The information provided in this book is designed to provide helpful information on the subjects discussed. This book is not meant to be used, nor should it be used, to diagnose or treat any medical condition. For the diagnosis or treatment of any medical problem, consult your own physician or practitioner. The publisher and author are not responsible for any specific health or allergy needs that may require medical attention or supervision and are not liable for any damages or negative consequences from any treatment, action, application, or preparation given to any person reading or following the information in this book. References are provided for informational purposes only and do not constitute endorsement of any websites or other sources. Readers should be aware that the websites listed in this book may change.

Published by

Changing Lives Press

P.O. Box 140189 • Howard Beach, NY 11414

www.changinglivespress.org

Copyright © 2020 by Changing Lives Press. All rights reserved.

All rights reserved. No part of this publication may be reproduced, distributed, displayed, performed, scanned, uploaded, stored in a retrieval system, or transmitted or otherwise used in any way, in any form or by any means, electronic, mechanical, photocopying, photo editing, recording, or otherwise, without the prior written permission of the Publisher, Changing Lives Press, in each instance.

ISBN: 978-099862314-6

eISBN: 978-173225845-7

Cover Design: Claire Moore

Interior Design: Lauren Michelle

Cover Photo: LizPiercePhotography.com

For Dawne: Thank you to my best friend for truth, guidance, and unwavering love. I love you.

For William: Thank you for becoming part of our family. You’ve always treated Marston like a brother. I love you.

For Austin: Thank you for your love, understanding, sacrifice, and compassion. You are a remarkable and beautiful man. I love you more.

For Eric: Thank you for your love and understanding, and the dedication to research and validating all the therapies I’ve found throughout the years. You are the rock of our family. I love you forever.

•°•°•°•

A special thanks to all the teachers, therapists, and caregivers who worked tirelessly to make Marston who he is today.

Especially thank you to Karin Hunt, for taking Marston into your classroom and home, treating him like your own, and for doing “whatever it takes.” You are an amazing teacher, person, and mother.

A NOTE TO THE READERS

I believe I’m here to help others as I have been both helped and blessed spiritually along the way. It’s taken me twenty years to gather the information in this book—a roadmap of a mother and son’s journey with autism. I have been shown the way, and my gift back to the world is to serve as a guide for anyone I can.

—Christine Weiss

EDUCATING MARSTON

CHRISTINE WEISS

Contents

A Note to the Readers

Introduction

Autism Stats

1. Life in Fifth Gear

2. No One Left Behind

3. The Wonder Years

4. You Can Do It

5. This Is Bad

6. This Program Is No Joke

7. Socialization Does Matter

8. Stronger Together

9. “This Is Just Life….”

10. The Power of Words

11. You’ve Got to Have Faith

12. What Comes After “Hi”?

13. I Wish the Whole World Was Like This

14. The Science Behind Stem Cells

15. Stem Cell Therapy Options for Marston

16. Marston’s First Transfusion

17. More Evidence on the Potential of Stem Cells

18. Stemell

19. Starting Our Own Clinic

20. Twenty-Four Years Later

Recommended Articles on Autism and Stem Cells

References & Resources

INTRODUCTION

As a mom of a child with special needs, I’m drawn to stories like Mask and What’s Eating Gilbert Grape. I recently saw the movie Wonder. I “get” these stories. But, unlike with my situation, with the boy in Wonder, there was protocol. That child had a physical deformity. My husband, Eric, is a plastic surgeon who works on cases like that. “We’re going to do A, B, C….” Eric maps out a plan to right the wrong nature (or an accident) has done, like in the story Wonder. Even when there are no medical procedures available to help someone with a physical deformity, it’s still apparent that this person is different, and—this is significant—it’s generally apparent as to why.

My son, Marston, is beautiful. He’s a handsome young man by anybody’s standards. He looks normal. Then, you talk to Marston, and you realize that, while he’s not exactly “abnormal,” he’s not exactly normal. He speaks differently than the average person and has unusual quirks, too. And, even though you can’t put a label on what’s amiss, you know something doesn’t feel right. There’s an imaginary wall, a clear piece of glass, separating Marston from normal.

