I am New York City bound. It will be the first time in nearly eight years that I have taken a solo trip anywhere, but perhaps the grocery store. As I review the trip preparations spread out before me, I am struck by something. None of them are for me.
All the prep I have done in the past week has been for my eight -year-old daughter who has autism.
I have a file of correspondence with her teacher about my trip, anticipated reactions my daughter may have and a copy of the social story I created called “Mom Being Gone.” I have a pile of clothing for every conceivable type of weather – for school spirit day (options for participating in the day and alternatives to wear if she opts out), pjs, casual wear, stuffed backpacks for swimming or outings to the zoo.
I have three boxes of stuffed animals: ones to sleep with, ones to give check ups to, and the full cast of Monsters Inc characters, because missing one signals a potential autism apocalypse. A box of new surprises for distraction, sleep refusal and to act as a silver lining to my absence. And in cases of extreme melt down emergency, two new shows for the iPad.
My husband gets an outline of routines so complete it reads like an instruction manual, and I have arranged friends to check-in with him, so he can have daily adult conversations. A sanity saver for any parent on 24/7 duty. And the final prep: a fridge and pantry so full of all the needed and preferred foods that there is no danger of having to navigate a grocery store run with a child feeling undone by a major change to her routine.
As I mentally check through what I’ve prepared, I worry there are hundreds of small things I forgot. It’s these small things that really worry me, the things I do everyday that I’m unaware of, because they are as automatic as breathing.
All this time spent planning for the foreseeable “unknowns” in my daughter’s days without me felt huge. I’m used to putting out little fires and being there, tools in hand, to ease her day. How do you prepare others to take over a role you often forget you’re doing? It consumed me, and on my departure date, I found myself grasping a hasty scribbled list of a few items I would need to survive four days in the big city. In under 30 minutes I was packed.
When I landed in New York, I had a mild shock as I walked off the plane. I had no plan for this trip, other than a vague sense of why I came.
Since my daughter’s diagnosis almost five years ago, every task and event in our lives needed to be carefully planned – in some cases down to the second. It is how she needs to navigate the world. This is the exact opposite of how I navigate the world, and it has been hard for me to learn.
So, no plan after YEARS of planning was a delightful gift. I made plans in the moment. I changed my plans at the last second. I saw four movies and a play in one day. I bought socks at midnight in Times Square.
It was heady, this level of freedom. This is my natural state, and it was a reminder that I must occasionally live that way for a few days, or hours, something spontaneous carved out for me.
To make sure my daughter can get what she needs I learned (and am still learning) how to live outside of my natural way of being. It isn’t always easy, but it’s doable. It makes life easier for all of us when her needs are met. But this trip brought home an important parenting rule, especially when you’re parenting with autism. I can’t lose sight of my needs.
Those preparations I did before traveling (only the food was used), taught me that I need to balance our two ways of being, finding ways to fulfill us both. Oh, and to always double-check for socks.