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.
It’s been a little over a year since I started blogging. I was asked to start blogging by my marketing team to bring relevant information to our families. I was secretly waiting for this invitation because I’ve always wanted to be a writer and felt ashamed while thinking about “proper writing.” The invitation to write for you all quickly became therapy for me. The perfectionism that was holding me back was put down and writing has quickly become my favorite part of every week (outside of basement snuggles and coffee…).
When I began writing the blog I was focused on the services provided by Instructional ABA Consultants to support families of children with autism. I also wrote as a mama of two young children and one adopted teenager to let all mamas (and papas) out there know they are not alone. That even someone like me, an experienced clinician and CEO, has struggled with motherhood, tiny humans, and teenagers. Raising other humans is no easy feat and it takes a village of support and love. My hope was that my writing created a space of belonging for parents of both neurotypical children and children with autism.
Finding Myself During the COVID-19 Pandemic
As the pandemic hit in early 2020, I was not only burdened with running a company through a pandemic. I was also burdened with sheltering in place, taking care of my children, domestic violence, and the end of my marriage. I’ve alluded to the fact that I am a survivor of domestic violence. What I have not told you, however, is that I am one of the too many women who were (or are) not safe at home.
For a long while, I did not want to write this because I was ashamed. It’s not easy to identify domestic violence, let alone leave it behind. I was also fearful that anything and everything I wrote or said would be used in court against me. That by speaking up about my situation I would damage myself. There is much I will not say until I am ready, but please know this: I was not safe in my marriage. Neither were my children. I hold no ill will toward my ex-husband, but I absolutely believe abuse deserves accountability and that we all deserve to be safe. Writing about healing, alongside a community of support, helped show me the way out. I hope someday my writing will be a candle for others.
Shifting into a mindset where I can speak up (after 6 months of trauma-based therapy and more love than anyone can ask for) showed me that my current focus is shifting away from the original focus of my writing. I want to be able to continue to explore my own writing while not forgetting the part of my tribe who need online support for their children with autism and parenting. In a gentle way, I found it to be true that the content surrounding autism and parenting should be given to a writer who is currently more aligned with this topic. I also wanted to continue writing personally as a way to heal from trauma and live a life built in joy.
How did I decide what to do?
New Writings and Blogs
As usual, when I don’t know what to do, I went first to my gut, then to my team (tribe at home) and asked what to do.
This month my company will be splitting the blog section into two tabs. The first section will be for autism-related topics and family support. The second will be my writing, wherever that takes us. It is my hope that both blogs serve each community that receives them by being relevant to their respective topics.
Professionally, I continue as the CEO and owner of Instructional ABA Consultants serving children and adults with disabilities regardless of funding source. We have a clear mission and a badass team. Personally, I’m embracing the author I’ve always wanted to be and hoping my words bring peace, hope, joy, and connection to others.
May we all be happy, healthy, safe, and free.
It’s Monday morning and I’m sitting in my office, outside of the house for the first time since March. I also dropped off my son, Dametrius, at in-person school at 7:15 AM today. After three weeks as my son and 10 months of e-learning, my baby finally walked into school. Up until a year ago, I thought the first baby I would give away to school was Henry; it sure doesn’t get any easier, even when they’re 15.
So it’s a new chapter in our lives; Dametrius is out of the house for school and I’m finally strong enough to pick up my writing on a Monday morning and leave my little sons with their grandparents. As many of us are recovering from trauma, leaving the safe space we’re created is hard stuff. It’s also incredibly brave.
The last time I wrote to you I shared that collectively we are all walking through trauma during the pandemic and that when trauma comes change is born. In re-reading “Untamed,” over break, I was reminded that there are two different types of pain. Glennon writes that the first type of pain is the fear that is born from working against the truest form of ourselves and the second type of pain is choosing to burn a life keeping us from the truest form of ourselves to the ground. This resonates with me deeply, I’d like to share more.
Dealing with Types of Fear
I’ve written to you about becoming a love warrior over the past six months; a person who knows in their bones they are good and true despite what the world is saying about them. I don’t know how much this still sits well with me today. I think there is such a truth to this, yet so much more to uncover.
You see, the first pain that Glennon writes about are the fears we all get lost in throughout our lives. It is the fear that propels us to abandon ourselves for the sake of others. The fear that tells us that fitting in and being accepted is the goal of life and once we finally listen we’ll be happy. This fear is a Goddamn liar. I listened to it for far too long.
As a woman, I’ve been raised to believe many lies and am lucky enough to have parents who never treated me differently because I was a girl. My mom is a feminist through and through and my dad is a champion of women. This gave me the courage to know that I was born equally but it didn’t give me the knowledge I needed to fight society as I entered into it.
