A few Saturdays ago was my twentieth high school reunion. I had a ton of things to do that day, not the least of which was running three different children to three different activities before noon. After that was over, there were errands to run, and of course, time needed to get ready. The day was planned out carefully in advance, my parents being nice enough to help out.
My dad came into the house with his huge, "hell-OOOO" which sounds like "yell-OWWWW" and a smile. He's a busy man, my father, and often times when you are talking to him you get the feeling there's a mental clock ticking letting him know your time is almost up. You have to talk fast. I could tell from his demeanor this was one of those times. There was a checklist of items he needed to make sure he communicated before he would be out the door. After getting through the first few items or so, he remembered something not on the list. This has happened about, oh, ten times.
"Oh, yeah, so I wanted to tell you," he remembered suddenly. "I wore that pin the other day. I know I tell you this all the time, but man, any time I wear that pin, at least five people start a conversation with me about it. I ended up talking to a bunch of nice people, several whom want your web site and email address. Would you mind writing that down for me again? And you know," he continued, implying somehow this was my fault, "you should really have a card."
My father talks with easily thousands of people a year and has for over thirty years. The pin he is referring to is a blue Autism Speaks puzzle piece he puts on his suit lapel. No matter how many times I have told him I don't have a web site but that I write for Age of Autism, he doesn't remember. And no matter how many times I explain to him that I don't support the blue puzzle piece organization, he doesn't pay attention. He doesn't support them either, he says when I bust him,"but it always starts a conversation." Okay, whatever. Anyway, dad.
I wrote down the information and listened to him describe the same conversation he has had multiple times. I know because many of these people email me or friend me on facebook. This one's grandchild has Autism, and they want to make sure he's taken care of. This one was a teacher for forty years and never saw sick kids like her grandchildren. This one is a young couple that is trying to buy a house but just got the bad news and don't want one by a lake anymore. Regardless, it always ends the same. "You should really talk to my daughter..." And so they do.
We spoke briefly and soon he was back in check with his internal clock. Dad gave me a kiss, told me how proud he is of me, and yelled out a collective good bye that reverberated through the house so all the kids could hear. I love my dad dearly.
The day continued as planned, and by 5:30, I was ready to head out. One of my best friends picked me up right on time. We snapped photos like we were going to homecoming and giggled in excitement as we tore out of the driveway. We pulled up in time to help our other friend, the coordinator, finish up with the last minute touches. Shortly afterwards, our classmates began to come in. (All names have been changed.)
Hi, Jayson! How are you? It's so good to see you! Really? That's fantastic! Gosh, you look the same! Oh, thanks! No, really, thanks! You, too!
And so it went for the first half hour or so. It was genuinely good to see everyone doing so well. I had some wine and made my way around the room. There's Mike! Oh, gosh, I wonder what's up with him?
Hi, Mike! And then it started.
Mike got cancer last year. He had surgery and appears to be doing well.
No, they have no idea why it happened, but life is good and my two children are growing up fast. You have a child with special needs right, Julie? I thought I heard about that. Did you use Early Intervention Services? What did you think of them?...Well, no, they seem okay. One of mine has a pretty bad speech delay, and the other, well, he has this thing about insisting on walking on his toes. He has sensory, sensory, sensory something...Sensory Processing Disorder?...Yes! Sensory Processing Disorder, but they think his toe walking is just a habit now, not a real problem...Mike, it's a problem. You need to trust me on this...Oh, no, Julie, I'm making it sound worse than it is. It's fine....No, Mike, it's not fine.
And so it went with Mike. But there's Sandra! Sorry, Mike, I have to run. I've been dying to see her!
Sandra, Hi! Hugs and kisses.
Oh, you look amazing! You too! How are you? And who's with you? Your sister? How nice of you to come! Did you go to school with us? Oh, three years ahead of us? Wow, that's great.
"Julie is really involved in all things Autism," Sandra blurts out immediately. I feel exposed and taken off guard. I had no idea how many people knew this about me, but so far, it's 100%. She explains.
My sister's son is on the spectrum...Oh, I'm sorry...Yes, it's my daughter...She's doing phenomenally actually, thanks...Yes, we did do a lot of things for her.
Now the awkward pause. Is this someone who will push that and ask for specifics? And if she does, is that going to force me into yet another uncomfortable conversation about vaccines, toxins, and our messed up world when damn it, all I want to do is have some wine and hang out with people like me who had never known anyone with Autism when we were in high school? Yep. She wants to know.
I don't mince words anymore. I simply don't have the time or desire to make my experience more palatable to people. I really mean that. If you think I'm a lunatic, I don't really give a shit anymore.
"That's when it happened to our son!" Her eyes open wide as she gasps. "At 18 months! I took him in for his shots and within a few days, he was gone."
Her eyes tear up as she speaks the words. She's still "in it", as I like to say. It took me many years to get to the point I could speak of the descent without tears. She's not there yet. We grab hands, now bonded for life having known each other for all of two minutes, and she continues, squeezing them hard.
"You wanna know what the kicker is?" She smiles but not sincerely, still fighting back the tears. "I'm a trauma nurse. My husband is a surgeon. We are so overwhelmed by the betrayal of our profession. We feel completely bamboozled."
She and I continue talking a few minutes longer when a great song comes on and we decide to dance instead. The air is lifted momentarily, and I go back to that time when life was simple. Fifteen minutes goes by. Tops.
John! Oh, my gosh, John! I had no idea you were coming! It's so good to see you!
John and I catch up, and as we are already facebook friends, he knows a little about my situation. I'm beginning to regret how much of my life I put on there for a moment (about ten other people by this point have already mentioned something about it) when he grabs my arm and says sweetly, "Don't ever apologize for that, Julie. I know what it's like to have a sick kid, too. My daughter was diagnosed with leukemia when she was two. You never get over it."
My mouth drops. In a matter of less than an hour, I have just talked to three people I haven't seen in twenty years, and among us, one of us has had cancer, and one or more of each of our children is sick. Really, really sick. My head is spinning, and it's not from the wine.
We change the conversation to lighter things, and I'm happy to learn his child is in remission and doing well. But I kid you not, it is only a few conversations later someone else is asking me for advice about Autism or telling me about their neighbor, their nephew, or their own child. It's a dark shadow cast on an otherwise bright night, and it sticks with me until the morning.
I wake up with a slight hang over, grab my coffee, and log on to the computer to see if anyone has uploaded any photos. Instead, it appears I have some new email.
Hi, Julie. You don't know me, but I got your email from your father. He thought you might be able to help us...
I lean back, take a sip and get ready to launch into the lengthy and personal response I write to whoever reaches out to me. As I collect my thoughts and breathe deeply I have a haunting thought.
The more things change, well...the more things change. And one of my biggest fears now is that some day people won't remember how very much, and how very quickly, they have.
Julie Obradovic is a Contributing Editor to Age of Autism.