Posts Tagged ‘autism’

Love Warriors

Posted on: August 25th, 2020 by Jessie Topalov

It’s been two weeks since I picked up my laptop for work and writing. I thought after writing “Going Dark” that I would be fully rested and ready to conquer the world by the time this blog was due. I must have forgotten the tiny detail that I’m still a mama to three little men and was starting an out of state move. The rested part will come but clarity is with me, and for that I’m grateful.

Coming back to work made me realize it wasn’t a simple break for me. I didn’t take off to come back to the same job–I took off to prepare my heart for what’s to come. I’ve always been this way. Once I’ve learned all I need from one chapter of life I start the next chapter.

I shared a piece of this process in “Going Dark” to explain my career in the field of applied behavior analysis and autism thus far. I’ve got a gut feeling that these rest cycles will become more frequent as I fuel up inside for the next chapter because it’s a big one. I’d like to share my vision with you.

My Vision of the Future

Since childhood, I have always challenged authority and was misunderstood. A rebel, if you will. Looking back, I wasn’t a rebel, I was a misunderstood love warrior. I felt and still do feel that much of our human experience and suffering is brought on by arbitrary systems. We become so conditioned to these systems and rules we forget who we are. We become stuck.

I was stuck and broken-hearted for decades not knowing that my constant questioning was my gift. As I write this I need to remember my little lion Henry because he has this gift too. Gosh, he’s easy to love but my oh my he’s hard to parent! When I look at my sleeping son I know in my bones that if I love him fully he will not be broken-hearted or get stuck. My son will fly free. This is my vision for humanity, to fly freely with us.

This seems simple in writing but in reality, is a mountain to climb. To deconstruct the systems around us–who holds power, money, food, social conditioning, and the like–would take a lifetime of work. But if we do this together, my loves, could we deconstruct the world? I’d like to think we can and, in deconstructing it, we can rebuild it in love.

I believe every woman, man, and child can be exactly who they are and be fully loved for it. If we all stopped confining ourselves to the labels others place on us who would we be? I think the world is scared to find out and there is a reason people in power want to keep others small.

Over the past two weeks, I was really struggling with my victim story. All survivors have it and when I go there it’s tough to get out of my inner child. I believe the Spirit around us delivered me to my aunt who held me in a cocoon of love for three days. I needed her. Once I was whole and we moved into our new farm, a card literally fell out of a mantra deck onto my feet that read “I am not the victim, I am the lighthouse.” Hell yes, I am! And whatever the story being said of you, a story that may be keeping you small, you can be healed too. You are a lighthouse too.

Making My Vision of the Future a Reality

In finding the fire and light inside my sisters and brothers of peace I hope, as I’ve written before, to build a new world. You see, I’m very good at building systems that work. I bet you’ve got some wonderful talents too. I want to find those already enlightened in love and those yearning to heal. And from there find their talents and what lights their hearts on fire. I can offer my gifts to the autism world, to the world of motherhood, survivors, my readers, families, and friends. But you? Who can you offer your gifts to once you unlock them?

Today I’d like you to join the narrative. Leave a comment below, tell me your story, what you deeply love, and who you want to see live more freely, with more support, or more love. Together we’ll connect, with compassion at our core, and become Love Warriors.

Xoxo,
Jessie

P.S. If you’re wondering where all the beautiful photos for my blog come from:

Photo Credits: Amber Riveria our beautiful friend and artist

Going Dark

Posted on: August 6th, 2020 by Jessie Topalov

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

Back to School Blues

Posted on: July 24th, 2020 by Jessie Topalov

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.

photo of a child holding luggageThis 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

A Telehealth Heart to Heart

Posted on: April 8th, 2020 by Jessie Topalov

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

Photo of an ABA therapist telehealth providerTo 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

A Simple Autism Support Guide

Posted on: March 25th, 2020 by Jessie Topalov

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.

photo of mom journalingTip #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

ABC’s & 123’s Don’t Really Matter Much to Me

Posted on: March 11th, 2020 by Jessie Topalov

Over the last few weeks, I’ve been sharing some of my favorite parenting practices, practices that I believe have a direct impact on positive development. In writing these blogs, I’ve been getting a lot of questions about my take on academics and young children. In a world that has growing expectations concerning what children should know, I’m more than happy to write my spin. That being said, I have to admit that my opinion on this topic stems from my grandma.

