Yikes! What a bold topic to write about this month given all the ups and downs this world is experiencing right now. While it’s common to say “we are all in this together,” it is still an extremely challenging time for our individual emotional wellbeing. Sensitivities are on high alert – and on a whole new level. Most of us find ourselves living in a state of fear, uncertainty and a feeling that life is out of our control. It’s understandably unsettling.
A couple of months ago I wrote about the 5 C’s. The blog was one of our most popular topics. It addressed the 5 C’s; comfort, competence, confidence, control and communication. During that time in the spring, I was really relating to the need for control. I discussed the need to create a calendar to help organize my life in a way that could help me find some sense of peace and relieve my anxiety. I also, wanted to highlight the importance of understanding how this time of high anxiety was impacting anyone living with ASD. And shine a light on how living with anxiety is a huge part of the world they experience every day.
This month, I was once again “given” the topic I wanted to address in my blog by an experience I shared with Maci. I was reminded to step back and be aware of the emotions and signals she was giving me to help understand what she was experiencing.
You may recall back in January I started creating and building a garden with the help of my cousin Aron. I wrote about our garden in March for National Nutrition Month. Maci enjoyed being a part of the process of creating the garden and spent many hours each day with Aron watching and helping him. She asked him endless questions: “what are you doing?” “why?” “what is that?” over and over for hours. He just listened, answered and let her experience what they were doing together. Over the months he was here they developed this wonderful connection. Aron would ask me a lot of questions about Maci in an effort to better understand her view of the world.
Last Thursday, Aron came to our home to check out the garden’s progress do some finishing touches. We had such a great time talking. Maci was excited to see him and couldn’t wait to see what he was going to do this time. I could tell Aron was impressed with the care we had given our garden. He said several times how great it looked, especially since it was our first time as gardeners. Maci and I felt so good and happy about all the work we had done.
Tragically, the next day, Aron suffered a massive stroke and passed away on Saturday evening. Our happy emotions evaporated instantly. Now we were filled with devastation, sadness and heart break. I’ll tell you, it’s super challenging and hard to even write this without being filled again with such grief. Maci and I decided to go to my parent’s place about an hour and half away for a couple days to get away. Before we left, I sent a video message to a few of my friends letting them know what had happened.
As we were driving, I turned to Maci and saw she was quiet and not saying very much. Not totally unusual, but I just felt she may have been experiencing all the emotions and reliving the conversations that had been happening over the last few days. I decided to talk with her about it to check in with her on how she was feeling. I shared what had happened with Aron and that sadly we would not see him anymore. She brushed it off and, in her typical fashion, said “deep breaths mom, it’s okay.”
Last night, I got a message from one of our therapists and a person who has known/worked with us for about 8 years. Turns out, Maci had sent her the video I had sent to my friends about Aron. Even more amazing, she hadn’t sent it to anyone else. We felt it was her way of showing her empathy and understanding for what was going on and how we were all feeling.
For me, it highlighted that most of the time I really do not know what Maci is thinking or how she is seeing the world. But then there are these moments, an experience or action that opens our eyes and shows us, shows me. So, I will continue to talk about our emotions. I have such appreciation for addressing and giving validation to our emotions in the moment. It is important all the time but even more so during this heightened and sensitive world we are living in every day.
While I hope you are not experiencing the grief that my family has endured recently, I do expect most of you have encountered moments of high stress and anxiety. I’d like to share some suggestions and resources I feel can help people, all people, but especially those with ASD, to open up and discuss emotions. I hope they help. And, I hope you and your family are well.
App: Autism Emotion
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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