I met with a fellow autism-mom last night for some cocktails and commiseration. It was kind of like my inauguration into the exclusive Spectrum Club. Oooh! What a fancy club to join! On Big Rich Texasthey have the Fashionistas… This is sort of the same. We talked about clothing- weighted vests, headphones, the latest in sensory-sensitive fabrics. We talked about the charitable causes that we support- doctors, private schools, therapists. We talked about our endless hours of charitable work- at our jobs, for our families, in the schools. We don’t get invited to too many red carpet events, or pose at too many step-and-repeats, but that’s only because our kids don’t tolerate the flashing lights too well. Don’t you want to join? Not so much? Well, me either.
After a few cocktails, we switched topics from the basics of IEP and understanding the alphabet soup of spectrum acronyms to the darker side of autism- the depression that you experience at diagnosis, the grieving period that extends out for years when you realize that the life you always dreamed of (for your child and your family) will never be, the sacrifices that you make- missing work to be at doctor’s appointments, missing doctor’s appointments to be at work, missing date nights, nights out with friends, normal friendships. We bonded with tears in our eyes as we talked about how damaged many of our friendships have become because our friends with neurotypical kids, or no kids at all, simply can’t understand the immense stresses that we’re under. There are only so many times that you can tell a friend sorry, but no I can’t make it, before the invitations start dropping off. We compared the number of times friends have confronted us for ignoring them or hating them. Finally, someone understood what it felt like to be on my side of that conversation. The side that says, “No, I don’t hate you. I just don’t have the energy. I don’t have the strength. Anything that I have needs to go to my family. Please, please understand that.”
We talked about our careers and how deeply important they are to us- how we have control and respect when we walk in the door to our offices each morning. We shared stories of having to run out to doctor’s appointments, have gut-wrenching sessions where we’re forced to witness our child’s painful challenges, and then fly back into work with a smile on our faces as if nothing ever happened. We are actors, faking our way through the play at every stage, all in the name of survival and trying to create some order of normalcy.
We shared the strong foundations that we each have with our partners, our husbands. How they are strong rocks that we’ve each witnessed crumble in tears. How our marriages are forever altered, bringing us closer together but somehow, also further apart.
We agreed that the last priority in all of this is the parent, even though our sanity and well-being should be at the top of the list so that we can adequately care for our babies. But our needs come last, our health is a low priority, our sanity… well, we keep weaving fragile threads into the ribbon that keeps it from flying off into the atmosphere.
We acknowledged PTSD and the studies that show that autism parents have PTSD symptoms similar to war veterans. We quickly moved on.
This club, it’s getting bigger and bigger. Less and less exclusive by the minute. I really don’t want to be in it, but I may find that the only one’s who truly get what we’re living with are those in the same boat with us. I can promise you one thing though, I do not want to be the Queen of the Autism Ball. I would rather be the wall flower, wearing my headphones and dumping vodka into the punch bowl when no one is looking.
When I'm not spiking the punch bowl, you can find me blogging at www.verystrangebird.com.