The vortex, landmines and me.

“The flowers are gone, the flowers are gooone!” Tears streamed down my beautiful daughter’s face as I tried to explain that the seeds we had to plant would make the flowers grow back. She doesn’t understand and she cries harder- red faced, short, quick breaths, and big heart breaking tears. What she didn’t know is that I was crying with her, as this continued for a half hour, or more. With each tear, each “The flowers are gone!”, I felt another piece of my heart hit my feet. Was it 5 minutes, an hour… more? I don’t know. We were stuck in the vortex of autism.

It was intended to be a fun, sensory activity. My little girl loves nature, dirt, flowers- she loves the many textures and colors that come with it and so I, perhaps naively, thought planting seeds in the ground and in pots would be something she would love. How very wrong I was. Or maybe not. Maybe next week she’ll love it. Maybe.  I’d collected all the supplies over the course of a week or so, excited to finally be able to get outside after a long winter and do something fun with her. I had this vision in my head of all us with our hands dirty with potting soil, laughing, picking where the next round of seeds would go. See, there are times that I forget. I forget that autism is a thief. I forget that it can invade my beautiful little girl and leave us both breathless, struggling to find calm. I forget that she’s not “typical.” It’s easier to do than you might think. In the comfort of home she’s not “different.” She’s D. She loves dress up and sparkly things; she loves to run and play; she loves to explore. She’s a ball of sunshine and fits of giggles that make my heart soar. She is “my girl.” I adore her.

I adore her and I hate autism.

There I said it. I hate autism, with a passion; with a vehemence I didn’t know I could feel towards something I can’t see or touch.

One well meaning friend told me to try to believe that God doesn’t give us more than we can handle. Ha. Pardon me while I spit out expletives I can’t type here.  It may take a few…

Then there are those who will try to tell me that autism is a gift. I can’t be convinced that a gift comes packaged in this kind of pain. Maybe they don’t know this level of heartache- and if that’s true, I am happy for them.

Living with autism is like walking in a minefield, you never know with every step, every activity, if something will blow. You never know what is safe, and what isn’t. Just because it went well yesterday doesn’t mean that it will today.

There are days when I feel like I’ve got this.

There are nights I feel like I’m failing.

There are days when the pressure and stress is so high that I realize I’d forgotten to breathe.

There are nights that she curls up next to me on the couch and together we read, sing, take “selfies” and giggle.

The autism spectrum- it’s not just for those diagnosed. It’s for us, their families, too and just because we’re on the “high functioning” end today doesn’t mean that tonight won’t end in tears. It doesn’t mean that even in those tears, we won’t still hope, still love, still pray. We still believe in the child we love that we can’t always reach, but will never stop trying- even if we feel like we’re pounding our heads on the proverbial brick wall.

It’s not easy. It hurts- and it’s ok to admit it. Sometimes we have to fall apart to find all of the pieces and put ourselves back together- with a little extra glue.