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Chapter 6: Having My Baby Pregnancy The day I found out I was pregnant, I was ecstatic. I vowed to avoid doing anything that could negatively affect the baby. I didn’t eat sushi or soft cheeses. I stopped dyeing my hair. (That was hard!) I stopped changing the litter box. (That was easy.) I watched my diet and exercised, at least when I wasn’t suffering from morning sickness. I stopped taking my psych meds. I believed I was doing the right thing. Unfortunately, during the pregnancy, my brand-new marriage started to falter, and without the barrier of meds, I had a lot of trouble staying emotionally stable. Then, at the beginning of the third trimester, my blood pressure skyrocketed because of all the stress I was experiencing, and I was forced to go on bed rest for a few weeks. By the end of the pregnancy, I was worried I had made a huge mistake. All of that faded the day Seth was born. As I held him, I gazed into his shiny, dark eyes, noting with amusement that the large divide below his bottom lip gave him more cleft than chin. I smelled the fragrance of his sweet head and gently caressed his silky soft skin, which was so tan I wondered how he’d gotten to the Caribbean without me. I nuzzled his cheek and whispered to him, “Today, you are perfect. You have never been hurt – physically or emotionally. I hope you will never have the kind of scars I do – and I am going to do everything in my power to help you avoid as many of them as possible. I love you with all my heart. If you need guidance, I will provide it. If someone is trying to hurt you, I will protect you. If you fall, I will catch you. Making sure you feel safe will always be my top priority.” Lessons Learned I desperately needed those kinds of assurances while I was growing up. However, over time, I realized Seth had different needs. He was secure in the knowledge he would always be loved and protected, but felt at odds with the world around him. He needed my help to successfully navigate unfamiliar and/or uncomfortable situations without causing undue trauma to his psyche. I learned it wasn’t enough to “be there” for him. I had to be there for him in the right way. But let’s not get ahead of ourselves. Labor I had intended to deliver Seth at a birthing center run by midwives – without medications or interventions of any kind – but in those last blindingly hot days before Seth’s birth, I was growing impatient. I tested several methods to jumpstart labor: raspberry leaf tea, eggplant parmigiana, nipple stimulation, long walks, even sex, but nothing changed. A week past Seth’s due date, I was desperate to move things along. One of the midwives suggested I try castor oil, a traditional method to induce labor. YUCK! Even mixed with orange juice, the taste was unpleasant (to say the least), but it definitely did the trick. The following morning, my water broke, and I started getting excited! Sadly, the examination at the birthing center revealed I was only one centimeter dilated, so I was sent home – with the understanding I would need to go to the hospital no later than 6:00 PM that evening, even if my contractions were still mild, because fetuses shouldn’t be without amniotic fluid for more than a few hours. I wasn’t happy about this news, but obviously, delivering Seth safely was the most important consideration. When I arrived at the hospital that evening, a nurse hooked me up to a fetal monitor, and a doctor came in to examine me. I was still only one centimeter dilated. Because my water had already broken, the doctor insisted on a Pitocin drip to induce labor. That’s when the strong contractions kicked in. Even though my birthing plan had already been compromised, I was emphatic about avoiding any further interventions. To handle the pain, I was using the Bradley method, which suggests that the laboring mother visualize gliding over ocean waves every time a contraction hits. I was doing my best, but after what felt like forever, and with no drugs to take the edge off, I was sobbing and vomiting. I was almost certain I was in transition (eight to nine centimeters dilated), but I had only progressed to two centimeters. Labor had stalled because Seth was sunny-side up (facing towards my stomach instead of towards my back). That was my first indication Seth was going to be strong-willed! The doctor decided to do a Caesarean. I really wasn’t happy about that, but I realized – under the circumstances – a C-section was the best choice. Once I received an epidural to numb my lower half, the orderlies whisked me off to the delivery room. As the excruciating pain left my body, I was filled with both relief and shame. I felt like I had already failed my son, and he wasn’t even born yet! However, once Seth was cleaned, swaddled in a blanket, and placed gently on my chest to nurse for the first time, the guilt faded away. Lessons Learned I was so desperate to not be pregnant anymore, I was willing to try anything. I should have been more patient. (Side note: castor oil is vile, and Pitocin contractions really  hurt, especially when your water has already broken!) Being forced to abandon my birthing plan was my first indication that, as a parent, it would be important to be flexible and always expect the unexpected... Image of Chapter1 and cover of Mending Together, Building Together

