Squats & Séances

Starboys Story: How My Autistic Son Became My Greatest Teacher

• Venessa Krentz • Season 1 • Episode 5

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Against all odds, I found myself pregnant at 39. What unfolded next wasn't the typical story of motherhood I'd imagined, but rather an extraordinary journey into the depths of neurodivergence, intuition, and spiritual connection that would transform me forever.

My son's early struggles—from feeding difficulties to recurrent illnesses and hearing loss—were just the beginning. When he received an autism diagnosis at age two, I was plunged into a grief process that forced me to confront my own shadows and unspoken expectations. The dissonance wasn't his—he was perfectly content before and after the diagnosis—it was mine to resolve. This realization became the catalyst for profound personal growth and a radical shift in how I approached parenting.

This episode isn't just about autism—it's about the transformative power of acceptance, the unexplored frontiers of consciousness, and how our children become our greatest teachers when we're willing to learn. If you're navigating your own unexpected journey or seeking to understand the extraordinary gifts that come with neurodivergence, this story will resonate deeply with the possibility that lies beyond our conventional understanding of connection.

https://publications.ici.umn.edu/impact/19-3/ten-things-every-child-with-autism-wishes-you-knew

https://www.autismspeaks.org/?form=donate&utm_medium=paidsearch&utm_source=google&utm_campaign=IS-branded-conv&utm_content=IS-evergreen&gad_source=1&gad_campaignid=18825549490&gbraid=0AAAAADwTDM8l-CCP2xYe48_td0goegIwq&gclid=CjwKCAjw1ozEBhAdEiwAn9qbzfPua8fzJBtt3BNZzowJJqicNxU9WIxY4jLStouAvQX0-L7SHWJDIxoCSo4QAvD_BwE

https://podcasts.apple.com/us/podcast/the-telepathy-tapes/id1766382649?i=1000668870828

https://drdianehennacy.com/

Southern Oregon psychiatrist’s research into autism and telepathy sparks debate over communication - OPB

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Speaker 1:

Hi, hi, welcome to episode five of Squats and Seances. My youngest and last baby is turning three next week and his story is quite remarkable, so I wanted to use this opportunity to share it with all of you. I will set the stage appropriately. It's the first week of the year 2022, january Cold, wet, dark. I'm a summer lover and a sun worshiper by default. Being wet and cold are two of my least favorite experiences. It's late and I'm headed to bed. I've been extra tired the last few days and grumpy AF. Against the advice of my inner guides, I decide to take a pregnancy test before crawling under the covers.

Speaker 1:

My partner and I had been trying to conceive for two years. Two years of failed fertility treatments and crushing disappointment had accumulated in a pile of debt and a resignation that a baby was not in the cards for us. We had just grieved and buried the idea of being parents together on an anti-baby moon to Hawaii the October pass. The decision had been made to stop trying, pick up the pieces and move forward. I did the deed and read the results. Eh, negative again, of course. Now even grumpier before, I tossed the test into the trash and I went to bed the next morning bleary-eyed and sleepy on the toilet. I glanced at my discarded test. What the hell? There were clearly two lines where last night there had only been one. I instantly figured that was a manufacturer flaw, you know. That's why it says not to read the test results after a certain time window has passed. But still, maybe I'd just take one more, just to be sure. Five tests later, there was enough proof to call my doctor and schedule a follow-up appointment. Against all odds, I was finally pregnant, pregnant at 39, the time when most women are gearing up to start their perimenopause journey. Instead, nine months later, I gave birth to a beautiful little boy who we named after the stars Understanding. I think, naively even then, that his soul came from the heavens and he picked us. For the purposes of this story, let's call him Starboy. This is Starboy's story, about the transformation that happens when you let go of the weight of expectation and dive headfirst into the shadows of your own perceived inadequacies. This is where the warm, fuzzy bedtime story sort of pumps the brake and the grit of the reality begins.

Speaker 1:

From the start, our newborn son struggled. He struggled to latch. During nursing attempts, he couldn't form his mouth into the correct shape and without the suction to get the nutrients from me he desperately needed. He started to shrink before our eyes. His first week was spent in lactation appointments, occupational therapist visits in the hospital. I was pumpy around the clock trying to stimulate a milk supply that he couldn't take from breast or bottle. We were essentially in a state of panic until we realized that we could syringe feed him with a three mil syringe by squirting the milk into his mouth a few drops at a time. That was our reality until he was able to graduate to a preemie bottle a few days later, and that's where he stayed until almost three months after that. Suffice it to say it was a rough start, and had we not been so caught up in just surviving this period, we may have realized then that something wasn't quite as it seemed.

