Why Paul Lee matters…

By now you may have heard about the death of Paul Lee, a 19 year-old autistic student forgotten in a school bus for several hours in California.

If you haven’t heard about him, please read this: http://abc7.com/news/parents-of-student-with-autism-found-dead-on-bus-speak-out/984535/

That this is heartbreaking is an understatement.  This is not  as far-out-of-left-field as we’d like to believe it is.  The services to which our children are entitled are often overwhelmed by the demand of an increasing population.  Paul Lee was too noticeable to miss, it is argued, but how much do people REALLY notice?

As I read the description of Paul Lee, I thought of J.  Big guy.  Tall guy.  Silent guy.  I remembered the time that the bus went round and round for over an hour and a half, and J got home feverish, dehydrated, desperate to go to the bathroom.  I went ballistic.  I called the bus depot.  I called the school.  I wrote letters.  I was outraged that J’s group had been driven around in that way without a single consideration to their inability to communicate their needs with the same ease as neuro-typical students.

On that particular occasion, it is rumored, I made some people cry.  There have been times when I’ve wondered if I overreacted.  I always come back with the same answer: no, I didn’t.

A great push has been made towards not leaving kids in cars.  “Put your shoe in the backseat!”  “Set a reminder on your cell phone!”  Personally, and this might be high and mighty of me, I don’t see how one can forget a child in a car.  I know people lead very busy lives, and their schedules are manic, and it’s here there and everywhere.  Isn’t THAT what we need to fix?  Don’t we need to slow down and try to not be that thinly spread?

In Paul’s case, his mother put him on the bus in the morning.  When she called in the afternoon to ask when he’d be dropped off, they told her he hadn’t been to school.  Only then did they realize something was amiss.

Why wasn’t the mother called when the student was marked absent?  I often get calls telling me J is absent if he is “late” to class…that is, if he walks more slowly due to the sea of people in the hallways and arrives after roll has been called.  I always call the school back, or text his teacher.  This mother wasn’t given this chance; the school didn’t contact her, and she spent the whole day probably doing what we all do: getting ready for her son to get home so she could get on with the business of attending to his needs.

I’ve read some of the comments online, and people have gone to the extent of saying “if he was too stupid to honk the horn, why should he even be in school?”  The dehumanization of the disabled individual is alive, well and kicking.  I would say that, to a degree, it is blossoming and burgeoning.

In the middle of Autism Awareness, in the middle of people saying “it’s all about Autism these days!,” this sort of thing still happens…

Look, I know I’m preaching to the choir here, but this is something I need to say: we, the families, children, adults on the Spectrum are real.  What we do every day is not the informational brochure.  What we live for is not the IEP.  What we aspire to is not the fundraising.

Paul Lee was a human being made of the same stuff we all are made of, and his mother, father, sister are all made of the same stuff we are all made of.  Paul Lee suffered.  Paul Lee, a big, noticeable guy who was simply wired in a different way and couldn’t process what to do to help himself, died because no one thought to do one little extra thing on that hot, hot day in California.  No one walked to the back of the bus.  No one called his mom to ask why he wasn’t at school.

You can argue that his mom should’ve called the school to make sure he got there, but the thing is that we put our kids on the bus and WHERE ELSE COULD THEY POSSIBLY GO?  We are surrendering custody, for several hours a day, of a child, an adult who cannot do for his/herself, and who we trust the school will look after.  We know that our child/adult is just another kid in the system, but we have been asked to trust the expertise of the system, the processes put in place for the benefit of our child, and we DO!

Autism is a very complex thing.  Outwardly, our kids might seem as regular as the next guy.  J, with his shorts, his Doctor Who t-shirts, his headphones, his backpack, will look as if he’s just another big dude ambling through life without a care in the world.  Girls flirt with him until they realize there’s something “off” about him; people get offended when he doesn’t say “hi” if they don’t know him.  J will sit there and not say a word for hours on end, and I am constantly checking on him to make sure that he’s fine.  That doesn’t make me paranoid…that just means I KNOW that he is capable of long silences during which something can happen.

People are saying “well, his family’s getting a boatload of money out of a lawsuit.”  Yeah, I’m sure that’s their main focus right now.  Their kid is dead; their kid SUFFERED for HOURS, and he’s never coming home, and he’s never going to need another bath, and he’s never going to have another milestone and MONEY will make up for it…  Yes, yes…that’s the upside of all this, some people will tell you.  Can you imagine what comes next?  If they file a lawsuit, how they will be scrutinized and criticized and lambasted?  On top of grief, they will have a public flogging because that’s the way civil lawsuits play out…

But Paul Lee matters more than that.  Paul Lee is the embodiment of a system that doesn’t quite work, and he is proof that people just don’t understand.  Awareness is a pretty word, and puzzle logos are awesome…but we’re still missing the mark.

The Lees will tell you that, and they will never forget how wide off the mark the system was for their son.