Over the past two years (and counting) I have lived through events that have bore incredible pain, as many others have. If you had asked me in March of 2020 if even a fraction of what I experienced would occur I would not have believed you.
I often have described these past two years as purgatory or limbo; life was going on around me but I was stuck in time. Event after event transpired yet the hardship of my own reality was unchanging. During this time, when the universe dealt me that painful set of cards, I was reminded that through our wounds we heal.
I couldn’t stop several grievous events from happening or even prevent how other people were treating me. What I could do is pay attention to the loving & extraordinary people in my life, love myself with my whole heart, heal, and witness the system around me. It was through this process that I was able to start healing my wounds. It was also through this process I saw how damaged our legal system and many related parties are.
The Injustice of the Justice System
I witnessed how power, control, status, money, and fear are the status quo. At first, I fought and screamed against this. Then I realized that the screaming only made it worse. This is how I learned to witness–to surrender–to the system that would now make life-changing decisions for my life and my children’s lives. I realized freedom I thought was mine I never really had in the first place–I was just privileged enough not to have to enter the system before.
Waking up this past weekend to the rights of women being stripped away across the country was sobering but not surprising. Through my own witnessing and observance of our legal system in action, I am able to see this for what it is. As I’ve said before and will say again; power, control, status, money, and fear.
It is sickening to think that these base human qualities are making decisions restricting the rights of women, yet it is our reality. While the restriction of abortions is by far the largest power play we have seen in decades, power plays to remove our rights and increase the wealth & control of others have been happening in front of our eyes for decades.
I still believe that the majority of human beings are good and have more in common than not. Yet so many of us have become disconnected (myself included) from the legal system and the politics around us. I don’t know about you but the word ‘politics’ comes up and my gut reaction is to tuck and roll; to avoid the conversation. My instinct to avoid the conversation is because, to me, politics equals arguing and conflict that ends up with inaction and everyone upset at Thanksgiving.
I wonder now if this wasn’t a ploy to keep us all away from the system, to keep us away from being a part of the conversation? Seeing what I have seen now, I wouldn’t put it past anyone in a position of power in our country. Because if we are all fighting with each other we are not paying attention to them and when we’re not paying attention elected officials who have no right to lead us, let alone speak for us, are running the country for their own selfish gains.
What if we all paid attention? What if we all listened to each other? What if we all stopped arguing and began to witness the system in front of us for what it is? Could it change? I think it could. I also think, much like my own experience, bearing witness may be painful because we will have to look at the wounds of our country. We will have to ask, “Baby, where does it hurt?” We will have to listen to the oppressed, listen to the wounded, and hold space for each wound so we know what needs our attention.
Broken System, Unbroken People
The system is broken, overrun with greed. But we are not broken. We, the people beneath the system. The overturning of Roe vs. Wade is a national wake-up call, shining a light on people in power who should in no way be in power. Six people took away the rights of millions. Six.
I do not know where to start, truly I have to google it. What I do know is that being a bystander in our country is no longer an option. The conflict of politics is not an excuse not to get involved. I can no longer say it’s not for me because this system is taking away my, your, and our children’s freedom. It will require strength, care, and humility. It will require knowing ourselves so we know what we will and will not stand for. It will require learning and unlearning. It will require kindness, strong boundaries, and grace. Trying and failing, then trying again.
Wounds allow light to come into the darkness when we are brave enough to heal them. “Hate, it has caused a lot of problems in the world, but has not solved one yet.” -Maya Angelou. We can either spend the rest of our lives fighting with each other about disagreements, differences, and what we do not want in our policy or we lean into love, listen, take action, and ask what we want. There is kindness in so many of us, our love is stronger than hate. We can make a change we want to see but it will take all of us.
Be brave, band together, listen, heal, and move to action. Be the change you want to see.
Over the last few weeks, I’ve written to you from a more personal place than usual. My intention in writing these pieces of my story is to share my humanity with you. As human beings, we all go through trials and tribulations. We all have hardships. And we all fall down but rise to stand tall another day. The last twenty or so months have been challenging as a society and the world has certainly not been hardship-free, even before COVID entered our worlds.