As a child, family was really important to my dad (it still is). He made a point to see his parents and to keep us connected with our aunts, uncles, and cousins. One way he kept my sister and I connected with my grandparents, who lived on a farm about an hour away, was to leave us with them for a week every summer. This was my favorite week of the year!

During the week on the farm, we would help take care of the animals (well, mostly me!) garden (again, me ) and learn to sew (mostly my sister). We got this amazing exposure to a slower pace of life and to learn about my grandparents’ take on the world.

My Grandma Virginia was the matriarch of the family and a force to be reckoned with. There was really only one opinion that mattered: hers. I loved her. Originally my grandma went to college to become a teacher but met my widowed grandpa who had two small children. Her life quickly changed when they wed. They had four more children of their own and she spent her years raising them while my grandpa worked as a traveling minister. When all her children were grown (all 6!) she went back to get her master’s in special education, which was right around the time I was born. She then went on to teach 6th grade and special education.

Learning About Education

In talking to me about children and education, there was something my grandma said to me that has always stayed with me. She told me that when she went back to college she was amazed by how many new theories had been created and how expectations had changed yet children were still just children. To her, this new world of education was based on adults wanting to “make a system better based on their own take,” versus really just following a child. She was concerned about the new level of academic work being pushed at a kindergarten level that then, of course, lead to the age of standardized testing.

Now, mind you, I was born in 1987, which was the year my grandma got her master’s. It was most likely the mid-90’s when she shared this opinion with me. But sitting here this morning, writing this to all of you, I can’t help but feel she was onto something.

I’ve now sat across the table from hundreds of parents with children who have autism and are worried that their young children are behind academically. In speaking to these parents, I have learned they are concerned with things like their children being unable to sit in a group, or solo, for a long period of time, not knowing shapes, colors or ABC’s, and not being able to read by kindergarten. I also know my mom-friends of young neurotypical children have the same concerns. These parents want to make sure their children are set up to be successful at school. This is a great goal, but, if you ask me, the academics really don’t matter in early childhood. Here’s why.

Childhood Development: More than Academics

To me, in regards to education, I have one skillset to emphasize to my children before they go to school; love to learn. That’s it. As I’ve written about before, children are naturally curious and ready to take on their world every single day. This thirst is what will drive them to learn just about anything we ask of them later in life. At an early age, forcing rote memorization of facts (colors, numbers, letters, shapes) doesn’t match the level of curiosity children have; it confines them to a small space versus the world. In doing table time work with small children, we’re teaching them to follow a rule (sit/see/do) versus teaching them to learn. Please don’t get me wrong; sitting at a table and doing work is super important as a child gets older but up until age 5 or so I really don’t see a benefit.

When a child is little I want to see them sit to eat, read books, play, and with family around 5 to 10 minutes at a time. Going potty is also a time to sit. If a child can sit through these social scenarios and understand the expectation, awesome! I really don’t expect more than that before age 5. The reason for this is children are natural movers! They learn through exploration and don’t have an attention span longer than their age. Asking a child under 5 years old to sit and “do homework” is really just an expectation of the institution versus something developmentally appropriate. Now, I know A LOT of educators might read this and not agree; that’s OK, that’s your right. I can tell you, however, that by working in a preschool with young children with autism and by watching my own children that I strongly believe in what I’m saying.

Children learn in their world. If we, as educators, parents, and therapists, begin forcing academic behavior and content before a child shows interest (between the ages of infancy to 6 years) then I do not believe we’re helping them get ahead. What I have seen as a huge benefit in development working with young children with autism and my own children is to just follow their interests. This means play, play, play or read, read, read! And if there are opportunities to teach during moments of play or reading? Go for it! It’s totally OK to ask for letters, shapes, colors and so on while playing or reading. By doing this, we’re teaching children that learning is exciting and to love to learn! There’s no pressure in this way of instruction and children learn to seek out this type of interaction. It reinforces curiosity & learning. This is what I want for my children and, more so, what I would want for a child with autism.