It’s hard being a parent to a child with autism—but not because I don’t love my child. He is my heart. It’s isolating and confusing and heartbreaking to look at your perfect child with everything in the right place, except that it’s not.

I’m a spiritual person. I believe God has molded me into the person I am today through my child. I smile easily. I look on the bright side because that’s who I am. When people meet me, learn our story, and see my light and positivity, they ask, “Would you change your son if you could?” (My disposition, once again, has been mistaken for complacency.) To them, I respond, “Absolutely! If your child had cancer, would you change it if you could?” There’s not a rational parent on the planet that wouldn’t seek treatment for a child with a disorder or disease if treatment or a cure were available.

But I was chosen for this battle—and make no mistake, it is a battle. It’s my life’s purpose. My efforts and faith have given me strength to accept the situation, not back down from it. That will never happen. I would give my blood and my breath for Marston to experience life as a normal kid.

Marston was born before Google and Facebook were invented. But, forget about technology for a second. Cancer, from the Greek word karkinos, was discovered around 1600 BC, over 3,500 years ago. The first case of autism was documented less than one hundred years ago. This is how little we know.

You can’t google “cures for autism.” Well, that’s not true; you can google anything, and I’ve plugged “autism” into the search bar about a million times, give or take, since the explosion of the World Wide Web. Except it doesn’t lead me to the answers I’m seeking. There are plenty of hits on different therapies, but no cure. The symbol for autism is a puzzle piece. Each autistic person’s experience with the disorder is individual, unique as a snowflake.

“Do you have friends with normal kids?” That’s another question I get a lot.

Before Marston was born, I didn’t know anyone who had a child with autism. Looking back, I see that my life as a wife and new mom wasn’t just normal but easy, at least by comparison. I was married to a wonderful man. We had a wonderful child, Austin, our first son. He was the healthy baby every parent dreams about. I didn’t think too much about it then, about my easy life. But, to answer the question: Yes, I have close friends who have so-called normal kids, and they love and support Marston and me daily. However, my fellow warrior moms are in a different category; they understand and live the battle. It is these moms I call when I’m down. I would take these women to war with me.

When you have a child with a diagnosis of autism—or anywhere on the autism spectrum disorder—you learn fast who your real friends are. You learn some other things, too: Your child will be growing up without friends. He won’t be invited to any parties or playdates. No one will be coming to his birthday parties. Many of your friends with the so-called normal kids will go away because it’s just too hard to be around people that are different. It’s too much work.

I imagine regular parents of regular kids have found the idea of hanging out with Marston uncomfortable, and so they’ve avoided it. Why should their beautiful, perfect child be put in an awkward situation, even if it’s for just a couple hours at a little boy’s birthday party? What did their healthy child do wrong to be punished in that way? Nothing. We all look at life through our own lenses. There’s no blame here. This reality is no one’s fault.

When I was in my twenties, I had the white-picket-fence kind of life many women dream about. Not anymore. Life is still beautiful, however messy, but nothing’s perfect, and the majority of my friends are warriors. They’re raising children who are unique and special. My friends fight every day for their children, and they fight for mine, too. They sleep with swords, and they rise at dawn with their armor on. They do this without complaint. I thank God for these friends every day.

When I leave this earth, I want to know I’ve done everything I can to create awareness for autism and to find a cure. I want moms who have kids on the autism spectrum to hand this book to their mothers, sisters, neighbors, friends, and I want them to say, “Read this and you’ll understand.” Eric said he’ll practice medicine until he’s eighty if he has to. It takes money, after all, to fight this battle…a lot of money!

For twenty-three years, there’s been a piece of glass separating Marston from the rest of the world. My promise to my son and to every child like him is that I won’t stop fighting until I’ve shattered it.