Mitigating Damage from Outside Noise
This week I’d like to write about the noise of the world, including the noise that has surrounded me, and how to differentiate noise from the truth. When I say the noise of the world I’m referring to Brene Brown and her reference to the warrior’s ring featuring Theodore Roosevelt’s speech.
Remember that Brene teaches us that the noise from the stands (the outside world) says nothing about our worth and that worth is inside each warrior dusting the blood from their knees to fight another day. In my observations over these past 20 months, and speaking honestly since our last administration took office, the noise from the stands seems to have increased in volume. At times the roar of the crowd can be deafening.
As someone living with PTSD, noise in and of itself can be challenging for me. When that noise is coming from others, it may not hurt my ears but can hurt my heart. Do you all remember this little ditty as a child; “Stick and stones may break your bones but words will never hurt me”? Yeah, me too. It’s a bullshit ditty if that’s a thing.
What the ditty should go like is “sticks and stones may break your bones but words can break your heart.” We as humans are not immune from the painful words of others and those words can make us question our own worth. It’s painful to realize that when others say unkind words (and worse) that there is a subset of people who choose to behave this way intentionally. These are the people making noise in the stands.
The Worst Part of the Crowd
The intentionally hurtful people in the stands seem to believe that by pointing out the imperfections of others that they are somehow pointing out their own perfection. That is to say that if they can be loud enough about how their belief system, sexual identity, race, gender, and the like is perfect that maybe, just maybe, it means their own, differing lifestyle is better than yours.
This may have made sense tens of thousands of years ago; classifying each other by how they looked and behaved. This allowed our ancient ancestors to know who was in their tribe and who was an actual threat. Yet as language and thought developed, currency also developed, and all of a sudden these cheap shot demographics became a sorting of worth. You need not look further than slavery and the treatment of women or look into the holocaust as societal examples for the danger of this type of behavior.
At a societal level, in a power-over dynamic, fear is necessary to keep the power in place. Teaching people to fear other people is very simple to do: just sprinkle in judgment, divide a few resources you say are scarce, add a God of your choosing, and tada! you have power. This is also bullshit, yet remains very real for a lot of people today.
Power & Control
Personally, I’ve always hated power-over dynamics used for power and control. Using resources to restrict others fires up my soul up like nothing else. Using both covert and overt differences as the fuel to feed this power is the match before the gasoline that starts the fire. For those of us who refuse to use a power-over approach and believe in our bones that humanity is equal, deserving a life with choice, a life with resources to live day-to-day encounters can be maddening.
Also, personally, even as a woman I have never felt this attempted power-over as closely as I have this past year. I have been told hideous things from my father’s family regarding women and their “God.” I have heard messaging from almost every person in the legal system to not fly my “feminist flag,” in our country courthouse. I have even faced the local football team head-on about racism in regards to my son.
The words I have heard from others in the stands this past year have been ugly, to put it mildly. It took me almost a full year to realize the noise from the stands was not real but my worth is. I have stood in the ring, dusting blood from my knees, and forcing myself to face the hate but not using it to fight. Hate begets hate.
Stop Listening to the Noise
Here in the US, we’ve been struggling for over a year, but it’s been a lifetime for so many others. My son surely did not have his first encounter with racism on his freshman football team. I’ve been questioned as a woman countless times even before this past year began. And people in “power,” have been using others for personal gain at any cost (including human lives) for centuries. Yet outside of this power-over dynamic is a power within with a different dynamic. A power that demands that all humanity is treated equally and deserving of respect. A power that tells us that no matter how loud hate is, love can overcome it.
So which will you choose? Will you choose to continue to section off pieces of humanity based on what they believe, how they look, or if you feel you can gain control over them? I certainly hope not. I also certainly hope that if you are choosing not to use power-over, you are using power with and standing up for your worth, as well as the worth of others.
We are brothers and sisters. We are more alike than we are different. If you ever find yourself in the stands, adding your anger to that of the crowd, know that you can stop, walk to the ring, and help your sister stand.
People with autism aged 16 and younger and 40 to 60 have higher odds of being infected with COVID-19 than their neurotypical peers do, according to new studies. Researchers analyzed data from 16,406 people with autism in Israel’s largest healthcare organization. The team matched participants with a neurotypical person of the same age and gender.
