perfectstorm2025edition

[perfectstorm2025edition]

When all the right conditional factors came together at all the wrong times, the perfect neurodevelopmental storm was created. As many of you know, a lengthy series of comprehensive developmental evaluations recently confirmed our sweet Finn with a suspected diagnosis of autism spectrum disorder last month. Currently, his evaluation report indicates Level 1 functioning for communication and 2 function level for behaviors. Around 15 months or so, Finn began to experience speech regression. He talked almost as early as we walked (and we were running by 11 months, LOL) and using several words consistently like “ball” and “dog.”

Surely, we’ve all heard that God has a sense of humor. Well, the one area of mental health I haven’t had the opportunity to have direct clinical experience in is in the field of ABA. Applied Behavioral Analysis. I’m learning so many things, of course. I’m trying so hard to learn all the things I possibly can! All the things to help myself, to help Finnley, but also to gain this important knowledge and these meaningful skills so that I may perhaps also help others and their loved ones also struggling on the spectrum. I’m learning a phrase "autism: different, not less.” This dramatic phrase emphasizes that autistic individuals are unique, possessing many individual strengths, but also acknowledging that their experiences and perspectives may differ from neurotypical individuals. However, this doesn't diminish their value or abilities.

Sadly, what it does diminish is their life expectancy. Longitudinal studies that followed people with Autism for over 20 years found that the average life expectancy ranges between 39 years and 58 years. This means the average lifespan for these folks, for our sweet Finn, is nearly 20 years less than that of an average healthy adult. I WANT TO CHANGE THIS!!!!!! As Most of you also know I am currently pursuing my own advanced degree in mental health as a FT NP student. I instantly knew Finn’s regressive language development to be a huge concern, a major warning sign to continue to closely monitor. As we recently began nearing Travis’ graduation these past few months, Finnley’s services and therapy appointments were only increasing to offer him the additional recommended support that he was clearly, desperately needing.

With Finn’s limited coping abilities at this time, you may now be at the stage of understanding as to where my Clooney’s 2000’s, real-life based Perfect Storm movie reference is coming from. I’m learning autism truly is a spectrum. I have a feeling another quarter century from now, God willing I be so blessed to still be living earthside 2050 that I may have a love/hate relationship with the word “spectrum.” For context I am being silly, however, that doesn’t make it any less true. And please allow me to emphasize how much I pray I have learned by then. How much more aware and informed I am. How much more educated I am. Also, how much support I hope my Finn has been given by then.

I have said this to a few of those closest to me professionally but seriously. I’m going to go ahead and announce this publicly, too. Mark my words: in 2050, bet my sweet you know what ABA the approved, medically necessary treatment for ADHD as well. What I really mean is, it will be the gold standard intervention that most insurances will pay for. BUT. This isn’t about that. However though, while we’re on the subject, did you know that ADHD also lowers one’s lifespan by an average of 7 years, depending on gender? To just think in 2050, Finnley Wayne would be 27, going on 28 himself. The same age I was when my dad passed.

The challenges, the abilities, the functionality, the deficits, the level of support required… It’s all on a spectrum. Some kiddos/adults may be non-verbal while others, like the “Good Doctor,” have exceptional abilities in specific areas. While "The Good Doctor" is a fictional medical drama TV series, it draws upon inspiration from real-life chance discoveries and medical experiences, aiming for authenticity in portraying autism and the medical world. The show, which ran for 5 seasons starring Freddie Highmore as Shaun Murphy: a socially awkward, sensory sensitive surgical resident with savant syndrome and ASD (autism), is a fictionalized account.

While not based on a single true story, those associated with Good Doctor including many actors yes, of course, but many others too, they have all emphasized the importance of portraying autism authentically. Good Doctor aims to be fairly accurate when it comes to medical jargon, diagnoses, and treatments.

The show's creators, directors and producers have shared that the story was largely inspired by a courageous 5-year-old Washington State kiddo who underwent a routine teeth cleaning that led to the discovery of a cancerous tumor. Please allow my nurse brain to “geek out” for a minute. Over ninety percent of Autism is linked to inherited genetic mutations. Having a sibling with Autism is the single most significant risk factor for developing autism. Additional significant increased risk factors for the development of autism include an older paternal age (dad’s 35+). Children of mothers living near a freeway, and traffic-related pollution, during the third trimester of pregnancy were twice as likely to develop ASD. Children of mothers with proteins, i.e. antibodies to fight infection, may interfere with their children’s brain development, possibly leading to autism.

As all of you likely know, contrasting to my previous experiences with Roman and Adrhianna, entirely different human versions of this younger Chelsea in her not just more youthful but also healthier bodies. Chelsea, as a 19-year-old freshman-undergraduate-nursing-student-self with Adrhi, and the eager-beaver-22-year-old soon-to-be new-nurse Chelsea with Roman. I had quite a complicated pregnancy and delivery with our sweet Finnley. These complications (in addition to Finnley’s male sex), unfortunately composed quite the laundry list. Before my pregnancy was confirmed around 3-5 weeks, my PCP was working me up for a GI condition. Around 6-8 weeks, after losing well over ten percent of my body weight, barely tipping the scales over 100 lbs., Hyperemesis Gravidarum (HG, essentially severe morning sickness) was diagnosed.