Encouraging Childhood Curiosity

If children are curious about adult interactions and finding new interactions within their world, the rest (like academics) will come. Really! For children with autism, learning the value of social interaction is a key component of their treatment in ABA (applied behavior analysis) therapy. What I don’t want to see in a young child with autism before the age of 4 is being brought to a table to learn and memorize information as the primary part of their therapy. I want to see them working with their therapists through play with only a small part of therapy reserved for focus and tabletop work. In my children and other neurotypical children, I don’t see any value in tabletop work before age 5 unless a child initiates it.

Children are magically curious, with an appetite to know more each and every day. What my grandma noticed when she returned to college all those years later was an increase in the expectations from institutions yet no change in the child. In her words, “we don’t need to reinvent education.” It’s been some time since my years on the farm and my grandma has since passed on but today I feel close to her and in complete agreement. Let them be little, let them be wild, let them be a little wild!

Xoxo,
Jessie

Straight Talk about Technology: Parenting and Screen Time

Posted on: March 3rd, 2020 by Jessie Topalov

Growing up, my parents were very structured and very strict. From a child’s perspective, I had a laundry list of things I did not agree with and regularly challenged (sorry Mom and Dad!). I can still relate to ways in which I was raised that still don’t resonate with me as an adult. This is not to say my parents were bad people, we just had very different perspectives.

That being said, one thing I thought was a top injustice of my childhood was my limited TV exposure. I know I felt on the outside when it came to what other children my age were allowed to watch, both in content and length. Now, as an adult, I’ll humbly admit “Mom & Dad you were right.” I do not believe in exposure to TV before age two and believe in continuing to control exposure through all of childhood. This is my belief as a researcher and a mama.

Limiting Exposure to TV During Childhood

Photo of a toddler with snack cupSo, why do I have such a strong belief in monitoring exposure to televsion? Why do I feel so strongly about not want my children exposed to television at an early age? Why do I want TV used with control and boundaries as my children grow up (Dametrious can tell you how unfair his screen time limit is!)?

I believe, and research supports my belief, that the use of technology in children under the age of two has a direct negative impact on language development. Per Welcome to Your Child’s Brain; “U.S. babies of seven to sixteen months who spend more time in front of the screen know fewer words. Two or more hours per day of screen time before the first birthday is associated with a sixfold increase in the risk of language delay. Even Sesame Street Viewing by babies correlates with language delay, though this program has lasting beneficial effects on three-to-five years olds.”

To elaborate, repeated exposure to technology builds new neural pathways in our brains teaching them to look for instant responses at a speed the natural world cannot keep up with. This can enhance symptoms of ADHD and autism, create antisocial behavior, and start an addictive engagement with technology. In sum, technology is built to teach us to engage with it and not the world around us.

Raising Children with Little or No Screen Time

For these reasons, I choose and teach to limit technology with all children, my own included. I know reading this might trigger some mom guilt. Trust me, I feel it too! This is why I think it’s important to talk about children and screen time.

As a working mom of young children, there is chaos at my house at any given moment. There are times every day where I feel I’d just like an easy out. An out that makes my children sit quietly so I can do, well, anything. TV is a huge temptation to use as a pacification tool. For me, however, the “sit and zone out” quiet time TV provides is not worth the cost on a daily basis.

When children are in front of a screen they are not interacting with their social world, period. This means that all their beautiful, developing synapses, synapses only available to them for their first three years of life, are going unused. When a TV or screen is on my children are not learning and many critical social and lingual milestones may be delayed. As their mama, knowing what I do, I just can’t stand in the way  of my children when it comes to development.

Substitutions for Screen Time

So, my opinion is that any lengthy screen time is not an option for young children. What do I do to distract my children in stressful situations? First I have to tell you that limiting or eliminating screen time is definitely a lifestyle choice. Not using screen time as a tool means I have a lot of messy moments in my house.

