ASD/PANS/CoVID Parallels

Isolation reinforces our connection to the world through social media

Have you noticed the social media posts from Autism families pleading with you to see them? Do you even know what I’m talking about? Autism families know what it’s like to live in isolation and fear. They are reaching out to loved ones and friends on their social media feeds to say, do you see me now? They are drawing your attention to the significant parallels between the way you feel being isolated from loved ones and afraid of CoVID-19 and how we have felt since the inception of our experiences with Autism, PANS and PANDAS.

Many Autism and PANS families have lived in an adaptive isolation for years and years, some decades, it’s a form of protective, self-isolation resulting from a condition that we must respond to in order to live a somewhat bearable life in a world full of threats. This might have sounded like an incomprehensible statement to you only 8 weeks ago, one you would perhaps even brush off as insignificant to you, merely because you couldn’t comprehend the gravity of living this way, maybe even denouncing people who “choose” this “lifestyle.” But now, now that you have lived in very similar shoes, now that you have been forced to rethink everything you do and believe about yourself, your family and the world around you, that eery parallel is closing in the gap that once separated us.

As far back as I can remember in the journey of recovering our oldest from Autism and PANDAS and our youngest from ODD and MCAD, we’ve had to make incredibly difficult decisions for our family, decisions that require us to choose the lesser of the evils we are faced with. Children don’t understand how hard these decisions are on parents and they may feel slighted or angry, because their lives are so different from “everyone else.” So our battles aren’t just with ourselves, they are also with the people who are most effected by our decisions, and because of their limited mental capacity or inexperienced age, they don’t fully understand the weight of our choices.

CoVID-19 is strong-arming you into a very similar world of unpredictability, a world where stability is fleeting and reliant on people who may not even know you exist. How does it feel to think you have no control over the outcome of your family’s lives? How does it feel to have no idea when you will be able to enjoy the simple things in life again, like eating out with friends? How does it feel to HAVE to put your faith in a government you don’t feel fully confident in? How does it feel to know that YOU are vulnerable and the only power you have is within your four walls?

I’d like to highlight some of the parallels we now share with many of you who haven’t had to adapt to a new norm that encompasses the totality of your life like this experience has. I’m sure you are thinking, why is this even important? Well friends, my family, and others like us have felt invisible to some of the most important people of our lives for years. We have felt judged, berated and discredited by the very people we rely on for filling our love tanks, and helping us find the strength to keep going at THE most difficult time of our lives. It’s a lonely place, and for the first time in any of our lives, the entire globe can relate! The most important part of something so terrifying and unpredictable is togetherness, love and compassion. My hope is that we ALL come out of this with more compassion for the people standing next to us, for the people who look ok, but aren’t ok inside.

Let’s navigate the world differently tomorrow than we did yesterday.

THE FAMILY CONNECTION

Think about how it feels to be distanced from family members and friends right now. It sucks that the only way we can reach out to those people is through phones, video or social media, doesn’t it?

As I mentioned above, many of us ASD/PANS families feel stranded by those we wish to have by our sides. The reasons for this vary wildly from a lack of understanding or an inability to manage the situation, to pure devastation within the family environment. It is human nature to turn away from things we don’t understand, especially when it’s painful or scary. Even though your loved ones may not be infected with CoVID, just the idea that they COULD be keeps you apart. Invisible fear. Parents of a chronically ill child push forward doing all we can to help our children, whether our families and friends get us or not. We have to. We make decisions that are best for our children. Who else is going to be an advocate for our kids? This might be perceived as a form of chosen disconnection when it’s actually crisis mode survival. Our lives are riddled with events that separate us from family and friends whether we like it or not.