HG, in addition to several episodes of pyelonephritis (kidney infection), way too many episodes of ER and urgent care trips to count for IV medication and fluid until home health was ordered and approved. Retrospection, with 20/20 vision of course, yielded many insights and undiscovered root causes. At that time what neither I nor my providers were aware of was that I was also suffering from an undiagnosed H. Pylori infection that was clearly only complicating all the matters, that had resulted in several, again at the time, unknown thus unhealed peptic ulcers to my stomach and duodenum, the first part of your small intestine. 

Our little Finn faced and overcame all the odds before he took hisown first official breath, just as I’ve been told his mama has as well😉 Situations resulting in oxygen deficiency to baby’s brain greatly increase one’s risk for the development of autism. Sadly, our scenario is a perfect example of what I meant by all right conditions at all the wrong times. Poor Finn experienced meconium aspiration syndrome which is where baby inhales their first stool into his or her lung while still in utero leading to additional complications/interventions. During my labor and delivery, we experienced late decelerations and decreased saturations resulting in deep suctioning and CPAP.Thank the Lord, all interventions were successful at bedside and Finn required NO NICU overnights!

To stay in the home with Finnley, allowing him to receive early intervention through our assigned Regional Center as well as speech and occupational therapies, I altered my graduate nursing journey studies permitting myself to primarily pursue the licensure component, pausing the scholarly project component (i.e. the doctoral dissertation) by transferring into a master’s program this past January. This has provided me with deep, deep reflection time. Time that has revealed thoughts that maybe, just maybe, the topic I initially thought I wanted to focus my doctoral studies upon isn’t the topic I may be planning to focus my doctoral studies upon afterall.

What the majority of you don’t know, however, is what I’m about to share next. With the help of a dear sweet soul literally placed into my life by the Lord as there is no other explanation, my Uncle Karl has also been working on Chelsea for quite some time as well. With the help of not just him of course but every single person reading this. As I learned from my own father at a very young age, it takes a village. He instilled in me the importance of community, the vitality of a strong support system. What I am oh so joy-filled to share next is that what I HAVE been able to do, is truly and finally, (because ALL THINGS are possible with Christ), is surrender things to the Lord I have spent many years holding onto. These things… hurt, pain, confusion, profound loss… They had me stuck. Kind of similar to how I’m learning ASD has Finn “stuck” (i.e.. fixating) sometimes in his attempt at effective communication, resulting in severe dysregulation and subsequent self-injurious behavior.

My stuck was different though. I refused to accept God’s timing. All the right factors came together at all the right times; they always have, and they always will. But I was so angry at God. I was angry at Him for what I felt had been my endurance of continued hardships and trauma. Chronic and complex trauma. BUT. God’s been working on Chelsea. He softened her heart after her years of prayers, hard-fought hallelujahs, and “how could you do this to me(s)?!” These WHYYYYYYYYY ME LORD(s)?!?!?! Emphasize the s at the end.

She is finally choosing to open up those beautiful, big brown eyes (as her dad always said), and choose to accept many fundamental truths. God’s always been on time. God’s never failed Chelsea, and He’s not starting now. But Chelsea is CERTAINLY DONE doing all the things her way because she has learned all the hard lessons in her time… after time… after time. She’s done making life harder for herself by continuing to choose her personal pattern of self-destructive choices. She’s done leaning on her own understanding. She’s really, really ready to choose to fully rest, unencumbered, in green meadows so she can more easily drink from peaceful streams. Because: it is well; peace like a river.

She’s leaning into her faith and trusting in His promises, that HE WORKS ALL THINGS FOR HER GOOD, IN HIS TIME. Not in Chelea’s time. In HIS TIME. And I’m saying it out loud finally, sharing it with all of you, to hold my self-accountable. Like I ask others to do. Like I ask my children to do. Because I want to foster the best parts of my dad who is now gone. The calm and caring giant who unfortunately isn’t here anymore to pass down his life lessons to my next generation. To our next generation.

Chelsea will choose to intentionally stop, out of spite, unintentionally gatekeeping Victor’s hard-earned wisdom that he is no longer able to directly share with her offspring, my contribution to society. In fact, my generous donations span two whole full generations, but you get my point. It also doesn’t mean Chelsea needs to refuse the blessings God is offering right in front of her in the form of the people he is placing into her life to help her. Another centrality Chelsea has accepted with her newly awakened mind, and widely opened eyes is SHE IS HERE! God keeps waking her up, day after day after day.

And she’s so incredibly, humbly grateful. She’s grateful to Him and she’s grateful TO ALL OF YOU!!! Thank you, friends and family! Thank you for taking the time to read this but more so, thank you for taking the time and energy you have, whether it be 36 years or 6 months of solid investments into my life. Into my children’s lives. Thank you for loving us and supporting us.