For example: Every morning when I wake up around 6AM my husband is leaving for work, which leaves the task of getting three children ready for the day solely up to me. My youngest, Declan, nurses first, followed by Henry and Declan playing in my room and bathroom while I get ready. They take EVERYTHING out and turn my room upside down. Specifically, Henry enjoys “ice skating’ by putting lotion on his feet in my bathtub or maybe shredding cotton balls for his dinosaurs to eat.

My brain can get overloaded with all their quick little interactions with the environment of my bedroom or bathroom. A bouncy seat with Sesame Street on TV sounds SO nice. But I know if we start the day that way, all the beautiful energy and curiosity in the world will switch to a pattern of behavior to crave technology every morning.

So, Henry ice skates, Declan turns everything upside down, and I do my hair (while taking a lot of deep breaths). I play this scenario throughout our days together because being home with small children alone is HARD WORK. Whether it’s getting ready for work, being home during the day, bedtime–you name it–single parenting is no joke. If you throw in children with different abilities, like autism, and life may feel totally overwhelming. For me, keeping technology rules in our home is really helpful for dealing with the feeling of being overwhelmed; it gives me a structure to lean on every single day.

Screen Time Rules for Kids

With all the above being said, I still believe that TV and screen technology in general can be OK in moderation. But screen time must be my choice not my children’s. I have to admit, it’s been a real balance test for me since my husband and I introduced TV to Henry at 2 years old and I’m constantly fretting over his exposure. Declan still has not been exposed (minus seeing his brother set up for movie night on Sundays) at almost a year old.

TV rules at our house are keeping movie nights to Sunday night outside of special events like my husband wanting a boys night (Star Wars is out on Disney Plus). We also limit Henry’s access to 20 minutes a day or, sometimes, every other day. Up until Henry was 2 ½, there was almost zero daily exposure to TV. If I know I’m going to need a minute to myself, I plan 20 minutes around me, not him, for TV time.

We also allow zero screen time on Ipads, unless it’s a long trip or public place where we really need Henry to sit (Acceptable example: getting an Xray at the doctors. Bad-example: going out to eat). Every once in a while, I cut myself some serious slack, usually due to extreme outside stress, and use TV outside of our family rules. Because life happens. Just remember not to use every excuse you can to break the rules!

I know it’s a lot to digest the WHY of limited screen time from a practitioner’s standpoint. As a mama, I know reducing or eliminating screen time is not the easy route, trust me. But I chose this route for my children because I want them to be curious, messy, loud, and in love with everything that goes on around them!

If I make a choice to make TV part of their day or not, I’m making a choice to teach them to disengage from the screen world in front of them. And I think in the growing age of technology we could all be a little messier & engaged.

Xoxo,
Jessie

Automatically Maintained Behaviors and Beyond

Posted on: January 15th, 2020 by Jessie Topalov

The last three weeks I’ve written about how your child’s behavior is maintained by attention, escape, and access to tangibles. If these topics resonated with you, it is most likely your little sweetheart is engaging in problem behaviors, big or small, to get an outcome within their environment. In my field we call these socially mediated behaviors. The last function of behavior, the one I’ll be discussing in this article, is automatically maintained behaviors, and it’s the trickiest of the bunch.

Here we go. We all have needs that only come from within us, physiologically speaking. The most basic examples are hunger, thirst, feeling tired, having to go to the bathroom, and sexual behavior (we’re not going there, this is a kids blog!). In short, each and every day our body has needs and throughout the day these needs fluctuate between being “full” and “empty.” What this looks like for adults is planning our meals, when to grab a drink of water, how much to sleep and so on. Honestly speaking, this what a lot of moms out there are neglecting to plan for because we’re so overwhelmed by planning it for our children.

Fulfilling the Physiological Needs of Children

photo of toddler snuggling siblingWhen it comes to children, fulfilling physiological needs is essential and the second most important thing in their development. Nurturing emotions is number one, but we’ll save that for another time. Through any given day your baby, toddler, or child becomes hungry, thirsty, tired and so on. As parents it’s our job to first figure out these needs during infancy and toddlerhood. As they get older we teach our children the skills to take care of themselves. For the purpose of this blog, automatically maintained behaviors are important to note for two reasons.