The results show people with autism aged 16 and younger were 1.3X more likely to be infected with COVID-19. Participants with autism in the 40 to 60 age range had double the odds, the study noted. All results from this study appeared in the Journal of Autism and Developmental Disorders in July 2021.
“These findings suggest that people with autism or other neurodevelopmental disorders should be prioritized for vaccines,” said the lead medical researcher. “There is awareness towards the increased risk of morbidity among people with neurodevelopmental disorders, but I can’t really connect the link and say, ‘OK, they’ve taken our findings and turned it into a policy.’”
Research has just begun, which is why it’s uncertain why certain people with autism have elevated odds of contracting COVID-19. Researchers noted the differences seen in participants aged 40 to 60 could be associated with familial interactions, but there isn’t enough evidence yet.
ASD & COVID-19 Research Studies in the US
The number of autism-specific Medicaid waivers went up nearly 500% from 2004 to 2015, according to a new study. Many states use Medicaid waivers to provide services to people who may not be covered for ASD Services under Medicaid.
US researchers compiled a list of 269 different Medicaid programs focused on providing services to people with autism or intellectual disability. During this 11-year study, 26 states changed their Medicaid waivers to increase care options for people with autism. Nine states added a type of waiver called (waiver 1915C) specifically for people with autism, far outpacing new waivers for other types of intellectual disability.
“There’s a big difference in how states use Medicaid to meet the needs of people with autism throughout their life,” says Lindsay Shea, associate professor and director of the Policy and Analytics Center at the A.J. Drexel Autism Institute at Drexel University in Philadelphia.
ASD State Benefits
Three states researched in the study— Arizona, Rhode Island, and Vermont — do not offer any 1915C waivers, which was the main type of Medicaid program assessed in the study, thus they were not included in the study data. Arizona, Rhode Island, and Vermont use a different waiver, called a 1115, to provide long-term patient care.
Researchers also used data from autism prevalence studies to estimate the percentage of people with autism in each state who could potentially be served using 1915C waivers. The study estimated that Wisconsin could serve more than 20 percent of people with autism or intellectual disability through Waiver 1915C, while Minnesota could serve about 14 percent. For most states, the figure was far lower. The average state could serve an average of 4 percent of intellectually disabled residents or people with autism through Medicaid waivers.
ABA Therapy from IABA Consultants
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Spectrumnews.org, Community Letter
Health Services Research, July 2021
Over the past several weeks I’ve noticed a recurring topic of conversation within my tribe; “I’m exhausted from the last year and a half.” Each person that I speak with is talking about the COVID-19 pandemic and is in disbelief this is still our life. I keenly remember the start of the pandemic and how high all our emotions were running in fear of a threatening virus entering our world.
To still be dealing with that same stressor, with case numbers approaching levels from a year ago, exhaustion is an apt way of stating how we all feel. We’re not just dealing with a virus, we’re dealing with living our lives through an active, dangerous virus.
Trying to Find Peace During the Pandemic
With no end in sight, it’s hard to feel chipper and happy, let alone grounded. Peace can feel far away. I’ve heard a lot of “rinse, lather, repeat,” and “same shit, different day” comments in reference to what we are all walking through right now.
In the early days of the pandemic, Brene Brown spoke on her podcast, “Unlocking Us,” that she was just waiting for a checklist of what to do and once she had the checklist her recovering perfectionist could rest. Well, Brene, we have our checklist and the treatment fidelity is low. In scientific terms, this means we are not near containing the virus, which is incredibly frustrating.
As the virus carries on in all of our personal lives it can start to feel hopeless. The heart of the matter is this; we can provide good, accurate information and it’s up to each and every one of us to choose to follow it or not. We simply cannot control other people’s behavior.
Thinking About Others
I am going to pause here to let you know that not being able to convince a person to make a logical, kind decision (even in non-pandemic times) has been the bane of my existence. Truly. I have an aunt and sister who operate the same way. We see the systems for what they are. We see human life as incredibly worthy of equality and get frustrated (OK, sometimes livid) when decisions are made that move us away from equality and logic.
