One of the Hardest Conversations I've Ever Had

I'll be posting more about my recent trip to Europe over the coming weeks.  However, one thing that happened yesterday stood out for me.  It was one of the hardest things I've ever had to do.

My son, Danny, is one of the sweetest people you'll ever meet.  He's 18 and on the autism spectrum.  He's very high-functioning, but like most kids on the spectrum he tends to get over-stimulated at times by things around him.  The solution for most people on the spectrum is to "stim".  For him, that's bouncing around, sometimes flapping his ears or arms, and grunting, sometimes to music.  Sometimes it's just disengaging himself from the real world.  Sometimes he does this with earphones, sometimes he does it without.

All his life, I've tried to give him the space to do what he needs to do.  I'll just try to let him know when it's an important time to pay attention.

We didn't have any issues on the trip to Barcelona.  On the way home, however, he was dealing with two weeks worth of new situations and new places and a lot of over-stimulation, plus some stressful travel situations over the 24 hours it took us to get home.

In Barcelona, at the airport, we had to go to the agent to get our boarding passes.  He stood behind me, disconnected and swaying back and forth.  I didn't think this was particularly alarming.  Apparently the agent at the counter did.  I saw him go over to his supervisor and thought it had something to do with the reason we were kicked out of the automated process and sent to the agent in the first place.  When I heard her say "go ahead" I was hoping it was a complimentary upgrade!

It was not.  As we went to our gate there was secondary screening to go through.  Most people were waved through.  Maybe 10% of our flight was designated for additional screening.  Danny was one of them.  They asked if he was an adult and I said "He's over 18, but I'm his legal guardian.  I have paperwork if you need to see it.  He has autism."

I don't normally put it that way, but wasn't sure of the language barrier.  The security agent said "that must be why" and let me go with him.  They screened all of what he was carrying both by hand and with the xray machine as well as giving him a pat-down.  He had seen me go through this every time we went through security thanks to my knee replacement, so it didn't phase him at all.  Security in Barcelona was very good, talking to him the whole time.  The security agent we first talked to kept him talking about Pokemon and he was relaxed the whole time.

Most of the plane trip was fine.  He was calm and relaxed, watching movies.  When we were waiting at Philadelphia to deplane, there were issues on the runway with getting to our gate.  This started to stress him and he started his grunting/humming on the plane which caused people to turn.

I've read the stories of people on the autism spectrum not being allowed on planes because their behavior scared the pilots or other passengers.  We know they are harmless, but the general population doesn't, especially if they don't have a family member on the autism spectrum.  I was very aware of this an what had happened in Barcelona as we finally got off the plane and headed to Customs.

I turned to him before we entered the line and told him this: "I don't care when you do this at home, Danny.  I want you to know this.  I know you have to do the bouncing and waving hands and make noises to relieve the frustration, tension, and stimulation.  And that's okay.  It's okay when we are home.  It's okay when we are in the cabin on the cruise ship.  It's okay when you are with your friends.  It's okay with people who know you.  But some people don't understand.  It scares them.  That's why you got pulled aside for that screening in Barcelona.  You need to hold it together when we are going through Customs and going through security."

My heart was broken.  It's honestly the first conversation I had to have with him that pointed out he was different and sometimes that's not good.  We've always accepted this as just part of being Danny.  He's been lucky enough to be raised in a small town where so many people know him and accept that's just how he is.  Most of our travel is by car, so we have no issues.  I definitely came away from our travel experience home thinking this is another of the reasons I prefer it to air travel.

We were already stressed and tired from a long travel day.  We got through Customs without further incident, but thought we were going to miss our connection.  I was stressed and sad and spent most of the dash between terminals with tears in my eyes.  I'm tearing up repeating the story.  I was more likely to get pulled out for a deeper screening at the next security checkpoint than him, I was so emotional.  He froze up there, too, when they talked to him as I was getting my pat-down because of my knee.  I thought we were going to have an issue, but we didn't.

He made me laugh, though.  After running to the gate and thinking that despite the fact that we were three minutes past departure time the plane was still there, I went to hand the boarding passes to the gate agent and asked "Is this the Boston flight?"  She answered "It's not boarding yet."  There I was, exhausted from my run/trot, breathing hard, sweating.  Danny said quite loudly "Seriously? Really? Really?" A guy sitting nearby was laughing hysterically listening to him because of the way he said it.  It was the perfect response, that no one else probably would have said out loud like that.

I love my son, and I've often said I wouldn't trade the way he is for anything.  He's so sweet and kind.  I wish the world was better able to handle him.