When the Navigator was diagnosed on the autism spectrum 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 support him.
Three things helped immensely in this process:
- Clear two-way communication with the school
- Learning from others’ experiences in the autism world, and
- Paying close attention to patterns and being flexible based on that pattern recognition
Over the years I have developed a personal set of rules, things that I have learned that have become the foundation of our autism journey.
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.
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.
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.
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 travel to other countries, and we prepare for it to maybe not go well, so he can learn how to prepare for, engage in, and rejuvenate from each.
The goal is to give him the knowledge and tools to be able to do what he chooses to do when he is an adult.
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, I go to the source.
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.
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.
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.
It is important to step back and see the whole now and then.
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.
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?