I am still on a journey of realizing that no matter how much I believe in making kind decisions that I cannot control other people and make them drink my preferred brand of logical, kind Kool-Aid. People are, in fact, allowed to make their own decisions and it’s incredibly frustrating when those decisions can potentially cause harm to others (please see the ongoing pandemic).
In light of being given a magical wand of authority, what spell could we possibly conjure in the midst of this climate of adversity? What can we do when a real stressor or danger is presented day after day with high and divisive emotions being publically shared?
It is easy to lash out at others, question their beliefs, invoke shame, or simply shut down into our own little world. I have been guilty of both at times. Neither has provided any long-lasting relief. But something else has and I’d like to share it with you.
An Attitude of Gratitude
I’ve recently written that I have been in the process of divorce, which is stressful enough by itself. The stress from the divorce on top of the pandemic took me to my limit. Early on I started following the work of Lee Harris. At the time I did not have more good days than bad, quite the opposite. Lee recommended a gratitude journal as part of a healing journey.
At first, this suggestion annoyed me. I’ve followed many different spiritual teachers for well over a decade and thought to myself, “I know, I know–an attitude of gratitude.” It felt like one more thing was being added to my checklist while my mindset was basically “what is there to be grateful for as my world is burning down?”
Lee gave a scientific reason, which at the time was just enough, that convinced me to begrudgingly start a gratitude journal. Lee explained that when you have experienced trauma your neurochemistry is depleted and leans more towards negative emotions. He went on to explain that writing five gratitude statements a day can change your brain chemistry. I was in need of rewiring and had already started acupuncture to rewire trauma inside my body. It felt right to rewire my mind so I started the journal.
At first, I wrote very small things like “I’m grateful for a Henry kiss goodnight,” “I’m grateful for Declan belly laughs,” and “I’m grateful for a dinner with my three boys.” I wrote moments each day that started to become a tiny light. As I leaned into this tiny light, I truly did begin to see more things to be grateful for regardless of the world around me.
I was able to move outside of the tiny gratitudes and see bigger things to be grateful for; a huge one being the incredible people that surround me. I call them my tribe but my family and friends are unmatched in their ever-present love of me (and my love for them). I am a lucky woman. In writing gratitude statements I was able to see that even when the world looks like it’s burning down around you, there is still more good than bad. Truly.
Staying Positive & Looking at the Good
My own external circumstances have not changed. I am still living in a pandemic and still dealing with a divorce while recovering from domestic abuse. I am still running a company during a pandemic. I cannot speed up any external circumstances beyond my control. They will stay, just as yours will stay.
I do not know when the pandemic will end. What I do know is that we can take care of our own hearts and minds even in stressful times. Especially in stressful times. I know what it feels like to want to wrap yourself in a blanket and cry the day away. I know what it feels like to scream in frustration at the top of your lungs. It’s OK to ride these feelings out. As they subside noticing what was beside you all along will shift your internal world. I promise.
The world outside is messy but I bet you have a few things to be grateful for. So, maybe even today, instead of arguing with someone for the millionth time about your stance on (masks, vaccines, the economy, etc) you could take a deep breath and call your mom. Tell her you love her. Can’t talk to your mom? That’s OK, call dad, a sister, a brother–make a phone call to someone you love. Say thank you. Then pick up the pen and find what you’re truly grateful for.
Last week I wrote to you about a new writer coming on to IABA to bring you content about autism and parenting. I wanted to let you know that my blogs have become my sacred space and I want to keep writing for me, hoping it serves you too. I believe my readers to be those who are looking to embrace their hearts and live their lives unapologetically and full of joy. I believe my readers are willing to look at pain, fear, shame, and guilt, and walk through it to bring understanding and shed light on what doesn’t serve them. This is hard as hell. It’s also totally worth it.
This week I want to write about my hope for you and me; our tribe. You see, my hope feels simple, yet I have felt damned from the time I was able to see it burning in my heart all those decades ago. I read a book to my boys recently titled “What Do You With An Idea?” In the book, a little boy keeps seeing an idea. The idea follows the boy and he ignores it. The boy is scared that other people will make fun of him for having this idea but the idea won’t go away. Eventually, the boy declares, “So what! This is my idea,” and goes on to learn that if you take care of your idea you can change the world.