After Seth failed Latin, I was left with a conundrum. He still needed to finish high school, but by this point, Seth didn't want to give the public education system any more of his time or effort. He was set on taking the GED exam. The problem was, when he took a practice test several months earlier, his score was pretty low, which meant he would need to do a lot of studying in order to pass. I was more than a little concerned that if he took that route, he wouldn't see the process through. I was relieved when Seth’s school offered to enroll him in a summer course (Spanish 1), which was being offered online for two hours in the late afternoon, four days a week – for one month. At first, Seth balked. I told him I understood how he felt about school, but I also felt the need to remind him that his brain wouldn't be 100% mature until he was at least 25 (a fact I originally explained to him when he was nine). I suggested he think things through carefully and not act impulsively. I added, “Besides, taking this class would be the easiest way to get your diploma. Why put in extra work when you don't need to?” That logic made sense to Seth, so he agreed to go through with Spanish 1. I was very nervous on his first day, because I didn’t know if he would get along with his teacher; I didn’t want a repeat of the issues he had in Latin class. Fortunately, as it turns out, Seth’s teacher appreciates his intellect (as seen in the email exchange pictured here), and he is carrying a 98% in her class. See what a difference the right teacher-student relationship can make? Seth will receive his high school diploma in August 2024. Thank goodness! Email from Seth's teacher saying, "He's a thinker. The world needs minds like his."

Chapter 17: Discipline With the gift of hindsight, I have come to understand that discipline isn’t about showing kids who’s in control. The purpose is to help kids gain control over themselves, so that as they mature, they can recognize their own limits and set whatever boundaries they need to set. Don’t get me wrong, kids need to know no means no, but this can be accomplished without being punitive. Imagine this scenario. You’ve had an awful day at work. Your boss yelled at you. Your co-worker took credit for one of your ideas. Someone stole your clearly labeled lunch from the office fridge. At the end of the work day, you go down to the garage only to discover that somebody dented the driver’s side door and didn’t leave a note. Then, you sit in bumper-to-bumper traffic for hours. When you finally arrive home, you are fuming. You throw open the door, slam it behind you, hurl your bag or briefcase across the room and roar in pure frustration. Your spouse, partner, or roommate rushes in to scold you for your bad behavior and sends you to your room to think about what you’ve done. Ridiculous, right? And yet, that’s often the way we treat kids. Kids are human beings too, and like adults, they can have bad days. Punishing them for acting out only escalates the problem. At the risk of sounding too much like a parenting coach, (too late!) I would like to offer some advice. You can take it or leave it. When your child is having a tough time, try sitting down with them and gently ask what’s going on. Encourage them to talk about their day. Give them a chance to vent without fear of judgment. Validate their feelings, even if you don’t think what they’re going through warrants being upset. We have to remember that as adults, we have the gift of perspective because we have already experienced so much. Kids are going through the difficulties of life for the first time, and they will need time to acclimate and find their own way through. Having patience during this process is worth its weight in gold. If children are unable or unwilling to communicate, try sitting with them quietly with empathy. Provide a safe space. Help them get grounded, (and I don’t mean GROUND them. That would defeat the entire purpose of this method)! There are tons of free videos on YouTube offering a variety of breathing techniques , soothing meditations , and progressive muscle relaxation (or PMR) exercises which can help your child cool down. (PMR involves tensing and releasing muscles one by one and can be very effective when a child is too riled up to do deep breathing or meditation.) These exercises might even stop you from throttling your child (or your roommate or spouse) when YOU are the one having a bad day…