The first reason is to help you, as a parent, know “why” your child is throwing a tantrum etc. If you’ve been reading my blogs and gone through the three other functions and are still saying, “OK but my kid is still screaming and none of these things are happening,” there is a good chance your child has a physical need that needs to be met at that moment. When children are tired, hungry, or thirsty they almost always show it in crabby behavior. For Henry, this looks like whining, being more stubborn than usual, and crying easily. These behaviors have nothing to do with anything he wants; he’s being irrational because his body feels off. With Declan and most other babies this just looks like crying. As a parent it’s important to know when your child is being fussy or when they need a meal/nap vs. giving them a teaching moment like we’ve talked about with the other functions. Additionally, it is important to not blame all of your child’s naughty behavior on being tired or hungry. Knowing the function tells you and me, the parents, how to respond. The second reason this is important and much deeper.

The Unique Needs of Children with Autism

Children with autism often have the most difficulty with automatically maintained behaviors. The reason for this is most children with autism have speech delays as well as heightened sensory awareness. From an early age children with autism will often present delays in speech milestones and may look as though they are in their own world. As they move from infancy to toddlerhood their needs change the same as neurotypical children. But children with autism often do not have the language to request what they need or want. For parents, this means a constant guessing game of if their child is hungry, tired, in pain, needing attention, want a toy etc. Additionally, having heightened sensory awareness means that children with autism can either overly enjoy or get overwhelmed by the sensory world. This can manifest itself in ways like getting caught up with a breeze, or how their hands move the air, and even go as far as disliking certain textures and sounds. It is a beautiful, but tough struggle.

Parenting the Best You Can

Children with autism are born perfectly fine. Let me say that again. Your child with autism is perfect. What is hard for your child, however, is understanding the social world and it’s not their fault. What is helpful for a child with autism is learning to adapt to our social world. This means learning language and how to navigate a social tribe (humans). For parents of children with autism this can be tough. But please, dear ones, remember: asking for help is a strength inside all of us. If your young child does have autism I am here as a resource and friend. I also want to help normalize ABA therapy to help more young children and families. Using ABA has made the struggles I’ve written about move from a steep mountain to a manageable hill. It’s not scary therapy, I promise 🙂

Xoxo,
Jessie

Access to Tangibles, the Toddler Years

Posted on: January 6th, 2020 by Jessie Topalov

Over the last two weeks, we’ve taken a deep dive into attention-seeking behavior and behavior maintained by escape. If you’ve been following along, I’m hoping these blogs have helped you and you’re starting to see some patterns in your little sweetheart. If you’re new to the blog, welcome!  Just click here to take a peek at what you’ve missed.  

The world we live in is a beautiful place, full of choice and products.  We’re very blessed in this way. Every person spends their lifetime building up preferences and favorite things.  Some of this comes from within us (nature), while some of it is from what we’re taught (nurture). But all of it comes from us navigating our environment. This starts as soon as we move from the squishy, wonderful newborn phase into the active baby phase.

How Your Child Develops Preferences

Think about it.  You’re a tiny little baby around the ripe age of, say, five months.  Your parents are getting ready to give you a big spoonful of your first real food! They anxiously await your reaction to the food they’ve chosen (nurture) and you respond (nature)!  For my boys, I’m super into training their pallets to love real food. I made a point to do green veggies at 5 months for both Henry and Declan. Henry downed his broccoli and to this day has not shied away from eating his vegetables first (unless salmon or applesauce make an appearance).  Declan was not as impressed. It turns out he really hates puree, is OK with most veggies but does not like the texture of broccoli. He would eat muffins all day if we let him! Now, in giving these examples, no problem behaviors are happening, but I’m hoping it’s giving you a picture of how preferences for tangibles start. We as parents provide the exposure and our children respond with preferences.