Diagnosis like ASD/PANS/PANDAS/ODD/MCAD are breath taking, life-altering, terrifying and they produce more questions than answers. Many of us are faced with finding our own answers due to the inexperience medical professionals have with these conditions. Support is limited to self-pay, sometimes experimental solutions with practitioners who are few and far between. Our wallets are strained, our schedules are equally as strained, our free time is limited, and we are flat out exhausted with very little left to give of ourselves. Maybe we just aren’t as fun as we used to be. Exhaustion and isolation has a way of doing that, doesn’t it? Now imagine if that exhaustion and isolation was chronic with no end in sight. Being a parent to a high needs child comes with life-long obligation and we take that responsibility very seriously.

Parents of kids with chronic illnesses have to make decisions for our children to live very differently than their peers (the norm), because they require a different level of support which may include weekly and sometimes daily treatments or interventions. Imagine having to tell your innocent child that this isolation is not temporary, that it’s indefinite. This isolation that threatens their very identity as someone’s friend, cousin, student and neighbor and depresses their spirits is their new norm? Many of our ASD/PANS children live in a protective isolation that they just don’t comprehend yet. The family dynamic can become unglued by our inability to maintain balance in such a strained lifestyle.

Loved ones outside of our immediate family might avoid us for a variety of reasons: difficult to understand or deal with behaviors in our children, lifestyle choices that put people off, dietary requirements that are difficult to navigate as a host/hostess, and perhaps just a complete lack of comprehension for what a family like ours is going through, making them feel out of sorts when in each other’s company. Most of us are also forced to avoid particular situations outside of our homes, because of the nature of the illness(es) we are dealing with. Some children can’t handle the stimulation of a crowd of people, others might have intense meltdowns over the loud sounds at events like carnivals or parties, many are flight risks, because they run without reservation, and most of our children cannot tolerate the level of toxins that can’t be controlled when we leave the safety of our homes, triggering a physical or neurological reaction. For a child with PANS, an exposure to a trigger might produce a new flare, for example foods, mold, chemicals, a virus or a bacteria which has the tendency to travel directly to the brain causing an autoimmune cascade that may be difficult to reverse once it starts. We must weigh the consequences of our outings…like everyone who now fears CoVID-19.

CoVID-19 has us all fearing each other. We can’t sit close to or even visit loved ones and friends, because of fear that we could get very sick, or even die, from exposure. We live with fear that we could be responsible for someone else’s health consequences and our choices reflect that. We can’t hug our parents, aunts, uncles and adult siblings, because we fear for our lives and even worse having an influence on their lives. It feels awful to be forced apart from those we love most, especially when we need them the most, doesn’t it?

It happens every day for those with high needs children who rely on protection from environmental exposures. Have you ever thought about why we can’t participate in activities we’d otherwise love to be part of? Our children must come first, no matter how hard it is. You will notice that regardless of how we feel, we are attempting to put our best face forward, so you may not even know that we are struggling.

IMMUNE SYSTEM INVOLVEMENT

CoVID-19 is more deadly in those with compromised immune systems, but what does that mean exactly, right? Who is actually considered immune compromised? We are learning the hard way, unfortunately. The virus doesn’t discriminate, it has reached hundreds of thousands of people across the globe, but why is it only killing a subset of people? Because those people have weaknesses or deficiencies in their immune systems. Being young or old doesn’t determine immune system status, only individual circumstances do. A virus can only devastate a weak immune system. A strong immune system is no match for the Coronavirus, proven time and time again. There are many theories going around and I have my own ideas, but one thing we can all agree on, is that there is fear for those who have known immune system deficiencies and maybe even those who don’t realize they may have hidden or misunderstood immune system deficiencies. What we don’t know could kill us, quite literally.

Who informs you?