I think that was part of my fear of sending Dametrius to school today. You won’t meet a wiser, kinder soul than my son Dametrius and my child has walked a path many of you cannot imagine. He’s still himself every day. “Don’t you lose you in there baby” I told him, “don’t fit in.” Me? I know school is where I began to lose myself and built up a series of lies from society from there on out.
Overcoming Personal Fears
Growing up, I believed from a young age that how I looked was the first key to acceptance from my peers. I developed an eating disorder in high school to lose the weight I thought was holding me back from fitting in. I believed that finding the perfect boyfriend-turned-husband would show the world how lovable I was and that marriage was the ultimate community and personal goal.
There’s more. I believed that I needed to be polite, accommodating, and put my needs second to everyone, including my children. I believed that the more I looked and behaved in a way that matched society norms the happier I would be. This is the first fear, this is what took me down the road of abandoning myself for so long.
I wrote to you all that I made the choice to buy a farm in Ohio this past summer in order to follow my true path. In reality, this choice was delivered to me from the universe to burn every fear I had to the ground and build a life worth living. My farm, family, and God have saved my life. When I couldn’t choose it for myself the second pain was chosen for me.
This past fall-into-winter I have done something I have never done before; I felt every single piece of pain I was walking through. I held it, felt it, breathed it in, and let it have a place. It was not pretty. At best it was animalistic. I spent hours crying on the floor while my babies slept, screamed to the skies while walking in my pasture, and succumbed to the raw pain that was needed to come back home to myself. I’m just now starting to see the clearing through the trees, and this clearing is not from the world: it’s from myself saying, “welcome home.” I’ve allowed this pain to shake me to my roots and began believing that the only thing that brings true joy is belonging to ourselves.
Someday I’ll tell you about the life event that has caused such a change in me. I’m not ready yet. What I am ready to do is tell you all that we can in fact do hard things. That this past year has been a collective of grief through the pandemic and personal pains. What pain will you choose?
Choose Your Pain and Come Home
Will you choose the pain and fear that tells you to succumb to the expectations of others? Or will you choose the pain, no matter how raw, that brings you home to yourself? If you continue to follow me, know this; I do not give a damn about what others think of me anymore and will ask myself “am I losing myself,” every second of the day I make choices. I will not put myself second just because I was born a woman or question the skills, talents, gifts, and passions that pulse through my veins. And I will not care if I make you or anyone else uncomfortable because I refuse to be uncomfortable with myself ever again.
We all have collectively been stopped in our tracks because of the pandemic. I believe I asked myself the question “Jessie, are you going to keep living in the fears of the world or come home to yourself?” Right now I’m coming home to myself and leaving the pain behind.
Readers, what about you? Will you walk with me? Would you like to try? I can help you to stay true to yourself. I have walked through pain that I thought was deep enough to kill me and through feeling it I was born. It’s worth it, coming home.
In loving dedication to my sister-in-law, brother-in-law, mom, and dad who have all held me in their arms these past three months.
When you work in theatre, a common phrase is “go dark.” Leading up to a production, there are endless hours of work put in from the actors, tech crew, and directors. In order to give it their all, the entire cast and crew does not rehearse on the days leading up to the performance. That is “going dark.” I was in high school theatre when I learned this practice. My sister is a production manager at a private college and they still “go dark.” I think this is a fitting introduction to what I have planned for the next chapter in my life.
Always Learning in Life
Let’s back up a bit. I want to give you a full picture of why I so dearly need rest to prepare for the next act of my life. We can rewind to, dare I say, high school? You see, this is an important chapter in my story.
I learned of autism for the first time in high school. I was in a sociology class and my teacher was introducing us to individuals with autism who are savants. This was the first time I heard a tiny inner nagging. “Autism” the nagging said, “pay attention.”
Later that year, a co-worker at Subway (I have held a lot of jobs) began talking about home-based therapy for children with autism. The inner nagging pinged me again. I had never met a person with autism and there was no clear sign in my life that I was going to work within the autism field, yet something was telling me to pay attention.
At the time I was actively working on a theatre career (Fun Fact: we won state twice during my time in leading roles!) and dragging my family to California. I was also still deeply suffering from abuse at home and digging for a way out. My digging looked like the wrong crowd, not respecting myself, and some partying. Yet still, I remembered the nagging more than anything.
Focusing on Childhood Education
Fast forward to my early 20’s. I had given up my dream of Hollywood and was diving deep into early childhood education. I wanted to learn how the environment shaped us and how to give every child a chance to realize their own potential. I did an honors thesis on chronic absenteeism and related factors, studying the impact of race, gender, social-economic status, and home environment. I also worked in a preschool at the Ohio State University.
At the time, autism was not being appropriately diagnosed and there were clearly children in my room who had autism but no services. My dear friend Mistique Henry (you guessed it, Henry’s namesake!) asked me if I wanted to work in-home doing therapy for a child with autism. The nagging feeling was there again. It told me to go and to learn. It was here that I learned about Applied Behavior Analysis and made the choice to come to Chicago to get my master’s degree.
