by Jessie Cooper | Apr 29, 2020
Over the last six weeks, you’ve allowed me to provide you with guidance during the COVID-19 outbreak. I’m so very grateful to be able to give you my take as well as speak my own truth. Last week I wrote about fear and the stories we make up behind those fears. For me, well before COVID-19, this river ran deep. It took both facing my fears and pausing during Shelter in Place to truly shine a light on them.
In calling out my fears and the behaviors around them I was able to see myself clearly. I’d like to share some of my experiences with you. I’m hoping that by doing this you are able to relate, unpack your fears, and authentically show up for the beautiful ride we call life.
Calling Out Our Fears
Sheltering in Place has been hard for me for many reasons. We talked about my fears related to COVID-19 in my last two blogs. What I haven’t talked about is that during Shelter in Place I have been forced to sit with my own thoughts on a larger scale. Like everyone else in the world, I am stuck where I am, with who I am.
For me, the first phases of Shelter in Place produced anxiety due to fear of the unknown. I spent a lot of my energy navigating the new normal, both at home and at work. This piece of anxiety was hard, as I was unable to control or even predict outcomes. On a surface level, however, it was not a deep fear; it was a guide to larger fears that would come up for me.
I’m wondering if this is true for a lot of us? Do we all have surface-level fears pointing to deeper fears? And if we only ever respond to the surface fears, do the fears underneath live on?
Let me speak for me. My primary surface fear was being unable to control the outcome of COVID-19, both in my home and my business. My fears first bubbled over in my perfectionistic tendencies at home (and a bit at work). At home, this looked like keeping a perfect house. I mean, I love a clean home (definitely more than most people), but when I’m cleaning to be perfect… it’s different.
Usually, I’m just jiving and creating a space I enjoy. At work this used to come out in micromanaging. Thanks to our current team, who I could not be more grateful for, I can’t really jump in and do this anymore. They would call bullshit and thank God for that! So this is my surface. I’m afraid of what I can’t control, so I will try to overcontrol what I can. Does this speak true for anyone else? Do you have surface behavior you engage in when you’re afraid? Does your perfectionism come out?
Avoid Feeling “Out of Control”
Once I can see what I’m really up to, I usually find I’ve been doing a heck of a lot of things to avoid feeling out of control. Perfectionism is one of them. Numbing activities like too much chocolate, wine, or Netflix is another. Forcing myself to be overly busy is a third. I do these things in order to ignore what my make-believe fears are telling me. And make-believe fear is always telling us we are not enough. It’s a tricky, awful fear but also a piece of the human experience.
So, what came up for you? Looking at your past month during Shelter in Place, what have you found is beneath your fear(s)? Are you overachieving at home to avoid it? Or are you purposely underachieving to try and relax? Are you really OK with everything that is happening in your world? All of your answers are OK. What isn’t OK is to notice that fear is driving you and to continue to allow it to be in control.
What can you and I do to fight these fears? Honor them. Honor the fear and what it’s telling you because even make-believe fear can guide us all. Fear is telling us very loudly that we are not OK. We have to realize that something lives beneath our fears that needs care and attention.
In speaking for myself, I have felt very deeply, for a very long time that what I am doing is not enough–that somehow I am wrong. It took sitting in place during the COVID-19 outbreak to finally be able to say this out loud. This comes from a traumatic childhood and being a survivor of domestic violence. Harmful circumstances occurred around me for a very long time and I wanted to prove I didn’t deserve them happening to me. That’s why in times like these when I cannot control outcomes, my fear tries to tell me I’m not enough. That I’m not safe. But I’m grateful for this fear and here’s why.
Learning from Fear
When my make-believe fears are present and impacting how I behave, it’s a signal for me to pay attention. To discover what I’m really afraid of; how I haven’t been honoring myself. It’s hard to write this. To write that I struggle with perfectionism and am a survivor. But I know that by saying this I’m honoring the badass woman I truly am. That no one deserves to be at the hand of physical violence. That we are not stories narrated by our fears.
