If you’re a mom of young children like me I’m sure you’ve had the thought of going to the zoo once or twice. It goes something like this:
The local zoo announces a baby. Let’s say an elephant is born so of course, you go rushing! You get to the zoo (pre-COVID, maybe) and see the beautiful baby elephant, just days old, walking behind their mama. In a short moment, you think back to your child’s infanthood and think, “baby boy(or girl) you had fewer skills than an elephant.” Infant humans, while incredibly squishy, cute, and forever smelling of Dreft and lavender, come into the world with no survival skills.
There are thousands of articles on the importance of early intervention. I spent my bachelor’s degree diving into many of them, followed by stocking my brain with new findings for the past decade. This is in part because I am a researcher by trade. The other part is because I am a nerd for human development. It fills my bucket. In my blog today I’m going to try and give you a snapshot of why development from infancy through kindergarten is so vital. I’m also going to talk about why it’s important for children with autism and our amazing clinics at Instructional ABA Consultants.
Focusing on Child Development Early
OK, let’s get started by going deep. Human infants are born without any skills because their brains need more time to develop than all other mammals. If babies grew into functional toddlers in the womb they could not come out of the birth canal. Women’s bodies are incredible but they aren’t magic; there is a limit to the size of what we can birth (yes, I’m grimacing as I’m writing this because medication-free birth with a newborn is magical, but birthing a toddler? Um…).
So we get these tiny humans, who are desperately in need of being cared for–it’s almost like they are in the womb for an extra three months after delivery. Then they begin to wake up. I remember when both Henry & Declan found their toes and fingers in amazement around three months old.
During this first year of life, thousands upon thousands of neuroconnections are made. Babies are quickly developing their brainpower, motor skills, and language through these high-speed connections. To do this babies need a few simple things. Infants need to be nurtured, to know that when they have a need their parent responds. This creates a secure connection and lets baby know the world is safe. Babies need food and lots of sleep. Once these basics are covered we move into the two most important things; environment and socialization.
Early Socializing & Environments
I like to think of babies, toddlers, and children as little scientists learning through cause and effect. The environment is a huge blank canvas for our children to discover how their world works. Socialization is the tool children need to survive in our culture.
In their early childhood years, these two pieces are so incredibly important because of the rate children can learn. From infancy to year five, children will learn more than any other time in their lives. “What about college,” you say? Nope. These foundational years are the years where connections are made in the brain that last a lifetime.
As a professional, I love looking at how all this heavy lifting helps to shape the outcome of children’s lives. As a mama, I drove myself crazy after Declan was born and I realized I was basically running a school in my home for Henry. This wouldn’t be possible with two kids under two.
This was insanity in hindsight. This was also when I was personally able to take a deep breath and remember what I knew. The two most important things are environment and socialization. It’s not about how “cute” my day is with my boys. It’s about how often they are able to explore and engage. These days you won’t really find me teaching at a table much. Instead, you’ll see a “yes” environment set up (more on this later but basically a safe space to learn), technology out of reach (no TV/no Tablets on the regular as these devices delay both language development & socialization), and lots of talking.
Henry and Declan get to flex their learning muscles through exploration and language. I get to flex my relaxation muscle by not trying to do it all. I’m lucky in that way because my children do not need intervention. If they did I would not be able to sit back because these experiences would need to be contrived. That’s why ABA is so helpful for young children with autism. Here’s why.
The Importance of ABA Therapy for Autism
When a child has autism the neural pathways or roads in the brain that tell that child how to communicate and process information are not forming, either naturally or as quickly as a neurotypical child. The connections are still there to be made but without intervention, a child with autism can’t connect the dots. What this looks like in each child with autism is different but always results in some form of socialization or communication developmental delays. This leaves the child with autism lost in their social world and wondering how to connect.
In applied behavior analysis (ABA), behavioral scientists (BCBAs) are able to assess the language and communication skills missing in early childhood based on developmental milestones. Children with autism are gifted learners but they learn differently because their neural pathways are routed differently. Through assessment, BCBAs are then able to figure out how our little students learn, what skills are missing, and how to connect those missing dots. This happens in three really key ways.
The first is one on one therapy (think personal trainer at the gym) to really teach to the student. The next is to help the child with autism apply what they are learning with their peers. Remember, socialization is hard but children who are neurotypical learn from other children. To strengthen the socialization neuropathway, children with autism need to practice these skills with kids their own age. The last is transferring learned skills back to mama and papa. If a child with autism is in therapy and can do all these skills at a treatment clinic but not at home, the neural pathway is not fully formed.
Therapy at ABA Consultants
Instructional ABA Consultants runs autism clinics for children ages 2 ½ to 6 years old (in addition to our home-based therapy for older children). Our clinics (Naperville & Oak Lawn IL, Castle Rock CO, and coming soon Northside Chicago) have a Preschool Instructor designing the socialization component of our students’ days and BCBAs designing the individualized instruction. Parents are at the core of treatment goals and together we’re helping their precious children make connections in their early development.
Whether you’re a parent of a neurotypical child or a child with autism know that your child’s early years are precious. While we all can dream of our children functioning like that baby elephant walking around fully skilled, the reality is human babies and children need shaping. We’re a social species.
So set down the tablet today, pack up all the toys the marketing teams said you needed, and let your children explore and enjoy. If your child isn’t exploring, jump in and help. If you need help teaching these skills because your child has autism (or this is a new way to parent for you) reach out. We’re all in this crazy world of parenthood together.