I recently learned that until just a few years ago, the Māori [1] language of New Zealand didn’t have a word for autism. According to the BBC , back in 2017, civil servant Keri Opai took it upon himself to coin the term, ‘Takiwātanga’, which he derived from the phrase: “tōku/tōna anō takiwā” – ‘his or her own time and space.’” The Māori word for autism is Takiwātanga’, which means, “In his own time and space.” Seth at age 5. What a beautiful – and accurate – way to describe people on the spectrum! When I read that, I thought back to when Seth was a baby. Like most parents, I watched with delight as he hit each developmental milestone – holding his head up, turning over, sitting, crawling, walking, talking. He seemed to be right on target. He took his first steps shortly before he turned one, and not long thereafter, he said his first word, “light.” (Well, more like “ight,” but he was looking up at the light.)   However, by the time he was two, I noticed Seth was lagging behind other kids his age when it came to speech and socialization. He was still mostly babbling words I couldn’t understand, and he rarely wanted to interact with his peers – even going so far as to move away when other kids approached him.  My concern grew as an increasing number of people tried to tell me not to worry – he would be fine. I didn’t feel comforted by those assurances. By the time he was nearly four and still not potty trained, one of my former co-workers quipped, “Don’t worry. He’ll be out of diapers by the time he goes to college.” I wasn’t amused.   I was  worried. I compared Seth to his cousin, Eric, (who is around the same age), and he seemed to be a normally developing kid, while Seth was becoming more aggressive and pulling further into himself. I didn’t know what was going on or how to help him. He was having so much trouble in school. He was irritable most of the time. In public, he was able to hide his frustrations, but he didn’t want to (in his words) “pretend to be okay” at home, so I bore the brunt of his near-constant annoyance, (which was especially tough to deal with on top of my own mental health/neurodivergence issues). He occasionally made a friend, but those relationships didn’t last long. He was just “different” from other kids. (As a reminder, Seth wasn’t diagnosed with autism until he was 16, so before that, I was just making things up as I went along. By this point, I was at a complete loss.)   I wish I could go back in history and reassure “past me” that Seth really would  be fine. I just needed to be patient and release any expectations I had about his development. He did eventually hit all his milestones – sometimes a little later than his peers – but he always got there. At 20, Seth has a small group of friends he hangs out with, a sweet girlfriend he has been seeing since Valentine’s Day 2024, and he handles his occasional irritability on his own without taking it out on others.   That said, I have been mildly concerned lately because Seth is in limbo. After finishing high school in August, he needed to take a break, but nearly five months later, he doesn’t have a job, nor has he entered college yet (though he is taking a class starting next month). Both he and I have been feeling a lot of pressure from people who think Seth is just being lazy, but I know in my heart of hearts that isn’t the case. Despite what anyone believes, Seth is internally motivated to move forward, but he has to figure out where he belongs in the world first, and he can only do that in – you guessed it – his own time and space. So, once again, I must be patient and trust that when he is ready, Seth will hit his next milestone – adulthood. Gulp. [1]  Māori is the language of the indigenous Polynesian people of New Zealand.

This is a question that has been on the minds of concerned parents and the medical community for a very long time. Some insist ASD is purely genetic. There is definitely a history of autism in my family. My nephew was diagnosed when he was three. By today’s standards, he would be considered Level 2-3. (There are also suspicions that my mother, my sister and I are also on the spectrum, but none of us have been “officially” diagnosed.) Others blame external factors – like vaccines (though this theory has been debunked ), or the use of acetaminophen (Tylenol) during pregnancy. (Also debunked .) The National Institute for Environmental Health Sciences (NIEHS) posits that environmental risk factors may play a role – factors such as: • Advanced parental age at time of conception • Prenatal exposure to air pollution or certain pesticides • Maternal obesity, diabetes, or immune system disorders • Extreme prematurity or very low birth weight • Any birth difficulty leading to periods of oxygen deprivation to the baby’s brain But the NIEHS points out that “these factors alone are unlikely to cause autism. Rather, they appear to increase a child’s risk for developing autism when combined with genetic factors.” In 2013, The National Institutes of Health reported a possible correlation between infant formula and ASD. Upon learning this, my stomach dropped. The report hit too close to home. Seth was born at 3:00 in the morning at the end of July, 2004, via cesarean section, and for most of that hot summer day, he was awake, alert and curious. A newborn’s eyes don’t focus very well, but Seth didn’t let that stop him from looking at everything and everyone. He seemed content and fussed very little. That evening, one of the nurses asked if he’d had a wet diaper yet. I knew he’d passed meconium (baby’s first poop) early in the morning, but since I was exhausted and in pain after going through 24 hours of labor and an emergency C-section, friends and family had been taking care of diaper duty, and they didn’t give me a report. Unfortunately, I didn’t think to mention that and just