A special thanks to a few more people, too. My hubby. Not just for that 1 IV you had to put in that 1 time when all the nurses couldn’t get it! Hehehe. And to my kids, but not just for loving your brother as hard as you love yourselves. To my best friend, of a literal quarter century and counting. NOT just for standing beside this girl through all those pregnancies and life experiences mentioned above, whether it be in-person, waiting outside in the hallway due to her weak stomach or in spirit due to the thousands of miles of separation. To my other best friend of now going on 7 years… you know they say friendships that last 7 years lasts a lifetime, right? It’s officially too late!!! You’re stuck with us!!!!!!!!!!!!!!!! Hehehehe. Thank you for loving the true, authentic me, and my family. And lastly but certainly not of least: thank you, Karl. Thank you for choosing to step into the role of "bonus dad," for me and "bonus gradpa," for my kids.

Thank you, all of you, for loving me enough for helping me in my journey to learn to truly love myself. Thank you, for the continuous outpouring your love, energy and devotion into us, into our lives. WE LOVE you too!!!!!!!!!!!!!!!!!!!! I am choosing to share my very personal story at this time in our lives, during World Autism Awareness month as I pray our story reaches and touches others in a seriously meaningful and impactful way. We want every day to be autism acceptance, and we will put in our time as we diligently prepare for our Autism Speaks Walk this December 30th, 2025, in Orange County, California!

If you’re someone reading this, and you don’t have someone close to you who may experience some of the above struggles I’ve shared, but you’d love to learn more, please consider checking out autismspeaks.org. When you see a stressed mama leaving the park with her “terrible 2 toddler” in full blown temper tantrum mode… Please know, this may not be what it seemingly appears. This may be a 2-year-old toddler who’s also on the spectrum, on top of experiencing normal 2-year-old struggles as he or she is also having a whole heap load of troubles that perhaps you have no idea about.

He or she may not be having a temper tantrum at all. If he or she is anything like our sweet Finn, who is perhaps throwing himself onto the ground and accidentally chips more of his front teeth every time his, despite all your best attempts and efforts and redirections and interventions. Maybe he is throwing toys at me. Maybe he’s throwing toys at YOU! LOL. Sorry, I didn’t’ mean to laugh out loud but I was just thinking how perhaps, it may be a little funny indeed if some of these toys were chucked at the head of someone who is not myself! He or she may be fully engaged in a sensory meltdown.

In the context of Autism Spectrum Disorder (ASD), a sensory meltdown is an intense, involuntary response to overwhelming sensory or emotional input, often manifesting as a loss of control and behaviors like crying, screaming, or physical outbursts, rather than a deliberate attempt to manipulate a situation. Those noises you don’t hear… They’re not just annoying. They’re not just overstimulating. They’re OVERWHELMING. They’re frightening. And these people. And these lights. AHHHHHHH…… WAAAAAYYYYYYY too many people. Waaaaaaayyyyyyyy too bright. He’s now filled with feelings he doesn’t understand, and coping abilities that are so limited or completely unavailable or untapped into at all yet. Meltdowns can be seen as the body's "fight or flight" response to an overwhelming situation, where the person may react physically or emotionally. It may look like shutting down: Some autistic individuals may become completely unresponsive during a meltdown.

You know that small change in your schedule or your routine last Tuesday morning around 10:30 AM? Or maybe you don’t. Because you don’t struggle with difficulties in executive functioning, causing you difficulties and anxieties and challenges with minor disruptions to everyday plans? Or maybe you didn’t… Maybe your planning, your organization, your ability to be flexible and self-regulate your emotions is functioning at at least an average level. Maybe you don’t have these same deficits that impact your routines, your daily tasks and social interactions. Maybe you can’t relate, because maybe you do possess all the needed cognitive, psychological and behavioral skills, the aptitude and the abilities to effectively manage everything and everyone life throws at you on a consistent and unrelenting daily basis.

In the context of ASD, this could look like increased anxiety, stress, and behavioral challenges, as individuals with ASD rely on predictability and structure for a sense of security. Maybe visual support and clear instructions aren’t as vital for your everyday success as food and water are. Maybe checklists or step-by-step instructions to break down tasks into smaller, more manageable chunks aren’t needed for you to successfully complete your daily tasks. Maybe you don’t even consider a social interaction or encounter requiring any formal of verbal or non-verbal communication a “task” to begin with in the first place. BUT, here’s the hard reality, friends. Someone you know does. And they you’re your help.

Will you consider learning more about how to effectively support those in your families, and your communities, with ASD? Instead of living in a society, in a world, with kiddos with ASD being taught how to learn to effectively communicate with adults, how to effectively manage their behaviors in public settings… Will you consider being an adult who learns how to effectively communicate and interact with an individual with ASD living in your society, in your neighborhood, in your community? If nothing changes, nothing changes.