How many of you remember MC Hammer’s song Turn This Mutha Out? Well that was our theme song whenever our family entered the park, zoo, church, a family event you name it. We knew it was a 50/50 chance that we might “turn this mutha out!”. This was before Australia.
I felt like a flight attendant because I would pass out a map/outline of wherever we were. I would point out two exits to Rob in the front and tell Harrison where the other exits were. I pointed out the restrooms. I would remind everyone where we parked D4, remember it! I took a picture of the kids in case we lost them. I made sure we had all medications and the seizure action plan ready. Then I would sprinkle them with holy water and pray for the best.
That heightened sense of stress, not knowing what would happen next was torture. It made it almost impossible to enjoy the moment with the kids. I would fake a smile and be on high alert in case I needed to jump into action. I would do my best to take pictures and capture the memories. If Sydney needed a break. I would leave with her. Sometimes we drove in separate cars so that it would be easier, if Syd and I needed to leave. Some outings were pleasant and Harrison would say that we were just like a normal family.
It came to a point where I felt safe only when we were at therapy sessions, hospital visits and autism friendly events. I felt like we didn’t fit in and weren’t accepted anywhere else.
I have to thank my friend Hatty. She was a middle school special Ed teacher. She embraced our family and her sons loved playing with Harrison and Sydney. Hatty would come over and force us to go out to public events. And for that I am forever grateful. I learned to take baby steps and have a visual schedule for Sydney so that she knew what to expect.
Now we have new theme songs for our family. Harrison picked too many songs to list. Sydney picked I’m Walking on Sunshine and I picked Girl on Fire.