Where is our information about recovery coming from? We should be asking ourselves who drives that information and why? It’s clear that the media and the government are pushing pharmaceuticals as the only solution. No one can deny this, it’s overt. Given the amount of information that has surfaced from reputable, even world-renowned doctors that other, safer treatments are not only available, but they are preventing death, we may be realizing we need to become our own advocates of health. It’s up to us to seek out what other avenues we might take for ourselves or our loved ones if we were to become infected. I’ve spoken with countless families who have recovered holistically and did NOT end up in an ICU with a ventilator breathing for them. In fact, I know of doctors whose recovery records are 100%. Ok so with this information, clearly we would not want to follow the Pied Piper, would we? If we KNEW that recoveries are possible, and that we have to follow the less traveled path to be part of those statistics, why wouldn’t we? Because of the establishment, because we are being conditioned to think we will die, if we don’t use medication and ventilators. Regardless of what you truly believe about these options, you are being swayed by the media and news outlets…UNLESS, you’ve experienced other miracles that tell you otherwise.

Let me tell you how Autism can narrow this gap. Autism is not what the establishment has lead you to believe. Autism is NOT an inflexible, mental disorder that requires institutionalization, in most cases. If you talk to most mainstream doctors, teachers and therapists, they may lead you to believe that the only way to handle Autism is with behavioral therapy and maybe a mind-altering medication to ease the undesirable behaviors. That only makes sense if you believe that Autism is an irreversible mental condition that a child is destined to live with for the rest of their life. But in many cases, it’s not, the path of Autism can be altered.

First, you would need to recognize that current research is confirming what parents like myself have come to learn through years of experience. Autism is a combination of medical disorders that result in global symptoms which are viewed by the establishment as “mental” in nature, therefore, thought of as irreversible without mind altering medications or forced behavioral therapies. Autism has been referred to as the canary in the coal mine, because they are the kids who highlight the invisible toxicities of our world. Those of us who have been down that alternate path, because we have been trapped into thinking outside of the box, KNOW that the alternatives work. How? Because they worked for us. That less traveled path is growing more worn over time, as success stories grow and infiltrate social media. Growing evidence and research is pointing toward the immune system as the key to Autism and PANS recoveries. Word travels fast in the holistic-minded Autism community, we are a tight knit group who has experience with this path, and we have linked arms across the globe to offer support to those who are less informed. We want our stories to speak hope into the lives of those who haven’t yet bridged this information gap. But why haven’t mainstream resources joined our forces? The answer to this question is likely darker than you’d like to admit or accept, but do some research yourself and you will find an endless rabbit hole. I’d recommend starting with a book called “How to End the Autism Epidemic.” You can read my review and find a link for this book in “Recommended Reading.” It happens to be the very first book on my list, and for good reason. 😉

And what is it that we have learned here that relates to CoVID-19…it’s about the immune system. A compromised immune system makes us susceptible to disease, acute and chronic. A compromised immune system puts you at risk of developing severe complications from CoVID-19. Autism and many other chronic illnesses our children are facing today are the result of a weak or compromised immune system. It may not take them down fast and furious like CoVID-19, but it slowly strips families of freedoms in many other undeniable ways. These children have gut imbalances, high levels of nasty infections, autoimmune disorders that are triggered by toxins, microbes and foods, they don’t detox efficiently leading to high toxic loads, they have nutritional deficiencies and they require a lot of management to get, and stay healthy. Those of us who have witnessed the miracle of boosting the immune system resulting in changes in our children also know that we have the power to ward off stealthy viruses too. Trust me when I tell you, we’ve been there. Maybe not CoVID-19, but deadly pathogens like Clostridia which can wipe out nursing homes, and systemic strep infections that can go to the heart or the brain, parasites that are known to wreak havoc on the immune system. We’ve been there. So we know the fears, we know the unpredictability of illnesses like CoVID-19 very well, and we know the maze of treatment inconsistencies the world is facing now with CoVID-19. Are we afraid still? You bet your ass, our kids are at-risk because of their tendency to immune system deficiencies that come and go according to their environment, so yeah, we aren’t above the fear. When you learn that your child’s immune system is functioning at only 30% effectiveness, and that their health and ability to function normally relies on the exhaustive work of rebuilding their immune system, it means there is no other option but to amp that up at a time like this, and hope for the best. We also know that our best chance at survival with a virus like CoVID-19 comes from the power of nature and building immunity. We follow the same doctors who have lead us on the path to improving our children’s health, because we’ve seen the miracles, we BELIEVE in the miracles, and CoVID success stories are confirming what we believe to be true about the power of the immune system!

