury Research Act of 1999, named after his paralyzed son; he worked as
a grassroots advocate for California’s Senator Deborah
Ortiz’s three stem cell regulatory laws, served as an executive
board member for Proposition 71, the California Stem Cells for Research
and Cures Act, and is director of policy outreach for Americans for
Cures. The retired schoolteacher is the author of five books and thirty
magazine articles, and has received the National Press Award.

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3.

Please note the additional location, added to the agenda below.

Posted by: "Stephen Meyer" meyer74@bellsouth.net   stephen_meyer_stemcells

Sat Jan 19, 2008 7:44 pm (PST)


MEETING NOTICE AND AGENDA

California Institute for Regenerative Medicine

BIOTECH LOAN PROGRAM TASK FORCE

OF THE INDEPENDENT CITIZENS' OVERSIGHT COMMITTEE

TO THE CALIFORNIA INSTITUTE FOR REGENERATIVE MEDICINE

Organized Pursuant to the

CALIFORNIA STEM CELL RESEARCH AND CURES ACT

Date: Wednesday, January 16, 2008

Time: 11:00 AM - 2:00 PM (Estimated)

Locations:

Crowne Plaza Hotel SFO

1177 Airport Blvd

Burlingame, CA 94010

BIOCOM

McGraw Conference Room

4510 Executive Dr., Plaza One

San Diego, CA 92121-3021

Open Session:

1. Call to Order.

2. Roll call.

3. Informational presentations by and dialogue with capital providers
and other experts.

4. Schedule and timeline for future meetings and reports back to ICOC.

5. Public Comment.

6. Adjournment.

THE ORDER OF BUSINESS MAY BE CHANGED WITHOUT NOTICE.

Notice is hereby given that the order of consideration of matters on
this agenda may be changed without prior notice.

**NOTICE**

The California Institute for Regenerative Medicine and its Independent
Citizens Oversight Committee, and any subcommittees thereof, comply with
the Americans with Disabilities Act (ADA) by ensuring that the meeting
facilities are accessible to persons with disabilities, and providing
that this notice and information given to the Members of the Committee
is available to the public in appropriate alternative formats when
requested. If you need further assistance, including disability-related
modifications or accommodations, you may contact Melissa King at the
California Institute for Regenerative Medicine at 415-396-9100 no later
than the day prior to the meeting.

Questions or requests for additional information prior to the
Independent Citizens Oversight Committee meeting may be referred to
Melissa King at the California Institute for Regenerative Medicine at
mking@cirm.ca.gov or 415-396-9100.

This meeting agenda is also available on the website for the California
Institute for Regenerative Medicine at http://www.cirm.ca.gov .

Melissa King

California Institute for Regenerative Medicine

210 King Street

San Francisco, CA 94107

Desk: 415-396-9119

FAX: 415-396-9141

www.cirm.ca.gov

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4.

# 405 Tuesday, January 8, 2007 - WHY WE FIGHT:  One Day Raising a Ch

Posted by: "Stephen Meyer" meyer74@bellsouth.net   stephen_meyer_stemcells

Sat Jan 19, 2008 7:50 pm (PST)


# 405 Tuesday, January 8, 2007
<file:///C:/My%20Webs/myweb11/Archive%20322%20Monday,%20April%2020,%2020\
07%20-%20FLORIDA%20ONCE%20MORE%20PIVOTAL%20TO%20NATION’S%20FUTURE\
.htm> - WHY WE FIGHT: One Day Raising a Child with Autism

Every caring parent has worried, one time or another: what if we died
tonight? Who would protect our children, and provide for all their
special needs, if we were gone?

Nicki Pecchenino is a fine writer, (I am encouraging her to write a
book; you will see why in a moment) and a friend of stem cell research.

She is also the mother of an autistic child.

Prior to meeting Nicki, my only contact with autism was the movie
RAINMAN, where Dustin Hoffman’s portrayal brought the condition
to national awareness.

The character in RAINMAN was based on an autistic man (actually his
brother, who could imitate the symptoms on demand, so the actor could
study and reproduce his behaviors) said to be very high-functioning.

The movie was funnyâ€"“I am an excellent driver” he
would say as he repeatedly bumped the car along at five miles an hour--
and terrifying.

It seemed impossible to deal with him. Everything he wanted was just so
extremely important, and there was no compromising. For instance, every
day, he had to watch one program, Judge Wapner, and as the time of the
program grew closer, if he was not near a TV, he would become
increasingly agitated, until he could (unless given his way) explode in
a shrieking screaming frenzy, out of control, dangerous to himself and
others.

Tom Cruise’s character was suddenly faced with the challenge of
providing for, and protecting, this extraordinarily difficult
individual. At the end of the movie, he realizes, he cannot do it.
Dustin Hoffman returns to a nice friendly institution (obviously
expensive) and we the audience go back to our normal life, relieved it
is not our problem.