In 2009, directly following college graduation, I packed up my puppy, a bad boyfriend (no joke), and the rest of my life. We moved to Chicago. I dove into the world of autism, behavior analysis and the discrepancy of services in Illinois for the next two years of my life. I also dumped that bad boyfriend.
I worked on the Illinois Crisis Prevention Network under a wonderful mentor Kim Shontz during research for my master’s degree. She’s an amazing leader and I’m lucky enough that her son, Ken Shontz, now serves as our Clinical Supervisor for Adult Services.
On the Crisis Team, I worked with individuals with disabilities who engaged in dangerous levels of problem behaviors. Ages of the individuals ran from early childhood to the elderly. I had a 100% success rate with my clients by using ABA, as it was designed. I had more luck with some amazing BCBA supervisors (Kristin, Alex, & Yours!!) who guided me.
The science during my master’s studies was all I ever wanted. It let me use my knowledge that each child is a unique gift. I was there to find out what wasn’t working in their lives. This “not working” is a learning style and ABA breaks down the learning barriers so that the person with disabilities no longer needs to use problematic behaviors to get their needs met. Turns out, it’s a missing skill. Look at our nation today and I’ll tell you loud and clear, “there’s a missing skill.”
The Crisis Team & Anger
I eventually found myself on a Crisis Team and found out why I kept getting nagging thoughts and feelings about autism. Simple, right? Wrong.
Once I found out why problem behaviors occur and how to change them, I found a new problem to solve; access to therapy. In Illinois, children with autism and adults with disabilities were (are still are) discriminated against based on their funding source. ABA companies back then (and some still today) look for high fee schedules from private insurance. If you’re a mama with a child on Medicaid you’re not getting ABA service. It was horrible. So, I got pissed.
Remember I told you a few weeks ago that anger is a messenger. With this anger I founded Instructional ABA Consultants. We are standing strong 8 years later and have NEVER turned a child or patient away based on funding sources. While we still can’t bill Medicaid (Illinois needs to make some noise here, we’re so close!) we accept Waivers for Medicaid families, do financial hardship cases, and have created grants for families who can’t afford insurance.
And you know what? On a Proforma scale we are at the top 90% of profitable companies in our industry. Want to know why? We’re treating our clients and employees with respect and care. Everyone is equal at IABA.
I’m blessed with a leadership team that supports my vision, therapists who provide top of the line ABA therapy, children slathered in high quality ABA and sprinkled with love, and that nagging is still calling to me.
I wrote to you last week that my nagging is taking me home to Ohio on our (horse) farm. I also told you I’m getting ready to light the world on fire and get in some good, necessary trouble. You see, I got pissed again.
The Coming Storm
Let’s fast forward to today. You can see that I’ve been working my ass off for well over a decade, following the guidance to support people with autism. Every hard-working minute is well worth it. And yet, my professional nagging tells me this, “you aren’t done until to have a disability is not to be disadvantaged, and to do this you cannot do this alone, you need more support.”
During COVID, I took those nagging messages the wrong way. I thought I needed investors to help grow my company larger to meet this mission. I went through talks and a high-ticket price was dangled with a clear message, “sell out, let us water down treatment, and pump out clinics to create investor returns.”
My thoughts about those type of offers: Fuck no (told you, I’d get there). In “Untamed,” Glennon writes a passage that I believe has the answer to the dysfunction of society. Glennon tells us for every disadvantaged group you can follow the profit down the stream to find out who is making money. It’s sickening and it’s true. Money is driving our society into a future I want no part of.
So, I’m rewriting my narrative and, in turn, autism’s narrative. I’m going to go toe to toe with Wall Street, to tell them, “not on the backs of children with autism.” The money that insurance provides for ABA therapy should be going to the children to improve the companies that serve them. Period. If you bought a yacht with ABA money, I truly hope you sell it and open a school for children with autism in Africa, South America, Bulgaria—I don’t care, just give it back.
Of course, you should be paid for your good work if you own a company. No issues there and I think more women need to hear this is OK. What’s not OK is to dilute treatment to create as many billable hours as possible for the sake of higher profit margins. You can fully give your company what it needs to thrive and pay yourself if you work hard and are true to your goals. Promise.
In order to follow my nagging and anger, I discovered what I must do. I’m building a future where BCBA owned ABA companies can outperform any corporate structure. A system where we can band together to change the narrative for children with autism and adults with disabilities. During this journey I’m going to meet thousands of people who want to change the narrative for their little piece of the world.
What ignites your inner fire? What injustices do you see every day? What is your story telling you?
I’m going dark for two weeks. After that it’s lights, camera, action. Baby, I’m going to build a brand-new world.