Keeping It Real

In almost two years and a lot of infrequent postings, I've shared a fair amount.  I'm no Mary Poppins, but I've mostly shared the lighter side of things.  The victories.  The lessons learned.  The occasional righteous indignation.

I suppose that's less than honest of me.  The truth is, no matter how much I love my kids, some days suck.  Badly.  Today is one of them.

Brandon will move up to middle school this coming fall.  In another world, tomorrow would have been graduation day.  We should have been marking this momentous occasion all year long, as an elementary school senior, with a senior t-shirt and autograph book and yearbook, with a senior trip.  It should be a time for excitement and an awareness of a major milestone achieved.  Today I should have been making sure that cap, gown, and camera are all ready.  

Instead, today I got a phone call that my son bit one of his classmates.  That no matter what cool stuff was going on all day (a trip to a park, ice cream, a school end of year celebration), he could only focus on a set of bird print outs he had brought in and wanted cut out for him.  Today I got a reminder that I've been having a year long battle with his school simply to have him moved up to the upper school classroom in the fall in the first place.  They thought he should stay in the lower school.  I maintained that no matter what they thought, he is certainly aware of what being left back is.  You can sugar coat it any which way - that the classrooms are ungraded and therefore it's not the same thing - but he will understand that his friends moved on, he didn't, and that it amounts to being left back.  Eventually my perspective won.  My perspective doesn't get to walk down an aisle and celebrate that accomplishment.  

I know it's not polite in some autism circles to talk about the hard.  I call bullshit.  I fully understand - and believe it to be true - that most of the hard is not directly autism.  Autism doesn't cause there to be a dearth of good schooling options for kids on the spectrum - bureaucracy does that.  Bureaucracy caused the best choice we could make for Brandon to be a self-contained school with ungraded classrooms that go all the way up through middle school.  Bureaucracy and the paucity of appropriate high school placements may cause us to move Brandon earlier than that, causing us to once again be robbed of a graduation.  Of what for an NT child would be a milestone marked by ceremony.  As a parent, for me, that's hard to swallow.  I shouldn't - and don't - blame any of this on my son or on autism.  But I won't claim that it isn't hard and it doesn't suck.  And I should be allowed to talk about it.  

I realize this pity party is all mine.  My son is just fine with how his day went, biting the classmate notwithstanding.  That's as it should be.  He doesn't need to be aware that I spent all year fighting for his right to move on to middle school.  Or that I'm acutely aware that I will not be at a graduation tomorrow.  These are my fights.

But the truth is, some days suck.  Badly.  Today is one of them.

Warm Fuzzies?

I’ve noticed a trend in the news lately.  It’s a series of “feel good” articles about autism.  You’ve seen them – autistic kids get voted prom king and queen, autistic athlete does good, etc.  The latest one posted by a friend features the story of a small boy in love with garbage trucks that’s become friendly with his local sanitation guy.  Said sanitation guy recently brought him his own toy garbage truck to play with.  Mom happened to be outside taking video that day, and posted it for her friends and family.  Instead, it went viral, and everyone is having the warm fuzzies over it.  Inevitably, being the mom of an autistic child, most of these stories make their way into my Facebook news feed.  Several of them get posted directly to my page. 

Now, I’m a warm and fuzzy kind of gal.  I can “aww”, smile, cry, and get sappy over feel good news with the best of them. 

These articles do not give me the warm fuzzies.  In fact, they kind of make me want to throw up a little.

For those of you now asking, “Who pissed in her coffee this morning?” the answer is no one.  And everyone. 

Here’s my fundamental problem with these stories:  They’re supposed to be shining examples of autism awareness at their finest.  Inclusion done well.  For me, they leave a bad taste in my mouth.  Awareness done right leads to support and true inclusion.  True inclusion is an environment where autistic people are valued for themselves – where there’s a recognition that they bring as much to the table as their NT peers.  It’s not “peer mentorship”, or being buddied up with someone who sees it as their feel good project and a line about how great they are for working with “those kids” on their college resume.  It makes for a really sweet story when a young woman decides that the autistic kid shouldn’t be left out of the prom and offers herself up as his date.  But what happens afterward?  What are you going to say when he calls your house?  Asks you for a date?  Thinks that you’re his friend and wants to hang out with you and your buddies? 

The video of the little boy being given the garbage truck is undeniably sweet.  But what are we saying about the worth of autistic people when something like this goes viral?  In a way, what we’re saying is that we’re all warm and fuzzy because he was noticed.  And I find it terribly, terribly sad that the act of noticing an autistic child – an autistic person of any age - is still news. 

So go ahead and be amazed at the Jason McElwains of the world – their abilities are, indeed, amazing.  I also ask, though, that you think about that story critically.  Would his feat on the basketball court have been seen as so amazing if he hadn’t been identified as autistic?  Isn’t the real story a question of why he was only allowed to play in those few minutes of that single game all year long?  Shouldn’t we be asking why his coach hadn’t been spending all year discovering and developing his talent, instead of praising him for allowing those handful of minutes, only after he was sure that his team was already assured the win? 

Autistic people of all ages, and all abilities, should be noticed.  They should be included.  For themselves – for who they are, as amazing, autistic people, worthy of being known in their own right.  That’s the non-story that I want to see.  That’s when I’ll get the warm fuzzies.