The Pink Elephant
"Misfortune shows those who are not really friends."
Having a child with special needs I am often faced with reflecting on who my true friends are. Coincidentally, the invitations stopped rolling in around the same time as the diagnosis came in.
It is understandable and makes perfect sense. Having an autistic child, especially a non-verbal child in a helmet having seizures with bad behavior, tends to bring down the mood of most celebrations.
Jenny McCarthy says, "...when you get sick with a disease or cancer, people visit you and bring you soup...when you have a child with autism, people avoid you in grocery stores."
It could be my own insecure paranoia but taking the Doodle to a party is like showing up with a Pink Elephant (in the room)...except, I'm usually chasing my pink elephant around because he is out of control, stemming or OCDing and way over-stimulated and then no one is having fun. Especially me.
My pink elephant has a sixth sense. He knows exactly when and how to push the right buttons, yet knows I cannot react the same way to him as I can when we are at HOME. He knows that the "Time Out Swing" is no where in sight and takes that as a full opportunity to really act out. He can completely read my mood and he feeds off the rise in my blood pressure. I've left several parties in tears, asking myself why I bothered to go because it is a cruel reminder of how much my life has really changed. We're no longer normal; we're the entertainment.
It's easier to stay home. I've got the Jerry Seinfeld rolodex of excuses. And, sadly, it takes tragic and life-altering events in life to really see who your true friends are.
I get it about parties and not knowing what to say about the kid in the helmet or how awkward it might be to try to pretend not to notice, yet not be able to break the stare out of morbid curiosity. Why do I know? Because before I had a child with special needs, I was thatt clueless person. I was that person so very grateful to not have to deal with that. So please consider this post anything but righteous. It's just the way it is.
But what about reaching out to a friend who is having a hard time? Does my child with autism now define me? Is that all people see now when they look at me? I'm a package deal with my challenging 44 pound side-kick.
Besides the lack of invites, my phone isn't exactly ringing either. I'm going to take some responsibility in this because that was the intention of this Blog. I created this blog for people who wanted an update on the Doodle's seizure disorder and autism diagnosis because I was too tired and upset to talk about it all day long. I created this blog for selfish reasons, so that I did not have to talk to people and tell the same painful story over and over and over. It was my first step at sheltering myself from my "friends" and even family.
But the friends who talk about me and our situation behind my back because they are too cowardly to say things to me directly....the friend who happens to be a NURSE who never once reached out during our many hospital stays at the very hospital she worked in, the friend who was constantly putting her child who is the same age as the Doodle on the phone so that I could hear her speak in full sentences when my son can't speak just to make me feel badly. Those aren't friends and it took until now to realize that.
I do have a few true friends. I proudly count them on one hand minus three fingers.