AUTISM STATS

Autism used to affect 1/10,000 babies through the seventies. By the nineties, that statistic was 1/1,000. It’s diagnosed four times as often in males. (While rarer in girls, they seem to be affected more severely, exhibiting extreme symptoms.) As of this writing, 1/59 births in the US result in an ASD [Autism Spectrum Disorder] diagnosis.

PART I

A Mother and Son’s Journey

1. LIFE IN FIFTH GEAR

“What really matters in life, is what we do with what we know.”

—Oprah

I WAS BARRELING DOWN I-95 in the breakdown lane, hoping a cop would pull me over. Five weeks before my due date, I’d gone into labor. Eric was in surgery, a long and difficult case. He wasn’t going to be available for hours. We hadn’t even lived in Florida for a year, meaning I didn’t know who to call when I couldn’t reach my husband. So, there I was, driving myself to Baptist Hospital in downtown Jacksonville, scared, crying, praying—about as panicked as a person could be.

Let me back up for a minute….

Upon receiving his undergraduate degree in chemistry, Eric was awarded a United States Health Professional Scholarship, which paid for Duke University Medical School. After Duke, there were five years of general surgery residency at University of California, San Francisco. Two years of plastic surgery training at the University of Miami followed that. Then, the Navy owned him. We wanted to move somewhere that felt more permanent for raising a family, so Eric put in a request for Navy Hospital, Jacksonville, and it was accepted. The catch was we had to move right away. In the summer of ’94, we found a cute, little house and, a month later, moved to Ponte Vedra Beach, a small town between Jacksonville and St. Augustine. We soon found out I was expecting our second child.

Austin was five. I enrolled him in a kindergarten class at Ponte Vedra Elementary. I remember meeting his first teacher, Miss Baxter. She noticed that Austin seemed extra bright for a kid his age. They’d later have him tested and inform us that he would benefit from being in a classroom setting designed for gifted students. I remember thinking how awesome it was that my child got his daddy’s big brain.

I wanted to do all things new moms do to ensure their child would be loved, protected, and have the best upbringing possible, so I became a room mom. Watching Miss Baxter in action with young kids every day was nothing short of inspiring. Even though she was the first teacher I’d ever been around as a parent, I knew she was top notch.

And life went on without any speed bumps until March 17, 1995, St. Patrick’s Day.

It was a Friday. I dropped Austin off at school but didn’t go in to be the room mom, as I had a routine OB appointment scheduled.

It was supposed to be a regular checkup. When I got there, the doctor asked the typical “how are you feeling today?” question. I had noticed that it felt as if I couldn’t control my bladder that morning, like I was leaking urine a little bit or something. With Austin, the pregnancy had been wonderfully uneventful. I gained the right amount of weight and experienced all the other things that happen to a woman when she’s pregnant—the first-trimester fatigue, moodiness, a bit of morning sickness, heartburn in the last trimester. It all went down just as the books said it would. I carried him to term, too.

The doctor gave me an examination and said my membranes had ruptured prematurely. I needed to get to the hospital immediately, as I was about to have the baby. It was five weeks shy of my due date. To say I became panicked is an understatement. My doctor then took a sonogram and assured me that Marston was approximately six pounds and six ounces, and that his lungs were fully developed. There were no reassuring words beyond that—just a “get to the hospital as quickly as possible” directive.

As the wife of a surgeon, I often couldn’t get in touch with Eric, and I rarely knew the exact time he’d be coming home. That was standard. I think it was probably everything that day, though, that had me so on edge. The “you’re in labor” diagnosis, combined with living in a new place and Eric being unreachable—it was a lot for this young mom.

So, there I was, cruising in the breakdown lane on I-95. People must have thought I was nuts. I don’t remember much about the drive there; adrenaline does that. I remember repeating “God, I hope they know I’m coming” over and over again for some reason.

Nurses and medics were waiting for me with a wheelchair at the ready.

“Hop in, Mrs. Weiss. We’re taking you upstairs to the maternity ward.”