I know this to be true. You are perfect just the way you are. Human, full of failures & flaws, and maybe some awesome eclectic tastes. But you are worthy of love, belonging, and a life you adore. I hope by sharing this piece of my story that you are able to look at your own. To get curious and ask yourself why you are afraid. What’s behind it? That in naming your fear and owning your story you are able to honor the beautiful person you are. Perceived imperfections and all.
I hope this piece of my story guides you to honor yours.
Xoxo,
Jessie
by Jessie Cooper | Apr 22, 2020
Last week in my blog I wrote about compassion and grace. I hope it served you. After identifying my own fears, I realized that so much more was going on behind them. It took guts to accept this followed by a bit of hard work to find what was really behind them.
Let me backtrack for a minute. There is nothing wrong with fear itself. Fear is a very useful instinct and absolutely necessary to survive. Fear tells us when we are in danger(remember, the amazing Tara Brach teaches about this). Fear told us over 10 thousand years ago how to survive; it’s instinctual. The problem with modern-day fear is it often becomes a story we’re making up versus a true danger. Sometimes it’s a little bit of both. So when we go behind our fears we have to sort them. Is the fear real, a story, or a mix? How do you know what type of fear you’re dealing with and what do you do with the fear once it’s named?
Recognizing Fear
Let’s start with the types of fear we deal with as humans. The first is physical fear within our control. This is a lion charging at you, a car that ran the red light, and anything else that could cause you physical pain or death. Our limbic system kicks in when we are dealing with these kinds of fears. Fight, flight, freeze. Our body ramps up to tell us how to respond and protect ourselves. If we have the right resources in that moment of fear (ex: brake pedal for the car coming at you) we can protect ourselves from the threat. This fear is super helpful and protective. However, our other fears like to dress up like physical fear and, in this guise, tell us they too are helpful. Let’s talk about them.
The next type of fear is fear beyond our control. This fear is a threat that comes into our lives that we cannot control. There is no brake pedal for this metaphorical speeding car coming full speed at you. These fears are almost always medical or life-altering in nature. These fears are a cancer diagnosis, heart disease, a baby born too early, divorce, being fired, a house burning down, etc.
These fears present themselves to let us know they are there. We usually have some options available to us to address them, but fears we can’t control often have outcomes we can’t control. When you or a loved one receives a cancer diagnosis, you/they can choose the treatment course with medical guidance. But what we can’t control is how the body will respond.
If you are fired from a job you cannot control working there again, but you can find new options for employment. These fears hurt. They just do. We see them, do what we can, given the resources available, but the outcomes are almost always beyond us. Not being able to control an outcome when a threat is present is hard. COVID-19 falls right into this category.
Rejecting Irrational Fear
This leads to the last type of fear; make-believe fear. This is the sticky, icky fear that we, as humans, create to try and cope with physical fear and fears beyond our control. It’s the story we’re making up and it causes anxiety. Make-believe fear tells us it’s helpful while driving us absolutely crazy at the same time.
As an example, let’s look at sanitizing per COVID-19. The truth is there are good sanitizing measures we can all take to reduce our exposure to COVID-19. A story you may be making up is that you need to sanitize your high touch areas 10 times a day and that if you don’t everyone in your family is going to contract COVID-19. Let’s look at another one. If you are afraid of how you’re parenting during COVID-19 you might tell yourself you are failing terribly. In response to this, you either step it up or scale it back to validate the fear. In both cases, you’re exhausting yourself mentally and putting yourself down. The reality is you can’t control kids being home 24/7 but you can just show up and do the best you can.
Is this making sense? Let’s keep it simple. Each fear we hold that is a story we’ve made up is not helpful or kind. This type of fear convinces us that if we behave a certain way that the fear will magically disappear. But it’s not gone–it’s amplified! The fear is driving the car. To put this fear down for good we have to name it, shine a light on it, and stop engaging in the behaviors associated with this fear. When we stop engaging in the behaviors associated with the fear it always hurts. That hurt sucks but is far kinder than tearing ourselves up in behaviors to avoid outcomes we cannot control. And in that hurt is a truth about what we really, truly need.
