by Jessie Cooper | Aug 6, 2020
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.
Xoxo,
Jessie
by Jessie Cooper | Jul 29, 2020
Last week, I wrote about our collective back to school blues. I’m still living through this; grief is a process and I don’t know that I’ll be fine for a while. In learning about all who are impacted by COVID-19, including my own children, I feel grief. Last night, I spent almost two hours on the phone with my aunt talking about homeschooling. In my heart, I want to pour every inch of my soul into Dametrius’s education. Also in my heart, I’m grieving that he may never know “normal.” From this paradox, I actually see a piece of myself. I’m going to share it with you.
That Nagging Feeling
Throughout my lifetime I have always had a nagging inside of me. The nagging says to me, “this isn’t it,” as I navigate life. While many people may equate this to anxiety and unsettledness, I know differently. This nagging inside of me is a combination of my knowledge and experiences and when I follow it I always unturn a new truth. The truths I find run the gamut from personal to professional but all of them guide me.
You see, I see the world differently, and when I follow the nagging feeling I can unpack both the loving-kindness and the lion inside of me. I think everyone has this nagging feeling inside of them and when I read “Untamed,” by Glennon Doyle it was confirmed. You may not be a lion but you know what is inside of you far better than anyone else in the world.
If we collectively listened to these nagging feelings, we could challenge ourselves and our leaders to unwind from a world based on fear and build a new one based on love.
So, back to my nagging, that piece of me that pushes me. My internal nagging has moved me through every stage of my life. It’s like a path I walk along, stopping for a while at a few spots to enjoy, fight, question, and then move on. I often meditate and see myself on a path with a deep light at the end. I know I’m walking toward that light in this life and not towards death.
During the beginning of the COVID-19 crisis, my nagging had me under its thumb. I sat in the middle of my beautiful home, with my dream career, 3 beautiful children, husband, and dear friends and I was utterly confused. How could this not be it? I had to sit and take a critical look at my situation to discover what was ‘wrong.’
What is Normal?
I was living in suburbia because the world had told me this was the goal and I listened. The world doesn’t know have my knowledge or experiences, so it occurred to me that I have been listening to the wrong authority for most of my life. Shit. Well, once I knew that I was listening to the wrong authority, a mental pandora’s box was opened in my mind. What else had I been believing as gospel because society told me it was so? Shit. Again. How can I unpack what is truly me and what the world is telling me is me? How can we all do this? And if we all do this, can we actually build a new world?
Deep inside of me, I believe the answer is “yes.” We can change the narrative. We don’t have to keep living in a world built on the foundation of broken systems and systemic disadvantages. There are solutions to our problems and those solutions are in our hearts. Believing in the goodness of people as a whole is the light I see in my meditations–where I want to go. And I want you all to come with me.
In order for me to honor my own nagging feelings, I had to thoroughly unravel my life. I sat with myself and asked, “well what now?” Answer number one? Get the hell out of suburbia, you hate it here. While a great many people love the suburbs, I am not one of them. I need the country like I need air to breathe.
I also need my sister and my family. Like, I really need my sister and family.
I buried both of these truths while I built a business out-of-state and settled into the suburbs. So, I asked my team at Instructional ABA Consultants, “Can I move home to Ohio and still be a good leader?” I got a resounding yes, followed by a fabulous discussion about what all my leaders needed in their own environments to thrive. They shared their feelings. I had no idea what most of my team really wanted!
I hope with all my heart Ingrid makes her way to Paris while running our company! I know that woman can do it. Once I got the resounding message of “it’s OK, we’ll support your dreams because you are honoring ours,” I told my husband. His feelings aren’t there yet, but he’s working hard to find his own truths so when I change things up it won’t be too hard for us. He told me (lovingly) that if Ohio makes me happy and I need the country he’ll follow me there. I know we’ll struggle through this as he finds his own truths and I am so, so grateful that he’s standing beside me.
Saddling Up & Moving to a Farm
Once I realized these personal truths, that life could go on, I started looking for farms. And do you know what happened? We bought a horse farm. A fricking horse farm!* A realtor was supposed to line up properties for us to see when we traveled in June. One night we got sent information on the farm we ended up buying. I pulled the info up and if I had drawn a dream home when I was five years old this was it!
The universe honored my newly discovered truths and literally planted a 3-acre horse farm in my lap. The kicker? It’s only twenty minutes from my sister’s home! My dad agreed to drive over and see the property and within 24 hours, against all logic, we bought the farm (literally). It makes no sense! I can’t explain it to anyone, yet my heart is telling me loud and clear to go for it. For the first time in my life, I’m saying yes to my true feelings and believing that honoring them will guide me through all odds.