I puked on the way up, several times.

The nurse checked my cervix and started Pitocin.

Still no Eric.

That’s when I remembered Austin was still at school—oh, my goodness. This was before cellphones were common. But, thankfully, I had all the important phone numbers in my life memorized. I was supposed to be at school, lined up with the other moms in the circular drive pickup point, with a number and photo of Austin on the dash that corresponded to the “Austin” waiting on the curb. Even though there were about fourteen kids to a class and everyone knew everyone, Ponte Vedra Elementary had all their procedures down to a science. Despite the madness, I retrieved the number from memory and called. Miss Baxter told me not worry, that she would take Austin to her house. She would end up keeping him for the next three days. She became the first warrior in our lives. She was an angel, our angel, and we’re friends to this day. Years later, she married a wonderful man, Gene Weiss (no relation), becoming a Mrs. Weiss herself.

And then, Eric arrived. He basically slid into home as I crowned and gave birth.

Marston’s APGAR score was great. For anyone that doesn’t know (or can’t remember), the APGAR test happens one minute after birth, and then again five minutes after that. It stands for appearance, pulse, grimace, activity, and respiration. Marston weighed in at over six pounds and was 19.5 inches long, with a proportional and normal head circumference.

He had aspirated a small amount of amniotic fluid on the way out, which is sterile and not as worrisome as when babies aspirate meconium. The neonatologists reported Marston had mild sterile pneumonitis and put him on oxygen via nasal cannula, as he was having minor difficulty breathing.

He was slightly jaundiced, which was typical and manageable. At no point was Marston on a ventilator, but they kept him for four weeks. Aspirating amniotic fluid can affect the alveoli (microscopic air sacs where oxygen enters the blood) of the lungs, burning the delicate lining and making oxygen transfer more difficult, which is why he received oxygen via nasal cannula until May 25, one month after we took him home. Now, knowing all its benefits and connection to blood flow to the brain, we should have kept him on oxygen for a year. Who really knows; for every therapy, there are potential risks. But, like I mentioned, this was before cellphones and the explosion of the internet—before knowledge was an enter key away.

For the next month, I’d visit my baby during visiting hours. I wasn’t allowed to breastfeed him, like I’d planned, like I had with Austin. I don’t why. The nursing staff mentioned something about Marston expending too much energy. I guess he did not have enough stamina to suckle and breathe. To this day, I have anxiety about depriving him of the nutrients and healing potential of breast milk. The nurses did not encourage pumping, and, as a young mother, I did not question their authority.

Binding my breasts with compression wrap was awful. I was glad my sister, Margaret, was a delivery room nurse. She helped me considerably. Binding them didn’t stop the leaking. And the process was painful to both my body and soul. I was a crazy hormonal mess, a wreck. I just wasn’t getting to bond with my baby. I couldn’t get close enough to Marston; it was the worst feeling in the world. And, I was never allowed to stay for as long as I would have preferred. It felt like a punishment. Visiting hours were limiting enough, but every time there was a blood draw, every time they fed Marston, every time the pediatric team was at his bedside, and during every nursing shift change, I was asked to leave. The nurturing was shattered.

Eric, being a doctor, wanted to know everything, as he understood doctor speak. He’d walk into the neonatal ICU (NICU), say hello, and pick up the chart. He’d go there at all hours of the day and night, as he wasn’t generally available during business hours. He often came with specific questions concerning protocol. It was his son. His input and involvement were not well received. We all had the same goal. I never understood why the situation was always so tense. At one point, they stopped allowing him to look over Marston’s medical chart.

One day, I went to the maternity ward, washed my hands, put on a sterile gown, smiled at the nurses on duty and the other mom preparing to visit her baby, and went into the NICU. Marston was gone from his crib, and his name had been erased from the baby board. I lost my breath and started to faint—went to my knees and actually blacked out. As I came to and fought back tears, a nurse came over. She told me he’d been moved to the NICU step-down unit. Could someone have called? I truly thought he had died!

