Playlist for this post:
- Teardrop – Jose Gonzalez
- Mountain Sound – Of Monsters and Men
- Shine – Benjamin Francis Leftwich
“Some hid scars and some hid scratches
It made me wonder about their past
And as I looked around, I began to notice
That we were nothing like the rest…”
Wow, I cannot believe we have not blogged since June! Well, suffice it to say, we’ve had our hands full – from work, to ramping up Fox’s Applied Behavior Analysis Therapy (ABA) offered through UW at school, ramping up evening ABA at home in the evenings, and Parent Coaching based on the Early Start Denver Model (ESDM) for Children with Autism – on top of trying to have a few fun family moments too! So that’s what this post is about: ABA Therapy and everything we’ve learned thus far on our journey. Highlights from the Fox’s summer include playing in the water at Redmond Town Center, swimming in a pool for the first time, going to the beach at Idylwood Park and pressing his toes into the sand and into the water, learning how to sign “more” and “please”, saying his name, exclaiming YEAH! and “HEY!”, and Mum, and DaDa (though not as often as we’d like – he can do it!), to running around the Redmond Public Safety grounds, creating sidewalk chalk art – every day, and discovering Moana and Lin Manuel-Miranda. Overall, I’d say it’s been an extremely exhausting but quite successful summer.
I will be the first to admit that things have not been easy for us since moving so far away from our home base of Indianapolis; in fact, it has been the most difficult 18 months of my life to date (and if you know me at all, you know I’ve had some doozies in my lifetime!). There has been one very shiny, sparkly silver lining in the grey clouds for us: The University of Washington. If there was no other reason for us to move to Washington, being here to receive early intervention services that allowed an early, nearly immediate diagnostic evaluation for our son (16 months), a diagnosis (17 months), and ABA therapy to start helping us and Fox (19 months to present age), made the 2,000 miles move, every tear, every moment of heartache, worth it. I get quite emotional thinking about the amount of world class help and support that we have found in Washington through the University of Washington Autism Center (UWAC), as well as Kindering for the Early Intervention Services that kicked us off on this journey. Through UWAC we have received diagnostic evaluations, family support, ABA Parent Coaching, BCBAs, and their ABA services. Truly, I do not think there is anything like the amazing staff there – from the Intake Coordinator to the Director of Clinical Services and everyone on the staff in between. They have provided invaluable knowledge to us to best help our son. As such, I will rock the purple and gold and UW gear for the rest of my life. And one day, I hope that Fox can continue our learning adventure and take some courses from UW himself.
I’d love to talk more about ABA in this post because it has been our strongest focus over the summer and has produced amazing results for Fox and for us. To do a little more research about ABA, I highly recommend the book: “An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn” by Sally J. Rogers, Geraldine Dawson, and Laurie A. Vismara (Spoiler Alert: Geraldine Dawson was the Founding Director of the University of Washington Autism Center). Applied Behavior Analysis (ABA) “is the use of teaching practices that come from the scientific study of learning to teach or change behavior. The principles of ABA can be used to teach new skills, shape existing behaviors into new ones, and reduce the frequency of problem behaviors” (Rogers, Dawson, & Vismara, 2012). When we first started reading this book, I remember thinking, this is all so overwhelming. Fox can’t even look at us or follow our gaze or respond to his name being called, let alone engage with us or play with us. How is this going to work? We were fortunate enough to get to work with Desmond’s Board Certified Behavior Analyst (BCBA) Cameron and the Director of Clinical Services, Dr. Greenson each week for 2 hours for ABA Parent Coaching, which walked us through 1-3 chapters of this book a week. We would then meet up the following week, go over highlights from the chapter, what we were struggling with, what we were able to implement, any new noted behaviors we’d seen, ways to put into place information from the book going forward into the next chapters, etc. This also allowed Cameron the opportunity to get to know Desmond first hand through experience, while we were present to watch and learn as well. She would interact with him weekly and he was able to comfortably get to know Cameron in a safe space. These sessions were pivotal moments for me after being given the Autism Spectrum Disorder, Severity 2 diagnosis for Desmond in March. I felt understood, I felt that others understood my son and would be able to help him, and I saw a spark in Desmond many times in these sessions of play and learning that showed that he was really getting something positive out of the experience as well.