From infancy into childhood and beyond, each exposure to something new builds up a list of likes and dislikes. To children, the world is their oyster.  While toddlerhood is an extremely hard phase for any parent, it’s also a joyful one, as your little someone begins to build into the person they will become.  But this little person, as I’ve said many times, is all limbic system.  This means when your toddler decides they either like or don’t like something and you either withhold a preferred item or ask them to use a disliked item, their response is, “fight, flight, freeze.”  This goes on all day long for most toddlers from about 18 months to three years of age. Around age three the prefrontal cortex (our logic center) starts to develop and these Big Emotions, while present, are not so intense.

Coping with Your Child’s Preferences and Behavior

So what does this look like for you, for me, and for our children?  It looks like our toddlers asserting their preferences very noisily and us learning how not to lose our shit. Honestly, if you are interested in this kind of stuff, you should read “How Not to Lose Your Shit with your Kids,” it’s a lifesaver for this phase!  

For the last 8 months at our house Henry (now 2 ½) has been going from passionately happy to emotionally distraught, which is centered around access to items he wants.  It starts when he wakes up and wants a drink, but not just any drink. It could be water, juice, a smoothie, or almond milk (he’s lactose intolerant). If he’s allowed to have the requested item, he shows joy. If my husband or I say, “No,” his world crumbles. Fight, flight, freeze. This cycle goes on for the whole day; what bowl he wants to eat from, what fruit he wants for snacking, can he have a treat (usually chocolate), can he watch a show and so on and so forth. In writing all this down, it seems exhausting and it is.  But it’s also who Henry is at the age he’s at.  

There is a world full of endless choice and reinforcers that await him.  Watching Henry show joy toward finding his reinforcers is magical. What isn’t magical is when he’s asking for something and the answer is, “No.” As a parent, it would be easier to say, “yes!” all day to every request because then the tears would stay at bay.  However, it’s also my job as his (and his brother’s) mama and to teach them tolerance to disappointment, moderation of fun-but-bad-for-you stuff (sweets, processed foods, and technology at our house), and how to wait. This can suck in the moment because you know that in saying, “No,” a behavior may follow.  But what follows much later is a skill set you can be proud of as your little ones grow.  

Now, of course there are times we all need to give in.  But this need comes from you and not for your child. It’s not about making them happy with a third movie, it’s about giving you a break.  We, the parents of toddlers or children with limited verbal ability, like some children with autism, are a tired breed. We get run down too and sometimes that 100th, “No,” is just beyond you or me.  It’s OK. Give in. But know when you are giving in and let it serve as a warning sign that you are in need of some self-care and alone time ASAP. Once you get some R&R time, you are recharged and can decide to buckle in and drive back down the road of helping your child navigate their choices with you driving–not them.

Getting Help for Your Child

If your child is very young (or getting older but is not verbal) with autism, this is where Applied Behavior Analysis (ABA) can help.  You see the world is still full of beautiful choices for your child, but they may not have the voice or ability to say what their preferences are.  Or they may not have the skill set to wait for their favorite items. Teaching children with autism how to communicate what they want and who they are is by far the most rewarding part of work in ABA.  If a child gets access to intensive ABA from two-years to five years of age (think 20-40 clinic hours a week), their chance at full verbal language is tremendous. In teaching speech, we’re opening up their world to tell us everything they love. And who doesn’t love that!

 

Xoxo,

Jessie

The Escape Artist

Posted on: December 26th, 2019 by Jessie Topalov

Last week we dove into attention-maintained behaviors and what to do when your little one is engaging in challenging behaviors to gain your (or others) attention. This week we’re going to jump into talking about what to do when your child is engaging in problem behaviors to access escape. So, in turn, we’re going to talk all about my son, Henry.

To begin let’s remember the recipe for identifying if your child is engaging in problem behavior to escape your demand. First, you, as the parent, ask your child to do something. Next, your child engages in a behavior that is uncomfortable for you. Lastly, you remove the demand to avoid the behavior. Look at the middle part again. “Your child engages in a behavior that is uncomfortable for you.” What this means is your child has figured out what behavior they can use to make you essentially back off. As a mama this is tough. I know this as a clinician, but I’m also living it.