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.
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
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.
Last week I wrote about a new chapter in life for me. I’m so excited to be able to share this with you as it unfolds. I’ve got a lot to unpack, reveal, and share. This week for my blog I want to take a side step into my work and experience as a mama as we all make decisions for the fall.
This past week has been a collectively hard week for every mama I know. Across our country schools are announcing what they are choosing to do in the midst of COVID. Emotions are high for a variety of reasons. No emotion is invalid and yet for the space of this blog I want to be clear on one thing. If you are in an emotional space where your fear is expressed by lashing out at others this blog is not a space for you today. Unfortunately, I’ve been on too many Mom Groups who have behaved unkindly to each other and teachers because they are operating in fear. We are all afraid at some level. These are new times. I’m asking that my readers take a collective deep breath and hold space for each other’s fears and don’t take those fears out on each other.
Okay. Whew, now that we’ve cleared that up, I’m ready to write. As I’ve said this past week has been a rough one. A lot of what I’m seeing is defeat and despair. We’ve all been collectively navigating COVID since March and I think the true wish is that we would be farther along. I know a lot of people are wishing that all the efforts made during Shelter in Place would have taken us back to a reality closer to pre-COVID. Our truth today is we are not going back, and neither are our children any time soon. That in itself is such a hard pill to swallow.
Now there are a great many valid things to be frustrated about as to why rates of COVID are not contained in the United States. I honor those deeply. However, I don’t believe me listing them will help anyone personally. My reality is, alongside many, that Americans collectively could be making some better choices and those who do not have the ability to make their own choices (think shut in’s in assisted living facilities or our children) could benefit from our better choices. Until we’re able to get to a spot where we are collectively dealing with the virus, we’re left to individually navigate a world with new limitations. It’s scary and sucks plain and simple.
A large part of what I see weighing on the hearts of so many parents is what to do in regard to school this fall. District by district different choices are being announced. The choices so far that I’ve seen are entire remote learning, partial weeks, or full weeks in school with the option to opt out for remote learning. There are vague statements about face coverings and sanitation procedures. What we all want is certainty and I’m sorry to be the one to write this; I don’t think it’s coming. This year is going to be all about making the best decision possible for our own children or grappling with the reality that the decision is beyond our control.
My simplest advice is give yourself and your friends grace
So, what can you do? What choice can you make for your children in a pandemic? I wish I could tell you the best answer, to give you that certainty but I can’t. I don’t have this for me. I can give you my advice, the best I have today as a mama and educator myself. My simplest advice is give yourself and your friends grace. To realize we are all in this together do the best we can. My next advice, if it’s at all possible for you, is to choose the education plan that creates the least amount of change for your child. I say if this is possible because there are many families who have no choice in this. There are schools that are announcing all e-learning regardless and families who have to send their children to school because they are working. If the choice is beyond your control, then focus on what you can control. And, for the families that will financially suffer through this, I am so sorry. I wish this was not the case for you. I realize I’m incredibly lucky to be able to choose what I want for Dametrius this fall because he’s an older child and I can still work if he does e-learning. I’m also lucky because if he were younger I could afford extra childcare. I know this is my privilege.
Ok, so back to choosing the least amount of change for your child if that’s possible for your family. I believe that in coming out of Shelter in Place what we hoped for was some normalcy following the restrictions. Currently that isn’t happening and so our nervous systems are overloaded with the ever changing information and choices. It’s wreaking havoc on all of us. I literally just told my husband he couldn’t ask me to do things today because I’m overloaded, then I asked him to cook dinner. Martin responded, “so I can’t ask you anything but you can ask me?” I paused, then a deep sigh, “yes that’s exactly what I’m saying & I have therapy at noon.” God love him.
If we chose an education plan for our children that would remain the same regardless of restrictions ever changing, we can eliminate this nervous system overload (hello anxiety) and create some calm. By choosing a schedule that you will least likely have to change for your child you can eliminate some nervous system overload for your whole family.
Keeping children with ASD in mind
I also want to take a moment and speak for children with autism. Because, you see, constant change is harder than it is for neurotypical children. My recommendation to create a stable schedule triples when it comes to children with autism. The ups and downs of every changing schedule is a ton for them to process. If you are a parent of a child with autism I would strongly recommend to rely on therapy schedules and clinic settings as the primary structure for your children. We are ramping up our own programs in Castle Rock, Naperville, and opening up a South Side Chicago location this fall to address this need. These won’t change in the midst of COVID and will provide a wonderful way for your children to continue to have structure, socialization, and make progress. This was true prior to COVID but even more so now I think these clinic structures are important.
Okay, so now we’re gone through the choices. The limited ones we have. You’ve heard my recommendation to limit changes the best you can. Now what? Grace, grace, grace. These are not easy times. Collectively and individually we are all grieving. Downplaying what is individually hard for you does nothing to help us all through 2020. Remember I wrote about this before? Personally I’m incredibly upset that Dametrius won’t be going in person to high school. He is a beautiful person, new to our family, and I want nothing more than for him to make new friends and play football on Friday night. It’s not coming. I’m going to need to grieve this. Henry will not be making new friends, he’s stuck with us. I’m grieving this too. Declan, well, he’s 16 months (today!) and for that I’m thankful.
All individual fear big and small matter. Make the decision best for your family, give your great big heart a hug, and feel those feelings. Then call someone making a choice different than you and let them feel those feelings too.
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.