Speaker 1:

Once he started on solid foods around six months, his physical development really took off, always full of energy and very gross motor skill inclined. We made the assumption he was tracking with his peers, and then that's when the illnesses started. He was unconventionally sick all the time, with two teenagers in the house as well. We thought this was maybe expected, but then it became a recurrent issue every two weeks, despite our efforts to protect him. Many of these viruses resulted in scary ER visits for respiratory complication, lots of recurrent ear infections. It was then that we started to think something might be off, and by the time he reached his first birthday, he was showing no inclination of talking or even really making attempts to communicate with us. He had recently started to walk, and so we took that as a good sign that he just needed more time.

Speaker 1:

Let's fast forward to his 18th month Checkup. He's still not talking, and the pediatrician is expressing concern. Understandably, those recurrent illnesses had been pervasive, and so we asked for a referral to ENT. The ENT performed a tympanogram and confirmed the presence of fluid behind both of his eardrums and referred us to audiology. The audiology test quickly revealed that our son, while not born hearing impaired, was now clinically deaf. Surgery would be a viable option to restore his hearing. At best and at worst it would change nothing, and then we could consider more invasive treatment options. I want to pause here for a moment, just to add a little sprinkle of divine intervention.

Speaker 1:

We were scheduled to take him on an international trip to Italy. A month after this appointment, we were told by the surgeon that, had we not taken him to the appointment and taken him on that plane. There was a high likelihood his eardrums would have burst mid-flight. So I just want to drop a pin at this checkpoint to note the intersection of science and spirituality as evidence that something bigger was at play. We proceeded with the surgery as immediately as our son's health would allow. He was still nonverbal at the time and only 20 months old. Allowing the nurse to carry my baby off to the OR, knowing that I could neither explain to him what was happening nor comfort him that I would be there when he woke up, was one of the hardest things I have ever done. I still can't talk about it without getting completely choked up. But fortunately Starboy is way tougher than his mama. He went without a fuss, like he was getting carried away to go join in a fun new activity. I'm happy to report that the first surgery was a success. The bilateral myringotomy with tube insertion restored his hearing and while it didn't prevent the many, many ear infections he would continue to have in the year that followed, it did make treating and clearing his infections much easier.

Speaker 1:

We enrolled him in preschool the fall following his surgery, optimistic that peer-to-peer interaction combined with intensive speech therapy would help him catch up on his speech and communication delays. At this point he was in the third percentile. This means that 97% of his peers had more verbal language ability than him. We assume that this was due to the previous year of hearing loss. Let's skip forward now to three months later. Starboy is still in intensive speech therapy. He is now attending preschool full-time and he is assessing at 7% instead of 3%. While progress is slow, we're moving in the right direction. We're feeling optimistic.

Speaker 1:

Then one afternoon I opened an email from the preschool teacher. We are noticing some behaviors in the classroom that we'd like to discuss with you. Next week comes an email from his speech pathologist. I am observing that Starboy has intent to engage with me during sessions. He is refusing to make eye contact and he is fixating on objects in his environment. Then we hear from the pediatrician at the 24-month checkup. Would you consider having your son assessed for developmental delays?

Speaker 1:

My husband and I both knew, as medical professionals ourselves, that there was no question that we would have him evaluated. We set the appointment for October. I would have to drive him an hour or more to get to the location for the testing and the day came much quicker than I think either of us were ready, for my husband had to work that day, so Starboy and I made the trek alone together. It was October 30th, 2024. Halloween was the next day, which is both my favorite holiday and one of my favorite days of the year, so the significance of this date was not lost to me. I was watching him in the rearview mirror as I drove and recalling, feeling overwhelmed by love and adoration for the tiny human he was, and also this horrible sense of dread, and it wrapped itself like a vice around my throat. It's where I physically felt it in my body. Three hours later, I heard the words no parent ever wants to hear your son has met all the qualifying criteria for autism spectrum disorder. After that, the rest of the day is a blurry memory. I was numb and shocky. I couldn't bring myself to call my husband at work and give him the diagnosis. Just saying the words out loud was too much. It was like the rug of parenthood that I had been standing on was abruptly pulled out from underneath my feet.