Using Fear to Stay Safe
Each story we’re making up is unique to all of us but as humans, it’s usually along the lines of needing love and belonging. To be seen. To be accepted. To be safe. Here’s the thing. We can be safe by identifying real fears versus stories. We can be seen by others once we see and know our authentic selves. Being accepted. That lives in your own heart, not anyone else’s. But when you love and accept yourself you can honor what you need from others.
This is my ask beautiful ones. Take this week to find some of the stories you are making up. Then put down the behaviors surrounding those stories and pick up some behaviors that show yourself some major love. Find a way to take care of yourself and through this, I promise you’ll be able to care for those you love too.
Xoxo,
Jessie
by Jessie Cooper | Apr 14, 2020
In starting this blog, I wanted to create a space for parents to come to know they are not alone. In the midst of COVID-19, I think this space is super important. On any given day we are all experiencing the ups and downs of isolation as well as a variety of fears related to the virus. I’m struggling with this just as much as anyone. When people ask me how I’m doing my honest response is, “no two days are the same emotionally.” They just aren’t. I think this is true for a lot of us. But I think what is also true for a lot of us is that it’s hard to honor the struggle.
When a physical threat is around us it’s so natural for our fears to take over. Just look at the toilet paper crisis. We’ve all got this fabulous limbic system I wrote about in reference to toddler years deep inside us. Fight/flight/freeze is an over 10,000-year-old response. Just search, plug in and listen to one of my soul sisters, Tara Brach, for more on this. Our brains are predisposed to scan for threats to our physical bodies and respond. Tara calls it our “our caveman brain” and when thinking about toddler tantrums it gives me a little smile. As an adult in our modern world, it’s a response that’s harder to deal with. We, of course, need to know when we are in physical danger. But when it comes to an invisible predator as well as all the fears related to it our brains go into overdrive.
Mentally Dealing with COVID-19
Think about it. COVID-19 came to all of us in waves. First, we heard of the virus as being specific to Wuhan, China. Then we saw it was spreading but not to the United States. Our government turned a blind eye as did many Americans thinking this isn’t “our problem.” Then, as cases started to increase, individuals who were watching the world began to panic. Maybe you were one of them? We saw you stock up before any of us. I saw my husband do this. Finally, in a series of reactions our governments acted and our worlds all halted in almost every aspect.
In each of these waves, we as individuals were trying to navigate the threat from wave to wave. Fight, flight, freeze? There is not a wrong response. How can there be? You and I were just doing the best we could as information came to us. For professional reasons, I’ll leave my views on the government out of this piece.
When we got to the final wave of Shelter in Place, a new series of threats came. We worried about working, childcare, access to food, our loved ones, the virus entering our homes and so much more. As a business owner, I worried about this for myself and my employees. As a woman, I worried about my family, my friends, and our world. I’m still having a hard time sleeping. I am scared, I know you are too. But here’s what I want to hold space for. What I think our community really needs to hear: your fear(s) are no greater or less than my fear(s). This is where we can all use compassion and grace.
Handling COVID-19 with Compassion
I’ve heard countless friends not want to air their frustrations surrounding COVID-19 because their frustrations don’t seem to compare to what other people are struggling with. In reality, a very small percentage of us have someone close to us who is affected. If you are in that small percentage, please know that you are my sisters and brothers. I see you, I feel your pain, and I’m so sorry.
But for those of you who have not lost a loved one, seen someone get sick, or lost essential needs like housing or food, your fears are still real. It’s OK. You can look at them, hold them, and still give compassion to the person suffering more. Honestly, I think this is the only true way this is done.
