As I write this, we are in week 10 of the “Stay Home/Stay Healthy” order in Washington state. Over the last couple of days, we’ve seen signs that society is slowing coming back to life. In anticipation for resuming more normalcy, on Monday I actually created a calendar to organize our days. I must admit I was a little excited to see events popping back up on our schedule. For the longest time, it seemed like the only upcoming activities were the ones we made up to keep life feeling relatively “normal.”
You’ll recall, in the beginning of this COVID-19 closure I was freaking out, wondering how our lives could simply just shut down. We had a well-established routine of work, school, therapies, doctors and events. Activities that packed our days, weeks and months. Sound familiar?
But, then BOOM, the shutdown happened for everyone. We all had to come to terms with creating a new life in a new normal since our outside world had shrunk so dramatically over night. Our “old” lifestyle, routine and all the things it offered no longer existed. It was a forced slow down. A time to be with our family like never before – perhaps harkening back to a bygone era of our youth.
At first, it was a big adjustment. For you too, right? But, then we started to relax, reflect and see the positive. We took the initiative to bring the outside activities in to our homes. Started projects we never had time to do. My eyes opened to new possibilities and a way of life, free of the sense that we “needed” to be doing all the things we were doing. Yes, we have been doing really well, in fact in some respects better than before.
Back to Monday. I created our calendar because I was getting emails and texts about our old activities resuming. When would we like to start this class or that therapy again? Instinctively, I jumped back in to scheduling. Forgetting the new way of life we had created over the last 2 months. Thinking, no doubt we should go back to the activities and therapies we participated in before the virus shut them down.
While I was excited and happy to see these activities opening back up, in the back of my mind I felt some anxiety creep in. We had adjusted to a new routine over 10 weeks and now it was all about to change again.
It struck me how Maci must be feeling. If I had these anxious feelings, she must be feeling it too and probably more so. Already so much of her life is out of her control. She has little input or say in the outcome. And now, just as she is comfortable with a “new normal,” here we go again, everything she has become accustom to over the last 2 months is changing.
Would her anxiety trigger her to go into the fight, flight or freeze mode? It is a natural response for all of us. Don’t you have moments, events or experiences which trigger anxiety and your response is to deal with it by either fighting back, wanting to simply flee to escape the situation or freeze in the moment, not knowing how to respond?
For anyone, anxiety is discomforting, but for people with ASD, like Maci, the sense is more severe and harder to manage. Living with ASD means they live with anxiety all of the time, it impacts the way they experience the world. For people with ASD, coping with anxiety is a normal part of life.
As life changes yet again, I know my role is to help Maci cope and manage the return to our old routine as a return to normal begins. And to that end, I turned to a model that I learned about during our visit to the Celebrate the Children school (CTC) last spring.
The Foundational Capacities for Development Model (FCD) encompasses the 5 Cs method which allows us to tailor our environment, interactions, and experiences in a way that fosters feelings of Comfort, Competency, Confidence, Control and Communication (5 Cs).
Feelings of safety and trust are essential for children who often experience the world in a disorganizing and sometimes fearful way. It is important that we think about the physical and emotional comfort, which at times may include having to tailor the environment to promote security, relaxation, and joyful experiences.
Competence speaks to an individual’s ability to participate in interactions and activities successfully. Having a feeling of accomplishment and recognition.
Feelings of self-assurance often contribute to the ability to effortlessly and independently participate in interactions or activities. With that being said, confidence also speaks volumes to a person’s self-esteem and how they approach perceived expectations or demands.
The feeling of power and being in control is a core component of happiness. Additionally, having a sense of control, changes the perception of a task or interaction and increases a person’s feeling of autonomy.
Thinking about a child’s levels of comfort, competence, confidence, and control is essential in understanding how the student communicates. Given that communication is the act of expressing who they are, it is an integral component of a relationship.
The science says FCD’s and the 5Cs are pivotal in developing competencies where movement, motor planning, visual spatial thinking, motor sequences, and communication lead to increased interest and participation in the world, ultimately enhancing developmental success and independence.
That all sounds very clinical, so I interpret this to mean they allow us to be successful in our ability to manage anxiety and control our fight, flight or freeze response. In essence, they allow us to enhance our ability to cope with the experiences we face in the world.
I’ve found it useful to think about these foundations when managing different situations to better understand and identify how to deal with Maci’s feelings and emotions. As society reawakens and we begin to return to a more frenetic schedule, I will be relying on these foundational ideas to ease us back in to our old “normal.” Here are some tools I will use that focus on the 5Cs.
- Create lists, stories with pictures about the experience or event coming up. Setting expectations is key to encouraging a sense of Comfort.
- Allow for sharing of ideas and listening to give validation and a sense of Competence in how to create their experience.
- Offer a lot of positive reassurance. Ask her to make pictures and share stories about what she has experienced. Reinforcement allows for feeling of Confidence.
- Give meaning to the feelings of what is happening, communicate and talk about it. Allow Maci to share her ideas on how to do it together. Ask, “what should we do?” Asking for help instills a sense of Control.
- Relive events and activities from the past and talk about what was fun and who was involved. With Maci, we talk about the therapists, teachers, playground, friends at school or other places. It helps to remember our good experiences. Discussing experiences builds the ability to Communicate.
I encourage you to try incorporating the 5Cs into your family interactions when you or your loved ones feel anxiety creeping in. Here are some resources I turn to when looking for inspiration to promote engaging in the 5Cs:
- Celebrate the Children School – https://www.celebratethechildren.org
- Profectum Organization – https://profectum.org
- Ido in AustismLand – http://idoinautismland.com (very inspirational highlighting presuming competency)
- Pathways to Communication – http://pathwaystocommunication.net/whoweare.php
- Aspiring Youth – https://aspiringyouth.net
- Very Well Mind – https://www.verywellmind.com/what-is-the-fight-or-flight-response-2795194
- Raising Children – https://raisingchildren.net.au/autism/therapies-guide/social-stories
I hope my “go to” methods and resources to help ease the anxiety of returning to a faster paced life. Remember, change and transitions are always challenging. Focus on being mindful and empathetic. It will take time, but you will get there.
Sending best wishes and stay healthy!
Marikay Cuthill is mother of Maci, a vibrant, curious 14-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com
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