Our Autism journey started in 2012 when the Navigator was diagnosed. At first there was a mad scramble to learn as much as we could – a steep learning curve, both learning about the therapies the school provided, as well as finding our way through understanding what Autism meant for the Navigator and how to help him manage it.
Three things helped immensely in this process: Clear two-way communication with the school; learning from others’ experiences in the Autism world; and at home paying close attention to patterns and being flexible based on that pattern recognition.
Over the last three years I have developed a personal set of rules, things that I have learned that have become the foundation of our Autism journey.
1. Eat, drink, sleep, breathe patience. I have learned that I have within me deep wells of patience, more than I ever realized I have. The patience lives where the love grows. I have also learned under what circumstances patience seems to leak out of me – usually when two or more people are asking me questions at the same time.
2. Let it go. No, not my recently-revealed powers of winter. I work to let go the worries, the what-ifs, sadness or guilt over failures, things I missed, missteps, lack of patience, etc.
3. Value my husband. The Navigator needs both of us, and we need each other. We are an integrated team, interdependence based in love of each other. Yes, it does not always work as efficiently as it could and yes, we both make mistakes. Then I refer back to numbers 1 and 2.
4. Do all the things. One of the things I most deeply believe is that I owe it to my son not to deny or deprive him of experiences based on his Autism, which means we must develop strategies, tool, and supports to make it happen.
We go to the movies, we go to crowded places, we fly to London, and we prepare for it to maybe not go well, so he can learn how to prepare for, engage in, and rejuvenate from each.
5. Ask him, trust him, believe him. My son may not know everything by virtue of his age, experience, and development, but he knows a lot and he is the only one who knows what he is feeling. If I want to know what is going on with him, go to the source.
6. Trust myself. I am always doing some kind of analysis for the Navigator – it is non-stop. From letting him watch a movie to eating just fried eggs for dinner to not buying the video game he watched on You Tube. I gather information, listen to perspectives and then make my own decision.
7. Refine. It’s ok to try something and it not work. Take a look at the need, what worked, what didn’t, refine the idea, and try again.
8. Step back. It is easy for me to get mired in details. I am not afraid of details and details can be my friends, especially when looking for patterns. Too much attention to details, can mean I miss big-picture lessons too. It is important to step back and see the whole now and then.
9. Sometimes it isn’t Autism. Looking at the world through an Autism lens can make everything seem related to Autism. A lot of times, things that happen don’t have anything to do with the Navigator’s Autism. In those cases, I refer back to number 8.
10. Enjoy the curves. Our lives are not linear, they are not predictable straight lines. They are two-steps-forward-one-step-off-to-the-side sometimes. Since I can’t see around the next turn, sometimes it is easier just to sit back and enjoy the new views.
What personal rules guide your Autism journey?