Speaker 1:

Intuitively understanding that what I thought my son's future was going to look like would be very different from what we had anticipated, the following weeks were filled with tears and the stages of grief, denial, anger, resentment, bargaining and, eventually, acceptance. For a long time it felt incomprehensible that our perfect little guy was somehow different, even as the pieces started to come together. The recurrent illnesses, the insomnia he suffered from and by proxy us as well, the severely delayed speech, his rigidity with transitions and boundaries while not causative, it was all correlative. I feel it's important to share this part of our transition from typical parenthood into the realm of the atypical, the divergent and the special needs. It was a period of grief and growth that ultimately held up a mirror to the work that I needed to do internally to support our son.

Speaker 1:

My feelings of loss were driven by expectations for him that he never asked for. He was perfectly okay with himself before the diagnosis and just the same after the diagnosis. This meant my dissonance with his new label was my issue and not at all his. So the work to be done was mine and to continue to love, support and guide him as before. I had to reframe those subconscious expectations for what his life was going to be like that I didn't even know I had been carrying. I had to practice radical acceptance with him, which meant I had to sit in my own shadows first and accept and love myself from that space. And doing this work on myself opened doors for connection and perception with him intuitively. That could not have come through with a numbed out and disconnected mind. Not have come through with a numbed out and disconnected mind. I learned to accept that my best efforts with him were good enough and that that was enough, full stop. Nothing I did or didn't do would change him. This was Starboy real, raw and beautifully authentic, doing his own thing, just like he had since the day he drew his first breath. The only component I had control over was my response to him, and that was always rooted at the response I had with myself.

Speaker 1:

First, my husband saw the success that this atypical approach to traditional parenting models had was creating in my ability to connect and progress with Starboy, and he shouldered his own shadows and got to work, getting to know them. Our mantra became progress over perfection always. I wanted to share this because I believe that this approach has the potential to work well for most any relationship model, especially a caregiving or parenting role. When we accept that we must parent ourselves first, I believe we show up so much better for ourselves and then for others. Anyways, back to Starboy's story. My husband and I inundated ourselves with research and formulated a plan of early intervention and support. He eventually had to leave the preschool because they couldn't provide the level of support he would ultimately require.

Speaker 1:

We faced many scary challenges over the last year. Many scary challenges over the last year, things like SIB or self-injurious behavior, true autism meltdowns. That would start as what one would think is a tantrum and progress to something much more intense and scary. He had battles and has battles with sensory downregulation, overstimulation, stimming, ongoing sleep disorders. But probably the hardest pill to swallow was the unintentional lack of understanding, even from those who wanted to support us in this process. Often sharing his diagnosis, we would be met with the response I'm sorry, to which I would reply sorry for what? And then always the awkward pause over the process of the exchange. I get the need to apologize, or the feeling that's what we should say when someone shares that. It was my initial response too, and then I sat with it and I had this realization that Starboy and all the typical processors like him are not and never were a less than a less than they're not an inherent apology.

Speaker 1:

Neurodivergence is not a disease as it turns out, it's been an incredible gift. Our son sees, processes and experiences reality in a way that we are trying to learn to understand, and while it's different, it is by no means worse. In truth, he is tapped into parts of his psyche that we routinely can't or don't access. There is a lot of interesting science that shows statistically people on the spectrum are utilizing far more gray matter than their neurotypical peers. Of course, there were those who would tell us oh, he'll just grow out of it, or that assessment is flawed, you should just get him reassessed, to which we would kindly remind them that's not how autism works, that we had in fact had him assessed with multiple resources Our private insurance carrier as well as the state resource center and the results were unanimous.

Speaker 1:

Autism, for those that may not know, is evaluated by a universally accepted diagnostic criteria. If you meet the criteria which is extensive, by the way, remember it took three hours to do his initial assessment Then you get the diagnosis and while it certainly has its shortcomings, most notably in its inability to subtype, science is working hard to try to address those insufficiencies. But, in short, autism is a difference in input and output from the brain as opposed to those that are neurotypical. There was a recent study by the Yale School of Medicine in October of 2024, right about the time that our son got diagnosed that published the following they had study participants underwent a brain scan using both magnetic resonance imaging, or MRI, and PET technology. The MRI scan allowed researchers to visualize each participant's brain anatomy in great detail. Injected a novel radio tracer known as CUCBJ, which was developed with the Yale PET Center and which enabled them to measure synaptic density in the brain, the researchers found that autistic people had 17% lower synaptic density across the whole brain compared to neurotypical individuals. Furthermore, they found that lower synaptic density was significantly correlated to the number of social communication differences, such as reduced eye contact, repetitive behaviors and difficulty understanding social cues in these individuals. In other words, the fewer synapses a person had, the greater number of autistic traits they showed this novel radio tracer as a diagnostic tool to evaluate synoptic density may help to further separate autistic individuals into smaller subgroups or types, and this in turn will allow for greater specificity in treatment protocols and hopefully also help distribute care to various subgroups more appropriately and timely.