I learned a little phrase from yoga, “the light in you is the light in me.” I think it is also true that the darkness in me is the darkness in you because we are all human. And as humans, we all feel pain, fear, and have days–even years–where we are not our best selves. But if we push down those fears and mistakes without giving ourselves permission to have them we are not being our best self. We’re making ourselves miserable and unable to see each other. To see the other we first have to see ourselves.
So here’s what I suggest. I suggest everyone taking a collective deep breath and honoring our fears. If we don’t label our fears because we’re afraid they don’t hold a candle to what everyone else is going through, we can’t release them. It’s that simple.
Working Out Your COVID-19 Fears with Grace
Here are some of my fears. I’m afraid to go on walks with my children or grocery shopping for fear of bringing the virus into our home. I’m anxious every time we get a package if brought inside within 24 hours. I’m afraid I’m not cooking enough quality food for my children. I’m upset I can’t get my meat from the farm right now. I’m worried I’m not being a good enough boss, wife, and mother all at the same time. I’m worried about my mom and aunt who have weak lungs. My cousin too. And, of course, I worry about the virus overtaking my children, husband or myself.
If you name your fears and honor them you have then given yourself compassion. You’ve said it’s OK to feel what you feel. If you can give yourself compassion you can give it to another person. Empathy is born from comparing your own feelings to someone else; it teaches you to hold the world in your heart.
Lastly, I’d like to talk about my friend grace (not my adorable niece Grace). Grace is knowing that it is OK to fail. Has anyone else yelled at your kids while pulling up the news lately? Or snap at your husband when he interrupts you trying to do a work email? Yeah, me too. Walking through a time of fear is messy. Learning that honoring your fears isn’t taking away from someone else’s hurt is hard. Giving yourself a mental hug when you lose your shit or walk up the stairs 15 times to see if you can breathe? Absolutely necessary.
It’s Ok. The world is hurting and you are too. But together we can hold ourselves close to our own hearts and by doing so hold the entire world close as well.
Xoxo,
Jessie
by Jessie Cooper | Apr 8, 2020
Over the last several weeks, our country and world have changed more than I believe we ever imagined. Each person and business has had to rethink what our new “normal” looks like because of COVID-19. For the autism community and ABA (applied behavior analysis) providers, one aspect of our new normal is telehealth.
I can say with confidence that very few BCBA’s or ABA providers were savvy to telehealth prior to COVID-19. Telehealth was used on a very small scale in regions that are remote and therefore barren of service providers. Outside of these outliers, we are a face to face field. So what do we do with this new service delivery model? How can we as service providers use telehealth for ABA to help our clients and their families get as much access to care as possible during COVID-19? At Instructional ABA Consultants (IABA) we’re approaching this in a few different ways. I also think from a mom’s perspective there are several aspects I would personally consider if it were my child. I’d like to share both.
Telehealth at IABA Consultants
To start, at IABA we first had to consider the clinical standards we want to see for all of our clients. It’s one of our core values that clients make progress every week. In eight years of business, I know this piece has always been true for us. Our data speaks volumes. With COVID-19 I knew as the owner I was willing to approve new policies to support our families so long as this value held true. I hold a great deal of trust in our team of directors and followed their guidance to ensure clinical quality.
Now please remember that we are essential workers and many of our clients are receiving direct care with supervision via telehealth. The reason for all supervision being by telehealth is to decrease the number of people gathering (#socialdistancing). There is a portion of our clients whose families are choosing not to have ABA providers in the home during Shelter in Place. For these families, we created three options for telehealth to address the variety of clients we serve.
Telehealth Options at IABA Consultants
The first option is for our clients who can independently respond (understand conversation through technology). In this option, we are doing direct telehealth sessions with them. This option allows clients to get the same content of their ABA session over video sessions.
The second option for our clients who can learn via telehealth, but cannot respond independently, is to require a moderator (family member) to assist during telehealth sessions. During telehealth sessions with a moderator, the ABA therapist will send over data sheets & materials prior to the session then coach the moderator on how to run goals.