But what would it be like, if the movie did not end, and we had that
responsibility?

At least, autism doesn’t happen to very many families, does it?

Here’s Nicki Pecchenino:

“Once considered a rare disorder, today autism is estimated to
affect 1 in every 150 children, 1 in 84 boys…”

I asked Ms. Pecchenino to write about just one day in the life of
raising an autistic child.

Here she is.

“Today begins at 4 a.m. when 11-year-old Christopher lands on top
of me, wide awake, after only 5 hours of sleep. I am so tired, having
only been asleep myself about four hours. I decide to give him more
sleeping medication, knowing it will take him off schedule as he will
sleep later. But, I have to get more sleep and so does he. His sleep
cycles have never been normal and getting to school on time has become
something I have had to give up on. His health is more important than an
hour’s worth of school.

At 7 a.m., it is time for me to make his special breakfast. He cannot
digest anything with gluten, dairy or soy, so I do a lot of cooking,
special ordering products from both stores and online…
gluten/dairy-free pancakes, muffins, or French toast.

He is still sleeping at 8, so I take these precious moments of quiet to
turn on some of my music and get the laundry started and attempt to do
some medical research online. But, I realize I must also pack his snack
and get extra clothes and diapers ready because today is horse riding
lesson day.

We will go to an equestrian center vendorized by our regional center and
they will pay for his lessons. The staff is inadequately trained, and I
must teach them what he is attempting to convey, his sensory needs, and
how to help him...

(But first there are some other chores…DR)

10:00 a.m. â€" I help him to get dressed. “Left leg,
Christopher,” I say, as he tries to put both legs into one pant
leg. “Pull up. Good boy!” He cannot button, so I search
for weeks at a time for pants with elastic waists. Now for shirt. Great,
he puts his arms up and helps himself. “Good Boy!” He
cannot put on socks, and I am in too much of a hurry to do a lesson this
morning, so I enable him. Guilt City, once again. Shoes, come on do it
this time, baby, I think. He gets the shoe, and gets it on. Yes!! One
more, sweetie, I think, as I stand, trying to remain patient. He does
it…

I decide to skip brushing his teeth this time as he is so orally
defensive, and is in a good mood. Need to have a pleasant morning
without a struggle. He now weighs 112 and I am 4’ 11”, 97
lbs. so he is learning he can overpower me. Thank God he is not
aggressive like so many on the spectrum. In fact, he is a love bucket in
all ways. So far….puberty hitting soon.

10:30 a.m. We head out, extra set of pants and underwear and wipies and
food and water all packed. He is cognitively about 2-3 years of age, and
still needs to wear diapers at night and during the long rides if I
cannot make stops. He drinks gallons of water, the reason for which the
doctors have not been able to determine, but we moms know it is the
body’s method for flushing out toxins and food and environmental
allergens.

We make it to the dry cleaners where he plays with their Christmas
decorations, almost pulling them all down, so I have to hold his hand
and attempt to sign the credit card slip and gather up my dry-cleaning
with the other.

He needs to use the bathroom, so we head next door to the deli, where
they all know us, and we use their facilities. He has to stop by the
tea-making machine to watch the bubbles and then races down the aisles
between people eating to get to the ice machine. I apologize along the
way, as I drop my purse and he kicks off his shoes. Many children with
autism cannot tolerate clothing or shoes, and he is no exception. If I
had a nickel for each time I have had to put his shoes back on, I could
almost fund the entire California stem cell program!

We depart the deli and head to the drugstore, where again, we must use
the facilities.

By the time we reach the bank, he and I are laughing about our singing.
Music is the conduit by which I reach into the world of autism. He loves
me to sing to him, so I do it constantly. I look like a fool in the
grocery store, but I have long since let anyone’s glares and
stares sink in. If I make him happy, that is all that matters. The bank
personnel are generous with me and allow us to let him use the bathroom.

It is a long (45 minute) drive to the therapeutic center, but it is the
only horse stable who will take children who are developmentally
disabled. I have called at least five, and all have their excuses:
liability insurance won’t cover a child with autism (they are
almost always quite physically fit), don’t know enough and
don’t have the time to learn, must charge $60/hr. to cover their
costs and don’t have adequate staff. I have heard all of it.

We finally head to horse riding lessons, but by now I am on the cell
phone with the Regional Center psychologist. She is my sounding board
and professional mentor, along with two other moms who mentor me. I also
mentor. We are a strong network in a very isolated world, so we hang
onto one another for dear life.

The teachers are not ready and he is beginning to tantrum. Riding the
horse is such a joyful experience for him. They don’t put a
helmet on him, and I must remind them. They tell me I can go take a walk
for about 30 minutes, but I stay handy, in case of emergency.

