Weiss / MD Educating Marston

A Mother and Son's Journey through Autism
1. Auflage 2020
ISBN: 978-1-7322584-5-7
Verlag: Changing Lives Press, LLC.
Format: EPUB
Kopierschutz: Adobe DRM (»Systemvoraussetzungen)

E-Book, Englisch, 144 Seiten

With Marston, I'd start every morning believing today was the day he was going to look into my eyes and really want me. He'd reach for me, smile for the first time. Walk. He'd say, 'Mama,' 'Daddy,' or even 'ball.' By 1998, when he turned three, I'd uttered that same old prayer a thousand times, and I was more determined than ever to shatter the glass wall that separated my son from the rest of the world. Autism wasn't widely talked about back then, and Facebook (networking) didn't exist. Eric and I were on our own. This memoir is our journey of educating Marston through programs like The Institutes for the Achievement of Human Potential, Vision Therapy, the Tomatis® Method, Marion Blank's approach to reading, hypotherapy, balloon dancing, and the list goes on...until we discovered stem cell replacement therapy

Autoren/Hrsg.

Weiss, Christine

Weiss, Eric

MD,

Leseproben

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,...