FINANCIAL RUINS

You know that uncertainty and instability that comes with not knowing what the economic conditions will look like when life goes back to our new normal? Yeah. That.

Ask any Autism or chronic illness family what this sort of instability does to the wallet? Or worse, how it impacts the spirit of the family. Most of the Autism/PANS families I know have only one full-time working parent, because the second parent is tasked with staying home to take care of a chronically ill child. It’s a full time job - 24/7. Don’t even get me started on how many single parents of chronically ill children there are struggling to prioritize their needs. This is exactly why I wrote a book and created my private coached community.

It has been estimated to cost upwards of six figures ANNUALLY to holistically treat one child with Autism! Many families have multiple effected children, requiring them to also prioritize who receives treatment. Do you know many people, even dual income families, who can pull this off comfortably? Not many, sadly. The disconnect in the medical system prevents most successful treatments for Autism and chronic illnesses from being covered expenses, leaving parents to foot the bills themselves. What does that do to a single income family without the means to pay for multiple $500+ doctor tabs and $2000 for necessary testing, per child, PER VISIT? It prevents many from helping their loved ones effectively. Think of how devastating it would be to know a family member has CoVID-19, but even your best efforts prevent you from accessing the care they need to assure their best chance for recovery. It’s unfathomable, but it happens all the time for us. The financial ruins Autism and chronic illness parents face is staggering. Staggering. It leaves them with less than desirable options for their children, imagine the guilt?

FEAR

This blog wouldn’t be complete without a discussion about fear. I think it’s safe to say that we all intimately know the fear that comes with uncertainty, both physically and emotionally, that comes with the territory of a lethal threat on your future. The future is broadly unknown currently, although hasn’t it always been? We have no idea how this will all play out, and the only option we have is to trust that we can navigate whatever comes our way. As we are faced with our next steps, we will have to pivot and adjust our expectations accordingly.

From the very first moment an ASD/PANS family comes face to face with the reality of what that diagnosis REALLY means, our dreams crumble around us. We are forced to work at rebuilding them according to our new norm, within the confines of the illness. We have to quickly learn to accept the devastation that took away our dreams for the future and make do with short term, achievable and often painful goals, until we are given the go-ahead to think further ahead than the foreseeable future. For some fragile households, this process is incredibly difficult, maybe even impossible. Lost incomes, inadequate treatment options, irreparable relationships, lack of support, and isolation will define how some people navigate moving forward.

The good news is that WE get to choose how we perceive the world around us, and even at it’s worst, there are glimmers of hope and moments of light. We must take advantage of opportunities when they arise, never taking for granted that we will have more moments like that in the days to come, because the truth is, we never truly knew what our future looked like anyway, we only assumed it would look just like the days preceding it. The glaring difference we are experiencing now, is that we are hyper-focused on the abyss before us and how unpredictable it really is.

Let’s all take notice of how we feel, recognizing that we are intimately joined with our local and distanced family members, neighbors, mail carriers, teachers, farmers, medical providers, local and state representatives and even our president in this quest for freedom, health and togetherness. Our emotions and our personal perspectives serve us with purpose. We can only govern how we respond to the conditions we can’t control, so take charge of your purpose and own it unapologetically, but at the same time, take in the fact that everyone else is trying to do the same. A little compassion can go a long way.

Regardless of the challenges we face as individuals, if we zoom out and turn our focus to the bigger picture, we may notice that our ability to relate to each other is something we have taken for granted. We may know that until someone else has walked in our shoes, they can’t understand the roads we’ve traveled, but let’s task ourselves with recognizing the same story applies to those around us. We can raise our vibration by engaging in gratitude, compassion and acts of kindness which lift everyone involved. ❤️