I call back the psychologist and we continue our conversation until
interrupted by someone screaming at me, “Come get Christopher! He
will not stay on the horse and you need to take him home.” I
march over and am livid. What is the problem? Well, he is giddy and
wants to lie backwards. Of course, he does, I realize instantly, that
is a blood rush. So much education is needed…

I pick him up and tell them to forget it. Instead, I take him on a walk
around the grounds.

The reason for his giddiness is soon revealed: He needs to have a bowel
movement.

Children with autism often get almost an LSD high prior to defecating.
It is a peptide issue... I must allow him to pull down his pants in the
middle of a field. So, nothing new…..he has had to urinate and
defecate in places I can’t begin to count, often with me holding
my breath that I am not arrested.

We find ourselves in a spectacular setting, where the ocean lies out for
miles beyond the farm fields. As I hold onto to his growing hands
tightly, for a brief moment I am reminded of the last vacation I took,
some twelve years ago, to Maui. I hold my breath and allow myself for
two seconds to live in the past. I feel better and we go along, singing
Old MacDonald. He is as beautiful as this place, full of life and a
smile that could get him elected to any office in the land. Deep breath,
hold back the tears, and keep singing.

So, we spend a little time feeding the cows and I struggle to get
language out of him. He is beginning to understand that animals are
real, not just on videos.

He tells me he wants water, so back to the car, where I give him his
cereal and water and buckle him in and try to locate a teacher or anyone
who can convey a message to the instructor about the need to toilet him
when he gets giddy. I cannot leave him alone, so I end up telling one of
their teenage volunteers. I gobble a sandwich and down it with a Diet
Coke and we head off to take a walk at the beach, about an hour’s
drive away.

The ocean mesmerizes him. He would swim to Hawaii, if I let go, so I no
longer take him in. I leave that adventure for the younger respite
workers. We look out over the Pacific Ocean at Lighthouse Point and he
just fixates on the surfers. I wonder out loud, “What are you
thinking, my son?” He says, “surfing.” Yes!!

He seems tired and doesn’t want to walk, but I know if I
don’t get him worn out, he will never go to bed on time, which is
10:30 p.m. I provide him with language and he chooses
“hungry.” So, we leave this peaceful place and head back
home. I scramble to get him his gluten-free lunch, but by this time, he
has come alive and is jumping on his indoor trampoline like a person on
speed. He refuses lunch, and I am wasted, so I ask him if he wants the
hot tub. He races out to it, just like he needed to jump into the
Pacific. The rush of water over his body gives him such sensory
satisfaction. I often wonder if children on the spectrum were meant to
be dolphins, communicating in noises and living peaceful lives in the
water that soothes them so.

I do the dishes, get things started for dinner and collapse.

I realize I have fallen asleep! It is only a moment, but I awaken in a
panic….is he OK? Has he had a seizure? I jump up, only to find he
is still leaping in and out of the hot tub, joyful and spirited as ever.

I feel chest pain, and sit down and collect myself for the next several
hours of bathing him, helping him to learn to wipe with a small towel,
teaching him how to put on deodorant, pull up a diaper, eat sitting at
the table, using a fork, putting his dishes in the sink, wiping after
using the toilet……the care is constant, teaching is for life.

I try to get a bite to eat, but he begins to cry. He wants something,
but I can’t tell what it is. I get out the pictures, but he still
can’t tell me.

I hold him and sing to him. He calms down a bit and lies on the couch. I
put in a video so I can get some nourishment, jumping up and down at
least five times, as he is still trying to tell me he is uncomfortable.

I hear a crash and run to the family room. He has taken his rice milk
and poured it all over the floor to get to the ice cubes in the glass. I
am livid and tired, and scream at him and feel guilty all over again for
not being in the room each minute.

Oh, how I want to read the newspaper and finish my dinner. But, I must
teach him to clean up his messes, so hand-over-hand, we wipe. He is not
happy about it, but knows Mom is mad.

I finally get my cold dinner back in the microwave and finish gobbling
whatever it was I was eating. Time to start making muffins for tomorrow.
I ask him to help me. He tries to use both hands, one to hold the bowl,
one to crack the egg, but cannot do it. So, I hold the bowl, and he
cracks the eggs. I beg him to label the items…oil, milk,
flour….he knows these words, so why won’t he use his
language today. It is slipping away again……the tide of
autism…in and out. So, we finish and he tries to stir, but loses
interest and just wants to eat the batter with his hands. It goes
everywhere. I wash him and the mess and put the muffins in.

I head up to the computer to check if a researcher has gotten back to
me, only to find he has opened the oven door. Thankfully, he feels the
heat and does not touch anything. He sometimes opens it and urinates
into it. I don’t know why….but it is getting to be less of
an occurrence, so I am pleased….you take progress when you can and
don’t always understand.