Speaker 1:

The current treatment care system is overwhelmed and saturated. Since the reallocation of the DSM-5, which took away separatist diagnostics and lumped all of autism as one. That is another conversation entirely. Huberman did a podcast interview on the subject with Dr Karen Parker where she explained all of this and its impact on the general public with great clarity, and I will include a link for that episode if you want a deep dive. But let's fast forward to present day. Starboy is still in speech twice a week. We are proud to share that. He is verbally communicating at a level adjacent to his peers. Occupational therapy has helped with sensory regulating activities. These help him process sensory feedback and stay calm in situations that previously were triggering for him. He also did several rounds of early intervention therapy, although ultimately this was not the best fit for our family, and he is also in ABA, which is Applied Behavioral Analysis twice a week. For at least the last eight months, and I would say, aside from speech, aba has been the most supportive therapy for building functional life skills. If anyone is listening to this podcast and is going through the process of trying to set up these intervention services for their child, please take heart and hear this.

Speaker 1:

You are not alone, even though it often feels that way. Yes, there is a deficit of qualified care providers, therapists and respite workers because of the mess that the diagnostic criteria has caused. It is also lonely and frustrating to not have freedom to live your pre-diagnosis lifestyle because it doesn't align with your child's special needs. Their routine and their ability to regulate gets placed above almost everything else. The social and emotional price tag can feel really high. You also have to be willing to advocate hard for your child to academic and medical professionals that are supposed to be helping but neither know your child nor how they process, often wanting just to do things by the book.

Speaker 1:

There is a commonly accepted saying in the world of autism if you know one autistic child, you know one autistic child. This means there is no cookie cutter mold for what works, and what works one day will not necessarily work the next day. I call this the K factor. If you've tried A, b, c, d, etc and nothing sticks, pull out the most random solution you can think of. I call that K. Random solution you can think of, I call that K. Generally, it works, at least the first time.

Speaker 1:

There are many great online resources for families facing this diagnosis and online forums where a virtual community is available when sometimes a physical presence is not. I'll include links to some of the key players for us during our initial time of research and discovery. One book in particular that was incredibly helpful is called 10 Things your Child with Autism Wishes you Knew. It was a refreshingly intuitive perspective with such good advice that we bought 10 copies and mailed them to any member of the family who would read it. I'll include a link for this book as well to any member of the family who would read it. I'll include a link for this book as well.

Speaker 1:

A piece of advice that I would offer to any couples or parents who find themselves in the situation of handling a medical or psychological family crisis is do not make any permanent decisions until the waters are calm and time has passed. You will feel overwhelmed. You will feel at your limit. It is not N-O-T. Not the time to evaluate your relationship. If you do so and you will be tempted to do so you will not be coming at it with a clear mind. Instead, it is imperative to prioritize your relationship with your partner as much as possible, even in the face of no time, little sleep, constant struggle and especially when it feels like the very last thing you might want to do. Another drop of synchronicity in our story. The marriage therapist and psychologist who we were working with prior to our son's diagnosis also happened to be a tenured academic clinical researcher for children on the spectrum. So second pin to put right here for another intersection of science and spirituality. We've covered the physiology and the psychology of his story, hopefully without boring you too much, and this is where I want to dive into the spiritual. Now.

Speaker 1:

I know every parent thinks their kid is special, and rightly so. There are some things about Starboy that are clearly exceptional and definitely unexplainable. For starters, his intuitive abilities are strikingly present and observable even at shy of three years of age. I would make the argument that most young children are innately intuitive. It seems that children on the spectrum, especially those that are non-verbal or verbal delayed, take it even further. I theorize this is perhaps a. The veil is thinner and their connection to source is stronger.