I am not so bold to think that I can change the world with an idea but I am hopeful the world can change with collective ideas and actions. That we can all be as brave as the little boy in the story and honor ourselves and our ideas. Here is mine.
Choosing Kindness First
The hope and idea I have been living my entire life with is that humans can choose kindness first for themselves, then show it to others. That’s it. That’s my idea. I told you it feels simple, yet it ripped me apart for as long as I tried to embrace it. You see, I had a misconception of kindness and compassion because the world was telling me I was wrong. The world was defining what kindness looks like for a woman. Let me tell you what I was told. If you are a woman, maybe it even sounds familiar.
Kindness is noticing the needs of others. A good woman attends to the needs of others. Kindness is being polite. Do not speak in a harsh tone, raise your voice, swear, or insert your opinion where it may offend or even inconvenience others. Kindness is conforming; you do not want to make other people uncomfortable. Keep your appearance and demeanor in a way that does not offend. Kindness is being a polite little girl who grows up to be a good wife. A kind wife always listens to her husband. Men are, of course, here to protect us.
Fuck all that.
I read a book, “Brave, Not Perfect,” by Reshma Saujani, that talks extensively about the way in which society has indoctrinated women to be submissive. I shudder as I write the word ‘submissive.’ Ask my parents if they can put the word submissive and Jessie in a sentence. Nope. Not possible. Even though the US and many other countries have come a long way in some aspects, in many others it has not. We are still working against the narrative set by our white male forefathers over 200 years ago.
Shaping Our Future
Think about it. We have an entire political system that works on making amendments to words written exclusively by white men almost 250 years ago. While I would like to believe that there will be an awakening of some sort and that we are shifting toward a future for all, it’s not always easy to feel that way. When the pandemic hit and the tragedies in the black community came to our social forefront I thought to myself, “this is it, this is the bottom, people will wake up.” Some did. Some are using kindness and love to catapult us into a new future. Others continue to bring hate.
In speaking of my dream of kindness for all, the only perspectives I can write from are as a white woman and a mother in the US. I dare not and will not take the voice of the black community, LGBTQ, immigrants, or even men. I have not walked in their shoes and do not know what they were told to conform to or what they have experienced. But this I know to be true: every human being is born with the same worth. Let me say it again; baby, you are born worthy, you do not have to earn it.
As a woman, I tried desperately to earn value by following social norms while trying to fight these same norms. In my mind, I would stand bravely and push through a norm. Then I would fall back into shame. This constant push and pull was taking my life. This is how domestic violence overcame me.
Recognizing Abuse and Domestic Violence
Many people think that as a strong woman it’s not possible to experience, let alone live with, domestic violence and abuse. There is no way a strong or successful woman can live with abuse. I wish this was the case for me, but the truth is that at 34 years old I’m living without abuse in my life for the first time. Yes, I was strong and successful, but I also wanted to be kind and believe others were kind. That everyone is always kind at heart, even if they don’t show it. That when someone was abusing me they just needed a little more love to become the kind person they were born as. This would eventually spiral into, “why don’t they love me enough to stop!” Then I would get stuck. My version of kindness was killing me. Is it killing you?
In leaving domestic violence behind and working with an incredible trauma therapist, as well as having a loving support system, I am learning to apply my first belief about kindness; be kind to myself. This type of kindness takes from no one and offers a warm love to my soul that I’ve needed since the birth of my idea. I believe that if we are not kind to ourselves, which includes looking at ourselves (both the good and the bad), we cannot be kind to others. So I’m looking at myself and I’m asking myself to shed the narrative of kindness as submissive to become the woman I was born to be.
Cut the Noise Out
The world is a noisy place. When you stand up for yourself and what you need, remember that the crowd in the stands gets loud. You must be willing to block out the noise of the crowd to win the battle of your life. The battle to live free and unapologetically as yourself.
There is work to be done, systems that must fall, and people you must be ready to say goodbye to. We need to cut the noise out. But if you follow your heart home to yourself perhaps someday you’ll stand beside me in the ring. Perhaps we’ll build a kind world together.
Miracles and seen in the light, light and strength are one.