Even through the tears, the fluctuations in my hormones, the constant feeling of life being out of control, the driving back and forth to and from the hospital (three, four times a day) just to see my newborn, I’d tell myself, “It’s not about you. It’s about Marston.” I made this my mantra. “It’s not about you.”

I made tapes of the family talking or singing or reading a book to Marston. My voice, Eric’s, Austin’s, his grandmother’s, his aunties’—we were all represented. Because he wasn’t confined to an incubator, I could put the tape recorder in his crib. It was spacious enough, and I wanted him to have the comfort of his family’s voices in that foreign environment. I even made a tape of my heartbeat. Newborns crave their mothers’ touch, heartbeat, scent, and voice. It’s all part of the bonding process. I asked the nurses to please, please play it when I wasn’t around. I don’t know if they ever did, but it was never on when I arrived.

When I think about this time in our lives, I still get a stomach ache. I’m right back there….

On my birthday, April 9, 1995, Marston received a hepatitis B vaccination while in the hospital. In Marston’s case, since he was premature, this vaccine was given prior to his April 20 due date. He was still so immature. There was no signing of waivers, like nowadays. Even so, many moms are delirious enough after giving birth that they’re not fully aware of what they’re signing, anyway.

Eric and I believe this vaccination played a major role in Marston becoming autistic. In my gut, I know it’s the reason. He was born under stressful circumstances but in good shape. He passed all the tests. He was never in an incubator, never intubated, never on a respirator. He only suffered from a mild, common issue and received the minimum amount of oxygen for it. He was thriving prior to this vaccination. It was plain to see he took a hit. Right after the vaccination, his oxygen requirements increased, his respiratory rate increased, he was given antibiotics, and we were all concerned he was becoming septic. His septic work-up turned up negative, meaning it was something else besides infection that was causing his body to suddenly react, to go into defense mode. He had a virus injected into his immature and already-stressed system and had a bad reaction to it; he was my baby and I could feel it. I watched the light leave his eyes. There was a Marston before the vaccination and a Marston after, one that was less alert.

I’m 100 percent for vaccinations—that is “safe vaccines.” Eric and I both are. But I feel these vaccines need to be monovalent, in a single dose vial, and without preservatives. A monovalent vaccine immunizes against one particular strain of microorganism (or disease). This isn’t even always an option. Medical research journalist Neil Z. Miller writes this in his 2016 article “Combining Childhood Vaccines at One Visit Is Not Safe” in the Journal of American Physicians and Surgeons:

This CDC report also noted that “exposures to mixed stressors can produce health consequences that are additive, synergistic, antagonistic, or can potentiate the response expected from individual component exposures.”¹² Thus, CDC is well aware that mixing several pharmaceutical products increases the likelihood of synergistic toxicity and unexpected adverse reactions. Nonetheless, CDC urges infants to receive multiple vaccines concurrently without scientific evidence to confirm the safety of this practice. Administering six, seven, or eight vaccine doses to an infant during a single physician visit is certainly more convenient for parents, as opposed to making additional trips to the doctor’s office, and increases the likelihood that the infant will receive all the vaccines, but vaccine safety must remain the highest priority.