A few weeks ago we talked about making a list of behaviors that are not OK in your home. My list was hitting, spitting, and yelling at an adult. Henry does all three of these things every day at some point to escape my demands. “Now wait a second!” you’re saying. “You are our guide, the ticket out of these behaviors and your son does these things on a daily basis?” Yes, but stay with me!

Raising A Strong-Willed Child

Photo of a toddler walking down a gravel road on a sunny day.Henry, from infancy, has been a strong-willed child. I’m a strong-willed woman and Henry’s Daddy is Bulgarian, so he got a double dose of stubbornness.

I remember writing this in Henry’s baby journal, “I didn’t know babies came out like you.” When we were sleep training Henry at 6 months, he would lay on his belly popping his pacifier in and out of his mouth watching the door then when we walked in he’d flip over and start crying. Smart little guy. Since then it’s been a steep learning curve to stay ahead of Henry. He is a bright child, full of love, life, and in his little brain, he knows best.

Henry has strong opinions about how his day should go. When I tell him it’s potty time, or it’s time to get dressed, or he needs to sit to eat, and so on and so forth, he will challenge me. Normally it’s just a vocal comment and an attempt to negotiate with us (negotiating with a two-year-old is tougher than it sounds!) to which I stand my ground most days. When it comes time to follow through with a task I need him to do (normally dressing, potty, buckle to eat), however, Henry will yell, hit, and even spit at times.

These behaviors first started to ramp up around the time we welcomed Henry’s brother, Declan into our lives. I wasn’t capable of finding the function, making a plan, or teaching a new skill when Henry’s new behaviors started. I was barely hanging on at the time and all I could give was showing up to get through the day. Henry’s new behaviors took hold mainly because I was occasionally reinforcing them (“Ok Henry, sit wherever just eat”). Henry learned that if he used these three behaviors (yelling/hitting/spitting) I would get pissed and give in from time to time. This was not a fun dance.

Working on Yourself to Help Your Children

Over the past few months, I’ve been working hard at calming down my own nervous system to be a better mama. Two kids under two is hard. I’ve been asking myself what I need to be able to do to take a step back and truly help my son by helping myself. It was in taking this step back and working out more, meditating more, playing more–working on me more–that I could objectively see his pattern. Before this point, I was just putting myself down, telling myself that as a clinician I should know how to fix this, even telling myself that I was a bad mom. This behavior didn’t help anyone and felt awful. When I took a step back, I was able to change the narrative and tell myself, “yes you’ve reinforced some of these behaviors, but that’s OK. You can change it now.” Simply said, I’m taking things day by day. Henry’s undesirable behaviors are not down to zero, mainly because Henry had learned that these behaviors work. It takes time to unteach this.

What this looks like for us now is that I wisely choose the demands I’ll place on Henry and give him a choice where a choice is available. I believe every child should have this balance. Henry can choose to open one toy bin (we play by theme so I can dump a bin and clean a bin up vs. having toys everywhere), what fruit or veggie he wants, what shirt he wants to wear, what movie to watch on movie night–all the fun stuff.

My husband, Martin, and I choose care routines and values. When it comes to following through with routines and values, we move forward regardless of Henry’s response. This look likes; “Henry, we’re eating. You don’t have to finish, but you have to try before you can get up,” or “It’s time to sit on the potty. When the timer goes off, you can get up,” and so on. This routine has lowered how often Henry engages in undesirable behaviors, but they still happen from time to time.

It’s going to take time for Henry to completely stop with these behaviors because he’s 2 and all limbic system. He also can’t tell me how these demands make him feel, so I model this for him. “I’m mad about potty!” It’s OK for him to not like something or not want to do it, but we all have to learn over time that there are things that just have to be done.

Working with Differently-Abled Children

If your child is differently-abled, they may be using certain behaviors to tell you a lot and you may need help to find out. For children with autism who are non-verbal or with limited verbal abilities, these behaviors are what they use to speak up! Applied Behavior Analysis (ABA) can help you find out what it is that your child is trying to escape, why, and how to build up language so that you, the parent, can then choose what demands are non-negotiable and what are your child’s choice within your home.

I hope this message serves you well and am wishing you all a Happy Holiday Season.

Xoxo,
Jessie