After we made the choice to move, a lot of other factors have come into play, as other factors tend to do. When you make a big decision it impacts everyone around you. I will deeply miss my dear friends here in Naperville. I’m grieving for my dear friend Dana who has been raising Henry and Declan for the last three years while Martin and I work. I don’t think kinder soul than her exists in our world and when she finds her true feelings I’m sure angels will sing.
Living two states away from her won’t be easy, yet I know I’ve gained a sister through our time together. It’s hard to change course, to follow a knowing beyond ourselves, but I know that the light promised by following my true feelings is real. Yes, I’m sad to leave and yes, I know that in following my path I’m honoring myself and getting ready to light the world on fire. To do this I need the country, quiet, and family.
On my farm, I’ll get to truly be myself. I will joyfully get eggs each morning, grow a garden, can food for the winter, sew, sit on a porch swing each night, and swim in the love of my family all around me. I will get closer to nature because I don’t like the accepted ‘speed’ of the modern world. I might even write letters to my friends. It’s a mystery to me what day-to-day activities will look like, which makes this unplanned future even more exciting for me.
I know to be true; when I honor myself I honor the world and the same is true for you. Your truth is probably not a horse farm in Ohio. Your truth also isn’t what the world has been telling you to do.
My aunt in Colorado sent me a quote, so I’ll leave you with this, “Never, ever be afraid to make some noise & get in good trouble, necessary trouble.” – John Lewis
Xoxo,
Jessie
- *I can’t bring myself to drop the F-bomb in my blog. Maybe I’ll get worked up enough someday…
by Jessie Cooper | Jul 24, 2020
Last week I wrote about a new chapter in life for me. I’m so excited to be able to share this with you as it unfolds. I’ve got a lot to unpack, reveal, and share. This week for my blog I want to take a side step into my work and experience as a mama as we all make decisions for the fall.
This past week has been a collectively hard week for every mama I know. Across our country schools are announcing what they are choosing to do in the midst of COVID. Emotions are high for a variety of reasons. No emotion is invalid and yet for the space of this blog I want to be clear on one thing. If you are in an emotional space where your fear is expressed by lashing out at others this blog is not a space for you today. Unfortunately, I’ve been on too many Mom Groups who have behaved unkindly to each other and teachers because they are operating in fear. We are all afraid at some level. These are new times. I’m asking that my readers take a collective deep breath and hold space for each other’s fears and don’t take those fears out on each other.
Okay. Whew, now that we’ve cleared that up, I’m ready to write. As I’ve said this past week has been a rough one. A lot of what I’m seeing is defeat and despair. We’ve all been collectively navigating COVID since March and I think the true wish is that we would be farther along. I know a lot of people are wishing that all the efforts made during Shelter in Place would have taken us back to a reality closer to pre-COVID. Our truth today is we are not going back, and neither are our children any time soon. That in itself is such a hard pill to swallow.
Now there are a great many valid things to be frustrated about as to why rates of COVID are not contained in the United States. I honor those deeply. However, I don’t believe me listing them will help anyone personally. My reality is, alongside many, that Americans collectively could be making some better choices and those who do not have the ability to make their own choices (think shut in’s in assisted living facilities or our children) could benefit from our better choices. Until we’re able to get to a spot where we are collectively dealing with the virus, we’re left to individually navigate a world with new limitations. It’s scary and sucks plain and simple.
A large part of what I see weighing on the hearts of so many parents is what to do in regard to school this fall. District by district different choices are being announced. The choices so far that I’ve seen are entire remote learning, partial weeks, or full weeks in school with the option to opt out for remote learning. There are vague statements about face coverings and sanitation procedures. What we all want is certainty and I’m sorry to be the one to write this; I don’t think it’s coming. This year is going to be all about making the best decision possible for our own children or grappling with the reality that the decision is beyond our control.
My simplest advice is give yourself and your friends grace
So, what can you do? What choice can you make for your children in a pandemic? I wish I could tell you the best answer, to give you that certainty but I can’t. I don’t have this for me. I can give you my advice, the best I have today as a mama and educator myself. My simplest advice is give yourself and your friends grace. To realize we are all in this together do the best we can. My next advice, if it’s at all possible for you, is to choose the education plan that creates the least amount of change for your child. I say if this is possible because there are many families who have no choice in this. There are schools that are announcing all e-learning regardless and families who have to send their children to school because they are working. If the choice is beyond your control, then focus on what you can control. And, for the families that will financially suffer through this, I am so sorry. I wish this was not the case for you. I realize I’m incredibly lucky to be able to choose what I want for Dametrius this fall because he’s an older child and I can still work if he does e-learning. I’m also lucky because if he were younger I could afford extra childcare. I know this is my privilege.
