Separately Together-Parenting a Special Needs Child
The night could not have been more beautiful, the prior day’s thunderstorms moved out to sea, taking with it the ‘suck- the- breath from you, never-ending, heavy-like-wet-velvet humidity. It was one of the mid-July and the weather showed just the slightest twinge toward a cooler, more forgiving temperature. Earlier in the day, we dropped off the checks for the coach’s gifts, paid the family price for pizza, sliced the cooled watermelon into perfect triangles and gathered all that we needed for the end of the year swim team party. Our fifteen year old had spent the better portion of the afternoon trying on shorts and t-shirts, hoping to find that ‘perfect’ combination that would help to express yet another aspect of her burgeoning independence that continued to be revised daily..
After tidying up in the kitchen, I heard my daughter call for me upstairs. En route, I passed my son’s room, where he read and began to sing his version of “Fly Me to the Moon.” Not sure if it is part of his Autism, the need for input (vibrations) or just the joy of hearing his own voice that encouraged him to sing the same verse over and over again.
As I entered my daughter’s room, she gave me a look. I knew the look very well. It meant that one of us, meaning either my husband or I would be staying home with my son. Evan usually begins to sing as he winds down his day, begins to get tired and prepares to transition for an early evening. We all knew the signs and trying to contain him and/or alter the routine was a challenge that no one was ready, willing or able to do on a frequent basis. It required a great deal of coercion, distraction and sometimes down right bribery. Even if we were able to get Evan to change settings, one of us would need to stay with him in a quiet space away from the hub-bub and noise. So, as a result, we learned to adapt and adopt an approach that would allow for some of us to attend a gathering and/or event. It would require us to remain united in our separateness. Living a fractured existence, was a norm for us, separately together.
“Please don’t bring him, please, I beg you. I need this night to go well,” she pleaded. I looked passed her at the pile of clothing on her bed, the way she had just styled her hair, and the look of complete desperation on her face. How could I say no? How could I deny her this one night that meant so much to her? I didn’t want it to matter, but it did. It was the last night that the town swim team would be together. Many of the seniors were leaving shortly for college, vacations, etc. and the other members were quickly jockeying for a new place in the pecking order. It’s hard to be fifteen, trying to find your footing in an ever-shifting and changing world. Heck, it’s hard to be fifty-three and know who you are and what you want to become. I got it, I really did. Separately together is what the night would entail.
So rather than enjoy the family relays, the chit-chat with neighbors, and the glorious summer sun setting on this picture- perfect evening, I will happily settle for running a lavender epsom salt bath for Evan, as I listen to him sing, watch videos on his latest obession-white blood cells and cozy up to his nightly routine and regiment. For now, I will hold on to the thought that there will be other perfect evenings, ones where we may all spend it together. However, for now, separately together is what we are right now, maybe not forever, but surely for tonight….