The third and final option is for clients whose families are either not opting into any type of direct session (one on one goal work) either in person or via telehealth. This option is also available for clients who BCBAs do not feel their programming is appropriate for telehealth (remember our value of progress!). This third option consists of weekly or bi-weekly parent training sessions. During these parent training sessions the BCBA reviews goals, provides materials, datasheets, and trains the parents on their child’s ABA programming.
All of these options provide a spectrum of care for our clients. With ABA therapy we know that the amount of hours impacts learning and behavior reduction. One sacrifice that is made via telehealth is that hours are reduced so the speed of progress will slow. However, the benefit here is that for all families who are opting out of ABA therapy in the home, but into telehealth, progress will not stall and their child will not significantly regress.
I like to think of telehealth options as a good fitness program. When you are able to go to the gym and get goals from your trainer you will most likely make steady progress toward your goal. If the gym is not available and you’re now jogging outside you’re still making progress, but it’s not as fine-tuned as the gym. It’s progress, as you stay fit, but maybe you lose 2lbs instead of 5lbs this month. Telehealth tailored to our clients is like a really good jog and I’m beyond grateful for the response of the insurance providers to make this an option.
Telehealth from a Mom’s Perspective
Now, as promised, I want to take a moment to talk about telehealth as a mama. If my children were receiving this service I know that there are two things that would be important to me. The first piece I would want is for the telehealth session not to act as a babysitter. I would want my child to be actively learning not sitting and zoning. I can turn my own TV on. To monitor for this I would make sure the BCBA on the case was overlapping these sessions (also remotely), updating data, and providing weekly summaries of learning.
The second piece I would be mindful of is how much time my child is spending with the telehealth option. As I said above, ABA therapy improves outcomes based on the amount of time a child receives therapy each week. I don’t think this is true for telehealth. I would be wary as a mama if my service provider still wanted to do 40 hours of ABA via telehealth. At IABA we’re looking at between 30 minutes to an hour at a time based on the learner. These can be multiple times per day but eliminates the worry of just keeping a screen on all day with no progress. If both of these pieces (progress & length) were monitored for my child I would feel at ease with telehealth as a short term solution.
I hope the way IABA is approaching telehealth and my views as a mama serve you. We’re all in this together and together we’ll all be stronger for it.
Xoxo,
Jessie
by Jessie Cooper | Mar 25, 2020
Over the course of the past week, our lives have changed rapidly. Here in Illinois, as in many states, we are formally following Shelter in Place. ABA therapy is medically necessary for children with autism and ABA therapists are categorized as essential workers. That being said, we gave our families and staff the option to pause services or work until the Shelter in Place lifts on April 7th in Illinois. We gave the same option to our Colorado families. There are still families receiving services and staff working, but we have more families currently on pause than those continuing with ABA therapy (as a personal choice). As a clinician and mama who is now going on week 2 home with my own children, I know how hard it can be. This week I’d like to provide some insight on simple tips for children with autism who are at home without their usual support team.
Tip #1: Make a Daily Routine
I know that this tip sounds simple. I’ve even seen this tip on several parenting sites not specifically meant for children with autism. Having a daily routine during a time when life feels uncertain can be comforting. It’s also an easy way to ensure you are doing what’s important for you and your children every day.
For children with autism, routine has been, and will be, important beyond the COVID-19 outbreak. People who have autism often think in patterns and sequences. Life itself is one big pattern! To a person with autism, knowing what comes next can bring down anxiety levels. If anxiety is low, problem behaviors surrounding a change in the routine (the next task on the schedule) are less likely. The more predictable you can make each day for your child with autism, the calmer they are most likely to feel.
Tip #2: Single Task
I’ve mentioned this before, but in “How Not to Lose Your Shit with Your Kids,” single tasking is brought up A LOT. Maybe after COVID-19 the book will be a New York Times best seller! Just kidding. But in all seriousness, if, while you are implementing your child’s (or children’s) daily schedule, you are trying to multitask you are setting yourself up for failure. Single tasking is just what it sounds like. Do one thing at a time.