So what is ABA Therapy? ABA Therapy breaks down the ABC’s of learning, which is: “antecedents (events that immediately precede a behavior), behaviors (your child’s goal-directed actions), and consequences” (Rogers, Dawson, & Vismara, 2012). One of my favorite things about ABA therapy that is similarly in line with Fox’s school, is that it uses play based therapy, so it follows the child’s lead in play and as such creates a calm, inclusive, and fun environment to maximize participation and increase the likelihood of successfully learning new behaviors and skills. Using the scientific methods behind ABA Therapy, we have been able to motivate and teach Fox all kinds of new behaviors and life skills like pointing, following our gaze, responding to his name, bringing us toys to play with, cleaning up his toys once he’s done playing with them, engaging us directly to communicate, even if it’s nonverbal communication, responding to our verbal requests, bringing us food from the pantry when he’s hungry, taking turns, enjoying others socially, etc. These are all joint behaviors, meaning more than one participant; i.e. to tell us he’s hungry, Fox will bring us a box of graham crackers from the pantry. He must bring us the graham crackers and point to them to tell us he is hungry and would like a graham cracker. During this time, he’s also vocalizing to communicate with us. He may not be able to say, “I’m hungry” or “cracker” but he is doing everything he can to get our attention and let us know that he is trying to communicate with us. Joint attention is one thing that is infrequent in younger children with ASD – so these gains that he has made in the last 3 months are astronomically huge in our home. Many of these new behaviors for Fox you wouldn’t even notice as being anything new or out of the ordinary yourself – you would think, he’s just acting like a normal kid. Side note: We say neurotypical kid in our house. Normal is a setting on a washing machine. Understanding the ABC’s of learning has allowed Adam and I to break down and understand behaviors that Fox has as well, and if there is ever a meltdown (*which is quite rare for us, honestly – even with being a toddler AND having autism. I am perpetually amazed at the calm, joyous personality of our Fox), we can break down the behavior, figure out the antecedent that caused the behavior, and determine a consequence and/or use the understanding of these things to create an opportunity for learning and growth.
Upon diagnosis in March of this year, Fox was prescribed 40 hours of therapy a week (ABA, Speech, Occupational Therapy, etc.). As a not nearly 2-year-old, that kind of intense therapy schedule is impossible for him and us as a family overall to maintain a work-life-family balance, so he currently gets around 20 hours a week, some at home and some in school, including 1 hour of Speech Therapy and 1 hour of Occupational Therapy. The rest of the time, he gets to be a kid and have fun with his friends, learn at school, do artwork, and take long walks on the Sammamish River Trail with us. Even with that attempt at balance, we constantly feel like all we do is work and do therapy / learn more about autism, go to bed, wake up and repeat. It’s like Groundhog’s Day around here sometimes. Even if we’re attempting to do something fun, at least for me personally, I am always worried or thinking about autism, behaviors, Fox’s future, what progression he’ll make and at what cost with other regressions. Will he ever go to school? Will he be able to make and maintain lifelong friendships? Will he be able to speak? These are questions that I cannot answer yet, but what I do know deep in my soul is that we are doing absolutely everything that we can to ensure that Fox is the best Fox that he can possibly be while still enjoying life and school and his friends and time at home with us.
If you would like more information about our experience at the University of Washington or our experience with ABA Therapy or Early Intervention Services, or you have questions, please do not hesitate to reach out and contact us! It is our hope that through this blog, we can share our experiences and teach the world a little more about autism for there to be better awareness, understanding, and compassion overall.
Special shout out and gracious thank you’s to Fox’s YiaYia and Grammie for purchasing “An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn,” and reading along with us each week to also learn alongside us and be there for our Fox.
Bibliography
Rogers, S. J., Dawson, G., & Vismara, L. A. (2012). An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn. New York, NY: The Guilford Press.