Ok, so back to choosing the least amount of change for your child if that’s possible for your family. I believe that in coming out of Shelter in Place what we hoped for was some normalcy following the restrictions. Currently that isn’t happening and so our nervous systems are overloaded with the ever changing information and choices. It’s wreaking havoc on all of us. I literally just told my husband he couldn’t ask me to do things today because I’m overloaded, then I asked him to cook dinner. Martin responded, “so I can’t ask you anything but you can ask me?” I paused, then a deep sigh, “yes that’s exactly what I’m saying & I have therapy at noon.” God love him.
If we chose an education plan for our children that would remain the same regardless of restrictions ever changing, we can eliminate this nervous system overload (hello anxiety) and create some calm. By choosing a schedule that you will least likely have to change for your child you can eliminate some nervous system overload for your whole family.
Keeping children with ASD in mind
I also want to take a moment and speak for children with autism. Because, you see, constant change is harder than it is for neurotypical children. My recommendation to create a stable schedule triples when it comes to children with autism. The ups and downs of every changing schedule is a ton for them to process. If you are a parent of a child with autism I would strongly recommend to rely on therapy schedules and clinic settings as the primary structure for your children. We are ramping up our own programs in Castle Rock, Naperville, and opening up a South Side Chicago location this fall to address this need. These won’t change in the midst of COVID and will provide a wonderful way for your children to continue to have structure, socialization, and make progress. This was true prior to COVID but even more so now I think these clinic structures are important.
Okay, so now we’re gone through the choices. The limited ones we have. You’ve heard my recommendation to limit changes the best you can. Now what? Grace, grace, grace. These are not easy times. Collectively and individually we are all grieving. Downplaying what is individually hard for you does nothing to help us all through 2020. Remember I wrote about this before? Personally I’m incredibly upset that Dametrius won’t be going in person to high school. He is a beautiful person, new to our family, and I want nothing more than for him to make new friends and play football on Friday night. It’s not coming. I’m going to need to grieve this. Henry will not be making new friends, he’s stuck with us. I’m grieving this too. Declan, well, he’s 16 months (today!) and for that I’m thankful.
All individual fear big and small matter. Make the decision best for your family, give your great big heart a hug, and feel those feelings. Then call someone making a choice different than you and let them feel those feelings too.
Xoxo,
Jessie
by Jessie Cooper | Jul 17, 2020
In closing the last series I felt a sense of peace. Since March, like many of you, I’ve been struggling to sort out what’s happening in my mind and heart as well as process what is going on in the world. In Brene Brown’s podcast she mentioned that anyone who doesn’t answer, “how are you” with, “it’s complicated,” isn’t being honest. We are all collectively living in a time where we are scared, anxious, mourning and the like. Yet through our pain we are also offered the opportunity to heal. At least, I believe this to be true.
Prior to March this year I was still in a place where I believed negative emotions were something to be ashamed of and avoided like the plague. That I should just, “be happy.” While I was honest with honoring my own story, I wasn’t seeing pain as my messenger. I was just trying to make sure it didn’t happen again. I don’t know if this is true for other survivors but it is true for me. I’m very hypervigilant and can get overwhelmed by a lot of stress or noise in my environment. Each time I have a bad day I sit in my own head and wonder how I could do better and from that not experience negative emotions. I think we’re all taught this to an extent. If you don’t feel “happy,” the pharmaceutical giants are more than eager to write you a prescription. Now please don’t get me wrong, medication can be a wonderful thing for people who need it. I needed it during my postpartum depression. What I’m saying is that the messaging to be happy is very loud in our society.
One night during April I crashed. I sat in a bath crying to the sky. I couldn’t think my way into a happier day and declared, “what do you want from me?!” to who I believe to be God our Mother. Relief immediately set in. I felt so deeply that what was wanted was for me to feel. Feelings are meant to be felt. They are messengers telling us what is and isn’t Ok with us and our world. They aren’t meant to be silenced or problem solved away. I got it. No more planning to be happy, plan to live fully.
After realizing that my emotions were meant to be felt I’ve shifted into a very raw space. I’m being honest with you because I’m honored you log in every week and read what’s in my heart. I hope it serves you the way it serves me. From my rawness I’ve pretty well sat in vulnerability daily. It feels like being a walking bruise, no kidding. I’ve decided to give kindness to each wave of negative emotions, celebrate joy, and to live authentically from here on out. I know I’ve got a lot to learn about who I am, what I have to give, and what I want to share. I also know I’ve never been this excited or humbled in my life. I’m making every decision from my guide within.