Speaker 1:

But my son has an uncanny ability to read a person's energy, even without the ability to verbally communicate with them. He has been doing this for as long as I can remember. Not only does he read energy output, he assimilates and mimics it If the energy close to him is stressed and cranky. He becomes irritable If someone interacting with him is exuberant, which is one of his particular favorites he will literally bounce off the walls. There's such a pronounced correlation between the energy of the individual and our son's response that we began screening therapists and respite workers solely by the presentation of their energy, mirrored through our son, when they entered his proximity. Being a vortex of raw energy definitely has its drawbacks. He feels things very deeply and very intensely, both physically and emotionally. He has the ability to suck the energy out of any space he enters, but his smile is made of the stars. He will just draw you right in like a fly to honey. No one ever complains of playing or interacting with him, but after the fact, when they are exhausted and they comment on it and they can't explain why he wore them out so much, I just smile and tell them to Google Colin Robinson's character from what we Do in the Shadows.

Speaker 1:

Starboy knows what we are thinking and feeling, often before we do. I sometimes find myself in situations where I am scrambling after I've underestimated his ability to comprehend. It is clear, even with a deficit of words, that he is wicked smart and deeply attuned. In fact, this presented inevitable problems in parenting for us. If I or my husband are having a moment. Maybe we're stressed. It was a long day at work. We've had tension between us as a couple. If we try to push that energy down and just parent through it or over it, starboy will quite literally stop the forward momentum of progress towards our shared goal, whether that's getting him dressed, toileting, bathing or just playing together, things will suddenly become unbearably challenging, and usually that's when we realize we need to pause and look inward and address our own energy. It is now a universally accepted truth in our household that my husband and I have to routinely check in with ourselves first, especially if we are struggling, before we request action or change from our son.

Speaker 1:

There is a new front line of scientific discovery on the telepathic abilities of children and nonverbal people on the spectrum and nonverbal people on the spectrum. Dr Diane Powell, a John Hopkins-trained psychiatrist, is one of the leading researchers on this topic. Her recent work and the premise behind it is beautifully explained in episode one of the podcast, the Telepathy Tapes. I can't encourage you enough to listen to the incredible stories in the episodes there. I have come to the understanding that our foundational understanding of individual consciousness falls way short of reality. In my personal experience.

Speaker 1:

I have found this to be true of Starboy as well. Sometimes, when he's in the right mood, I can read him an elaborate book with little paragraphs on each page, and he can recite the words that are there in real time as I read it, words and phrases that he would never say in his vernacular. With his speech delays, roll off his tongue, while my mouth usually hangs open in disbelief. We sent videos of this phenomenon to his clinical team and no one could tell us what was happening. It wasn't until I listened to the telepathy tapes and I heard the exact same thing described there, that I unbelievably had my answer. So if you are at all interested in understanding the incredible neurocomplexity of our neurodivergent, you should really give it a listen, and I'm barely scraping the surface of explanation here of what shared consciousness may be capable of. In closing, it is my hope that Starboy's story brings light to anyone struggling in those dark spaces of missed opportunities, unmet expectations and grief.

Speaker 1:

The universal truths of relating to and raising a neurodivergent soul in today's world are applicable to so many paths, with or without autism. As much as it is his birth story, it is also the story of a parent's journey, raising a child more of the stars than below them. This planet is bursting with a population than below them. This planet is bursting with a population where most of us have forgotten how to access these parts of our brain. We've lost touch with the collective consciousness. We have repressed our emotional intelligence so that we are smaller, not extra, and never too much. We've accepted ways of existing thinking and doing that are right, simply because society tells us it is. So I now stand and challenge that way of limited thinking.

Speaker 1:

The space Starboy resides in organically is the exact opposite of that. He is so authentically himself that he can't help it. He knows no other way than to be joyfully, unfiltered and present, sometimes so much so that it can be uncomfortable for those who can't and won't hold the same space for themselves. He continually pulls me into energetic alignment with myself and shows me how I cast my energy shadows. Learning to walk alongside a highly intuitive, highly intelligent, often misunderstood little being who calls me mama is the greatest gift I have yet received. I have no doubt I will continue to learn from him for the rest of my days. Thank you for listening to his story.

Speaker 1:

If you are enjoying this podcast content, please subscribe and leave me a review on your listening or viewing platform of choice. Your feedback will help us grow, share more remarkable stories and present new information to an ever-expanding like-minded community. I want to offer a reminder that your voice matters and I would love to connect with you. If you feel called to contribute, please reach out. You can email topic ideas, suggestions for interviews and feedback to Vanessa at squatsandsayancescom. That's Vanessa with an E-V-E-N-E-S-S-A. You can find new episodes of Squats and Sayances on all major podcast platforms and the adjacent video blog cast on my YouTube channel. Please find and follow me on social media, at squats and seances, on Instagram, facebook and TikTok. Until the next time, may you continue to live well, embrace authenticity, question everything and, of course, stay.