I finally sit down with him to try to get him to “talk”
about pictures in a magazine. He is bored and just wants his TV videos.
I am relentless and make him go through at least 20 pages before I will
cave in, although I just want to be alone.

I get upstairs, collapse and turn on the news. He wants
water….back downstairs to find he has stood up to pee and there is
urine all around the toilet. I get out the mop and clean and tell him
“SIT!”

I finally feel as though I can do no more today, and tell him it is time
to go upstairs. He is tired, but stubborn, so I have to use a firm
voice.

Tonight I need to cut his toenails. This could not have happened three
years ago. His teachers have “desensitized” him, and he
now allows me to cut his fingernails and toenails. I am eternally
grateful. No one can raise a severely impacted child without help from
qualified, dedicated souls like the ones at my child’s school,
The Morgan Autism Center, a non-public school, established before autism
even had a diagnosis. They are saints and all of them are my family.

The worst is yet to come: Brushing teeth. Oh, he is SO orally defensive.
He is bigger than me now, and bolts and laughs as he jumps on the bed
and rolls and bounces. I drag him back, lock the door and hold him
against the wall. He allows me to brush, but it is a long struggle.

Now, it is time to go put on a diaper and get into bed. He knows the
routine and complies. I turn on his nighttime videos and cover him and
go and brush my teeth and bring in water and supplies for the next day
and throw some more laundry in.

I give him his sleeping medication and he tells me, “Go
away.” I gladly do….need some adult time. So, I change his
diapers twice more and he finally drifts off and I look at him and think
to myself, as I have so many nights, “Does he dream? Can he talk
in his dreams? Does he understand other people in his dreams?”

In reality, they are my dreams for him. We must find a way to use stem
cell therapies, as they are the real hope for our children... I will
keep my advocacy efforts up until my last breath.

I am one of the “lucky” ones. My child is robust and
happy, although he does have his share of immunological issues and
severe food intolerances and gastrointestinal problems.

He can only talk in one and two word phrases for the most part, but half
of all children with autism NEVER utter a word, so I am lucky. I am also
among those fortunate to have savings enough to stay home with him. When
he is not with me I worry, knowing that he may not be able to express
his needs, or bolt into traffic, or be in pain and it will be
misinterpreted as “severe” behaviors. For mothers who
attempt to work outside of the home, it can be deadly.

His receptive language is extremely limited, so I must use my verbal
communication with him in very brief, repetitive statements, mostly
commands. I must sound like a very wicked mother at times to those
listening to me out in the public.

But, again, I am lucky he can understand some of what I attempt to
convey. I wish I had learned sign language when he was first diagnosed.
He seems to understand, but not very many people can sign to him in his
current classroom. Guilt is my middle name.

But I keep guilt and self-pity at bay with my stem cell advocacy work.
I am one of three mothers in the area battling for autism to be given a
higher priority in the stem cell research community. We will continue to
spend our every free moment attempting to get the attention of the
neuroscientists to listen to our reasons why stem cell therapy seems
plausible. We can’t take the standard line of “We
don’t know what causes autism,” any longer. (NOTE: anyone
who would like to cooperate with Nicki and her friends should write to
her at nickipeck@sbcglobal.net <mailto:nickipeck@sbcglobal.net> .

As I write this at 10:30 p.m. on a Saturday night, I think how much I
miss having something to look forward to. I am beginning to train yet
another person who will, hopefully, be able to learn to take my son out
so I can do what most parents do WITH their childrenâ€"Christmas
shopping, baking, gardening, cleaning and, if I am really lucky, riding
my bike a couple of miles. My son cannot ride a bike, even though he is
11 years old. It simply doesn’t interest him, just like all the
thousands of dollars worth of toys I have purchased, only to give away.

I look at this handsome little fellow and kiss him on the forehead as
he sleeps. I hope for a better tomorrow, even though I know it will most
likely be a repeat performance of today.

And then I think:

“Please, God, don’t let me die tonight.”

Don Reed
www.stemcellbattles.com <http://www.stemcellbattles.com/>

Don C. Reed is co-chair (with Karen Miner) of Californians for Cures,
and writes for their web blog, www.stemcellbattles.com
<http://www.stemcellbattles.com/> . Reed was citizen-sponsor for
California’s Roman Reed Spinal Cord Injury Research Act of 1999,
named after his paralyzed son; he worked as a grassroots advocate for
California’s Senator Deborah Ortiz’s three stem cell
regulatory laws, served as an executive board member for Proposition 71,
the California Stem Cells for Research and Cures Act, and is director of
policy outreach for Americans for Cures. The retired schoolteacher is
the author of five books and thirty magazine articles, and has received
the National Press Award.

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