In listening always to my inner guide I don’t know who I will find. Who will you find if you do the same? To me there is a lot of environmental conditioning and years of learning how to be in our society. I want to find my truth without that noise and in the same way I want you to find yours. I feel that if all of us took the time to lean in and find out who we were before the world told us who to be, our existence would change overnight. We could find our joy. We could listen to the pain of the world, hear it’s story, and provide guidance. I don’t know about you but I can’t hear when I’m not me.
Forging Ahead
Here is my promise to you. I promise to dig in and find me. To share my story as I undercover the conditioning that made me and the strength I hold beneath it all. From my strength I want to change the experience of children with autism. I want to eradicate gender norms. To be the badass woman in business I am. Just publicly now. I want to live largely and freely. In sharing my story I want to shine a light on your strength too. Who are you? What do you want? What’s holding you back?
I’m changing the narrative. I’m going to begin writing for those who are on a path to healing. For those who know pain. For our children. For the lost. For those who are willing to show up with an open or curious heart. So that all of us know we are enough, can raise our children to know their worth, and live freely. Because collectively, if we do this, we can change the world.
Yes baby, you are enough. I’m oh so glad you’re here.
Xoxo,
Jessie
by Jessie Cooper | Jul 9, 2020
Over the course of the last month and a half I’ve written to you all about imperfect parenting. Honestly COVID-19 has been a do or die for me. Prior to COVID-19 I was spending too much time on the seesaw of authenticity and perfection. It was exhausting. Since I’ve been home I’ve written to you about lying and stealing, putting down busy and picking up peace, understanding anger, and daddys. Yep, that’s it. That explains my COVID experience in a nutshell. Blog done. Just kidding. Today I want to end the series with a small essay on embracing authenticity.
Parenting Memos Are Shifting
Currently I’m reading “Untamed,” by Glennon Doyle. She says everything better than I’m going to but please let me try (also please read this book)! One of her chapters writes about parenting memo’s. In the 1950’s the memo was birth your baby then make sure they are seen and not heard. In the 1980’s the memo was birth your baby and continue on with wine spritzers and cigarettes. Fast forward and today our memo is birth your baby, then engross yourself with their every waking moment, and even in doing that you’re failing.
It’s a rat race. We are all losing. I remember when I had Henry I felt overwhelmed by him. Now a big piece of that was my own postpartum depression but another piece of that was feeling that I had all the scholarly knowledge in the world and could not keep up with the Joneses. There was/still-is so much societal pressure to be a perfect mama. But who are they? That stupid Jones family? Why the hell are we all trying to keep up? Personally I’m done.
In being home with my children since mid-March I was given gifts I will always be grateful for. The first gift is that by stepping into Shelter-in-Place I could not keep up my pace as perfect mama and authentic mama simultaneously. That struggle had to stop. The second gift was I was able to step away from the noise of society to think about what I truly wanted for my children and myself. My new reality was surrender. And when I thought I’d surrendered, I surrendered more. Through not having a society to keep up with or standards to measure myself against I was able to show up. Truly show up.
Here’s what I learned
The day-to-day decisions and rules I made for myself and the children didn’t matter. Really. How many grams of sugar consumed, screens seen, or books read did not make or break my children. Furthermore the “social” environments (music class, swim class, story time, etc) that I was beginning to run them around to also did not matter. Also, for me, social standards don’t really matter either. I’ve got some really wonderful core friendships and if I never see a cocktail party again I’m good. Really. In sheltering without my own “rules,” I found my children have natural interests. I knew this prior to sheltering, but only honored it when I wasn’t trying to be a perfect mama. This looked like observing them on a prairie path vs. structured art time. Sheltering took me into observation mode daily as I surrendered. My children know what they want to do and what they are curious about every minute of every day. I don’t need to create this for them.
In our home what matters is being seen and loved for who we are; my children, my husband, and myself. It’s my job now to honor who I am and be a model for showing up as myself. Not showing up as I’m told to be. By doing this I’m allowing my children to show up for who they are supposed to be.
I do not know what this looks like yet beyond messy. I know we’ll have to say, “no,” to a lot of old, “yeses.” I know I’ll continue the good fight to raise my children closer to nature than technology. I know that before I discipline I’ll seek to understand. And I know that I’m here to listen to my own soul so my children can listen to theirs. What we find on the other side of this journey is unknown. But us Topalov’s? We’re going to live fully.
My hope is that you and your family live fully too. Collectively, that we can all say goodbye to the rules that tamed us and show up for our authentic lives. That through this authenticity we can in fact bring healing, joy and a new future to our children and thus the world.
New birth memo: birth your baby, love them with your whole heart, let them fly and let them fall, while flying freely yourself.
Xoxo,
Jessie