With millions of us now working from home, while our littles are there as well, I know what a large feat this is. You are trying to work and keep your children happy, which is multitasking in itself!
How I’ve personally tackled this is by setting up my children’s schedule (minus naps & food) around my day. What this can look like is taking breaks from work to transition your children through their schedule. It may look like cutting yourself some slack and when you really need to work. Things like putting a movie on or setting up play time that you don’t need to be involved in may seem like sub optimal parenting. While I know the mom guilt can be real, knowing our own boundaries makes for a calmer house. Do one thing at a time the best you can to keep your nervous system at bay. If you do lose your shit, go ahead and give yourself a great big mental hug. It’s OK, we’re all struggling.
Tip #3: Choose Small Goals
I learned this tip working with children with autism well over a decade ago. I was working with a boy with autism back in Ohio and he had a goal to learn to shower independently. In order to learn the full task of showering we broke the skill of showering into small steps. The goal was broken down into steps like taking clothes off, turning on the water, checking the temperature, and so on so forth. The whole process was over 25 steps! We taught one step at time and, in time, he learned to shower by himself. In ABA we do this for all our clients in their programming.
While you’re home with your child with autism, pick a few goals that are really important to you–ones that will bring pride or joy to your child. These goals can be new communication (pick 2-3 words/signs, communication cards), play goals with siblings, play goals alone, eating goals, or self care. Think about things you’d like your child to be able to do. Observe your child and write down all the steps they would need to know in order to accomplish the full goal. From there, you’ll pick the first step of the goal. Teach, teach, teach until that first step is learned. After you see success on the first step, move to the next. You may not get to the full goal by the end of Shelter in Place but your child will be learning!
Comment on our Facebook post your questions about goals and we’ll reply!
Tip #4: Celebrate Success
It’s so easy to become frustrated with each other during Shelter in Place. I mean, we’ve all seen the Shining… Staying in place can be filled with wonderful family moments, as well as some pretty real human moments. To help your child with autism know what they are doing well, make it a point to praise them! Try to find 10 positives a day to praise your child. Knowing that they are doing something correctly gives your child the confidence to continue their positive behaviors. And hey, while you’re at it, maybe thank your husband or wife for dumping clothes in the hamper not the floor.
Tip #5: Remember Functions of Behavior
Over the course of the winter, I wrote about the functions of behavior. I explained how everything happens for a reason and how in ABA we use four categories to explain why behavior happens. These categories are attention, escape, access to tangibles/activities, and automatic. During your time at home with your child, if a problem behavior occurs start to observe it the best you can to find the function. Here’s a quick guide:
- Attention: Parent is busy-problem behavior occurs, parent provides either positive or negative attention
- Escape: Parent requests-behavior occurs, parent removes demand
- Access: Child requests an item or activity-behavior occurs, parent gives access
- Automatic: this one is complicated, please reference my previous blog here
Once you notice what your child wants with their tantrums or problem behavior, it’s important to do two things. First, try to be preventative and fill them up with what they want before the behavior occurs, when feasible (for escape this is lots of breaks/attention & access is self-explainable). Then, if the problem behavior still occurs, do not give your child the consequence they are seeking. You don’t want to reinforce bad behavior. Stay consistent and sooner, rather than later, your child will realize the behavior isn’t working and it will go down. Also, remember to teach language skills to help your child request their needs more safely!
Tip #6: Give Yourself a Break
Life is disrupted for pretty much everyone right now. It’s easy to start your day with a plan only to have that plan change–sometimes only minutes into the day! It could be from work, your child’s particular mood at the moment, or that you yourself are just having a bad day. Try hard not to judge yourself and instead provide grace. Say kind things to yourself when you’re struggling and make sure you’re carving breaks out for yourself. These should be things you love to do. Mine look like naps, a kid-free hour, and running. If I’m overwhelmed I look to when I can schedule a me moment in. I hope you can too.
Xoxo,
Jessie