said I wasn’t sure. She sternly responded that he had jaundice, which is caused by breastfeeding. (It isn’t.) And that he was dehydrated. (He wasn’t.) She told me that unless Seth produced a soaking wet diaper in the next half hour, I would have no choice but to supplement with formula. I had planned to breastfeed exclusively and use artificial nipples sparingly, so I protested. She summoned the on-call pediatrician. When he arrived, he warned me that unless I followed their orders, he would put Seth in the NICU and report me to Child Protective Services. Having been bullied for most of my life, I froze, but then caved in to the pressure. Shortly after Seth drank some of the formula, he started shrieking and spitting up. I was alarmed. The pediatrician suggested we switch to soy. Same reaction. Then he recommended a more expensive “hypoallergenic” formula for babies with sensitive stomachs. No difference. Seth screeched every time I fed him. His overall temperament changed drastically. He became reactive and difficult to soothe, and he stayed that way for a long time – and not just while he was being fed. Three photos of Seth. The first two were taken before he was given formula, and the third was taken after. The change in temperament is very clear. I always wondered if Seth’s violent reaction to the formula had anything to do with him developing autism. The NIH proves that I’m not COMPLETELY crazy to consider that possibility. Only a bit around the edges. All kidding aside, the jury is still out on exactly what causes autism, but I think it’s safe to say that both genetic and environmental factors play a role. According to the NIEHS, “A growing area of research focuses on interaction of genetic and environmental factors.” In my completely non-professional opinion, that makes the most sense. Ultimately, though, what is most important is loving and supporting your child just the way they are. I love the way Seth thinks. I have learned more about the human condition from Seth in all his “Seth-ness” than from anyone else I have ever known, and I wouldn’t change a thing, even if I could.

According to “The Ableist History of the Puzzle Piece Symbol for Autism,” an article from the website, In the Loop about Neurodiversity, “the puzzle piece is the most commonly recognized symbol for autism awareness.” [1]   Autism Speaks, the most recognized autism educational organization, even uses this symbol as their logo. However, because of the symbol’s origins, the puzzle piece is controversial in the autism community. (Photo of multiple puzzle pieces) What are its origins? In the early 1960s, Gerald Gasson, a board member of the United Kingdom-based National Autistic Society, created the image to suggest that “autistic people suffered from a ‘puzzling’ condition…”  Mr. Gasson and the other board members decided to adopt “a logo of a puzzle piece with a weeping child, displaying the notion that autism is a tragedy that children suffer from.”  As a result of this view of autism, many people were forced into unwanted treatments and made to feel like they were broken and needed to be fixed.   I can certainly understand why this notion is upsetting. Autism spectrum disorder (ASD) isn’t a tragedy, and people with autism aren’t broken. Autistic brains work differently than neurotypical brains. That’s it. Pure and simple.   Personally, I like the idea of using a puzzle piece to represent autism, but I don’t see its symbolism the way it was originally intended.   When Seth was young, I was, admittedly, very confused by his behavior. I had no idea why he was responding to the world the way he was. I had to do a lot of detective work to figure out what was going on and how to help him. In a way, I was solving a puzzle – but not to “cure” him of autism. Seth wasn’t even officially diagnosed with ASD until he was 16. What I was doing was collecting pieces of information and watching for patterns – to give me a clearer picture of what he was trying to communicate – and what he needed from me to feel more comfortable in a world that wasn’t built for kids like him – or me.   I was recently “soft” diagnosed with autism myself, and over the course of writing my book, Mending Together, Building Together , a lot of my own missing puzzle pieces started appearing. Those pieces continue to come together, and I am getting a better picture of what I have gone through and continue to deal with. Some of the pieces are worn and others don’t fit smoothly, but I do my best to make it work. Nobody’s perfect.   In a way, we are all trying to solve our own puzzles – all of us – not just people with autism or those with a trauma history. Each of us is a hodgepodge of experiences and characteristics that somehow come together to create the unique masterpieces that are human beings. Perhaps if we can look at ourselves and each other that way, we will see that nobody is broken. We are all just put together differently.   What do you think about the puzzle piece symbol? Drop a comment and share your thoughts. [1]  Cassandra Crosman, The Ableist History of the Puzzle Piece Symbol for Autism, March 20, 2019; “ https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/” (accessed December 10, 2024)