Tuesday, March 31, 2015

Shades of Grey

My friend, Kelly, calls me a "shades of grey" person.  I like that she notices, because that's how I view myself.  My world is full of grey.  I was much more certain of things when I was younger.  With each "trip around the sun," as John says, I find the world is more complicated.

I'm reminded of this at the moment because April is "Autism Awareness Month."  I follow multiple autism facebook pages and blogs, and read a great deal in the news on the subject.  The subject of Autism Awareness has become controversial.  Thoughts range from autism research and support groups looking for cures and therapies, to autistic bloggers and advocates who want everyone to embrace autism as a neuro-diversity issue.

Me, I'm in the middle once again.

When Alex was first diagnosed with autism, there wasn't much of a conversation at all.  Autism was relatively unknown, and the incidence rate was thought to be 4 in 10,000.  I didn't like much of what I read, so John and I were left to figure things out on our own.  Very early on, we knew that chasing every promised "cure" was a potentially dangerous endeavor.  At the core, we never wanted Alex to feel that we had to "fix" him because he was "broken."  Every "therapy" we pursued or designed  was to make his life more manageable and to help him feel secure and loved.  Some behaviors we worried about when he was younger, we no longer worry about.  We don't care if it bothers people when he flaps or vocalizes.  He is who he is.  We ask him to be respectful in a restaurant or theatre because we think it is important, but Alex's behavior may still look different from other people's. We're okay with that. 

So I do bristle at the thought that he has to be fixed.

On the other hand, I can't simply embrace his differences as a matter of neurodiversity.  His autism often makes his life harder for him.  When he was going through puberty and would have episodes of self-injurious behavior so severe he would rupture blood vessels in his eyes and bruise his own face, that's not just a difference.  His autism means we can't communicate with him about his cancer and aren't sure what he's experiencing or even if we're supporting him in the way he wants to be supported.  Autism has often been unkind to Alex.  He won't go to college, marry, have children, or even live completely on his own.  So no, I can't jump on the bandwagon that says all is well, embrace the diversity.

So what do I wish people knew about autism?  I wish they knew that sometimes autism is cruel.  It is cruel to the individual and to the family.  It robs us of our dreams.  I also wish they knew that being different is okay.  I wish they knew that the success stories aren't only the ones where children become "indistinguishable from their peers."  Success can be a young man living away from his parents, establishing relationships that mean something to him with roommates, co-workers, friends, and caregivers all of whom are outside of his family.  Alex isn't only his autism but, at the same time, it is an integral part of him.  I wish his life were easier, but I don't wish him to be different.

Alex's life has value.  He is a worthy person who contributes to the world around him.  People often tell us that Alex is lucky to have us.  They've got it wrong.  We're lucky to have him.

Shades of Grey by the Monkees.  Give it a listen.


Sunday, March 29, 2015

Clipboards in the Waiting Room

March 29, 2015

This week there were two clipboards in the waiting room.

The "clipboards" are the new cancer patients.  They get a clipboard and a stack of forms to complete.  I recognize the wide-eyed, vacant look in their eyes.  That was me a few weeks ago.  That was us.  Now everyone in the office knows our names.

We were the new clipboard family six weeks ago.  John, Jessica, Alex, and I were all together.  The paperwork is always my job.  Jessica and John found a place to sit.  Jessica found a bench, where she could literally and figuratively attach herself to her brother.

Cancer.  The word is terrifying.  Worse than Voldemort.  Maybe we should say "the disease that must not be named."  But then we'd give it even more power than it already has.

Cancer.  The word that turns your entire world upside down in an instant.

The day that we were the clipboard family I filled out the forms.  Jessica sat next to her brother.  He fell asleep, sitting up.  She tried to get him to lean his head on her; tried to make him more comfortable.  He was sleeping to escape.  We were awake, but it felt like we were asleep.

He actually started to snore, which made us laugh.  We were grateful, in a way, that he was asleep.  But then we were worried, too.  Was he sleeping from stress, or because he was so sick?  He seemed to be getting sicker by the day.  Maybe he was sleeping to avoid feeling our fear, and our stress.  We were trying to be brave for him, but Alex always knows how we feel.  I think sometimes he's like an empath - he always knows what I'm trying to hide.

So how do you explain to a 24 year old man, a man who happens to have autism and to be almost completely nonverbal, how do you explain to him that he has a life-threatening illness?  We did what we always do.  We told him the truth.  We explained the best we could.  And we willed him to trust us.

But back to the clipboards.  I filled out our paperwork that first day, and then I watched the room.  We arrived early for our appointment, because that's what we always do.  We are considerate, even when we have cancer.  (And yes, it's "we."  The cancer is in Alex's body, but we are here to do battle with him.  We would take it from him, take it over for him, if we could.  John, Jessica, and I waging an epic battle with one another to see who would get to stand in Alex's place.)

So I watched the room.  There was one other "clipboard" that day.  The waiting room was crowded.  The office was buzzing as people moved about.  Our appointment was over an hour late.  Unexpected delays, but the nurse checked on us and apologized.  But what can you do?  Our appointment was a matter of life and death, but so was everyone else's.  Perhaps we had to wait because someone else was closer to death at that point than we were.  Alex snored, we fidgeted, the clock ticked slowly.

I watched. I wanted to see how things operated.  People walked in and were greeted by name.  They got a piece of paper (no clipboard after the first visit) and took a seat.  They got coffee and cookies.  Then someone came out and called a name.  The patient went back, but returned a short time later and sat down again.  A short time later, they got called again.  Then they disappeared.  I watched and tried to see how things worked.  I tried to feel the atmosphere of the room.  It felt safe.  It felt calm.  Those of us with the clipboards were the most frightened.  The receptionists, nurses, and technicians knew everyone by name and greeted them like old friends.  Some people were there alone; others with friends or family.  No family quite like ours.  The patients were older than Alex; almost exclusively middle aged or elderly.  And no one with a developmental disability.

Finally, Alex's name was called.  We all went back.  We started to learn the dance.  Step on the scale, have your blood drawn, get ushered to a room, wait again.

And now we are no longer the clipboard family.  We walk in and are greeted warmly.  Alex picks out his cookie right away and sits down.  "I just put new cookies in the basket," says Stacy.  After Alex's blood draw, the phlebotomist points out new treats in the basket.  I tell her he already had one.  "He can have as many as he wants," she smiles.  (When you have a developmental disability, people really like to give you extra treats.)  We know the routine.  Alex smiles at us.  He is anxious, but it's not the same.  He does not sleep in the waiting room.  We all know that this place that terrified us that first day is the place that will save us.