Single dose vials are less likely to cause side effects or “synergistic toxicity” than multi-dose vials. Multi-dose vaccines require preservatives; monovalent vaccines do not require preservatives (such as the long-popular thimerosal, which contains mercury). Additionally, “Single-dose vaccine formats can prevent clinic-level vaccine wastage but may incur higher production, medical waste disposal, and storage costs than multi-dose formats.” If vaccines were to be administered in single doses, the schedule would need to be customized and individualized for each child. This is what I’d like to see happen, because not every child is the same at three months, six months, nine months, etc. Treat the whole child. Hepatitis B is a sexually transmitted virus (or is transmitted by way of shared needles). There’s no logical reason for an infant to be vaccinated against this, especially one so young. Marston had not even reached his calculated birth date. They wouldn’t let me breastfeed him for fear it would cause too much stress on his system. Could we have waited until he was ten, or when he reached sexual maturity? His brain and immune system would have been developed. This only seems logical in the specific case of hep B. In Miller’s article, he notes, when downloading and studying VAERS (Vaccine Adverse Event Reporting System) reports from 1990–2010, there’s a trend (an increase) in the number of vaccinations administered to an infant and their likelihood of having an adverse reaction with one exception: hep B. One dose of the hep B antigen created a disproportionately high percentage of infants in need of hospitalization due to adverse reaction compared to one dose of the other vaccinations in the report, making hep B an outlier in their study. (For the full article, the link is in Resources under Chapter 1 in the back of the book.) For full article links and other general information, refer to the references and resources section in the back of the book.

In the 1970s, the recommended vaccination list included vaccines for seven viruses/diseases that were combined for a total of three vaccinations:

The first hepatitis B vaccine became legal/licensed by the FDA in America in November 1981. By 1989, there were two hep B vaccines approved in the US. But, in 1990, CDC officials expressed concern that targeting high-risk individuals was an ineffective strategy to increase vaccination use and lower the incidence of hep B. So, by 1991, a universal hepatitis B vaccination was recommended for all US infants.

By the time Marston was born, in 1995, it was required in Florida. In 2002, it became mandatory that all mothers be tested for the virus as part of the prenatal exams. I was not tested for hepatitis B during either pregnancy (1989, 1995). Had I been, there would have been no reason to vaccinate my children, as I was neither a carrier nor at risk to become one. And, my baby was not sharing a needle or having sex, which sounds ridiculous even as I write it. But those are the only risk factors for developing hepatitis B.

There are thousands of arguments and articles written that fall on both sides of the hepatitis B-autism association with male neonates. But, in a cross-sectional study using weighted probability obtained from National Health Interview Survey 1997–2002 data sets, it was…

…concluded that parental report of autism diagnosis was determined to be three times higher than in full-term babies that weren’t vaccinated for at least thirty days after birth. Vaccination status was determined from the vaccination record. Logistic regression was used to estimate the odds for autism diagnosis associated with neonatal hepatitis B vaccination among boys age 3–17 years, born before 1999, adjusted for race, maternal education, and two-parent household.

If we look at the history of vaccines in America, we can see how the vaccination schedule for our children has evolved.

In the early 1950s, four vaccines were available: diphtheria, tetanus, pertussis, and smallpox. Because three of these vaccines were combined into a single shot (DTP), children received five shots by the time they were two years old and not more than one shot at a single visit.

Nowadays, it’s over triple that with multiple shots often administered per visit. Remember when the neighbor boy got the chickenpox and your mom said, “Get over there and hug Joey so we can get this over with.” It’s decades later; we’re supposed to be more educated. What are we doing to our children’s immune systems? We are weakening them.

Even now, with vaccinations in excess—a multi-billion-dollar industry—doctors still ask if you’re feeling well prior to administering one, like the annual flu shot—which, by the way, isn’t a vaccine against the winter flu virus. That virus hasn’t yet hit; therefore, no one knows what its molecular composition will look like to create a vaccine to stop it. It’s a gamble.

Sick babies and adults alike shouldn’t have their bodies further burdened, as their systems are working overtime to heal something already. Marston’s lungs were on the mend from sterile pneumonitis. He was a premature baby, a neonate. He was on oxygen. His system had enough to focus on.

You should have seen the palms of his hands and the bottoms of his feet—they were black and blue, covered in pinpricks from checking his oxygen, glucose, and hemoglobin daily. There was no speck of skin that hadn’t been pricked by a needle since the day he was born. Marston had all he could manage before the vaccination. They had to resort to placing a heparin lock catheter in his scalp for blood draws, as his hands and feet were too beaten up from all the needles. They attempted to cover this intrusion with a small, knitted, baby blue hat.